Reading the newspaper the other day, I stumbled across a notice for a seminar being held called "Anticipatory Grief." While I was familiar with the concept, I had never seen this name for the situation. It really jumped out at me because it truly sums it up in two words.
Anticipatory Grief is just what it sounds like. Often, when caring for someone with a lengthy terminal illness such as dementia, you end up going through the grieving process while they are still alive. Some, so much so, that when their loved one finally dies, that they feel only relief.
Dementia of all types is a disease that can bring on this early grieving process. We already know how much of a toll caring for a loved one with dementia takes on the caregiver. Add in the fact that they are also grieving for the loss of who that person used to be and you have a tough and sad situation. It is so much that you are grieving that they have dementia or that they are slowly dying. A lot of it is grieving for what the loved one was and what you believe they could have been.
I have experienced this more than once. The first was when my grandmother was slowing dying due to dementia. I was very close to Grandma and my Grandpap. During my junior and senior high school years, I would spend the bulk of the summer at their home in rural northeastern Pennsylvania. I loved the calmness of the environment and the love that surrounded me. At home, my parents were working their way to a divorce and it was always a stressful place to be. Grandma's was only a 3-hour drive away, but it seemed like an entirely different world. She could be a blast! She had a lot of joint pain, but would break out and dance the Charleston for me. She got me hooked on baseball while we sat out on the sunporch and listened to the Pirate games. I learned to drive their little tractor early on, then later Grandpap let me practice driving his car. Grandma never did drive.
Watching this woman's joy of living and her love for me and the rest of the family was a horrid experience. I spent a lot of the time in denial. I was not her primary caregiver, my mom was, but I visited often enough to watch her deteriorate in front of my eyes. Yes, there were fun moments, like the time my aunt had sent her chocolates and she hid them in her bra to prevent anyone getting to them before she could eat them all. Poor mom was cleaning her chest for a week. It was those chocolates covered with tiny candy balls on them and those balls hid in every wrinkle and fold for days! By the time Grandma actually died, I had already grieved enough that I did indeed only feel relief that she was no longer trapped in that body whose brain no longer functioned.
It was the same with my mother while she was slowly dying from dementia. One of the saddest days of my life was the day she finally forgot how to walk. I grieved for who she was and I was relieved when her body finally gave out. In between the deaths of Grandma and Mom, I dealt with my other grandmother dying, not of dementia, but with a variety of illnesses and multi-organ failure. Many extended family members thought there was something wrong with me, because at her funeral, I was not crying and looking sad. In fact, I was almost happy. They did not understand that I had already grieved for her and was happy that she was in a place with no suffering.
The only exception was when my favorite aunt, my mom's sister, also was suffering from dementia. This woman was my savior. She got me through a lot of my life issues, especially during my teenage years. At her house, I always knew I was loved. Yes, I was one of her caregivers through her dementia and watched her slip away from me and did go through the grieving process during that time. I sat for hours upon hours at her bedside after she was in the nursing home and hospital, but with her, after she died, I grieved all over again.
The seminar was being conducted at our local hospital by the hospital's chaplains. I would hope that it was going to address the guilt that many have after their loved one with finally dies, guilt that they are not grieving again. In many cases, the grieving does come back as you start remembering more and more about who they were and who they could have been. At least that was the way it happened for me.
I had no interest in attending their seminar. I already understood how it works and have done a lot of reading about the subject through the years. I have already discussed it with a couple different therapists. Now, with the loss of brain to mouth filters from FTD, when the pastors started offering their two cents worth, it is hard to tell what I might have told them!
Saturday, July 2, 2016
Sunday, June 26, 2016
Grrrrrrrr...
Nothing frustrates me more than to hear those who are caregivers for someone with FTD start to complain about the one they are caring for. This is especially true when I realize that the caregiver has no clue what to expect from someone with FTD. While no two cases of FTD seems to be the same, there are some basics that would be easy to learn about by doing just a tiny bit of research. I cannot imagine being responsible to care for someone with a disease and not reading up on it so I would know what to expect.
Today, I read something where a caregiver was complaining because the person they were caring for didn't do anything, spends too much time in bed and on the couch, won't run errands or make household repairs. People who have FTD tend to sleep and/or rest a lot. It takes an extraordinary amount of energy to exist with this disease. You know that exhausted feeling you get when you had a bad day at work trying to figure out the solution to problems that kept arising? You get home from work feeling like you had just done ten hours of hard physical labor. With FTD, you have this constantly. Remember me talking so often about the loss of executive functioning? That loss comes into play here. Every little task becomes like those problems you needed to resolve at work. A simple task. that we used to do by rote but now must be broken into itty-bitty pieces in order to accomplish anything, exhausts the functioning parts of the brain and easily results in overload. That quick fifteen minute trip to a store is long enough to cause sensory overload that wears out the brain and the body.
I can no longer clean my house in one day. I am lucky if I can clean an entire room in one day. I have to remember where the cleaning supplies are. Now, if they were all in one place, that might help, but that is a story for another day. They I have to try to remember which products to use where. I have to remember not to use window cleaner on the wood furniture or the furniture polish on the window. Yes, I have done both. Remembering how the vacuum cleaner gets turned on and how to vacuum the room while getting around the furniture can be a puzzle. Uh-oh, someone just asked me a question that I must strain my mind to answer, now I have to start figuring out the cleaning puzzle all over again. When I have finished, if I can finish, that one room, I am exhausted... mentally and physically. Hopefully you can grasp how this works. Apparently a lot of caregivers cannot. "Simple" household repairs don't exist anymore. They are now a major task.
I am in bed at night for nearly 12 hours each nigh. I don't sleep all 12 because my brain doesn't turn off very quickly. Hopefully, out of those 12 hours, I can get seven or eight hours of real sleep. I often wake up in the morning feeling more tired than I did when I went to bed. I cannot say for sure, but I suspect some of that may be due to the bizarre dreams I experience since the onset of FTD. I don't often tell people how long I stay in bed at night or I will get very judgmental reactions.
In addition, on a day that I do, or attempt to do, a physical task or something that causes sensory overload, I will need to either take a nap or retreat to my quiet place for a couple hours to recharge.
It can be very "simple" things that trigger my sensory overload or mental exhaustion. It can be walking outside to do something, especially in the yard, because I have to focus on my balance and trying not to fall in addition to the task I went out to do. Even using my cane does not help much on uneven ground. It can be someone stopping by the house or even a phone call. Those things usually involve me trying to fit together the puzzle pieces of what they are talking about and coming up with answers. This is especially true if it involves a stressful or upsetting subject. I could go on and on with examples.
The bottom line here is that if you look up FTD on the internet, you are going to quickly learn about the loss of executive functioning, the struggle to do simple tasks, the difficulty making decisions, making poor decisions, loss of balance and many, many more. I wonder if someone suddenly became the caretaker of someone with diabetes or cancer, would they not try to read up on how to best care for that person? So why would someone not do that when they are caring for someone with a brain disease.
Perhaps it is just as simple as the people who don't believe we don't have a disease because "You look wonderful." or "You don't look sick at all." Others don't believe there is anything wrong with your brain until you lose your memory. I get very frustrated, and sometimes angry, when friends, family and acquaintances say things like this because I feel they are thinking I have a mental illness or am a hypochondriac. I don't expect these people to research FTD (though I wish everyone would learn about it) so I can understand how they are reluctant to accept my diagnosis. But for a caregiver? To me this is unforgivable.
Every time I hear or read about a caretaker who has obviously not learned about FTD, I am thankful that I don't have to deal with that ignorance. I am fortunate that my family, and a small handful of friends, care enough that they have learned about the disease. I cannot imagine having to live with someone who has not.
Today, I read something where a caregiver was complaining because the person they were caring for didn't do anything, spends too much time in bed and on the couch, won't run errands or make household repairs. People who have FTD tend to sleep and/or rest a lot. It takes an extraordinary amount of energy to exist with this disease. You know that exhausted feeling you get when you had a bad day at work trying to figure out the solution to problems that kept arising? You get home from work feeling like you had just done ten hours of hard physical labor. With FTD, you have this constantly. Remember me talking so often about the loss of executive functioning? That loss comes into play here. Every little task becomes like those problems you needed to resolve at work. A simple task. that we used to do by rote but now must be broken into itty-bitty pieces in order to accomplish anything, exhausts the functioning parts of the brain and easily results in overload. That quick fifteen minute trip to a store is long enough to cause sensory overload that wears out the brain and the body.
I can no longer clean my house in one day. I am lucky if I can clean an entire room in one day. I have to remember where the cleaning supplies are. Now, if they were all in one place, that might help, but that is a story for another day. They I have to try to remember which products to use where. I have to remember not to use window cleaner on the wood furniture or the furniture polish on the window. Yes, I have done both. Remembering how the vacuum cleaner gets turned on and how to vacuum the room while getting around the furniture can be a puzzle. Uh-oh, someone just asked me a question that I must strain my mind to answer, now I have to start figuring out the cleaning puzzle all over again. When I have finished, if I can finish, that one room, I am exhausted... mentally and physically. Hopefully you can grasp how this works. Apparently a lot of caregivers cannot. "Simple" household repairs don't exist anymore. They are now a major task.
I am in bed at night for nearly 12 hours each nigh. I don't sleep all 12 because my brain doesn't turn off very quickly. Hopefully, out of those 12 hours, I can get seven or eight hours of real sleep. I often wake up in the morning feeling more tired than I did when I went to bed. I cannot say for sure, but I suspect some of that may be due to the bizarre dreams I experience since the onset of FTD. I don't often tell people how long I stay in bed at night or I will get very judgmental reactions.
In addition, on a day that I do, or attempt to do, a physical task or something that causes sensory overload, I will need to either take a nap or retreat to my quiet place for a couple hours to recharge.
It can be very "simple" things that trigger my sensory overload or mental exhaustion. It can be walking outside to do something, especially in the yard, because I have to focus on my balance and trying not to fall in addition to the task I went out to do. Even using my cane does not help much on uneven ground. It can be someone stopping by the house or even a phone call. Those things usually involve me trying to fit together the puzzle pieces of what they are talking about and coming up with answers. This is especially true if it involves a stressful or upsetting subject. I could go on and on with examples.
The bottom line here is that if you look up FTD on the internet, you are going to quickly learn about the loss of executive functioning, the struggle to do simple tasks, the difficulty making decisions, making poor decisions, loss of balance and many, many more. I wonder if someone suddenly became the caretaker of someone with diabetes or cancer, would they not try to read up on how to best care for that person? So why would someone not do that when they are caring for someone with a brain disease.
Perhaps it is just as simple as the people who don't believe we don't have a disease because "You look wonderful." or "You don't look sick at all." Others don't believe there is anything wrong with your brain until you lose your memory. I get very frustrated, and sometimes angry, when friends, family and acquaintances say things like this because I feel they are thinking I have a mental illness or am a hypochondriac. I don't expect these people to research FTD (though I wish everyone would learn about it) so I can understand how they are reluctant to accept my diagnosis. But for a caregiver? To me this is unforgivable.
Every time I hear or read about a caretaker who has obviously not learned about FTD, I am thankful that I don't have to deal with that ignorance. I am fortunate that my family, and a small handful of friends, care enough that they have learned about the disease. I cannot imagine having to live with someone who has not.
Sunday, June 19, 2016
Father's Day
This blog is not really about FTD, but since it is weighing on my mind today and I have FTD, I am going to write about it anyway. Some of us with FTD can appear selfish anyway, so today I will be. Before I am finished, I will get to a connection with FTD.
Today is Father's Day. I could not figure out why this year, more than 20 years after his death, why it was hitting me so hard. That was when I remembered it was also his birthday. It would have been 83.
My dad did not have FTD nor dementia of any type. He did however have a brain tumor. Despite what some members of my family insist, it was a benign tumor, but it kept growing. Years before his death, he received radiation treatments that shrunk the tumor enough that it relieved the pressure and the symptoms. He refused surgery, even though the tumor was operable, because he could not be given a 100% guarantee that it would be successful and he could not accept any of the possible outcomes should it be less than a complete success. Are you getting the idea that he was just a tad stubborn? You would be right, but it was a whole lot more than a tad!
Ten years or so after the radiation treatments, the tumor regrew enough that the symptoms returned. He became clumsy, needing to walk with a walking stick, had great difficulty making decisions and constantly worried about things. Hmmm... does sound a lot like FTD, doesn't it? Amazing how so many brain diseases can mimic each other.
He would not discuss nor consider receiving treatment again. He decided to sell the old family home and move into a townhouse. I spent a week at his place, helping to organize and pack. He was relying on me for a lot of things by then even though I was living four hours away. He would call and talk just about everything over with me before making a decision. He began calling me "crutch" because he couldn't seem to do anything without my help or support.
It worked both ways though. I would do the same. I would call and talk things over with him all the time. He was the only one who would tell me like it was, no coddling, yet still gentle, wise and helpful. He would also drop everything and come for a visit when I needed some things done around the house.
On my birthday, 22 years ago, my father took his own life. He could no longer accept living with the effects of the brain tumor. I was angry for a long time because I knew he could have received treatments or surgery, angry that, now that we had such a close and wonderful relationship, he left me.
My dad was not always this considerate, affectionate and supportive man. I lived a life with two fathers. The first one was extremely controlling, critical, unyielding and demanding. He was verbally abusive to my mother and verbally and physically abusive to my sister and me. He made our lives miserable. My mother left us the summer before my senior year of high school, not offering to take my sister or me with her. That made things every worse. My sister was off to nursing school, so I was the only one for him to take everything out on. I moved out of his house the day before high school graduation and didn't look back.
Even though no longer living with him, he still managed to be judgmental and critical of me and my life. A year or so after moving out, I was hospitalized and was facing major surgery at the age of 18. He came to visit me the evening before the surgery. I worked at the same hospital and, of course had many friends there. One stopped by while he was there. My friend was ten years older than me and, yes, we had gone out on a few dates but we were more friends than anything else. My dad was very cold to him and lectured me for 15 minutes after he had left. Criticizing me for having someone that much older than me in my life and how he obviously only wanted me for sex. Uh, no... we hadn't gone there. Not a good thing, to upset your daughter so much the evening before major surgery.
A couple days after my surgery, I learned that his girlfriend had waited in the car while he had visited with and lectured me about having a friend so much older. Turned out that his girlfriend was one of my classmates. I guess he was transferring his feeling for her over to my relationship with my friend. It was after that when I closed my dad out of my life as much as possible for eight years.
When our daughter was born, I decided they deserved to know each other and that I would give him a chance. Turned out that I now had a totally different father. He adored my daughter and she adored him. He was now the supportive and loving man that I wished I had had all along. It was at this time that our wonderful relationship became to flourish. He and I talked all night one night while he was visiting and he apologized for the way he had been. He said to me "Why, when I had you out shooting, did you not just aim at me before pulling the trigger?" He had watched a made-for-tv movie about the Melendez brothers who killed their parents who were not nearly as bad as he was and it hit home. I explained that I was so desperate for his approval that I could not have done that.
My second dad was an amazing man and I am so thankful that I had those later years with him. He and my sister never connected on the level that he and I had in these later years, so she only ever had the first dad. I wish they could have known each other.
Now, I will relate this lengthy story back to FTD. Now, after dealing with FTD for several years, I understand his decision to take his own life. He was a proud man who was a true jack-of-all-trades and lived an active, mostly outdoors, lifestyle. To become the man that the tumor was reducing him to was not something he could live with. He knew I would continue being his crutch and would take care of him no matter how bad his health, but he could not live with that either. I forgave him for being the first dad and I eventually forgave him for leaving me.
Happy Father's Day and Happy Birthday, Dad... I miss you and I love you... always and forever.
Today is Father's Day. I could not figure out why this year, more than 20 years after his death, why it was hitting me so hard. That was when I remembered it was also his birthday. It would have been 83.
My dad did not have FTD nor dementia of any type. He did however have a brain tumor. Despite what some members of my family insist, it was a benign tumor, but it kept growing. Years before his death, he received radiation treatments that shrunk the tumor enough that it relieved the pressure and the symptoms. He refused surgery, even though the tumor was operable, because he could not be given a 100% guarantee that it would be successful and he could not accept any of the possible outcomes should it be less than a complete success. Are you getting the idea that he was just a tad stubborn? You would be right, but it was a whole lot more than a tad!
Ten years or so after the radiation treatments, the tumor regrew enough that the symptoms returned. He became clumsy, needing to walk with a walking stick, had great difficulty making decisions and constantly worried about things. Hmmm... does sound a lot like FTD, doesn't it? Amazing how so many brain diseases can mimic each other.
He would not discuss nor consider receiving treatment again. He decided to sell the old family home and move into a townhouse. I spent a week at his place, helping to organize and pack. He was relying on me for a lot of things by then even though I was living four hours away. He would call and talk just about everything over with me before making a decision. He began calling me "crutch" because he couldn't seem to do anything without my help or support.
It worked both ways though. I would do the same. I would call and talk things over with him all the time. He was the only one who would tell me like it was, no coddling, yet still gentle, wise and helpful. He would also drop everything and come for a visit when I needed some things done around the house.
On my birthday, 22 years ago, my father took his own life. He could no longer accept living with the effects of the brain tumor. I was angry for a long time because I knew he could have received treatments or surgery, angry that, now that we had such a close and wonderful relationship, he left me.
My dad was not always this considerate, affectionate and supportive man. I lived a life with two fathers. The first one was extremely controlling, critical, unyielding and demanding. He was verbally abusive to my mother and verbally and physically abusive to my sister and me. He made our lives miserable. My mother left us the summer before my senior year of high school, not offering to take my sister or me with her. That made things every worse. My sister was off to nursing school, so I was the only one for him to take everything out on. I moved out of his house the day before high school graduation and didn't look back.
Even though no longer living with him, he still managed to be judgmental and critical of me and my life. A year or so after moving out, I was hospitalized and was facing major surgery at the age of 18. He came to visit me the evening before the surgery. I worked at the same hospital and, of course had many friends there. One stopped by while he was there. My friend was ten years older than me and, yes, we had gone out on a few dates but we were more friends than anything else. My dad was very cold to him and lectured me for 15 minutes after he had left. Criticizing me for having someone that much older than me in my life and how he obviously only wanted me for sex. Uh, no... we hadn't gone there. Not a good thing, to upset your daughter so much the evening before major surgery.
A couple days after my surgery, I learned that his girlfriend had waited in the car while he had visited with and lectured me about having a friend so much older. Turned out that his girlfriend was one of my classmates. I guess he was transferring his feeling for her over to my relationship with my friend. It was after that when I closed my dad out of my life as much as possible for eight years.
When our daughter was born, I decided they deserved to know each other and that I would give him a chance. Turned out that I now had a totally different father. He adored my daughter and she adored him. He was now the supportive and loving man that I wished I had had all along. It was at this time that our wonderful relationship became to flourish. He and I talked all night one night while he was visiting and he apologized for the way he had been. He said to me "Why, when I had you out shooting, did you not just aim at me before pulling the trigger?" He had watched a made-for-tv movie about the Melendez brothers who killed their parents who were not nearly as bad as he was and it hit home. I explained that I was so desperate for his approval that I could not have done that.
My second dad was an amazing man and I am so thankful that I had those later years with him. He and my sister never connected on the level that he and I had in these later years, so she only ever had the first dad. I wish they could have known each other.
Now, I will relate this lengthy story back to FTD. Now, after dealing with FTD for several years, I understand his decision to take his own life. He was a proud man who was a true jack-of-all-trades and lived an active, mostly outdoors, lifestyle. To become the man that the tumor was reducing him to was not something he could live with. He knew I would continue being his crutch and would take care of him no matter how bad his health, but he could not live with that either. I forgave him for being the first dad and I eventually forgave him for leaving me.
Happy Father's Day and Happy Birthday, Dad... I miss you and I love you... always and forever.
Sunday, June 12, 2016
Subgroups of FTD - bvFTD
I haven't written, for quite a while, on just what FTD is and the symptoms and different types.
There are many subgroups of FTD. All are related to the frontal and temporal lobes of the brain. Not only are there a variety of subgroups but many, if not most, of those diagnosed with FTD have a combination of more than one. I call it alphabet soup. I know I have written previously that my diagnosis is officialy bvFTD with MND.
bvFTD seems to be one of the most common. Don't ask me to back that up with scientific proof. It is just that it comes up a lot. In many cases that I know of, the diagnosis of bvFTD is the first diagnosis and as other symptoms appear, more subgroups are added on. That is true in my case.
bvFTD used to be called Pick's Disease. More people seem to be aware of that name rather than the terminology of FTD. Whatever you call it doesn't matter. It is still devastating.
bvFTD causes changes in behavior and personality. Many who are affected show signs of losing their inhibitions, acting more impulsively, making inappropriate comments and many more. Losing inhibitions could include dressing inappropriately, making inappropriate comments and forgetting all manners that used to come naturally. Examples of the loss of impulse control can include making sudden purchases without thinking it through, such as "Can I afford this?" of "What will I do with this?" Making inappropriate comments is self explanatory. It ruins relationships, both family and friends, as it offends them or makes them uncomfortable to be around the person with FTD.
I skipped right over the loss of impulse control intentionally. To me, it is the most dangerous. It amazes me how often I, and many whom I talk with, grab hot pans out of the oven without remembering potholders, or trying to turnover sizzling bacon with the fingers. It can lead to walking out in front of cars or, if still driving, turning in front of another car because you know you want to be in the store across the street. This is what finally led to me turning in my keys. I was driving by myself, saw a local eatery and decided to pick up some dinner. I saw it, so I swung left into the parking lot. I forgot about checking to see if there were cars coming at me. There were, and many choice words were thrown at me. It truly could have caused a horrible accident.
It also often causes apathy. It takes away your motivation to do things, even every day activities. Some need to be reminded to attend to their hygiene or something as simple as not wearing the same clothes every day.
Tied in the the apathy is the loss of empathy. Someone who was always concerned about everyone else can become the total opposite. They can hear about bad things happening to people and react with a 'so what' attitude. It can also lead to avoiding interaction with people... family, friends, acquaintances and even strangers. It is often this loss of empathy to lead to withdrawing from previously enjoyed activities and being around other people.
One of the biggest changes is dietary. bvFTD can trigger a greatly increased craving for sweets and carbohydrates, binge eating and/or eating a meal very quickly. Obviously, this can lead to weight gain, but also to malnutrition.
One of the main symptoms discussed between doctors and patients is the loss of 'executive functioning' which is often the first visible sign that something is wrong. I explain executive functioning as trying to get your brain to think of more than one thing. Examples can include planning ahead, making decisions, learning new skills or being easily distracted. One of the examples I use is losing the inability to follow a recipe. Following the recipe includes organizing, planning ahead and focusing on more than one thing.
Another visible sign is the speech. You might detect changes in speech patterns, struggling to find correct words and/or struggling to get the words out. Your brain knows what it wants to say, but your mouth just won't cooperate. bvFTD can also cause someone to struggle understanding what other people are saying. It can also lead to forgetfulness. I will often be talking, and half way through the sentence come to an abrupt stop because I cannot remember what I was saying. I won't go into a list of other things that can be forgotten, such as names of people and things, what you normally do and on and on.
I will try to write about more of the subgroups in the next few weeks. Of course, I may not remember.
There are many subgroups of FTD. All are related to the frontal and temporal lobes of the brain. Not only are there a variety of subgroups but many, if not most, of those diagnosed with FTD have a combination of more than one. I call it alphabet soup. I know I have written previously that my diagnosis is officialy bvFTD with MND.
bvFTD seems to be one of the most common. Don't ask me to back that up with scientific proof. It is just that it comes up a lot. In many cases that I know of, the diagnosis of bvFTD is the first diagnosis and as other symptoms appear, more subgroups are added on. That is true in my case.
bvFTD used to be called Pick's Disease. More people seem to be aware of that name rather than the terminology of FTD. Whatever you call it doesn't matter. It is still devastating.
bvFTD causes changes in behavior and personality. Many who are affected show signs of losing their inhibitions, acting more impulsively, making inappropriate comments and many more. Losing inhibitions could include dressing inappropriately, making inappropriate comments and forgetting all manners that used to come naturally. Examples of the loss of impulse control can include making sudden purchases without thinking it through, such as "Can I afford this?" of "What will I do with this?" Making inappropriate comments is self explanatory. It ruins relationships, both family and friends, as it offends them or makes them uncomfortable to be around the person with FTD.
I skipped right over the loss of impulse control intentionally. To me, it is the most dangerous. It amazes me how often I, and many whom I talk with, grab hot pans out of the oven without remembering potholders, or trying to turnover sizzling bacon with the fingers. It can lead to walking out in front of cars or, if still driving, turning in front of another car because you know you want to be in the store across the street. This is what finally led to me turning in my keys. I was driving by myself, saw a local eatery and decided to pick up some dinner. I saw it, so I swung left into the parking lot. I forgot about checking to see if there were cars coming at me. There were, and many choice words were thrown at me. It truly could have caused a horrible accident.
It also often causes apathy. It takes away your motivation to do things, even every day activities. Some need to be reminded to attend to their hygiene or something as simple as not wearing the same clothes every day.
Tied in the the apathy is the loss of empathy. Someone who was always concerned about everyone else can become the total opposite. They can hear about bad things happening to people and react with a 'so what' attitude. It can also lead to avoiding interaction with people... family, friends, acquaintances and even strangers. It is often this loss of empathy to lead to withdrawing from previously enjoyed activities and being around other people.
One of the biggest changes is dietary. bvFTD can trigger a greatly increased craving for sweets and carbohydrates, binge eating and/or eating a meal very quickly. Obviously, this can lead to weight gain, but also to malnutrition.
One of the main symptoms discussed between doctors and patients is the loss of 'executive functioning' which is often the first visible sign that something is wrong. I explain executive functioning as trying to get your brain to think of more than one thing. Examples can include planning ahead, making decisions, learning new skills or being easily distracted. One of the examples I use is losing the inability to follow a recipe. Following the recipe includes organizing, planning ahead and focusing on more than one thing.
Another visible sign is the speech. You might detect changes in speech patterns, struggling to find correct words and/or struggling to get the words out. Your brain knows what it wants to say, but your mouth just won't cooperate. bvFTD can also cause someone to struggle understanding what other people are saying. It can also lead to forgetfulness. I will often be talking, and half way through the sentence come to an abrupt stop because I cannot remember what I was saying. I won't go into a list of other things that can be forgotten, such as names of people and things, what you normally do and on and on.
I will try to write about more of the subgroups in the next few weeks. Of course, I may not remember.
Friday, June 3, 2016
Pets
Just the word "pet" conjures up soothing and calming thoughts, at least to me. Other things I think of are fun, playful and great company. The downside is I also think of walking, cleaning up poop and cleaning a litter box.
I am thinking of this today because a three friends lost their beloved pets this week. What can you say to them except that you understand, that you love them and, if you believe, will pray for them. Losing a pet leaves a huge void in a person's life. Anyone who is lucky enough to have a loving pet will understand my friends' grief. I still miss my loving cat, Schnookers even though it has been almost five years since we lost him. I still see him sometimes out of the corner of my eye. I still feel him jump up on my bed to snuggle.
I have had quite a few pets in my life, especially when my daughter was growing up. She brought home everything from a sugar glider to a corn snake. She had no fear of any creature. The only time I rejected one of her pets, it was a ferret. We discovered, very quickly, that I am highly allergic to ferrets.
Not counting her pets, I grew up with a dog and a couple cats. After leaving home, we almost always had a cat in our life. Schnookers, though, was special to me. I went through a fight with cancer, Hodgkin's Lymphoma about eight years ago. The battle lasted about six months and I won. During the treatments, I was sick a lot. My body did everything it could to get rid of the chemo and radiation. That cat was beside me the entire way. If I was lying in bed, he was lying there with me, with his head on the pillow next to mine. If I was kneeling over the toilet, he was sitting there with me. Even though, at that time, I was not the one caring for him, he chose to stay with me and offer comfort.
That's what our pets do for us. I always say that our pets are truly the ones who offer us unconditional love. When I was still working, when I came home after a particularly tough day, sitting down, reading the paper or having a cup of tea and he would settle on my lap, demanding nothing in return.
I even know of some people with FTD who have service dogs. They do anything from comforting, to helping with balance issues and, in one case, pulling a wheelchair. These animals go a step beyond... being a pet and a working dog. I can only imagine how close the two become.
As much as I crave the companionship, I will never have another pet. My beloved Schnookers was showing signs of being ill. After he died, a few people reminded me that the had mentioned that they had told me this. Thanks to FTD, it didn't truly register what they were saying. One said, "He is so thin." His breed of cat tends to be long and lean, so I thought it was a complement. I don't know what I thought the other times, but no one said that he looked sick and I should take him to the veterinarian. Not much room for subtlety for me.
I believe I let him down. If it had registered in my brain what the others were saying, if I had noticed myself how thin he was getting and taken him to the vet when it first started, maybe he could have been cured. I will never, ever, take on that responsibility on myself again.
I know how much comfort they can be and I have often mentioned to others that they consider a pet, but only if they are capable of providing the care the pet needs. I know that if he were still here with me, Schnookers would be an excellent caregiver for me. Wishful thinking, but I know he is happy that this week he gained a few friends in heaven.
I am thinking of this today because a three friends lost their beloved pets this week. What can you say to them except that you understand, that you love them and, if you believe, will pray for them. Losing a pet leaves a huge void in a person's life. Anyone who is lucky enough to have a loving pet will understand my friends' grief. I still miss my loving cat, Schnookers even though it has been almost five years since we lost him. I still see him sometimes out of the corner of my eye. I still feel him jump up on my bed to snuggle.
I have had quite a few pets in my life, especially when my daughter was growing up. She brought home everything from a sugar glider to a corn snake. She had no fear of any creature. The only time I rejected one of her pets, it was a ferret. We discovered, very quickly, that I am highly allergic to ferrets.
Not counting her pets, I grew up with a dog and a couple cats. After leaving home, we almost always had a cat in our life. Schnookers, though, was special to me. I went through a fight with cancer, Hodgkin's Lymphoma about eight years ago. The battle lasted about six months and I won. During the treatments, I was sick a lot. My body did everything it could to get rid of the chemo and radiation. That cat was beside me the entire way. If I was lying in bed, he was lying there with me, with his head on the pillow next to mine. If I was kneeling over the toilet, he was sitting there with me. Even though, at that time, I was not the one caring for him, he chose to stay with me and offer comfort.
That's what our pets do for us. I always say that our pets are truly the ones who offer us unconditional love. When I was still working, when I came home after a particularly tough day, sitting down, reading the paper or having a cup of tea and he would settle on my lap, demanding nothing in return.
I even know of some people with FTD who have service dogs. They do anything from comforting, to helping with balance issues and, in one case, pulling a wheelchair. These animals go a step beyond... being a pet and a working dog. I can only imagine how close the two become.
As much as I crave the companionship, I will never have another pet. My beloved Schnookers was showing signs of being ill. After he died, a few people reminded me that the had mentioned that they had told me this. Thanks to FTD, it didn't truly register what they were saying. One said, "He is so thin." His breed of cat tends to be long and lean, so I thought it was a complement. I don't know what I thought the other times, but no one said that he looked sick and I should take him to the veterinarian. Not much room for subtlety for me.
I believe I let him down. If it had registered in my brain what the others were saying, if I had noticed myself how thin he was getting and taken him to the vet when it first started, maybe he could have been cured. I will never, ever, take on that responsibility on myself again.
I know how much comfort they can be and I have often mentioned to others that they consider a pet, but only if they are capable of providing the care the pet needs. I know that if he were still here with me, Schnookers would be an excellent caregiver for me. Wishful thinking, but I know he is happy that this week he gained a few friends in heaven.
Sunday, May 29, 2016
Sticks and Stones...
Every little kid hears that age old expression of "Sticks and stones may break my bones, but words will never hurt me."
I hate to tell you, but who ever came up with this expressions was lying to a kid. These days, the other kid who is hurling the bad names or nasty words would most likely be accused of bullying. Within the two extremes, hopefully a happy medium exists there somewhere.
Words do hurt. Often, the words can hurt just as much as physical wounds. Add in skeptical looks and your day can be ruined. I have written about this issue several times, so I am aware of the issue and perhaps should be able to shrug it off by now, but I cannot.
What worsens those words and looks is the already instilled frustration of being limited in the things I can do, things that I used to be able to do, almost without consciously thinking about what I was doing.
Yesterday morning, I dragged myself out of bed by 7 a.m. (way before my brain kicks into gear) to head to our church parking lot for its spring festival. I had suggested to a friend that she rent a table space and attempt to sell her beautiful handmade jewelry. I offered to help her in this endeavor, figuring I could provide moral support plus visit with some of my church friends. My contribution was an extra hand in setting up the table, then sitting in the sun and holding down a chair for the five hours of the festival. I think I did a good job holding down that chair, it didn't get up once to run away.
I had also made my usual contributions to the bake sale table. I had not volunteered to work any of the church's tables because I can no longer handle money transactions. I would either cause irate customers who were short-changed or very happy customers who got back more in change than they had initially handed to me. Many people love my baked goods and my chocolate layer cake with peanut butter frosting is usually the first thing off the table. That part of the day made me feel good, that I could still make it!
Back to those hurtful words. One of the first hurtful things was when I overheard someone say was "Look now she is using her cane. She wasn't using it before." Technically, she was correct. When my hands were full of the baked goods when unloading them from the car, walking three feet and handing them to the women, I was not able to use my cane and took the risk falling. I didn't think it was my responsibility to explain that the cane is for when my sense of balance disappears or one of my legs doesn't get the signal from my brain to move. This does not occur constantly and sometimes I take the risk. I could have turned around and explained this, but figured anyone thoughtless enough to comment on it wouldn't believe me anyway, nor try to understand.
Of course there was the old reliable "You look wonderful!" Heard this one a couple times. While veiled as a complement, when coupled with the skeptical look that adds "Are you sure you are sick?" it truly hurts. What am I to do? Should I stop dressing nicely, fixing my hair and applying a little makeup to try to look a little better so that they can believe there is something wrong with me?
Throughout the entire event, there was also something going on that made me quite uncomfortable. I will not go in to the details because if anyone from the church reads this, it will be obvious whom I speaking about. Unlike others, who don't think before they speak, I, the one with no impulse control or filter between mouth and brain, will restrain my fingers from typing the hurtful thing that continued through the entire five hours. I will just hint that it involved feeling like this person's constant stare was boring a hole straight through my heart and sole. This was from a distance, so I could not hear any words being said, but knowing that this person talks even more than I do, I am confident that they were being said.
What it boils down to is that in some cases, you don't have to actually hear the hurtful words when you can read them in the other person's eyes and the look on their face. I had intended to visit the table where this person was working, but opted to stay away, because without a filter between mouth and brain, I know I would have said some hurtful words and I would not want to do that to anyone if I was able to help it.
I hate to tell you, but who ever came up with this expressions was lying to a kid. These days, the other kid who is hurling the bad names or nasty words would most likely be accused of bullying. Within the two extremes, hopefully a happy medium exists there somewhere.
Words do hurt. Often, the words can hurt just as much as physical wounds. Add in skeptical looks and your day can be ruined. I have written about this issue several times, so I am aware of the issue and perhaps should be able to shrug it off by now, but I cannot.
What worsens those words and looks is the already instilled frustration of being limited in the things I can do, things that I used to be able to do, almost without consciously thinking about what I was doing.
Yesterday morning, I dragged myself out of bed by 7 a.m. (way before my brain kicks into gear) to head to our church parking lot for its spring festival. I had suggested to a friend that she rent a table space and attempt to sell her beautiful handmade jewelry. I offered to help her in this endeavor, figuring I could provide moral support plus visit with some of my church friends. My contribution was an extra hand in setting up the table, then sitting in the sun and holding down a chair for the five hours of the festival. I think I did a good job holding down that chair, it didn't get up once to run away.
I had also made my usual contributions to the bake sale table. I had not volunteered to work any of the church's tables because I can no longer handle money transactions. I would either cause irate customers who were short-changed or very happy customers who got back more in change than they had initially handed to me. Many people love my baked goods and my chocolate layer cake with peanut butter frosting is usually the first thing off the table. That part of the day made me feel good, that I could still make it!
Back to those hurtful words. One of the first hurtful things was when I overheard someone say was "Look now she is using her cane. She wasn't using it before." Technically, she was correct. When my hands were full of the baked goods when unloading them from the car, walking three feet and handing them to the women, I was not able to use my cane and took the risk falling. I didn't think it was my responsibility to explain that the cane is for when my sense of balance disappears or one of my legs doesn't get the signal from my brain to move. This does not occur constantly and sometimes I take the risk. I could have turned around and explained this, but figured anyone thoughtless enough to comment on it wouldn't believe me anyway, nor try to understand.
Of course there was the old reliable "You look wonderful!" Heard this one a couple times. While veiled as a complement, when coupled with the skeptical look that adds "Are you sure you are sick?" it truly hurts. What am I to do? Should I stop dressing nicely, fixing my hair and applying a little makeup to try to look a little better so that they can believe there is something wrong with me?
Throughout the entire event, there was also something going on that made me quite uncomfortable. I will not go in to the details because if anyone from the church reads this, it will be obvious whom I speaking about. Unlike others, who don't think before they speak, I, the one with no impulse control or filter between mouth and brain, will restrain my fingers from typing the hurtful thing that continued through the entire five hours. I will just hint that it involved feeling like this person's constant stare was boring a hole straight through my heart and sole. This was from a distance, so I could not hear any words being said, but knowing that this person talks even more than I do, I am confident that they were being said.
What it boils down to is that in some cases, you don't have to actually hear the hurtful words when you can read them in the other person's eyes and the look on their face. I had intended to visit the table where this person was working, but opted to stay away, because without a filter between mouth and brain, I know I would have said some hurtful words and I would not want to do that to anyone if I was able to help it.
Friday, May 20, 2016
My Story Retold
I was recently asked to write "My Story" to be published by Dementia Symptom Perspectives.
It was published online by them and then shared again by another online site that publishes things written about FTD. They have also reposted some of my blog entries from time to time. I always say, every time I write something that if it reaches just one person, it is worth doing. It worked, I received a message from someone who had just been diagnosed with FTD and she was desperate for information. Also last week, I received a lovely message from someone who had discovered this blog and just wanted to thank me for sharing my information which was helping them understand FTD and learning how to help the family member who was just diagnosed.
Anyway, I thought I would post a copy of "My Story" here in my blog?
Everyone who has been diagnosed with Frontotemporal Dementia has a story. My story is no more important than anyone else’s and is probably not that unique when it comes right down to it. To me, however, it is a story that encompasses most of my life.
It started when, as a teenager, I came to realize there was something wrong with Grandma. I watched my grandma disappear a little at a time as dementia slowly destroyed and eventually took her life. Years later, it was my mother. A few more years and it was my favorite aunt. I was a part time caregiver for all of them. Their brother also was stolen by dementia. They were all diagnosed with Alzheimer’s Disease, but knowing what I do now, I truly believe it was FTD.
Eleven years ago, my husband, retired early. He sat me down one day and said “You have followed me and my career all over the country, now it is your turn to choose where we live.” I didn’t even think about it, I said “Take me home.” It wasn’t long until we did exactly that, returning to the small city in the central part of Pennsylvania. Population 45,000. After living in many large cities across the country, it came as a culture shock to us. In a few years, we would learn that living in a smaller town, while it has many benefits, has one huge downfall.
I went to work as an accountant. I worked there, I am guessing about six years. It was an easy drive from home, a direct route with just four turns. Six years ago, during the busy tax season, it became my habit to stop at a local convenience store for a giant cup of coffee to get me through the morning. I realized that I was struggling with that simple purchase almost daily. I solved it by buying store gift cards so that when I went in, that was all I took in with me. I should have, but didn’t, stop to wonder why it was happening.
A few months later when driving to work and the street I turned on to go up to the office was closed. I drove another block and turned up the next street, which is the street I usually came down at the end of the day to head home. The office was only two blocks up that hill on the avenue between the two streets. Driving up the hill, I started to panic because I was lost. I pulled to the side of the street and tried to work it out in my head and couldn’t do it. Finally, I drove slowly to the end of that second block, saw the ballfield at the corner and realized where I was. This led to getting lost when it was my turn to make the lunch run. I could find my way to the deli, but not the way back. A couple months later I stopped driving altogether after nearly causing several accidents. Soon after, I was blindsided at work and was fired. Although I understood why, it was handled in an ugly manner, leaving me devastated, embarrassed and unemployable.
I was around 55 at that time, the same age my grandma and mother were when Their dementia became obvious. I made an appointment with my family doctor who referred me to a local neurologist. He sent me to a neuro psychologist for testing and both diagnosed depression and insisted I was too young for Alzheimer’s or dementia. Yes, supposedly the best neurologist in town actually said that. I went to a second neurologist who concurred with the first one after a two or three minute exam. Now, I knew the largest downfall of living in a small city: not many good doctors. My family doctor, though, knew me well enough to insist it was not depression and she sent me to a neuro-psychiatrist in Pittsburgh about 90 miles away.
After a SPECT brain scan, he immediately diagnosed FTD . (He later added MND,Motor Neuron Disease). No doubt in his mind, that was it. He showed us the pictures of my brain and the next words to us were “Go home and start living you life while you still can.” He later changed my diagnosis, BvFTD w/MND (Motor Neuron Disease). Since I was unemployed, I had a lot of time to investigate FTD. Every time I read something new, I would say “Yep, that’s me!” I learned from reading that the drugs for Alzheimer’s were contraindicated for FTD and insisted on weaning off them. It was an improvement as my mind seemed more clear without them.
I enrolled in a dementia research program in Pittsburgh. Later I learned that their focus was only Alzheimer’s Disease. After two years and four visits, they basically said there was nothing wrong with me because I had passed the memory tests with flying colors. Knowing that FTD did not usually destroy the memory until the later stages, it was totally frustrating that they did not take that into consideration. As a result, the local doctors actually became correct. The cavalier way of these doctors treating me sent me spiraling down into depression. I was very lucky and learned of a psychologist, right in our tiny little town, who specializes in dementia. I only see her once a month now, but will continue seeing her as long as she is willing. She grounds me by helping me deal with the daily frustrations of coping with FTD, and there are many. The biggest frustration is not wanting to rely on others. Even in childhood, I wanted to do it all myself. This has been a difficult transition .and she has become one of my lifelines.
I found another lifeline, this time on the internet. I was invited to join an online support group for those with a confirmed diagnosis of FTD. These new friends are the only ones who truly understand what it is like to deal with the constant issues that arise with FTD. Their advice has been extraordinary. If I didn’t have them to “talk” to, I would most likely be at the psychologist’s office daily.
Every specialist would collect my money and say “Sorry, there is nothing we can do, but please come back in three months.” I decided to give up seeing all the specialists and now only see my family doctor and psychologist. My husband became my primary care partner along with my daughter, though she has to help from three states away. They are my strongest lifeline ever.
When you have an appointment with a new healthcare professional, go to the first appointment armed with information about FTD and offer to leave the info with them. The good ones will accept it willingly and will actually learn about FTD because they want to help their patient. Do not be afraid to lean on others, your care partners and healthcare partners. This is one time it does not work to be a do-it-myself person. This is a disease we cannot, and should not have to, face alone. I have deliberately not gone into all the symptoms and physical impact of my FTD mainly because I try my best to not complain and there are others who explain those more than I do. I thought it more important to share the story of how I got here.
AFTD Conference and New Friends
There has been so much chaos going on in my life right now (most of it good chaos) that I have been ignoring my blog. It is probably a good sign because that means things have been pretty good since it is usually frustrations that drive me to write a post.
I spent several weeks preparing for a trip to Minneapolis to attend the AFTD (theAFTD.org) conference this past weekend. I managed to do all the planning and arrangements myself. It took a lot of effort and time, but left me feeling like I can indeed still do some things.
The conference was one of the best experiences I have had in a long, long time. The conference is mainly to educate medical professionals, but for a few years now has been open to those diagnosed with FTD and their caregivers. There were over 40 of us with FTD and it was so enjoyable to actually compare stories and get new information from each other. Many from the online support group I have oftened mentioned here before were there, so I was able to meet them. Now they really are my friends, not just Facebook friends.
I discovered that those of us with FTD can have a blast! Being surrounded by others dealing with the same issues make me totally comfortable. This was because I knew if I said or did something stupid that they would understand and laugh right along with me. I laughed more in those two days than I have in years!
The travel went smoothly. My daughter was with me the entire way. She actually took two flights from her home to mine, then the next day took two more with me to the conference. She dedicated six days to my trip, four of them vacation days from work, and spent four of the six on airplanes. Best daughter ever!!!
I was amazed the entire trip how good her instincts are in being my caregiver. She lives several states away, so has not been a full time caregiver before. She was always right there when I needed her, but she did not "hover" which frustrates me when someone does it. She also became friends with several people at the conference and I'll bet will gladly go with me again next year.
I must tell you about "TSA Cares" which is a service provided by the TSA people. You can look it up online by searching for TSA Cares. They have a phone number that you can call 72 hours before your flights. The agents on the phone take your information and ferret out the problems that may arise during your trip. In both Minneapolis and Pittsburgh, that assistance included an agent meeting us as soon as we entered the airport. Also waiting was a wheelchair and attendant. The agent walked us right through the TSA lines, explaining the entire time what I needed to be doing. I only had to wait for one person to be screened ahead of time.
In Minneapolis, our return flight was early in the morning and we did not have breakfast before we left the hotel. The agent recommended an airport restaurant (and what a delicious choice it was!) and arranged for the wheelchair attendant to take us there, then return 45 minutes later to deliver us to the gate.
For all the horror stories in the news media about TSA, I was amazed by this service and how smoothly everything went. Sometimes our government actually does something right. I even sent a message to my congressman to tell him what a great experience it was. I figure with all the complaints they get about the screening process, it would be nice for him to hear about something good.
I did have a few falls over the few days. Two of them were while trying to deplane, once in the jetway leaving our main flight and the other trying to deplane from the very small commuter flight that finished off our flight. Fortunately with that one, I fell backward and landed with my butt on the step I had just come down. Yes, it was quite amusing and not dangerous at all. The jetway fall could have been serious, but I came away with just sore muscles and a bruised hip.
Our online support group got together the night before the conference at an Irish Pub. It required crossing two busy, 4-lane streets. Crossing from the hotel to the pub, it was dicey. The crossing signal only gives about 20 seconds to cross the wide street. With my shaky balance, it was quite a challenge, but we made it! The interesting thing, and why I go into this story, is that I actually had two small drinks at the pub with dinner. I rarely, rarely drink and when I do, it is only one lightweight drink. After those two drinks, crossing back over the streets to the hotel was easy-peasy. Made it with seconds left over and didn't stumble once. Perhaps that is the secret to dealing with FTD? Wishful thinking, I know, and I wouldn't want to start drinking all the time anyway!
Next year the conference is in Baltimore, only 1 1/2 hours away and I am counting the months. At least I'm not counting the days yet!
I spent several weeks preparing for a trip to Minneapolis to attend the AFTD (theAFTD.org) conference this past weekend. I managed to do all the planning and arrangements myself. It took a lot of effort and time, but left me feeling like I can indeed still do some things.
The conference was one of the best experiences I have had in a long, long time. The conference is mainly to educate medical professionals, but for a few years now has been open to those diagnosed with FTD and their caregivers. There were over 40 of us with FTD and it was so enjoyable to actually compare stories and get new information from each other. Many from the online support group I have oftened mentioned here before were there, so I was able to meet them. Now they really are my friends, not just Facebook friends.
I discovered that those of us with FTD can have a blast! Being surrounded by others dealing with the same issues make me totally comfortable. This was because I knew if I said or did something stupid that they would understand and laugh right along with me. I laughed more in those two days than I have in years!
The travel went smoothly. My daughter was with me the entire way. She actually took two flights from her home to mine, then the next day took two more with me to the conference. She dedicated six days to my trip, four of them vacation days from work, and spent four of the six on airplanes. Best daughter ever!!!
I was amazed the entire trip how good her instincts are in being my caregiver. She lives several states away, so has not been a full time caregiver before. She was always right there when I needed her, but she did not "hover" which frustrates me when someone does it. She also became friends with several people at the conference and I'll bet will gladly go with me again next year.
I must tell you about "TSA Cares" which is a service provided by the TSA people. You can look it up online by searching for TSA Cares. They have a phone number that you can call 72 hours before your flights. The agents on the phone take your information and ferret out the problems that may arise during your trip. In both Minneapolis and Pittsburgh, that assistance included an agent meeting us as soon as we entered the airport. Also waiting was a wheelchair and attendant. The agent walked us right through the TSA lines, explaining the entire time what I needed to be doing. I only had to wait for one person to be screened ahead of time.
In Minneapolis, our return flight was early in the morning and we did not have breakfast before we left the hotel. The agent recommended an airport restaurant (and what a delicious choice it was!) and arranged for the wheelchair attendant to take us there, then return 45 minutes later to deliver us to the gate.
For all the horror stories in the news media about TSA, I was amazed by this service and how smoothly everything went. Sometimes our government actually does something right. I even sent a message to my congressman to tell him what a great experience it was. I figure with all the complaints they get about the screening process, it would be nice for him to hear about something good.
I did have a few falls over the few days. Two of them were while trying to deplane, once in the jetway leaving our main flight and the other trying to deplane from the very small commuter flight that finished off our flight. Fortunately with that one, I fell backward and landed with my butt on the step I had just come down. Yes, it was quite amusing and not dangerous at all. The jetway fall could have been serious, but I came away with just sore muscles and a bruised hip.
Our online support group got together the night before the conference at an Irish Pub. It required crossing two busy, 4-lane streets. Crossing from the hotel to the pub, it was dicey. The crossing signal only gives about 20 seconds to cross the wide street. With my shaky balance, it was quite a challenge, but we made it! The interesting thing, and why I go into this story, is that I actually had two small drinks at the pub with dinner. I rarely, rarely drink and when I do, it is only one lightweight drink. After those two drinks, crossing back over the streets to the hotel was easy-peasy. Made it with seconds left over and didn't stumble once. Perhaps that is the secret to dealing with FTD? Wishful thinking, I know, and I wouldn't want to start drinking all the time anyway!
Next year the conference is in Baltimore, only 1 1/2 hours away and I am counting the months. At least I'm not counting the days yet!
Tuesday, April 26, 2016
Was There a Compliment in There?
A few days ago, I was actually having a good brain day. Plus, my chronic headache was not too bad. It happened on a day that the women's group from my church was meeting. A friend picked me up and took me with her. I even managed to fix a dish for the potluck luncheon.
Many of the women, and one man, who were there seemed happy to see me. Others just ignored me. That's okay because I realize it is because they do not know how to deal with my illness and what to say or not to say.
I was only there about a minute until I got the old standby "You look really good." Nice sentiment for someone who is not dealing with a life threatening illness. It might even have made me feel good if it wasn't said in a way that made it obvious they didn't believe there was anything wrong with me. Some of the really ignorant ones actually say "You look too good to be sick." Gee, thanks?
I actually responded to a few of them that I really appreciated the complement and that since dealing with FTD I have made a concerted effort to pay attention to my appearance. I actually dress nicer, wear makeup and pay attention to what my hair looks like. Before FTD, I was always a take me as I am person. If I wasn't at work you would see me in blue jeans, a shirt and sneakers. I take more care with my appearance, thinking that if I look better maybe they won't notice my symptoms.
When I mentioned that to a few of them, a couple of them said "Well, you must be having a good day." Again, thanks? I did respond to them that I was indeed having a rare good day. I did not tell them that after being there for two hours, I would probably have to go to bed when I got home because it will have taken that much of a toll on me.
They may as well have said that I must not really be sick.
Just as bad are the ones who take a different approach. They start telling me how they totally understand what I am going through because their neighbor's friend's aunt's mother has Alzheimer's too.
First of all, if you don't have FTD, or are not caring for someone who has it, you do not understand what I am going through. Some days, I'm not sure I even know what I am going through. Secondly, I do NOT have Alzheimer's Disease. I do not know how many times I must explain this to the same people over and over. FTD is not the same disease. Yes, they both involve dementia and they are both fatal, but there are many more ways they are different than those that are the same.
I wish people who know me well enough to know that I have FTD would actually care enough to go home and look it up on the internet. Then, they might have a small inkling of what I am dealing with every day.
Bottom line is that these are examples of the things you should never say to someone with FTD. Do not deny that I have an illness and do not delude yourself into thinking you understand what I deal with day in and day out. It is just downright rude and uncaring.
I cannot stop myself from worrying about what the people I encounter think of me when I am showing symptoms. That, however, is much better than someone implying that there is nothing wrong with me or trying to make me "feel better" by telling me how wonderful I look. The truth is that compared to how I looked pre-FTD, I look pretty bad. My face is always drawn and tired-looking. I walk with a strange gait, sometimes even with my cane. I have lost most of the confidence in myself which was always apparent to others. I don't look "good." Some days, I look better than others, but I would never classify it as looking good.
I would suggest that people say something like "You look nice today." or "You look good in that color." It just needs to be something truthful. If it is not, sorry to say but I will see right through it.
Many of the women, and one man, who were there seemed happy to see me. Others just ignored me. That's okay because I realize it is because they do not know how to deal with my illness and what to say or not to say.
I was only there about a minute until I got the old standby "You look really good." Nice sentiment for someone who is not dealing with a life threatening illness. It might even have made me feel good if it wasn't said in a way that made it obvious they didn't believe there was anything wrong with me. Some of the really ignorant ones actually say "You look too good to be sick." Gee, thanks?
I actually responded to a few of them that I really appreciated the complement and that since dealing with FTD I have made a concerted effort to pay attention to my appearance. I actually dress nicer, wear makeup and pay attention to what my hair looks like. Before FTD, I was always a take me as I am person. If I wasn't at work you would see me in blue jeans, a shirt and sneakers. I take more care with my appearance, thinking that if I look better maybe they won't notice my symptoms.
When I mentioned that to a few of them, a couple of them said "Well, you must be having a good day." Again, thanks? I did respond to them that I was indeed having a rare good day. I did not tell them that after being there for two hours, I would probably have to go to bed when I got home because it will have taken that much of a toll on me.
They may as well have said that I must not really be sick.
Just as bad are the ones who take a different approach. They start telling me how they totally understand what I am going through because their neighbor's friend's aunt's mother has Alzheimer's too.
First of all, if you don't have FTD, or are not caring for someone who has it, you do not understand what I am going through. Some days, I'm not sure I even know what I am going through. Secondly, I do NOT have Alzheimer's Disease. I do not know how many times I must explain this to the same people over and over. FTD is not the same disease. Yes, they both involve dementia and they are both fatal, but there are many more ways they are different than those that are the same.
I wish people who know me well enough to know that I have FTD would actually care enough to go home and look it up on the internet. Then, they might have a small inkling of what I am dealing with every day.
Bottom line is that these are examples of the things you should never say to someone with FTD. Do not deny that I have an illness and do not delude yourself into thinking you understand what I deal with day in and day out. It is just downright rude and uncaring.
I cannot stop myself from worrying about what the people I encounter think of me when I am showing symptoms. That, however, is much better than someone implying that there is nothing wrong with me or trying to make me "feel better" by telling me how wonderful I look. The truth is that compared to how I looked pre-FTD, I look pretty bad. My face is always drawn and tired-looking. I walk with a strange gait, sometimes even with my cane. I have lost most of the confidence in myself which was always apparent to others. I don't look "good." Some days, I look better than others, but I would never classify it as looking good.
I would suggest that people say something like "You look nice today." or "You look good in that color." It just needs to be something truthful. If it is not, sorry to say but I will see right through it.
Sunday, April 24, 2016
Positive People
Last week, I wrote about a wonderful friend. Last evening, she escorted me to a charity benefit that I attend every year. We sat at a table of people whom I know and several others that I know were nearby. Then, my friend noticed someone at the next table who we had both known several years ago. My stepfather never sat down, but he was right there next to our table almost the entire evening. My sister and her significant other stopped by as well.
I should have prefaced all this by saying that this annual event has been quite boring to me and always seemed too long and drawn out. This year, though, while still just as long, I had a blast! Last night, as I was trying to unwind enough to go to sleep, I started wondering what made the difference. It didn't take me long to figure out what it was... positive people.
I had asked a cousin to save us seats. She had no idea what an impact crowds and crowded places does to me. Yet, by coincidence, or mental telepathy or whatever, she had reserved a table in a room adjacent to the main room for the event. This resulted in us having lots of open space around us and even a couple empty seats at our table. Plus, the rest of the table was filled with family who know how to have a good time. This, more than likely, also contributed to my being relaxed and able to have a good time. There actually was one grump at our table, but he was at the opposite end of the table so he didn't interfere with me. There is always one, isn't there. I figure he is related somehow, but never did figure out who he was!
There were a few comments about things dragging out, but other than that, everyone was upbeat and fun to be with. Another contributing factor was probably the fact that they all knew that I have FTD and didn't react when I stuttered or stumbled. They might have had a couple chuckles after I left, but that's fine with me because I laugh at myself some days too!
My friend always knows someone, no matter where we go. I had not seen our old friend for five years and because of circumstances in her life, it happened abruptly. I shouldn't call her "old" she is way younger than my friend and me. Now, I have a luncheon to look forward to us since we made plans to get together, the three of us and one of her friends.
These things don't happen when I am surrounded by "Negative Nellies," people who complain all the time and have grumpy faces. Surrounding myself with positive people is definitely something I should consciously do. The difference is just amazing. FTD tends to be a depressing illness. It is so very frustrating and gets more and more so as it progresses. It steals from you the things you used to be able to do without even thinking about it. I cannot begin to explain what impact that has on my life. Being with positive people rubs off on me to the point that I cannot have a bad time. When having fun, the frustrating things don't seem to matter as much. I can enjoy myself!
Post FTD, I have not gone out in the evening very often because by then, the daily frustrations have become to much and I need to retreat to a calm and quiet place. So it was truly amazing that I was able to be relaxed enough to enjoy myself.
One amusing thing that happened last night is that I won a raffle prize. I have been attending this event for about ten years and have never won a darned thing. See how much better things are when you are having fun? Yes, I know it had no effect. My sister also claimed that she had blessed my tickets and that is why I won. Uh, no to that one too!
I should have prefaced all this by saying that this annual event has been quite boring to me and always seemed too long and drawn out. This year, though, while still just as long, I had a blast! Last night, as I was trying to unwind enough to go to sleep, I started wondering what made the difference. It didn't take me long to figure out what it was... positive people.
I had asked a cousin to save us seats. She had no idea what an impact crowds and crowded places does to me. Yet, by coincidence, or mental telepathy or whatever, she had reserved a table in a room adjacent to the main room for the event. This resulted in us having lots of open space around us and even a couple empty seats at our table. Plus, the rest of the table was filled with family who know how to have a good time. This, more than likely, also contributed to my being relaxed and able to have a good time. There actually was one grump at our table, but he was at the opposite end of the table so he didn't interfere with me. There is always one, isn't there. I figure he is related somehow, but never did figure out who he was!
There were a few comments about things dragging out, but other than that, everyone was upbeat and fun to be with. Another contributing factor was probably the fact that they all knew that I have FTD and didn't react when I stuttered or stumbled. They might have had a couple chuckles after I left, but that's fine with me because I laugh at myself some days too!
My friend always knows someone, no matter where we go. I had not seen our old friend for five years and because of circumstances in her life, it happened abruptly. I shouldn't call her "old" she is way younger than my friend and me. Now, I have a luncheon to look forward to us since we made plans to get together, the three of us and one of her friends.
These things don't happen when I am surrounded by "Negative Nellies," people who complain all the time and have grumpy faces. Surrounding myself with positive people is definitely something I should consciously do. The difference is just amazing. FTD tends to be a depressing illness. It is so very frustrating and gets more and more so as it progresses. It steals from you the things you used to be able to do without even thinking about it. I cannot begin to explain what impact that has on my life. Being with positive people rubs off on me to the point that I cannot have a bad time. When having fun, the frustrating things don't seem to matter as much. I can enjoy myself!
Post FTD, I have not gone out in the evening very often because by then, the daily frustrations have become to much and I need to retreat to a calm and quiet place. So it was truly amazing that I was able to be relaxed enough to enjoy myself.
One amusing thing that happened last night is that I won a raffle prize. I have been attending this event for about ten years and have never won a darned thing. See how much better things are when you are having fun? Yes, I know it had no effect. My sister also claimed that she had blessed my tickets and that is why I won. Uh, no to that one too!
Sunday, April 17, 2016
Precious Friends
I have written many times about friendship. Specifically, I have written about how difficult it is for even longtime friends to stick with someone with FTD. It is easy to be a friend when things are good but not so easy when times get tough. How often do you hear "You find out who your friends are." Come to think of it, isn't that even a song?
Notice I said how difficult it is for the friends, not how horrible it is of them. I have/had longtime friends where we have been there for each other through good times, sad times, fun times and difficult times. There is only so much support and help that someone with FTD can provide so the friendship seems to one-sided at times. That can be difficult for some people to bear. I don't like it, but I understand and knowing that they feel that way, I have no desire to hang out with them anyway.
The good news is, there are the other kinds of friends as well. Sometimes, these are the ones that have recently come into our lives so they have only known us as we are now. I have a friend like that! We met about 3 or 4 years ago right around the time I was openly explaining FTD to people around me. Jannett and I got along really well at the craft sessions we attended together. Then one day, the person who usually drove me home was not there, so she offered. We didn't stop talking the entire way home, talking at warp speed and sometimes at the same time. We had so much in common it was scary.
Unfortunately, we both stopped going to the meetings right about the same time for different reasons. Neither one of us followed up with each other to keep in touch. Then, six months or so ago, through the miracle of Facebook, we reconnected. She had posted about a business venture she was involved in. She mentioned that she worked there on Fridays, so the next Friday, I conned my husband into taking me there to see her. It was like we had just seen each other the week before. After lots of hugs, we arranged a lunch together.
Jannett amazes me. She is ten years older than I am, yet is one of the most active people I know. The best thing about her is that she accepts me just as I am. She doesn't care if I stutter or search for words or stumble around when walking. If people think I am drunk, eh, who care? She can also get me to do things I wouldn't have done otherwise.
Last week, we again met for lunch at our favorite place. Earlier that morning, I had seen an email that the women's group from the church we both used to attend regularly was going to meet next week. I had not been to a meeting for many months because I no longer felt comfortable there. It seemed that other members were reluctant to include me in conversations, making me feel like a fifth wheel... totally unnecessary. Plus, I have difficulty being with more than a couple people at a time. That morning, though, I thought "Hmmm... if I could talk Jannett into going with me, maybe I will go." At our lunch, some of the first words she spoke were that she had received a phone call from the president of the group to personally invite her to next week's meeting and suggested that maybe she could try to get me to come as well. So there we were, thinking the same thing! Yes, we are going to the meeting.
Jannett is good for me. I have written how difficult it is for me to get out and do things and to spend time with people. She doesn't let me get away with that. I also wanted to go to a function that I would not go to alone. She didn't hesitate to agree to go with me. We will make it fun... and I need more fun in my life. I am thrilled to have her in my life!
Notice I said how difficult it is for the friends, not how horrible it is of them. I have/had longtime friends where we have been there for each other through good times, sad times, fun times and difficult times. There is only so much support and help that someone with FTD can provide so the friendship seems to one-sided at times. That can be difficult for some people to bear. I don't like it, but I understand and knowing that they feel that way, I have no desire to hang out with them anyway.
The good news is, there are the other kinds of friends as well. Sometimes, these are the ones that have recently come into our lives so they have only known us as we are now. I have a friend like that! We met about 3 or 4 years ago right around the time I was openly explaining FTD to people around me. Jannett and I got along really well at the craft sessions we attended together. Then one day, the person who usually drove me home was not there, so she offered. We didn't stop talking the entire way home, talking at warp speed and sometimes at the same time. We had so much in common it was scary.
Unfortunately, we both stopped going to the meetings right about the same time for different reasons. Neither one of us followed up with each other to keep in touch. Then, six months or so ago, through the miracle of Facebook, we reconnected. She had posted about a business venture she was involved in. She mentioned that she worked there on Fridays, so the next Friday, I conned my husband into taking me there to see her. It was like we had just seen each other the week before. After lots of hugs, we arranged a lunch together.
Jannett amazes me. She is ten years older than I am, yet is one of the most active people I know. The best thing about her is that she accepts me just as I am. She doesn't care if I stutter or search for words or stumble around when walking. If people think I am drunk, eh, who care? She can also get me to do things I wouldn't have done otherwise.
Last week, we again met for lunch at our favorite place. Earlier that morning, I had seen an email that the women's group from the church we both used to attend regularly was going to meet next week. I had not been to a meeting for many months because I no longer felt comfortable there. It seemed that other members were reluctant to include me in conversations, making me feel like a fifth wheel... totally unnecessary. Plus, I have difficulty being with more than a couple people at a time. That morning, though, I thought "Hmmm... if I could talk Jannett into going with me, maybe I will go." At our lunch, some of the first words she spoke were that she had received a phone call from the president of the group to personally invite her to next week's meeting and suggested that maybe she could try to get me to come as well. So there we were, thinking the same thing! Yes, we are going to the meeting.
Jannett is good for me. I have written how difficult it is for me to get out and do things and to spend time with people. She doesn't let me get away with that. I also wanted to go to a function that I would not go to alone. She didn't hesitate to agree to go with me. We will make it fun... and I need more fun in my life. I am thrilled to have her in my life!
Sunday, April 10, 2016
Oh look, a squirrel!
There are a lot of strange or funny things about fronto temporal lobe dementia. For instance, I can write this blog. I believe I write it in a straightforward manner with proper grammar and spelling. Spellcheck definitely helps. I also believe I write it in somewhat of an intelligent manner. Take me away from the computer, though, and it is a wholly different matter.
If you and I were speaking about the same subject I write about, I would stutter and struggle for words. I would often use a word of totally different meaning from what I am trying to say. Sometimes I hear myself do it and will question the listener as to what I had actually said. Fortunately, those who are closest to me can usually figure out what I am actually meaning to say. With these people, I can just laugh it off. With people I don't know as well, I am quite embarrassed when I do it. To be more accurate, I am embarrassed by their reaction to me.
Strangers will often think I am under the influence of alcohol or drugs, when I am talking and also when I am walking. It is quite hurtful when they are rude enough to make a comment about it. They don't say it to me, but I overhear them saying it to someone else. Makes me want to hit them with my cane! Not literally, don't be calling the authorities on me. I haven't reached that point yet.
Okay, right here I will admit that when I am writing these blog entries, I wander off subject and weave around right along with my wandering mind. Yes, I do this in person as well, probably more so than in my writing. It is kind of like talking to someone with a serious case of Attention Deficit Disorder. It is not unusual for me to jump to three or more subjects in one paragraph or even one sentence. The joke about "oh look, a squirrel" distraction to someone with ADD often literally applies to me. We have a lot of squirrels who come up to our patio door. They are so entertaining that I will switch to talking about them a lot of times, especially when on the phone. Where I sit to talk on the phone is right in front of this door and they show up to entertain every time. The worst part of my wandering mind is that when someone doesn't follow along or grasp all the different things I am saying at once, I get very frustrated and angry.
This wandering of the mind is worse on some days than it is on others. I tend to talk over people because I already know what I want to say in response but forget it is polite to wait until they have finished talking. Talking on the phone brings this out even more often for some reason. Perhaps this is because I hate talking on the phone and want to get it over with. I hate making phone calls even more. I think it is insecurity, thinking that whoever I am calling has more important things to do than to talk to me. These phone issues don't apply with family and close friends, thank goodness. With them, I don't know when to shut up and let the other person talk or when it is time to end the call. Anyone who has known me all my life will tell you that I always talked too much, but it is definitely worse now.
Almost every time, when I am writing a blog entry, I start out on a certain subject. A short way into it, my mind switches to something else and I end up writing about a totally different subject. I hope the first subject wasn't very important.
I also find more humor in things. Unfortunately, it is things that aren't intended to be funny. I also come up with brilliant and hysterical things to share with others. Telling the story ends up with me saying "Well, I thought it was funny!" almost every time. Maybe there aren't as many funny things about FTD after all?
If you and I were speaking about the same subject I write about, I would stutter and struggle for words. I would often use a word of totally different meaning from what I am trying to say. Sometimes I hear myself do it and will question the listener as to what I had actually said. Fortunately, those who are closest to me can usually figure out what I am actually meaning to say. With these people, I can just laugh it off. With people I don't know as well, I am quite embarrassed when I do it. To be more accurate, I am embarrassed by their reaction to me.
Strangers will often think I am under the influence of alcohol or drugs, when I am talking and also when I am walking. It is quite hurtful when they are rude enough to make a comment about it. They don't say it to me, but I overhear them saying it to someone else. Makes me want to hit them with my cane! Not literally, don't be calling the authorities on me. I haven't reached that point yet.
Okay, right here I will admit that when I am writing these blog entries, I wander off subject and weave around right along with my wandering mind. Yes, I do this in person as well, probably more so than in my writing. It is kind of like talking to someone with a serious case of Attention Deficit Disorder. It is not unusual for me to jump to three or more subjects in one paragraph or even one sentence. The joke about "oh look, a squirrel" distraction to someone with ADD often literally applies to me. We have a lot of squirrels who come up to our patio door. They are so entertaining that I will switch to talking about them a lot of times, especially when on the phone. Where I sit to talk on the phone is right in front of this door and they show up to entertain every time. The worst part of my wandering mind is that when someone doesn't follow along or grasp all the different things I am saying at once, I get very frustrated and angry.
This wandering of the mind is worse on some days than it is on others. I tend to talk over people because I already know what I want to say in response but forget it is polite to wait until they have finished talking. Talking on the phone brings this out even more often for some reason. Perhaps this is because I hate talking on the phone and want to get it over with. I hate making phone calls even more. I think it is insecurity, thinking that whoever I am calling has more important things to do than to talk to me. These phone issues don't apply with family and close friends, thank goodness. With them, I don't know when to shut up and let the other person talk or when it is time to end the call. Anyone who has known me all my life will tell you that I always talked too much, but it is definitely worse now.
Almost every time, when I am writing a blog entry, I start out on a certain subject. A short way into it, my mind switches to something else and I end up writing about a totally different subject. I hope the first subject wasn't very important.
I also find more humor in things. Unfortunately, it is things that aren't intended to be funny. I also come up with brilliant and hysterical things to share with others. Telling the story ends up with me saying "Well, I thought it was funny!" almost every time. Maybe there aren't as many funny things about FTD after all?
Thursday, March 31, 2016
Loneliness
I have decided that FTD is a lonely disease. So few people understand it. Certainly, as I have said enough times already, that even the doctors don't understand it. Those who do are few and far between. That rules out talking to most doctors. Plus with today's state of medicine, the docs don't have time to sit and talk anymore.
Family and friends say they understand. They should as I have explained the disease often enough and handed them enough literature to paper a small room, maybe even a large room. I know they get tired of hearing me talk about it and the frustrations involved with it. They listen and agree and sympathize. Even though it may sound demanding and selfish, I want their empathy, not sympathy.
Family and friends understand the facts of the disease and the concept of the symptoms. They certainly understand how my having the disease affects them. This includes the things that they now have to do because I no longer can. For instance, we needed to purchase a new washer a few years ago and I still cannot figure out how to operate it properly. My husband now does the laundry. I kept the home running smoothly. When there were problems or issues that cropped up, I got on the phone and resolved them. I even did simple home repairs. I did the grocery shopping by rote, didn't need to think about it. I just grabbed the list and went. Now, the grocery store is my least favorite place to go with too much noise, confusion and too many choices. So they understand that either they need to do the grocery shopping or give me a day to go through the ad and make the list, then a different day to do the shopping. Of course, someone must go with me as well.
So they understand the disease and how it is affecting them, but they cannot really understand how it affects me. They think that when I start to fall apart, if they say something or hold my hand, I should immediately get "over it" and calm down. I only wish it was that easy. It is this gap in their understanding that makes me feel lonely, that no one understands me so why bother trying to talk about it.
There is an online support group for those of us with a diagnosis of FTD. It helps, we exchange information and beg for suggestions and understanding when we are having problems. Even there, though, there is only so much it can help. I can't post all my everyday frustrations. They would get tired of reading about my problems which seem trivial to so many other things being posted, even to me. While this support group is a tremendous help, it doesn't really help the everyday loneliness.
I see a wonderful and supportive psychologist who helps me immensely. She specializes in dementia cases, so she understands me pretty well. Talking to her helps with the big things I am trying to work through, but there is only so much talking we can do since I only get to see her for one hour per month.
I was prompted to write about this loneliness because for the past three days, I have constantly felt close to tears. It feels like if I could just have a good cry, I could get it out and feel better. Unfortunately FTD and I don't do well expressing emotions, including being able to cry. There are a couple stressful situations happening in my life right now that are most likely contributing to this feeling of needing to cry. They are not even close to being tragedies or threatening to my well being. When they combine with the everyday frustrations of dealing with FTD, however, I don't stand much of a chance of feeling normal.
I don't have any answers or suggestions for you today, except maybe to the caregivers, friends and family. Try to stop and think about how the things that your loved one is doing that have you frustrated and try to think how they must be feeling before you react. Perhaps take some time to sit with them later, during a quiet time, and ask them about any frustrations they are having and if there is anything you can do to help.
Family and friends say they understand. They should as I have explained the disease often enough and handed them enough literature to paper a small room, maybe even a large room. I know they get tired of hearing me talk about it and the frustrations involved with it. They listen and agree and sympathize. Even though it may sound demanding and selfish, I want their empathy, not sympathy.
Family and friends understand the facts of the disease and the concept of the symptoms. They certainly understand how my having the disease affects them. This includes the things that they now have to do because I no longer can. For instance, we needed to purchase a new washer a few years ago and I still cannot figure out how to operate it properly. My husband now does the laundry. I kept the home running smoothly. When there were problems or issues that cropped up, I got on the phone and resolved them. I even did simple home repairs. I did the grocery shopping by rote, didn't need to think about it. I just grabbed the list and went. Now, the grocery store is my least favorite place to go with too much noise, confusion and too many choices. So they understand that either they need to do the grocery shopping or give me a day to go through the ad and make the list, then a different day to do the shopping. Of course, someone must go with me as well.
So they understand the disease and how it is affecting them, but they cannot really understand how it affects me. They think that when I start to fall apart, if they say something or hold my hand, I should immediately get "over it" and calm down. I only wish it was that easy. It is this gap in their understanding that makes me feel lonely, that no one understands me so why bother trying to talk about it.
There is an online support group for those of us with a diagnosis of FTD. It helps, we exchange information and beg for suggestions and understanding when we are having problems. Even there, though, there is only so much it can help. I can't post all my everyday frustrations. They would get tired of reading about my problems which seem trivial to so many other things being posted, even to me. While this support group is a tremendous help, it doesn't really help the everyday loneliness.
I see a wonderful and supportive psychologist who helps me immensely. She specializes in dementia cases, so she understands me pretty well. Talking to her helps with the big things I am trying to work through, but there is only so much talking we can do since I only get to see her for one hour per month.
I was prompted to write about this loneliness because for the past three days, I have constantly felt close to tears. It feels like if I could just have a good cry, I could get it out and feel better. Unfortunately FTD and I don't do well expressing emotions, including being able to cry. There are a couple stressful situations happening in my life right now that are most likely contributing to this feeling of needing to cry. They are not even close to being tragedies or threatening to my well being. When they combine with the everyday frustrations of dealing with FTD, however, I don't stand much of a chance of feeling normal.
I don't have any answers or suggestions for you today, except maybe to the caregivers, friends and family. Try to stop and think about how the things that your loved one is doing that have you frustrated and try to think how they must be feeling before you react. Perhaps take some time to sit with them later, during a quiet time, and ask them about any frustrations they are having and if there is anything you can do to help.
Sunday, March 20, 2016
Routine please
Yesterday morning, while still lying in bed and convincing myself to get out of it, I heard a very loud bang. Even with FTD, I immediately knew what it was. A transformer had blown on the power pole a block away. This happens way too often, especially in the summer when the electric demand is high. Obviously, there is something wrong in the lines somewhere, but all they do is replace the parts on the pole and wait for it to happen again. What is the saying? Something like "Idiocy is doing the same thing over and over and expecting different results."
This time of year, it is not a horrible inconvenience to be without power for a few hours because it is not too cold outside and who won't accept a reason to not have to cook? I did all the right things. I turned up the ringer on the landline phone that does not need electricity... the one kids today would probably call an antique. I say it's not an antique unless you have to dial it! I put a note on the refrigerator so we wouldn't accidentally open it and let warm air in. I even dug out an LED light that runs on batteries so I could easily read the paper. The worst part was not being able to make a cup of coffee!
The power was back on after only three hours or so, no big deal. It was daylight and 50 degrees outside. Still, I felt out of sorts all the rest of the day. It felt like wanting to crawl out of my own skin, anxiety and restlessness and a general feeling that something was wrong. It eventually drove me to bed early, just to try to relax and decompress.
With FTD, I need a routine. I was quite spontaneous prior to FTD, but no longer. I need to go to bed and get up around the same time each day. I want my coffee and newspaper as soon as I get up. On and on the day goes... right on schedule. It is soothing to me. If I am forced out of my routine, I get anxious. I finally figured out late last night that the loss of electricity had been enough to throw me off my routine.
This morning, when I awoke, I thought "Great, I can have a calm day today." I even remembered it was Sunday. What day of the week has been difficult for a while and is getting more so. I got up, got dressed, made my cup of coffee and sat down with the Sunday newspaper. I soon discovered several sections were missing. I tried to convince myself it was no big deal but it didn't work. I have my routine of how I go through the paper and that routine was messed up. Maybe it wouldn't have affected me as much if it hadn't been the day after another disrupted day.
I often advise caregivers to try to keep a routine. Also, try to prevent sudden loud noises. Loud music or a loud television affects my comfort level. Flashing or bright lights will destroy my day, give me a headache and increase my anxiety. After either one of these, I need to go into a quiet and dark room to regroup. If a trip out of the house is necessary, I want to know at least the day before so I can mentally prepare myself. If my routine is thrown off, I will most likely get a bad headache and become very aggravated and irritable... very unpleasant to be around.
So, here I sit at the computer, taking lots of breaks and sitting with my head in my hands trying to figure out what I am doing or what I am supposed to be doing. I have a strong feeling that I have forgotten something important. I am jumping at unexpected noises which just adds to the anxiety level. I sure hope tomorrow goes according to plan!
This time of year, it is not a horrible inconvenience to be without power for a few hours because it is not too cold outside and who won't accept a reason to not have to cook? I did all the right things. I turned up the ringer on the landline phone that does not need electricity... the one kids today would probably call an antique. I say it's not an antique unless you have to dial it! I put a note on the refrigerator so we wouldn't accidentally open it and let warm air in. I even dug out an LED light that runs on batteries so I could easily read the paper. The worst part was not being able to make a cup of coffee!
The power was back on after only three hours or so, no big deal. It was daylight and 50 degrees outside. Still, I felt out of sorts all the rest of the day. It felt like wanting to crawl out of my own skin, anxiety and restlessness and a general feeling that something was wrong. It eventually drove me to bed early, just to try to relax and decompress.
With FTD, I need a routine. I was quite spontaneous prior to FTD, but no longer. I need to go to bed and get up around the same time each day. I want my coffee and newspaper as soon as I get up. On and on the day goes... right on schedule. It is soothing to me. If I am forced out of my routine, I get anxious. I finally figured out late last night that the loss of electricity had been enough to throw me off my routine.
This morning, when I awoke, I thought "Great, I can have a calm day today." I even remembered it was Sunday. What day of the week has been difficult for a while and is getting more so. I got up, got dressed, made my cup of coffee and sat down with the Sunday newspaper. I soon discovered several sections were missing. I tried to convince myself it was no big deal but it didn't work. I have my routine of how I go through the paper and that routine was messed up. Maybe it wouldn't have affected me as much if it hadn't been the day after another disrupted day.
I often advise caregivers to try to keep a routine. Also, try to prevent sudden loud noises. Loud music or a loud television affects my comfort level. Flashing or bright lights will destroy my day, give me a headache and increase my anxiety. After either one of these, I need to go into a quiet and dark room to regroup. If a trip out of the house is necessary, I want to know at least the day before so I can mentally prepare myself. If my routine is thrown off, I will most likely get a bad headache and become very aggravated and irritable... very unpleasant to be around.
So, here I sit at the computer, taking lots of breaks and sitting with my head in my hands trying to figure out what I am doing or what I am supposed to be doing. I have a strong feeling that I have forgotten something important. I am jumping at unexpected noises which just adds to the anxiety level. I sure hope tomorrow goes according to plan!
Sunday, March 6, 2016
Primary Progressive Aphasia... another type of FTD
Primary Progressive Aphasia (PPA). Have you ever heard of it? Until I started learning about FTD, I never had.
What is it? It is, basically, a progressive decline in the ability to speak. Today, I learned that it takes 100 different muscles, located between the lungs and lips, in order to speak. Speech therapy helps some people a bit and there are some experimental treatments out there being tested. One of which is sending electrical stimulation to the affected area of the brain that controls speech.
In the meantime, those with PPA can cope somewhat with speech devices. Those with just PPA can often still read and comprehend words and the meanings of them. They can manage their own lives, finances, etc. This enables many to be able to use speech assisting program and devices currently available. The majority requires the one with PPA to type in the words and the device will speak for them. Not a true substitute for speaking on their own, but at least a way of communicating.
Most often, PPA is considered to be under the umbrella of FTD. Just like FTD, it is not very well known. Unfortunately, even by physicians. Again, like FTD, PPA is often diagnosed as Early Onset Alzheimer's. Never mind that the one with PPA can understand the words, they just can't speak them, and they often do not have memory issues.
There is a young woman in the online support group that I frequent who has PPA. Reading between the lines in what she posts, makes me realize that I cannot begin to imagine the frustrations of dealing with the disease. She amazes me, the way she keeps a positive attitude. Sometimes the frustrations get the best of her, but she is still there to brighten someone else's day.
I am writing about PPA today because our local paper actually contained a story about the disease today. Of course, FTD was never mentioned, as usual. It did a pretty good job of describing PPA and the frustrations of dealing with it, along with hopes of some newer ways of coping with it that are in the works. They did a much better job of describing PPA than I have. Mine is more simplistic. In other words, broken down to the point that it makes sense to me.
I am very grateful that the newspaper printed the story so that I could get a better idea of what some of my online friends in our support group are dealing with every day.
It's been a while, if ever, that I have written about the exact form of FTD that I have been diagnosed with up to this point. The form that I have is bvFTD with MND. MND is Motor Neuron Disease. The closest way to describe this is that it is quite similar to ALS (Lou Gehrig's Disease). In fact, I have also seem some experts include ALS under the FTD umbrella since they are so similar. For me, it is like my muscles don't get the message from my brain. I will be walking and suddenly I trip, and often fall, because part of my brain is thinking that I am walking while at the same time, the signal from my brain to my muscles doesn't get there so my leg doesn't actually move. The most frustrating part, at the moment, is swallowing. The muscles necessary to cause me to swallow don't get the message. Both are worse when I am stressed or tired.
The bvFTD is Behavior Variant Fronto Temporal Lobe Dementia/Disease. That is where all the dangerous parts of FTD come in to play. Specifically, a lack of impulse control, loss of verbal filters, hyper-sexuality, outbursts of frustration and anger, impulse buying, repetitive activities and the list can go on and on. It becomes dangerous when I know I want to go across the road to get to our mailbox, but my brain doesn't remind me to look both ways. I almost got flattened by a coal truck one day.
My point I rambling toward is that if you know of someone diagnosed with FTD, then you meet someone else with the diagnosis, and you think it can't be because the symptoms of the two are totally different. Yep, it can be. The members of my support group like to say, "If you have seen one case of FTD, you have seen one case of FTD." No two are the same. Add in to that mix the fact that most medical personnel have never even heard of FTD, how likely is it that, with all the sub-types, this will be remedied very soon. That is why, any time I have the opportunity to talk about FTD to raise awareness, I do. I have also learned to go into any new doctor's office armed with literature to educate them about FTD. Some just look at it and toss it away, others seem sincerely interested and discuss it at the next visit. We need more doctors like that.
What is it? It is, basically, a progressive decline in the ability to speak. Today, I learned that it takes 100 different muscles, located between the lungs and lips, in order to speak. Speech therapy helps some people a bit and there are some experimental treatments out there being tested. One of which is sending electrical stimulation to the affected area of the brain that controls speech.
In the meantime, those with PPA can cope somewhat with speech devices. Those with just PPA can often still read and comprehend words and the meanings of them. They can manage their own lives, finances, etc. This enables many to be able to use speech assisting program and devices currently available. The majority requires the one with PPA to type in the words and the device will speak for them. Not a true substitute for speaking on their own, but at least a way of communicating.
Most often, PPA is considered to be under the umbrella of FTD. Just like FTD, it is not very well known. Unfortunately, even by physicians. Again, like FTD, PPA is often diagnosed as Early Onset Alzheimer's. Never mind that the one with PPA can understand the words, they just can't speak them, and they often do not have memory issues.
There is a young woman in the online support group that I frequent who has PPA. Reading between the lines in what she posts, makes me realize that I cannot begin to imagine the frustrations of dealing with the disease. She amazes me, the way she keeps a positive attitude. Sometimes the frustrations get the best of her, but she is still there to brighten someone else's day.
I am writing about PPA today because our local paper actually contained a story about the disease today. Of course, FTD was never mentioned, as usual. It did a pretty good job of describing PPA and the frustrations of dealing with it, along with hopes of some newer ways of coping with it that are in the works. They did a much better job of describing PPA than I have. Mine is more simplistic. In other words, broken down to the point that it makes sense to me.
I am very grateful that the newspaper printed the story so that I could get a better idea of what some of my online friends in our support group are dealing with every day.
It's been a while, if ever, that I have written about the exact form of FTD that I have been diagnosed with up to this point. The form that I have is bvFTD with MND. MND is Motor Neuron Disease. The closest way to describe this is that it is quite similar to ALS (Lou Gehrig's Disease). In fact, I have also seem some experts include ALS under the FTD umbrella since they are so similar. For me, it is like my muscles don't get the message from my brain. I will be walking and suddenly I trip, and often fall, because part of my brain is thinking that I am walking while at the same time, the signal from my brain to my muscles doesn't get there so my leg doesn't actually move. The most frustrating part, at the moment, is swallowing. The muscles necessary to cause me to swallow don't get the message. Both are worse when I am stressed or tired.
The bvFTD is Behavior Variant Fronto Temporal Lobe Dementia/Disease. That is where all the dangerous parts of FTD come in to play. Specifically, a lack of impulse control, loss of verbal filters, hyper-sexuality, outbursts of frustration and anger, impulse buying, repetitive activities and the list can go on and on. It becomes dangerous when I know I want to go across the road to get to our mailbox, but my brain doesn't remind me to look both ways. I almost got flattened by a coal truck one day.
My point I rambling toward is that if you know of someone diagnosed with FTD, then you meet someone else with the diagnosis, and you think it can't be because the symptoms of the two are totally different. Yep, it can be. The members of my support group like to say, "If you have seen one case of FTD, you have seen one case of FTD." No two are the same. Add in to that mix the fact that most medical personnel have never even heard of FTD, how likely is it that, with all the sub-types, this will be remedied very soon. That is why, any time I have the opportunity to talk about FTD to raise awareness, I do. I have also learned to go into any new doctor's office armed with literature to educate them about FTD. Some just look at it and toss it away, others seem sincerely interested and discuss it at the next visit. We need more doctors like that.
Sunday, February 28, 2016
Rambling On...
About the best thing I can say about this past week is that the week is over.
Today I am physically and mentally exhausted. Night before last, I actually had 8 hours of continuous sleep. I felt so good when I woke up yesterday that I did some cleaning that I had been putting off because it took a lot of energy and effort to do it. I exhausted myself, but my brain still felt more alert than usual. So, what did I do? I tackled our tax return. Bear in mind, I used to prepare tax returns as part of my occupation and our tax return is pretty darned simple now that we are both retired. Plus, the software I use remembers all the stuff from the year before, so all I really have to do is plug in a few numbers. Nothing at all was different this year, just the numbers. Uh-huh.
When I was working, we would allow one hour to do a return. With ours being so straight forward, it wouldn't have taken me that long. Yesterday, I spent more time than that just organizing the statements I needed. It was three categories and not very many in either category, 2, 2 and 4. Over an hour to sort 8 pages of paper! I am amazed that I actually got the return done at all. I am not very confident that it was done correctly and I suspect this might be the last year I can do it. I was, however, very happy that I was able to do it one more time.
And, I ramble on...
I am tired of offending people. I am tired of people taking offense at what I say or do, especially when it is a person who knows I have FTD and actually knows enough about the disease to realize that I have no filter between brain and mouth. Also known is the fact that I have no impulse control. The two pretty much go hand in hand and makes me a time bomb waiting to happen every time I open my mouth.
I recognize the fact that knowing these things is not the same as truly realizing what it means. I also recognize that some of the things that I spew forth can be hurtful. I also realize how much it hurts to be lashed out at about things I have said a long time ago and that are no longer in my memory bank. Perhaps if I am saying something hurtful, it would help to ask if it is me talking or my FTD talking. I suspect, though, after enough times of that, I would lose control. I don't think there is a solution to this problem.
I push myself to remember to control the impulses, but with no impulse control, it's hard to control them. Yes, I know how stupid that sounds, but I am trying to say that I just can't help it. Another problem is that what I say is not always what I am thinking about in my head.
I have begun to call this problem "word soup." The words are in there, but they are so mixed up that it is hard to distinguish the difference. I remember being embarrassed quite a few years ago, at an amusement park, when I went to ask a friend where the merry-go-round was. Instead I asked where the motorcycle was. Not much of a shock that all I got were blank stares. This instance was long enough ago, I do not really think it had anything to do with FTD, but who knows since they just don't know enough about this disease.
Often now, I will say something. Then after I have said it, I will think to myself that it just didn't sound right but I can't figure out what I said or even what I meant. It is getting scary since I know this will only get worse as time goes on.
I have learned to appreciate one of the worsening symptoms. I read on my Nook so that I can enlarge the print which reduces the problem of the double vision. I will go through the library of the books stored in the device and will see a book and think I didn't read it. I will read it again. There is this niggling feeling that I read it before, but I can't remember it. I have only been using my nook for 3 or 4 years, so I should be able to remember. I used to be able to talk about a book I had read more than 20 years ago. I guess the bright side would be that I can save money on buying books if I keep rereading the same ones.
I keep trying to see the bright side!
Today I am physically and mentally exhausted. Night before last, I actually had 8 hours of continuous sleep. I felt so good when I woke up yesterday that I did some cleaning that I had been putting off because it took a lot of energy and effort to do it. I exhausted myself, but my brain still felt more alert than usual. So, what did I do? I tackled our tax return. Bear in mind, I used to prepare tax returns as part of my occupation and our tax return is pretty darned simple now that we are both retired. Plus, the software I use remembers all the stuff from the year before, so all I really have to do is plug in a few numbers. Nothing at all was different this year, just the numbers. Uh-huh.
When I was working, we would allow one hour to do a return. With ours being so straight forward, it wouldn't have taken me that long. Yesterday, I spent more time than that just organizing the statements I needed. It was three categories and not very many in either category, 2, 2 and 4. Over an hour to sort 8 pages of paper! I am amazed that I actually got the return done at all. I am not very confident that it was done correctly and I suspect this might be the last year I can do it. I was, however, very happy that I was able to do it one more time.
And, I ramble on...
I am tired of offending people. I am tired of people taking offense at what I say or do, especially when it is a person who knows I have FTD and actually knows enough about the disease to realize that I have no filter between brain and mouth. Also known is the fact that I have no impulse control. The two pretty much go hand in hand and makes me a time bomb waiting to happen every time I open my mouth.
I recognize the fact that knowing these things is not the same as truly realizing what it means. I also recognize that some of the things that I spew forth can be hurtful. I also realize how much it hurts to be lashed out at about things I have said a long time ago and that are no longer in my memory bank. Perhaps if I am saying something hurtful, it would help to ask if it is me talking or my FTD talking. I suspect, though, after enough times of that, I would lose control. I don't think there is a solution to this problem.
I push myself to remember to control the impulses, but with no impulse control, it's hard to control them. Yes, I know how stupid that sounds, but I am trying to say that I just can't help it. Another problem is that what I say is not always what I am thinking about in my head.
I have begun to call this problem "word soup." The words are in there, but they are so mixed up that it is hard to distinguish the difference. I remember being embarrassed quite a few years ago, at an amusement park, when I went to ask a friend where the merry-go-round was. Instead I asked where the motorcycle was. Not much of a shock that all I got were blank stares. This instance was long enough ago, I do not really think it had anything to do with FTD, but who knows since they just don't know enough about this disease.
Often now, I will say something. Then after I have said it, I will think to myself that it just didn't sound right but I can't figure out what I said or even what I meant. It is getting scary since I know this will only get worse as time goes on.
I have learned to appreciate one of the worsening symptoms. I read on my Nook so that I can enlarge the print which reduces the problem of the double vision. I will go through the library of the books stored in the device and will see a book and think I didn't read it. I will read it again. There is this niggling feeling that I read it before, but I can't remember it. I have only been using my nook for 3 or 4 years, so I should be able to remember. I used to be able to talk about a book I had read more than 20 years ago. I guess the bright side would be that I can save money on buying books if I keep rereading the same ones.
I keep trying to see the bright side!
Sunday, February 21, 2016
Not As Easy As It Used to Be
It is impossible to inform people often enough about the AFTD www.theaftd.org.
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
Sunday, February 14, 2016
Love, (Sweet?) Love
First of all, today is Valentine's Day, so I wish all who read this a very happy Valentine's Day. If you are reading this after today, then I truly hope it was a happy day for you.
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Sunday, February 7, 2016
Just Pray Harder
I am finally going to tackle a subject that has been irritating me to no end. It is a challenge though. How do you talk about religion without offending anyone? I probably can't, so those of you who don't agree, please realize this will only express my feelings and I respect yours as well.
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
Sunday, January 31, 2016
Be Your Own Advocate
http://memory.ucsf.edu/ftd/overview/ftd/treatment/multiple/medications-avoid
I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:
"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."
I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.
I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!
Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.
I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.
If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.
The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs. The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.
In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.
We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!
I am leading off today with a website that lists drugs that are not good for those with FTD. Notice this statement in the lead-off paragraph:
"Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD."
I continue to be amazed and frustrated each time I learn that someone with FTD has been prescribed these drugs. I am pretty sure this issue relates to the problem that even physicians have no idea what FTD is! They hear "dementia" and automatically assume it is Alzheimer's or that it should be treated in the same way. It downright frightens me that there are so many with FTD who are being misdiagnosed or improperly treated.
I know I have written before about my own experience with these drugs. I was prescribed Aricept (later changed to Razadine due to horrible nightmares) and Namenda. The cost of the Namenda alone, would put me in the "donut hole" by the month of March, which meant I had to pay out of pocket for the remaining nine months. I was going broke by taking a drug that was doing no good. I weaned myself off both of the drugs and was amazed at how clearer my mind was. I describe it as "less fuzzy." I would never suggest that anyone removed themselves from the drugs on their own the way I did. It should always be discussed with a physician first to safely wean off any drug. I am very fortunate that I did not encounter a problem on my own, it was pretty darned stupid of me. I know better!
Right now, I am taking a prescription drug to, hopefully, allow me to pass a kidney stone. I am experiencing an absolutely horrible constant headache. Writing this blog entry is the first productive thing I have done in the five days I have been taking the drug. I immediately tried to find any research about the drug being harmful to those with FTD, but could not find anything. I did find that a severe headache is a fairly common side effect of the drug in general.
I would have quickly discontinued taking the drug, except that the other alternative was surgical removal under full anesthesia. While I have not found any research to confirm a link, I have read of specific instances where the person with FTD or the caregiver, observed a decline after being given anesthesia.
If this medication doesn't help me pass the stone on my own, I will insist on a sit-down conversation with the anesthesiologist prior to the day of surgery. I am thinking there should be alternative means of anesthesia available, such as a spinal block. I would, of course, not refuse anesthesia if faced with no alternative.
The first part of this entry was triggered by hearing, yesterday, of yet another person with a definitive diagnosis of FTD, not Alzheimer's, who was prescribed the drugs. The second part, at least with my recent experience, reminded me of how, when you have a diagnosis of FTD, you must work closely with all your doctors, not just your neurologist.
In my opinion, we, who have a diagnosis of FTD, and/or our caregivers have to self-educate ourselves. This means, not only to educate yourself on FTD, but to keep up-to-date on new findings. We must be our own advocate and not be afraid to ask questions from all physicians you encounter. Insist on answers, not accept that since they are doctors, they know everything about FTD or that they know more than you do.
We learned this lesson about 8 years ago when I was diagnosed with Hodgkin's Lymphoma. My husband became my advocate. He started keeping a binder of all medical reports, lab reports, medications etc. We avoided duplicate testing by the different doctors involved with my healthcare. He actually caught a severe deficiency that needed immediate attention. Ask questions!
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