Sunday, February 1, 2015
Cabin Fever
The biggest thing I am dealing with right now is cabin fever. It seems like it has snowed every day for the past couple weeks and the weather and roads are just bad enough to not justify going out for leisure. Since I can no longer handle grocery shopping, I don't even get to go there (thankfully for me and the other shoppers). It seems like my entire social life lately has been going every two weeks to the chiropractor and to get a B-12 shot. It has been too cold to even want to venture outside. My husband is kind enough to keep part of the deck cleared of snow so that I can at least step out if I want to and so I can feed and watch the squirrels and birds, but that only entertains for so long.
We did venture out the other day to go check on my sister when I could not reach her on the phone. We check in with each other every day to make sure we are okay. She lives alone, so when I couldn't reach her that day, we drove to her place to make sure she was okay. She was fine, just hadn't charged her phone. While we were out, my husband took me to the Hallmark store, one of my favorite places to shop because the women who work there are so nice and lots of fun. Then we stopped at my favorite Greek diner for lunch. Again, a fun place to go and a fantastic place to eat.
We now know that it is worth making the effort to get out more often, even though I am a horrible back seat driver. I know I wouldn't want to be driving me around. I panic a lot over silly nothings. This simple trip brightened my spirits immensely. Especially with the piece of baklava that the waitress made me take home... it was soooo yummy! I had given her a little gift at Christmas, so she wanted to repay the favor. She also sent me off with a bowl of my favorite soup so I would have it for supper. I should give her gifts more often!
So, to all of you with FTD and to all of you caregivers, if at all possible, make those little trips to brighten the mood a little. Obviously, once you start reaching the later stages this advice would not apply, but in the meantime, make time to have some fun, even if it is an effort!
It is supposed to snow up to a foot again tonight, so I guess I will be trapped inside again for at least a few days this week. At least the days are getting just a tiny bit longer each day so we get to see the sun a couple minutes longer, at least on the days we can see the sun. Tomorrow that darned groundhog will probably predict six more weeks of winter. Hate that little varmint! Actually, those of you who don't live near Punxsutawney PA might not know about Punxsutawney Phil and his annual prediction. If not, watch the movie Groundhog Day sometime for a pretty good laugh. Just the right entertainment if you are stuck inside with cabin fever!
Tuesday, January 27, 2015
Informational Video
https://www.youtube.com/watch?v=7l4f9nGvmF4&sns=fb
The link I have posted here is a video of wife talking about her husband's battle with FTD. They were so fortunate to find Dr. Brad Dickerson at Massachusetts General Hospital who is an expert in FTD. Of course, this was after years of misdiagnosis, primarily of depression. I found their story fascinating and was greatly encouraged by Dr. Dickerson and his research. I wish every one with FTD had access to facilities and doctors like this.
The link I have posted here is a video of wife talking about her husband's battle with FTD. They were so fortunate to find Dr. Brad Dickerson at Massachusetts General Hospital who is an expert in FTD. Of course, this was after years of misdiagnosis, primarily of depression. I found their story fascinating and was greatly encouraged by Dr. Dickerson and his research. I wish every one with FTD had access to facilities and doctors like this.
Sunday, January 25, 2015
How Our Caregivers Can Make a Difference
All you caregivers out there, we couldn't do it without you! This post is to give you some insight into how you can make it even better.
If you read my last couple of posts, you will remember that I have been fighting the blues. I made some real progress in that regard this week. I am going to tell you about a couple of them, gearing this toward the caretakers so that you realize it doesn't always take a lot to improve an FTDer's life.
On Monday, my sister broke a tooth and made an appointment to get it fixed the following day. Since our dentist is about a 40 minute trip, she asked if I wanted to ride along. I jumped at the chance since it seemed like quite a while since I had been out and about. Plus, our dentist is a lot of fun. I know that will sound strange to a lot of you, but he is great. He sings to you, albeit off key. His work is excellent and he can give Novocain shots that don't hurt a bit. But I digress... My sister is braver than I am, apparently, because she chose to go without the Novocain. I thought she was crazy since I am a pain wimp, but it meant that after she was done, we could go out for an early dinner. Since my husband owed me a birthday dinner (we won't go into that!) we chose a nice restaurant, had a drink, a delicious meal and shared a dessert. Our waiter was a lot of fun and it was a nice relaxing time. Amazing how a trip to the dentist provided us with a great day spent together.
I'm going kind of backwards here, but we need to go back to last Saturday. I had agreed to have lunch with a friend from where I used to work, We hadn't gotten together for probably 2 years. I had also run into another friend whom we had not seen a while on Thursday at a doctor's appointment, and I told her that the next time they were down this way, give us a call because we would love to have them visit. Wouldn't you know it? It also got scheduled for Saturday. I was in such a tither that I actually canceled both of them the day before, because I was feeling too overwhelmed. Note to self: Don't schedule two social events on the same day!
Fortunately, the friend from work contacted me again and we set up a new lunch date for this afternoon. My husband dropped me off at the restaurant (God bless him, he sat there with me until she showed up so I wouldn't become panicked) then she drove me home afterward. That was fun too... turns out she now drives a Hummer and I had always wanted to ride in one. Though getting in was a challenge since my leg weakness is not conducive to climbing up into it. My cane would have helped, but I was vain enough that I didn't bring it along because I did not want her to see me using a cane. Silly me! Back to the lunch, we had a really good time, lots of laughing, got caught up to date on a lot of the clients whom I miss dealing with and caught up with her life and family. She is getting married in June. I hope I will be able to deal with the commotion of it all. Perhaps if I just go to the ceremony and skip the reception?
So, it doesn't take a lot to break up the boring pattern of the every day life of someone with FTD. I managed two social occasions this week without freaking out and had a good time. Okay, I confess that I did have to take an Ativan when I got to the restaurant today. That was because shortly before we left, I realized I had lost a necklace which caused me to run around in a panic trying to find it, leaving me wound up pretty tight. Finding it (in my purse where I had put if for safe keeping) helped, but needed the help of the sedative so I didn't refuse to go. I don't take them often, but sometimes they are the answer.
I almost got out the house another day this week. My husband had a couple stores he needed to visit in town, so he invited me to go with him since my trip with my sister was such a success. But then, as it neared the time to go, he started telling me where we would go, what we would do, and what we would not do. What we would not do was stop for lunch, we would just run in and out of a couple stores and hurry home so he could have the usual snacks he has for lunch each day. That quickly gave me the impression that he didn't really want me to go along, so I refused to go. Actually, I broke down and curled up in a fetal position to avoid dealing with him. Of course I was incorrect in assuming he didn't want me along. Later in the day I explained that a little encouragement was all I needed. If he simply had said he was sorry he caused me to feel badly and that it would be more fun if I came along, that he really wanted me to go, I most likely would have gone.
Why did I include this disaster? I just wanted to explain that just because someone has FTD, does not mean that you should treat them like a child and make all the decisions. It is important that we feel included. No, we with FTD (or at least I) are not able to plan the excursion, but present us with a couple little choices so we feel included. In this case, he could have asked if there was anywhere else I wanted to stop and if I wanted to stop somewhere for lunch or was I okay to just come home. Unfortunately, with my increasing limitations, I tend to feel pretty worthless and need reassurances more than I should. I'm sure he is not going to be happy I included this incident in today's blog, but I thought it was a good example for caregivers. He is actually a wonderful caregiver for me, but even he can't do everything perfect every time, and he is learning!
If you read my last couple of posts, you will remember that I have been fighting the blues. I made some real progress in that regard this week. I am going to tell you about a couple of them, gearing this toward the caretakers so that you realize it doesn't always take a lot to improve an FTDer's life.
On Monday, my sister broke a tooth and made an appointment to get it fixed the following day. Since our dentist is about a 40 minute trip, she asked if I wanted to ride along. I jumped at the chance since it seemed like quite a while since I had been out and about. Plus, our dentist is a lot of fun. I know that will sound strange to a lot of you, but he is great. He sings to you, albeit off key. His work is excellent and he can give Novocain shots that don't hurt a bit. But I digress... My sister is braver than I am, apparently, because she chose to go without the Novocain. I thought she was crazy since I am a pain wimp, but it meant that after she was done, we could go out for an early dinner. Since my husband owed me a birthday dinner (we won't go into that!) we chose a nice restaurant, had a drink, a delicious meal and shared a dessert. Our waiter was a lot of fun and it was a nice relaxing time. Amazing how a trip to the dentist provided us with a great day spent together.
I'm going kind of backwards here, but we need to go back to last Saturday. I had agreed to have lunch with a friend from where I used to work, We hadn't gotten together for probably 2 years. I had also run into another friend whom we had not seen a while on Thursday at a doctor's appointment, and I told her that the next time they were down this way, give us a call because we would love to have them visit. Wouldn't you know it? It also got scheduled for Saturday. I was in such a tither that I actually canceled both of them the day before, because I was feeling too overwhelmed. Note to self: Don't schedule two social events on the same day!
Fortunately, the friend from work contacted me again and we set up a new lunch date for this afternoon. My husband dropped me off at the restaurant (God bless him, he sat there with me until she showed up so I wouldn't become panicked) then she drove me home afterward. That was fun too... turns out she now drives a Hummer and I had always wanted to ride in one. Though getting in was a challenge since my leg weakness is not conducive to climbing up into it. My cane would have helped, but I was vain enough that I didn't bring it along because I did not want her to see me using a cane. Silly me! Back to the lunch, we had a really good time, lots of laughing, got caught up to date on a lot of the clients whom I miss dealing with and caught up with her life and family. She is getting married in June. I hope I will be able to deal with the commotion of it all. Perhaps if I just go to the ceremony and skip the reception?
So, it doesn't take a lot to break up the boring pattern of the every day life of someone with FTD. I managed two social occasions this week without freaking out and had a good time. Okay, I confess that I did have to take an Ativan when I got to the restaurant today. That was because shortly before we left, I realized I had lost a necklace which caused me to run around in a panic trying to find it, leaving me wound up pretty tight. Finding it (in my purse where I had put if for safe keeping) helped, but needed the help of the sedative so I didn't refuse to go. I don't take them often, but sometimes they are the answer.
I almost got out the house another day this week. My husband had a couple stores he needed to visit in town, so he invited me to go with him since my trip with my sister was such a success. But then, as it neared the time to go, he started telling me where we would go, what we would do, and what we would not do. What we would not do was stop for lunch, we would just run in and out of a couple stores and hurry home so he could have the usual snacks he has for lunch each day. That quickly gave me the impression that he didn't really want me to go along, so I refused to go. Actually, I broke down and curled up in a fetal position to avoid dealing with him. Of course I was incorrect in assuming he didn't want me along. Later in the day I explained that a little encouragement was all I needed. If he simply had said he was sorry he caused me to feel badly and that it would be more fun if I came along, that he really wanted me to go, I most likely would have gone.
Why did I include this disaster? I just wanted to explain that just because someone has FTD, does not mean that you should treat them like a child and make all the decisions. It is important that we feel included. No, we with FTD (or at least I) are not able to plan the excursion, but present us with a couple little choices so we feel included. In this case, he could have asked if there was anywhere else I wanted to stop and if I wanted to stop somewhere for lunch or was I okay to just come home. Unfortunately, with my increasing limitations, I tend to feel pretty worthless and need reassurances more than I should. I'm sure he is not going to be happy I included this incident in today's blog, but I thought it was a good example for caregivers. He is actually a wonderful caregiver for me, but even he can't do everything perfect every time, and he is learning!
Sunday, January 18, 2015
Is It Good to Remember?
The first thing you learn when you find out you have FTD, or that a loved one does, is that it is not Alzheimer's Disease. I have written about the frustration that many have while trying to get a correct diagnosis. One of the biggest differences is that, in many cases, the memory remains intact. It's in all the research and informational packets out there, including ones in the links that I have included in previous blogs.
The preserved memory is one of the big reasons it is difficult to get a correct diagnosis. Most dementia screening is geared to memory tests. I continue to have increasing difficulties with getting confused over simple things. This is not a memory issue, it is that loss of executive functioning, not being able to figure things out or think about two things at once.
When I was first diagnosed and started researching this disease called fronto temporal lobe degeneration/dementia, I was greatly encouraged that it was likely that my memory would remain intact because, without getting into the details of the different types, the type I have, Behavioral Variant FTD (bvFTD, formerly called Pick's Disease) quite often spares the memory. I figured most of the other symptoms, such as getting lost, loss of empathy for others, loss of impulse control, poor judgement and decision making, I figured these things could be compensated for until it got really, really bad. That has actually worked to some extent as my husband watches over me and has taken on a lot of responsibilities that used to be mine.
The bad part is that I do remember! I remember the person I used to be. I remember all the things I used to be able to do. I miss painting and creating things. I miss being able to watch a movie all the way through. I miss being a good friend. I miss having fun! I miss being a wife and feeling comfort in my husband's arms rather than being so dependent on his care. I miss being able to travel. I miss being able to pick up the phone and call someone. I miss being able to go somewhere or do something by myself. I actually miss working (well, sometimes, definitely not during tax season). The list goes on and on...
Now, I often find myself wishing that the disease would take my memory. That is quite selfish of me because I do realize that it would be much more difficult for my family. I am just having a really bad week, what my mother would have called "a feel sorry for Cindy week." We used to only allow one day of feeling sorry for ourselves when something rotten would happen, then we would get on with making things better. This week though, just when I would start feeling like I could get above the rotten things, another one would pile on. A huge problem of being so dependent on others is that I leave myself wide open to being disappointed.
Are you reading and thinking "Wow, get over yourself already!" or that I should stop thinking about the negatives. That's okay, because that's what I am thinking the entire time I have been writing this. As I have said many times, I am so very thankful that I still have the ability to read and be aware of what I am reading, along with the ability to write somewhat coherently... so VERY thankful. I am also extremely thankful that I have family to care for me. As I learn of others whose loved ones have abandoned them because of this disease, or the others who are way too young to have to suffer from this disease, some even still trying to raise their children, I do realize how fortunate I am. I do. It is just tough some days to balance it all out.
I apologize for being so down in this week's blog. I was going to skip writing one this week, but thought that perhaps it might help caregivers to realize some of what is trapped inside the mind of the loved one they are caring for, or at least what is trapped in my mind. Now, where did I put those bootstraps? I need to start pulling them up!
The preserved memory is one of the big reasons it is difficult to get a correct diagnosis. Most dementia screening is geared to memory tests. I continue to have increasing difficulties with getting confused over simple things. This is not a memory issue, it is that loss of executive functioning, not being able to figure things out or think about two things at once.
When I was first diagnosed and started researching this disease called fronto temporal lobe degeneration/dementia, I was greatly encouraged that it was likely that my memory would remain intact because, without getting into the details of the different types, the type I have, Behavioral Variant FTD (bvFTD, formerly called Pick's Disease) quite often spares the memory. I figured most of the other symptoms, such as getting lost, loss of empathy for others, loss of impulse control, poor judgement and decision making, I figured these things could be compensated for until it got really, really bad. That has actually worked to some extent as my husband watches over me and has taken on a lot of responsibilities that used to be mine.
The bad part is that I do remember! I remember the person I used to be. I remember all the things I used to be able to do. I miss painting and creating things. I miss being able to watch a movie all the way through. I miss being a good friend. I miss having fun! I miss being a wife and feeling comfort in my husband's arms rather than being so dependent on his care. I miss being able to travel. I miss being able to pick up the phone and call someone. I miss being able to go somewhere or do something by myself. I actually miss working (well, sometimes, definitely not during tax season). The list goes on and on...
Now, I often find myself wishing that the disease would take my memory. That is quite selfish of me because I do realize that it would be much more difficult for my family. I am just having a really bad week, what my mother would have called "a feel sorry for Cindy week." We used to only allow one day of feeling sorry for ourselves when something rotten would happen, then we would get on with making things better. This week though, just when I would start feeling like I could get above the rotten things, another one would pile on. A huge problem of being so dependent on others is that I leave myself wide open to being disappointed.
Are you reading and thinking "Wow, get over yourself already!" or that I should stop thinking about the negatives. That's okay, because that's what I am thinking the entire time I have been writing this. As I have said many times, I am so very thankful that I still have the ability to read and be aware of what I am reading, along with the ability to write somewhat coherently... so VERY thankful. I am also extremely thankful that I have family to care for me. As I learn of others whose loved ones have abandoned them because of this disease, or the others who are way too young to have to suffer from this disease, some even still trying to raise their children, I do realize how fortunate I am. I do. It is just tough some days to balance it all out.
I apologize for being so down in this week's blog. I was going to skip writing one this week, but thought that perhaps it might help caregivers to realize some of what is trapped inside the mind of the loved one they are caring for, or at least what is trapped in my mind. Now, where did I put those bootstraps? I need to start pulling them up!
Sunday, January 11, 2015
Great Article for All to Read, some trials and many blessings...
https://www.linkedin.com/pulse/16-things-i-would-want-got-dementia-rachael-wonderlin
Had to start out with this link today. It is an awesome article by someone who must be an amazing caregiver! Please read it if you are a caregiver or if you are an FTD sufferer, read it and give it to your caregivers. It is, of course, geared to people with Alzheimer's Disease as most things dementia related are. Some of her items you would have to change up a bit for FTD, like including me in family gatherings. Gatherings would need to be kept small and calm, but the idea is the same.
It should open the eyes of some caregivers, family members and friends of FTD sufferers, and those with any form of dementia. To some, all these 16 things will seem obvious, but there are still more who need to read it.
I sat with a family member for three days when she was admitted to the hospital with end stage Alzheimers, until her death. I didn't sleep much, and got few breaks, until my sister arrived from several states away to help me out. Her other family members, more closely related than I was, did not understand that she could not handle staying there alone and that no one, absolutely no one, should have to die alone. She was obviously confused with where she was and why she was there and was in pain. I held her hand the entire time and talked soothingly, praying aloud and monitored her care. It broke my heart that her immediate family members were not with her. For one of them, it was unavoidable and much regretted, for the other, it was shameful. This family member lived within a few miles and, get this, worked right in the same hospital and apparently believed that a couple quick four or five minute visits each day was adequate. I am so very thankful that I could be there with her and thank God for that blessing often. Fortunately, I was less far progressed into my own dementia at that time.
This happened about two and a half years ago. Thinking about this today kind of scared me, because I realized how much I have deteriorated in that time period. My own condition also causes me to wonder about something. My grandmother, my mother, her sister (my aunt) and her brother, all died from what was diagnosed as Alzheimer's Disease. Now that I am well informed about FTD, I strongly suspect that they all had FTD, at least to start with. Some studies show that FTD sometimes does precede Alzheimer's in a patient. Since it can only be truly diagnosed under autopsy of the brain, we will never know for sure. I do know that looking back at the earliest signs of a problem with my mother, in hindsight unfortunately, were similar to mine. The most striking similarity is that she was getting lost in familiar places and having difficulty figuring out how to get from one place to another, even if one was in sight of the other. So much more research is needed on this often ignored condition.
This week, I continue to have worsening problems with balance and walking. I also am finding myself confused as to how to do familiar things. This morning, for instance, I could not remember how to turn on my computer. I kept touching buttons on the keyboard and just staring at it, until the on button finally registered in my mind. I fight to keep these realizations from leading me into depression. I am so very thankful for my online support group. Sometimes, it is only the other sufferers who can relate and understand. I am also thankful that I see my therapist this week. She can often pull out solutions to little problems for me. I may not be fortunate enough to live in an area large enough to have medical doctors nearby who understand FTD, but I am so blessed to have found a psychologist who does.
I have been fighting the nasty virus that so many seem to have right now, that it does not help my mental state. Add in the post-holiday blues and my birthday coming up tomorrow (my birthday is a long and painful story in itself... bad memories on my birthday), I am struggling. But, I am determined to win and overcome this melancholy. Thank you for "listening" to my story about the death of my loved one from two and a half years ago. It is something that still disappoints me in a family member who I have loved deeply, still do, and felt close to. I just don't understand how someone can allow a loved one to be alone in times like that. Fortunately, I know I will not be alone. I have my husband, my daughter and my sister and I imagine they will all be by my side, they certainly are now!
Wednesday, January 7, 2015
FTD Doesn't Bring Me Flowers - Living with FTD: Multi-Tasking
FTD Doesn't Bring Me Flowers - Living with FTD: Multi-Tasking: . I have a link to suggest. http://www.huffingtonpost.com/kyrie-sue-carpenter/dementia-101-6-ways-demen_b_6373612.html The title of ...
Sunday, January 4, 2015
Multi-Tasking
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I have a link to suggest. http://www.huffingtonpost.com/kyrie-sue-carpenter/dementia-101-6-ways-demen_b_6373612.html The title of it is Dementia 101 - 6 Ways Dementia Changes How You Think. This one is, as most things are, more geared to Alzheimer's Dementia, but there are some helpful bits in there anyway. May be new info for some of you, or a source of info to send to someone who does not understand what you are going through, It is short and sweet, no in-depth stuff, but a good overview. Most places I go to get more information about Fronto Temporal Lobe Degeneration (that's the latest term, degeneration instead of dementia) it will say "loss of executive functioning." This brief summary of dementia gets into that a little. Basically what executive functioning means is being able to figure out how to do things, prioritize, multi-tasking.
I have come to realize that life includes a lot more multi-tasking than we realize. I am now attempting to break up all my tasks into smaller ones. For instance, I will set a goal of cleaning one or two rooms a day, instead of trying to do the whole house. Also, since it now takes an entire week to clean the house, I have learned to accept some dust. I even break down cleaning one room into smaller tasks, such as putting things away, get out the cleaning supplies, cleaning the counters, cleaning the sink etc. Just focus on a small task and worry about another one after it is done, unclutter the mind that can't handle clutter.
All tasks, even daily tasks taken for granted, have to be broken down. Something as simple as getting on the internet becomes: make a cup of coffee, go to your computer, boot up the computer, wait for it to boot up. I don't know if I am explaining this well enough. I can't think "go to the computer and check your email," it has to be broken down to separate thoughts. Unfortunately, often I get the computer turned on but totally forget why I was going online.
People are always trying to reassure me, "It's not dementia, I often go into a room and forget why I went in there." Yes, I used to do that too when my brain was still healthy, we all do it. While that is a good analogy, you have to magnify that confusion by at least times 10 to even begin get to the confusion of FTD. Incidentally, in one of my online searches, I found an explanation for why you forget why you went into a room. Your brain see the doorway as a portal, a signal that it is in a different place so that triggers a response of thinking you are switching gears, starting a new task. Made sense to me.
Just this morning, the knob on my desk drawer was really loose and I fiddled with it for at least ten minutes until I could figure out that I needed a screwdriver and a wrench. Then I decided I could live with it loose, didn't even attempt it. I used to be the one who did all the repairs in our house because my husband was always working. I even did plumbing repairs as long as it didn't take a blowtorch. I was always smart enough to not trust myself with one of those. I'll stop droning on about it, I sometimes forget that "normal" people don't need things explained to them six times.
A quick update on how I am doing: I find myself, more and more often, stuttering and searching for words. I give up and stop talking because it doesn't seem worth the effort. Of course, I have always talked too much anyway, so many probably find that a good thing. The gait problems are getting worse as well, making walking more uncomfortable. At my daughter's home for Christmas, she lives in a third-floor walk-up apartment and the stairs are the open kind. This was doubly difficult. Not only did my legs not want to listen to my brain, but the open stairs made my depth perception problem worse. I broke down and used help... an old walking stick my dad made for my grandpap years ago. Doesn't seem so much like a cane in my mind, just a family heirloom. It's getting close to the point where I will have to seriously consider using one though. I am so very lucky that my husband and daughter have enough patience to stick with me while I slowly creep along.
Sunday, December 21, 2014
Christmas is Coming!!!
This week has been stressful as we get closer and closer to Christmas. We are travelling to our daughter's home this year, so planning and stress has increased. I've made lots of lists which certainly help. The biggest thing that helps is the realization that it doesn't matter if I forget anything or don't get something done. The only thing that matters is that I get to see our daughter for Christmas! The gifts are wrapped, the baking is done and cookie trays have been delivered or mailed. I cut back on the number of cookies baked and gifts bought to reduce the stress and it doesn't matter because those aren't the important things. Though some who love my cookies may disagree.
Today is Sunday, but we still had to run some errands. We needed to get what I need for Christmas dinner and also sent a list to my daughter of what I need her to have on hand. I have kept our Christmas dinner simple and she will help me cook, so no worries there. We went to the state liquor store to get some bubbly for Christmas morning mimosas and some wine for with the dinner (okay, I'll admit it, I had to call my daughter and ask her "what is that wine I like?") then went to my favorite Hallmark store. They called a couple days ago to invite me to their "secret sale." They started this a couple years ago. They call their "top customers" and invite them in, with a code word, so we can get the day after Christmas bargains ahead of time. Since there is no way I would venture out the day after, just like I avoid Black Friday, I love this opportunity.
I just love this Hallmark store. It's not the biggest of ones of all that I have frequented in the various places I have lived across the country, but it is definitely the friendliest. The same pleasant, lovely ladies have worked there forever, or at least for the 10+ years we have lived here now. They almost always remember my name, maybe only the first or the last, but they always seem happy to see me and I am just as happy to see them. Today, though, I made a total fool of myself. My FTD kicked in big time and got me totally confused and befuddled, enough so that it was plainly obvious. The loveliest lady of all was helping me and was as sweet and helpful as always, very patient and understanding. When I still couldn't remember what the ornament was that I still wanted, she said to just call her when I remember and she will set one back for me. See what I mean? Wonderful store, wonderful service! Unfortunately, just as I was turning away from her, I saw "the look." What look, you say? The look of sympathy, the look of "that poor woman, what a shame," the look of pity... that look!
The look comes from love and caring, but it totally defeats me sometimes. I don't want to be the person who is pitied. I am so very proud of all that I can still do and still have my pride, maybe too much, but I definitely have it... until I see the look. I don't know how to explain to you how to not show it. It is pretty difficult when you see someone you care about being defeated by FTD, or any other dementia, to not feel sympathy or pity to some extent. Perhaps my advice would be to just hold it in a few more seconds until you know they can't see it in your eyes.
Above all else this week, I wish you all a very blessed and Merry Christmas. May it be filled with love and comfort and even throw in a big bunch of fun!
Today is Sunday, but we still had to run some errands. We needed to get what I need for Christmas dinner and also sent a list to my daughter of what I need her to have on hand. I have kept our Christmas dinner simple and she will help me cook, so no worries there. We went to the state liquor store to get some bubbly for Christmas morning mimosas and some wine for with the dinner (okay, I'll admit it, I had to call my daughter and ask her "what is that wine I like?") then went to my favorite Hallmark store. They called a couple days ago to invite me to their "secret sale." They started this a couple years ago. They call their "top customers" and invite them in, with a code word, so we can get the day after Christmas bargains ahead of time. Since there is no way I would venture out the day after, just like I avoid Black Friday, I love this opportunity.
I just love this Hallmark store. It's not the biggest of ones of all that I have frequented in the various places I have lived across the country, but it is definitely the friendliest. The same pleasant, lovely ladies have worked there forever, or at least for the 10+ years we have lived here now. They almost always remember my name, maybe only the first or the last, but they always seem happy to see me and I am just as happy to see them. Today, though, I made a total fool of myself. My FTD kicked in big time and got me totally confused and befuddled, enough so that it was plainly obvious. The loveliest lady of all was helping me and was as sweet and helpful as always, very patient and understanding. When I still couldn't remember what the ornament was that I still wanted, she said to just call her when I remember and she will set one back for me. See what I mean? Wonderful store, wonderful service! Unfortunately, just as I was turning away from her, I saw "the look." What look, you say? The look of sympathy, the look of "that poor woman, what a shame," the look of pity... that look!
The look comes from love and caring, but it totally defeats me sometimes. I don't want to be the person who is pitied. I am so very proud of all that I can still do and still have my pride, maybe too much, but I definitely have it... until I see the look. I don't know how to explain to you how to not show it. It is pretty difficult when you see someone you care about being defeated by FTD, or any other dementia, to not feel sympathy or pity to some extent. Perhaps my advice would be to just hold it in a few more seconds until you know they can't see it in your eyes.
Above all else this week, I wish you all a very blessed and Merry Christmas. May it be filled with love and comfort and even throw in a big bunch of fun!
Sunday, December 14, 2014
Happy Holidays
I titled this post "Happy Holidays." No, this doesn't mean I am being politically correct and not saying Merry Christmas. FTD'ers are not very often politically correct since we have no filter between brain and mouth. For instance, I now have a horrible potty mouth and say things I would never have even thought, much less said out loud. It is sometimes quite scary and makes it very easy to offend others.
What I want to talk about is literally keeping the holidays happy. I was lucky with Thanksgiving. We keep Thanksgiving simple, usually with a limited group of family, or maybe a friend or two thrown in. I don't remember ever having more than 10 for Thanksgiving. This year, it was just three of us and I prepared as much of the meal ahead of time as I could and then at the last minute when I needed help, I asked for it. I also screamed out for them to shut up, that I needed calm. Fortunately, they love me enough they understood.
I have always ensured that my Christmas shopping was done by Thanksgiving. I started doing this when we moved to Philadelphia a bunch of years ago and I discovered that the phrase "City of Brotherly Love" meant nothing among Christmas shoppers! So that part was okay again this year. I am well known within our circle of family and friends as a baker. I love to do it and was always pretty good at it. I used to say I was internationally acclaimed as a baker, but that was only because two friends had moved to foreign countries... one to Canada and one to Brazil, but one is already back and the other is moving back on Christmas day.
I have discovered that baking is no longer second nature to me. Some of my cookies are more complicated than others, others easy but time-consuming, and the rest pretty darned easy. Uh, not so much anymore. The complicated cookies that used to take an entire day to make, this year took me three days... one to make the dough, one to make the cookie and one to fill the cookies. Needless to say, I'm pretty far behind this year. I used to spent 3-4 days doing all my baking, but have already put in a full eight days and still have five more kinds to go. This may have to be the last year I make them all, and this is a very sad realization for me. But to have any hope of having a happy holiday season, I must simplify things.
All the presents I bought before Thanksgiving? Not a one of them is wrapped yet. My husband addressed the Christmas cards, but I still have to write the notes and sign the cards. Notes will definitely be just a few words since my handwriting is now horrid and gets illegible after a while thanks to my FTD. I can't bring myself to put the gifts in gift bags to make it easier, but I'm guessing I will have to do that next year.
So, if you have a loved one suffering from an FTD, here's some ideas to help. Offer assistance. Offer to wrap packages. Offer to help put up decorations. Offer to help with baking. I, personally, can't bring myself to let anyone help with my baking, but have learned to let my husband do the cleaning up afterward and I do make a mess! I do sometimes accept his offer to help me put all the ingredients in the bowl so I don't lose count or leave something out. Offer to bring a meal a couple times in the couple weeks leading up to Christmas. I find that after doing a Christmas related task, be it decorating, baking or anything else, when it comes to dinner time, I'm at the point that one more decision or one more task is too much. Yesterday, after baking, I literally curled up in a ball on my bed and hid for a couple hours. When I was able to come back out, my wonderful husband volunteered to go pick up some dinner. I have help addressing cards, but others may not and that would be a big help.
Most of all? Help keep things as calm and quiet as possible. If they reject your help, try to stay out of their way so you don't add to the confusion. And, when like I did today, they leave a vital ingredient out of a recipe (In today's case, omitting a entire pound of powdered sugar makes your cookie filling pretty darned bland.), laugh with them and help them fix it. In this case, adding the sugar at the end of the process changed the consistency quite a bit, but it still tastes as good.
The ultimate help? Keep things simple!!! And... for the FTD sufferers reading this, don't be as stubborn as I am. There is nothing shameful about having to ask for and accepting help and cutting back on some of the traditions. Keep it happy!
What I want to talk about is literally keeping the holidays happy. I was lucky with Thanksgiving. We keep Thanksgiving simple, usually with a limited group of family, or maybe a friend or two thrown in. I don't remember ever having more than 10 for Thanksgiving. This year, it was just three of us and I prepared as much of the meal ahead of time as I could and then at the last minute when I needed help, I asked for it. I also screamed out for them to shut up, that I needed calm. Fortunately, they love me enough they understood.
I have always ensured that my Christmas shopping was done by Thanksgiving. I started doing this when we moved to Philadelphia a bunch of years ago and I discovered that the phrase "City of Brotherly Love" meant nothing among Christmas shoppers! So that part was okay again this year. I am well known within our circle of family and friends as a baker. I love to do it and was always pretty good at it. I used to say I was internationally acclaimed as a baker, but that was only because two friends had moved to foreign countries... one to Canada and one to Brazil, but one is already back and the other is moving back on Christmas day.
I have discovered that baking is no longer second nature to me. Some of my cookies are more complicated than others, others easy but time-consuming, and the rest pretty darned easy. Uh, not so much anymore. The complicated cookies that used to take an entire day to make, this year took me three days... one to make the dough, one to make the cookie and one to fill the cookies. Needless to say, I'm pretty far behind this year. I used to spent 3-4 days doing all my baking, but have already put in a full eight days and still have five more kinds to go. This may have to be the last year I make them all, and this is a very sad realization for me. But to have any hope of having a happy holiday season, I must simplify things.
All the presents I bought before Thanksgiving? Not a one of them is wrapped yet. My husband addressed the Christmas cards, but I still have to write the notes and sign the cards. Notes will definitely be just a few words since my handwriting is now horrid and gets illegible after a while thanks to my FTD. I can't bring myself to put the gifts in gift bags to make it easier, but I'm guessing I will have to do that next year.
So, if you have a loved one suffering from an FTD, here's some ideas to help. Offer assistance. Offer to wrap packages. Offer to help put up decorations. Offer to help with baking. I, personally, can't bring myself to let anyone help with my baking, but have learned to let my husband do the cleaning up afterward and I do make a mess! I do sometimes accept his offer to help me put all the ingredients in the bowl so I don't lose count or leave something out. Offer to bring a meal a couple times in the couple weeks leading up to Christmas. I find that after doing a Christmas related task, be it decorating, baking or anything else, when it comes to dinner time, I'm at the point that one more decision or one more task is too much. Yesterday, after baking, I literally curled up in a ball on my bed and hid for a couple hours. When I was able to come back out, my wonderful husband volunteered to go pick up some dinner. I have help addressing cards, but others may not and that would be a big help.
Most of all? Help keep things as calm and quiet as possible. If they reject your help, try to stay out of their way so you don't add to the confusion. And, when like I did today, they leave a vital ingredient out of a recipe (In today's case, omitting a entire pound of powdered sugar makes your cookie filling pretty darned bland.), laugh with them and help them fix it. In this case, adding the sugar at the end of the process changed the consistency quite a bit, but it still tastes as good.
The ultimate help? Keep things simple!!! And... for the FTD sufferers reading this, don't be as stubborn as I am. There is nothing shameful about having to ask for and accepting help and cutting back on some of the traditions. Keep it happy!
Sunday, December 7, 2014
FTD Info, Safety Aids, and a Huge Thank You!
First off today, an update to last week's post: I found the source of the list of differences between FTD and Alzheimer's that I included. It is from the Association for Frontotemporal Degeneration and can be viewed at
http://www.theaftd.org/understandingftd/ftd-overview
Lots of good additional information there, definitely worth checking out by caregivers, sufferers, loved ones and just anyone interested in knowing more.
I have another practical suggestion and recommendation. I have mentioned on previous posts that I have developed weakness in my right leg. It seems like the signal does not go between brain and leg. Because of this, I have been tripping a lot and falling as well. I don't know if I mentioned it before, but one of the first things we did was re-install the door leading to the finished basement rooms. This was in case I again fell in the upstairs hallway. If there was no doorway, I think we would have put up a gate of some sort, but would have never called it a baby gate. That would have been too humiliating, but I digress here.
The next step we decided we need to take was to remove unnecessary throw rugs and to adhere the other rugs to the floor. I remembered hearing about "Ruggies" on infomercials. I was hugely skeptical, because the claims made in infomercials are in the category of "if it sounds too good to be true, it probably isn't true" category. But I thought, what the heck, why not try them since I couldn't come up with a better solution. I bought mine on ebay, because I am reluctant to trust those "call now" numbers and give my credit card info. I am pretty sure, though, that they can also be bought in stores that have an "as seen on tv" department. I know CVS has a section of this stuff, as well as our local department store, Boscov's. I imagine a lot of other stores do as well, but, again, I am digressing.
These things really work! It took me a while to figure them out because I was stubborn enough that I had to do it and couldn't ask my husband to help. I forgot that I should read the directions. Oh no! I must be turning into a man! Sorry, guys, I know it's my FTD and that men just can't help not asking for directions! After reading the directions, it was pretty easy. The part I was missing was the statement of "if the Ruggies will not stick to your rug, first attach one of the pieces of adhesive in the other packet directly on to your rug, then add the Ruggie. I now have the corners of our doormat, hall runner and area rug being held down without damaging either the rug or the floor. I love success!
I posted about this on the FTD patient support group that is my lifesaver and another member made an additional suggestion of a non-skid bathmat outside the tub. I should have thought about that already, but hadn't and I use terrycloth bathmats and have already slipped on the floor with one. I am lucky that our shower has strong grab bars (another suggestion if you don't have them) and one is right there by the entrance to the tub, so I am usually hanging on to that when stepping out. A nonskid bathmat is next on my to-do list. It will frustrate me though, because the newer washing machines tell you to never, ever, wash them in the washer and I cannot imagine not being able to launder a bathmat. If I find a solution to this one, I will be sure to post about it.
That's about all I have to drone on about this week. Except for telling you how wonderful my husband is to me. He even went to the grocery store by himself today because I knew it was not a good day for me to try to deal with it. There is a second private Facebook support group I go to, this one for caregivers and sufferers both, and when I see the posts of some of the caregivers and their anger toward their loved one and them even ridiculing their loved one, I realize how great he is and how patient, forgiving and loving he is to me. How horrible the lives of those sufferers of FTD must be in that environment. Thanks, Mike, I love you!
http://www.theaftd.org/understandingftd/ftd-overview
Lots of good additional information there, definitely worth checking out by caregivers, sufferers, loved ones and just anyone interested in knowing more.
I have another practical suggestion and recommendation. I have mentioned on previous posts that I have developed weakness in my right leg. It seems like the signal does not go between brain and leg. Because of this, I have been tripping a lot and falling as well. I don't know if I mentioned it before, but one of the first things we did was re-install the door leading to the finished basement rooms. This was in case I again fell in the upstairs hallway. If there was no doorway, I think we would have put up a gate of some sort, but would have never called it a baby gate. That would have been too humiliating, but I digress here.
The next step we decided we need to take was to remove unnecessary throw rugs and to adhere the other rugs to the floor. I remembered hearing about "Ruggies" on infomercials. I was hugely skeptical, because the claims made in infomercials are in the category of "if it sounds too good to be true, it probably isn't true" category. But I thought, what the heck, why not try them since I couldn't come up with a better solution. I bought mine on ebay, because I am reluctant to trust those "call now" numbers and give my credit card info. I am pretty sure, though, that they can also be bought in stores that have an "as seen on tv" department. I know CVS has a section of this stuff, as well as our local department store, Boscov's. I imagine a lot of other stores do as well, but, again, I am digressing.
These things really work! It took me a while to figure them out because I was stubborn enough that I had to do it and couldn't ask my husband to help. I forgot that I should read the directions. Oh no! I must be turning into a man! Sorry, guys, I know it's my FTD and that men just can't help not asking for directions! After reading the directions, it was pretty easy. The part I was missing was the statement of "if the Ruggies will not stick to your rug, first attach one of the pieces of adhesive in the other packet directly on to your rug, then add the Ruggie. I now have the corners of our doormat, hall runner and area rug being held down without damaging either the rug or the floor. I love success!
I posted about this on the FTD patient support group that is my lifesaver and another member made an additional suggestion of a non-skid bathmat outside the tub. I should have thought about that already, but hadn't and I use terrycloth bathmats and have already slipped on the floor with one. I am lucky that our shower has strong grab bars (another suggestion if you don't have them) and one is right there by the entrance to the tub, so I am usually hanging on to that when stepping out. A nonskid bathmat is next on my to-do list. It will frustrate me though, because the newer washing machines tell you to never, ever, wash them in the washer and I cannot imagine not being able to launder a bathmat. If I find a solution to this one, I will be sure to post about it.
That's about all I have to drone on about this week. Except for telling you how wonderful my husband is to me. He even went to the grocery store by himself today because I knew it was not a good day for me to try to deal with it. There is a second private Facebook support group I go to, this one for caregivers and sufferers both, and when I see the posts of some of the caregivers and their anger toward their loved one and them even ridiculing their loved one, I realize how great he is and how patient, forgiving and loving he is to me. How horrible the lives of those sufferers of FTD must be in that environment. Thanks, Mike, I love you!
Sunday, November 30, 2014
Please Excuse My Whining
Ahhh... another week, another frustration of someone I care about not believing there is anything wrong with me. I cannot begin to explain how great this frustration is. Here I am, trapped in this brain that just won't cooperate with me, but because not everyone can see the symptoms, the disease doesn't exist.
I stumbled across a list of differences between Fronto Temporal Dementia and Alzheimer's Disease that might help others understand just a tad better. I wish I knew the source of the excerpt because I suspect there might be more beneficial information there, so I will keep looking. In the meantime:
Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.
I stumbled across a list of differences between Fronto Temporal Dementia and Alzheimer's Disease that might help others understand just a tad better. I wish I knew the source of the excerpt because I suspect there might be more beneficial information there, so I will keep looking. In the meantime:
Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.
FTD vs. Alzheimer’s Disease
*Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:
*FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer’s disease is loss of memory.
*FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.
*FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but may retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time). AD patients display increasing memory deficits, but typically retain socially appropriate behavior.
*Some FTD patients may have only language dysfunction (this is seen in the two types of progressive aphasia: semantic dementia and progressive non-fluent aphasia). And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object. The language decline seen in AD patients involves a milder problem with recalling names and words.
*FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor (similar to Parkinson disease), or muscle atrophy and weakness.
I will add a little more information to go with this. FTD does not present itself the same in each case. Most will have a combination of the symptoms listed or sometimes just one. Bear in mind, the list above does not cover all the possible symptoms, it is just pointing out some differences between the two diseases.
For instance, at the risk of repeating information from previous posts, I was definitely in the average age span when first diagnosed. I definitely fall into the category of behavioral and personality changes. (One item not included in the above list in this category, is apathy or a flatness of emotions, feeling no empathy for others... totally a change from the person's previous personality.) I do struggle with speaking, more so when stressed or uncomfortable. I will struggle for the correct words, my speech pattern is slower and I stutter, which before was never an issue with me. I have difficulty operating things such as the microwave, stove and washing machine. A few months ago, I started having some motoring issues. My right leg just doesn't seem to get the messages from my brain and often drags when I am walking. I have mentioned before that I have started falling more frequently and am beginning to have problems clearing my throat and sometimes with swallowing. Not to forget my first symptoms of constantly getting lost, even in familiar places, and the lack of impulse control.
As I have said a few times before, I am still blessed with the ability to read and, obviously can still write. Writing is much easier than speaking, because if I can't think of the words, I can sit here until I do or try to come up with alternatives. I also have the opportunity to edit and there sure is not editing or filtering on what comes out of my mouth!
All of this explains why people have trouble believing I have FTD. For starters, they love me and don't want me to have anything wrong with me or my brain. Secondly, most of them don't see me often and some see me rarely and our only communication is by phone and/or internet. It's pretty difficult to pick up on the symptoms that way. Well, except for the personality changes and the lack of a verbal filter on my mouth. These are people with whom I am most comfortable, so the speaking problems are at a very minimum when talking with them. In addition, most of them have have previously dealt with someone suffering from Alzheimer's Disease, and have trouble realizing the differences. So I do understand why they have trouble accepting or believing that there is something wrong with my brain. I suppose I should feel grateful that not everyone realizes how uncooperative my brain is, but the struggle continues. My frustration lies in that they don't recognize what I go through just to make it through the day and don't understand why I no longer paint or no longer volunteer the way I used to or why I am no longer active in my church. It hurts that they are perhaps thinking I have just become lazy and don't care anymore.
Well, I apologize for the length of this post and for the whining. Hopefully, despite that, my frustrations will open some eyes to the differences between the types of dementia and let the other sufferers know they aren't alone.
Sunday, November 23, 2014
Support Groups
I am learning just how important support groups are to those with FTD. This disease is so very much misunderstood. Even a lot of member in the medical community have no clue about what it is or what its effects are. All the neuro-psychological testing seems to be geared to Alzheimer's disease. The online support group that I have found is exclusively for those with a confirmed diagnosis of an FTD, I have learned more about my disease on this Facebook page than I have anywhere else.
I have learned that the headache that I can never get rid of is common among those with FTD, as well as sleep difficulties, balance issues and falling. I am somehow happy to know that I am not as bad as some with my anger issues and the immediate lashing out in anger. I have had trouble for the past year with not being able to clear my throat, and have been driving my loved ones crazy with the constant noises that I make trying to do so. I never even suspected it was part of FTD until I read about another sufferer who was experiencing even more trouble with clearing his throat, to the point of choking sometimes. It is relieving to know that I am not the only one who is driven crazy by noise and who is more sensitive to smells. The information is just not out there anywhere else that I have found!
I wish I lived in an area large enough to have more people with diagnosed FTD, only so that we could have a face-to-face support group. Of course, with the extreme difficulty I had getting a diagnosis locally, who knows how many are nearby who are being treated, incorrectly, for depression or bipolar depression and who knows what else, when they really have an FTD. I was one of the lucky ones who was able to get a diagnosis after travelling only 100 miles. Many have had to travel further. It is pathetic, in my opinion, that the local medical community is blind to FTD. I am so thankful that my family doctor kept encouraging me to seek a diagnosis. She knew me well enough to know the crap the local neurologists were spouting, how it was just depression with an amnesic factor, was not correct.
While having wonderful loved ones, who try their best to understand what I am living with, there is no way for them to truly understand. That is why I find it so very helpful and reassuring to be able to communicate with others who are dealing with the same disease. As I keep saying, Fronto-temporal Lobe Dementia is a whole different animal from Alzheimer's dementia. They are definitely relatives, but FTD is still the black sheep in the family.
I am also so very lucky to have found a private psychologist who specializes in treating those with dementia and who knows that FTD exists. She readily admits she doesn't know as much as she would like to about FTD, and appreciates the information I share with her. Despite knowing more about the more common dementias, such as Alzheimer's, she is knowledgeable enough to be able to recognize the differences and to come up with helpful ways for me to better deal with it. She has been such a huge help to me. I have cut back to seeing her just once every four weeks, which is a good sign, I think. One of the best things she has me doing is breaking things down into smaller tasks and dealing with only one small task at a time. For instance, if I want to bake something, I focus on getting all the ingredients and equipment organized first. If that's all I can handle in one day, I leave it and do the actual baking the next day. I am also trying to keep my schedule less busy so that I can cope with a little more ease. By having smaller goals, I feel like a failure less often which is so important to keeping my spirits up.
I already have Thanksgiving broken down into small steps so that I am anticipating a successful family dinner. Then, who knows, maybe I will actually be able to do Christmas! Wish me luck!
I have learned that the headache that I can never get rid of is common among those with FTD, as well as sleep difficulties, balance issues and falling. I am somehow happy to know that I am not as bad as some with my anger issues and the immediate lashing out in anger. I have had trouble for the past year with not being able to clear my throat, and have been driving my loved ones crazy with the constant noises that I make trying to do so. I never even suspected it was part of FTD until I read about another sufferer who was experiencing even more trouble with clearing his throat, to the point of choking sometimes. It is relieving to know that I am not the only one who is driven crazy by noise and who is more sensitive to smells. The information is just not out there anywhere else that I have found!
I wish I lived in an area large enough to have more people with diagnosed FTD, only so that we could have a face-to-face support group. Of course, with the extreme difficulty I had getting a diagnosis locally, who knows how many are nearby who are being treated, incorrectly, for depression or bipolar depression and who knows what else, when they really have an FTD. I was one of the lucky ones who was able to get a diagnosis after travelling only 100 miles. Many have had to travel further. It is pathetic, in my opinion, that the local medical community is blind to FTD. I am so thankful that my family doctor kept encouraging me to seek a diagnosis. She knew me well enough to know the crap the local neurologists were spouting, how it was just depression with an amnesic factor, was not correct.
While having wonderful loved ones, who try their best to understand what I am living with, there is no way for them to truly understand. That is why I find it so very helpful and reassuring to be able to communicate with others who are dealing with the same disease. As I keep saying, Fronto-temporal Lobe Dementia is a whole different animal from Alzheimer's dementia. They are definitely relatives, but FTD is still the black sheep in the family.
I am also so very lucky to have found a private psychologist who specializes in treating those with dementia and who knows that FTD exists. She readily admits she doesn't know as much as she would like to about FTD, and appreciates the information I share with her. Despite knowing more about the more common dementias, such as Alzheimer's, she is knowledgeable enough to be able to recognize the differences and to come up with helpful ways for me to better deal with it. She has been such a huge help to me. I have cut back to seeing her just once every four weeks, which is a good sign, I think. One of the best things she has me doing is breaking things down into smaller tasks and dealing with only one small task at a time. For instance, if I want to bake something, I focus on getting all the ingredients and equipment organized first. If that's all I can handle in one day, I leave it and do the actual baking the next day. I am also trying to keep my schedule less busy so that I can cope with a little more ease. By having smaller goals, I feel like a failure less often which is so important to keeping my spirits up.
I already have Thanksgiving broken down into small steps so that I am anticipating a successful family dinner. Then, who knows, maybe I will actually be able to do Christmas! Wish me luck!
Sunday, November 16, 2014
This Disease Sucks!
This disease sucks! I don't know how to say it better than that.
My biggest medical fear has always been having a stroke. Cancer I dealt with. A heart attack would be bad, but most times allows for recovery. Having a stroke, and having my mind still be alert and active, but my body not able to cooperate? That has always frightened me. I remember, very well, a day, when my daughter was three years old. We were visiting the home of an older couple and the husband had suffered a pretty severe stroke. This man was brilliant. He was an architect and some of the buildings he designed were pretty amazing, in my opinion anyway. It was so sad to me that here he was trapped, unable to communicate well with even his wife. My daughter blew me away that day. She sat and interacted with this man for over an hour while we worked with his wife. When we were finally ready to leave and found her still with him, we realized that she was truly communicating with him. I finally understood it was because she was still in the mode of listening and learning, with no preconceived ideas of how things should be. She learned in that short period of time to adjust her thinking and listening to understand him. You cannot imagine how happy he was that day.
I tell you this story, not only because of how proud I was of my daughter that day, but because that fear I had of having a stroke doesn't compare to what an FTD patient experiences. Some days, we can not even figure out ourselves what our brain is telling us, so how do we explain it to others? People see us looking, physically, as we always have. We are even often able to communicate to the point that others refuse to believe there is anything wrong with us. I cannot seem to be able to explain what I am going through to those that are around me all the time and used to know me better than I know myself.
How can I explain to anyone else how my brain is working when I cannot understand it myself? I have been having a rough time the past three days. Today, I was proud of myself that I was even able to get out of bed this morning. I was feeling that incapable of coping with things that it seemed like a true accomplishment. I have written previously about how difficult the grocery store is for me to deal with and this is the day of the week that my husband prefers to do the shopping. It is an old habit from the days when I was still working and he was retired. Sunday just happened to be the most convenient time to do it, and in his mind, it still is. He records all the sports he wants to watch, we do the shopping then when we come home, he makes some snacks and sits down and watches all the sports. Usually he is ready to go about the time I have finished the Sunday paper. When I haven't, he doesn't complain, he just paces about and gets involved in all kinds of little busy tasks and makes it apparent how anxious he is to get going. I would bet that if asked, he would not recognize that he does this.
My getting ready to go, which used to be so simple and automatic, is now broken down into tiny processes, each requiring my full concentration. I must make sure I am dressed and groomed appropriately. I must sit down with the store's flyer and my stack of coupons, think of what we are short of and come up with a list. Shopping without a complete and detailed list is out of the question. I won't even get into the stress of the actual shopping. I have talked about that often enough now. I'll bet by now you are thinking "Wow, is she ever getting picky and complaining over nothing."
I don't know how to explain to you, and those in my life, how my brain works when I don't understand it myself. (I keep repeating that, don't I?) That's why I think of this little three-year-old understanding this older stroke victim. How do you get past people's preconceived notions enough that they can understand? Sometimes, I seem to be able to explain it with individual episodes and they realize why I reacted in a certain way (usually by lashing out), but they can't seem to "get it" all the time, before it gets to be too much for me to handle and I do lash out or break down.
My husband? Even though he cannot understand, he did eventually realize I couldn't handle shopping today and offered to go alone, and did a good job of it. God bless him for sticking with me!
The only people I have found who truly understand are the other unlucky FTD sufferers on my favorite online support group. They totally get it, because they are also living it. Guess what? They don't seem to be able to get anyone else to understand either. So, at least I am not alone. Maybe I should find some three year old children who can translate for me.
My biggest medical fear has always been having a stroke. Cancer I dealt with. A heart attack would be bad, but most times allows for recovery. Having a stroke, and having my mind still be alert and active, but my body not able to cooperate? That has always frightened me. I remember, very well, a day, when my daughter was three years old. We were visiting the home of an older couple and the husband had suffered a pretty severe stroke. This man was brilliant. He was an architect and some of the buildings he designed were pretty amazing, in my opinion anyway. It was so sad to me that here he was trapped, unable to communicate well with even his wife. My daughter blew me away that day. She sat and interacted with this man for over an hour while we worked with his wife. When we were finally ready to leave and found her still with him, we realized that she was truly communicating with him. I finally understood it was because she was still in the mode of listening and learning, with no preconceived ideas of how things should be. She learned in that short period of time to adjust her thinking and listening to understand him. You cannot imagine how happy he was that day.
I tell you this story, not only because of how proud I was of my daughter that day, but because that fear I had of having a stroke doesn't compare to what an FTD patient experiences. Some days, we can not even figure out ourselves what our brain is telling us, so how do we explain it to others? People see us looking, physically, as we always have. We are even often able to communicate to the point that others refuse to believe there is anything wrong with us. I cannot seem to be able to explain what I am going through to those that are around me all the time and used to know me better than I know myself.
How can I explain to anyone else how my brain is working when I cannot understand it myself? I have been having a rough time the past three days. Today, I was proud of myself that I was even able to get out of bed this morning. I was feeling that incapable of coping with things that it seemed like a true accomplishment. I have written previously about how difficult the grocery store is for me to deal with and this is the day of the week that my husband prefers to do the shopping. It is an old habit from the days when I was still working and he was retired. Sunday just happened to be the most convenient time to do it, and in his mind, it still is. He records all the sports he wants to watch, we do the shopping then when we come home, he makes some snacks and sits down and watches all the sports. Usually he is ready to go about the time I have finished the Sunday paper. When I haven't, he doesn't complain, he just paces about and gets involved in all kinds of little busy tasks and makes it apparent how anxious he is to get going. I would bet that if asked, he would not recognize that he does this.
My getting ready to go, which used to be so simple and automatic, is now broken down into tiny processes, each requiring my full concentration. I must make sure I am dressed and groomed appropriately. I must sit down with the store's flyer and my stack of coupons, think of what we are short of and come up with a list. Shopping without a complete and detailed list is out of the question. I won't even get into the stress of the actual shopping. I have talked about that often enough now. I'll bet by now you are thinking "Wow, is she ever getting picky and complaining over nothing."
I don't know how to explain to you, and those in my life, how my brain works when I don't understand it myself. (I keep repeating that, don't I?) That's why I think of this little three-year-old understanding this older stroke victim. How do you get past people's preconceived notions enough that they can understand? Sometimes, I seem to be able to explain it with individual episodes and they realize why I reacted in a certain way (usually by lashing out), but they can't seem to "get it" all the time, before it gets to be too much for me to handle and I do lash out or break down.
My husband? Even though he cannot understand, he did eventually realize I couldn't handle shopping today and offered to go alone, and did a good job of it. God bless him for sticking with me!
The only people I have found who truly understand are the other unlucky FTD sufferers on my favorite online support group. They totally get it, because they are also living it. Guess what? They don't seem to be able to get anyone else to understand either. So, at least I am not alone. Maybe I should find some three year old children who can translate for me.
Sunday, November 9, 2014
Dealing with Setbacks
It's time to admit to a couple setbacks. I have been struggling with loss of balance and problems with staggering for about nine months now. I was shocked to learn in the spring that this was probably due to my Fronto Temporal Lobe Dementia. I was learning to cope with it pretty well by using a walking stick while walking outside because our yard is on a hill and bumpy in places, by holding on to my husband or my sister's arm when walking in parking lots and leaning on a cart in stores that have them.
But this past week, I fell in the bedroom hallway. Problem with this is that there is an open stairway to the basement at the end of the hall. When we moved into this house, we removed the door to the basement to make it more open since it is a nice finished room down there. I was very, very lucky when I fell. I was heading toward the stairway and would have gone down, but I twisted myself hard enough and in time so that I fell into the doorway of one of the bedrooms instead. I needed to go to the chiropractor for the twisted back, but going down the stairs would most likely have been much worse.
Now we have the door back at the top the stairway to the basement which will, hopefully, prevent falls down the stairs. I actually found out that falls down stairs, and the injuries caused by these falls, is one of the leading causes of death for FTD patients. It is inconvenient and not as pleasantly appealing to have the door there, but definitely gives me a greater sense of security.
Going right along with the falling issue, the stumbling when walking is getting noticeably worse as well. I'm sure there are a lot of people who, when they see me out and about, assume I have been drinking. When the stumbling first started with me, I actually heard people behind me comment to that effect, sounding quite disgusted with me, and blew on by me on the sidewalk. Perhaps I should wear a t-shirt with a sign on the back "I'm not drunk, my brain just doesn't work." Well, maybe not...
I have been noticing a new element to the leg problem. It seems to me that the signal is not getting from my brain to my leg, if that makes any sense at all. I have noticed it a few times when climbing stairs. My right leg just doesn't get the idea what it is supposed to be doing. It has been of some help when I kind of push down on my thigh muscle to remind it to push in order to get up the step. A couple days ago, I had it act similarly when I was walking through a store with my sister. The right leg was forgetting to move itself forward. I had to totally focus on my walking, telling my leg to move forward and, again, pushing a little on the thigh muscle to remind it. Now I'll bet I didn't look stupid at all walking like that! At least it worked and I was able to walk out of the store.
Again this week, I am so thankful to be part of the online support group for FTD patients. When these new symptoms develop, I can quickly learn that I am not alone in experiencing them. I can also pick up some helpful tips on how to deal with the problems. We are quite a tight little community and are very supportive of each other. It is a shame that we are spread so far and wide and can't easily get together. I'll bet we could help each other out a lot and have some good times together.
But this past week, I fell in the bedroom hallway. Problem with this is that there is an open stairway to the basement at the end of the hall. When we moved into this house, we removed the door to the basement to make it more open since it is a nice finished room down there. I was very, very lucky when I fell. I was heading toward the stairway and would have gone down, but I twisted myself hard enough and in time so that I fell into the doorway of one of the bedrooms instead. I needed to go to the chiropractor for the twisted back, but going down the stairs would most likely have been much worse.
Now we have the door back at the top the stairway to the basement which will, hopefully, prevent falls down the stairs. I actually found out that falls down stairs, and the injuries caused by these falls, is one of the leading causes of death for FTD patients. It is inconvenient and not as pleasantly appealing to have the door there, but definitely gives me a greater sense of security.
Going right along with the falling issue, the stumbling when walking is getting noticeably worse as well. I'm sure there are a lot of people who, when they see me out and about, assume I have been drinking. When the stumbling first started with me, I actually heard people behind me comment to that effect, sounding quite disgusted with me, and blew on by me on the sidewalk. Perhaps I should wear a t-shirt with a sign on the back "I'm not drunk, my brain just doesn't work." Well, maybe not...
I have been noticing a new element to the leg problem. It seems to me that the signal is not getting from my brain to my leg, if that makes any sense at all. I have noticed it a few times when climbing stairs. My right leg just doesn't get the idea what it is supposed to be doing. It has been of some help when I kind of push down on my thigh muscle to remind it to push in order to get up the step. A couple days ago, I had it act similarly when I was walking through a store with my sister. The right leg was forgetting to move itself forward. I had to totally focus on my walking, telling my leg to move forward and, again, pushing a little on the thigh muscle to remind it. Now I'll bet I didn't look stupid at all walking like that! At least it worked and I was able to walk out of the store.
Again this week, I am so thankful to be part of the online support group for FTD patients. When these new symptoms develop, I can quickly learn that I am not alone in experiencing them. I can also pick up some helpful tips on how to deal with the problems. We are quite a tight little community and are very supportive of each other. It is a shame that we are spread so far and wide and can't easily get together. I'll bet we could help each other out a lot and have some good times together.
Sunday, November 2, 2014
Keeping It On the Sunny Side
I really work at trying to see the good most situations. I try to stay focused on the positive side, even in this blog. I figure that even if I am feeling down, it doesn't help if I bring everyone around me down as well. Sometimes this just does not work. It becomes a bad idea because no one knows how frustrated I've been for hours and they inadvertently add on one more stressful situation and it is the one that breaks me and I lash out at them. That is what happened one day this week.
I usually sleep later in the morning than my husband does. I experience a lot of nightmares, so it takes me longer to feel rested. One morning, he had to wake me early. We were needing some trees trimmed, especially around our power lines, and a gentleman who had done some work for us in previous years stopped by and offered to do it right then. The price was quite reasonable. If I had been fully awake, this would have been an easy conversation and an easy choice. My hesitation at giving an answer made him think I needed more information, so he kept giving me more and more. I finally snapped at him to just go ahead and do it. As the job went on, yet more decisions were necessary, building up my stress.
In the midst of the job, my sister stopped by for a visit. That was a good thing as I love her to visit so we sat down to talk over a cup of coffee, switching my focus to our conversation. After that, every question about the work required me to switch focus and resulted in my brain spinning in circles, upping my frustration level even more. I did try to keep myself calm, but I am sure that both my husband and sister could tell I was getting stressed but, hopefully, the guy doing the work didn't.
After everyone left, I began to tackle a chore I had assigned myself for that day. (Have I mentioned how many Post-It notes I use?) Like any chore, it ended up being a bit more involved than expected, but I kept at it and was doing well. Then, my husband, who was feeling relieved by having the tree trimming done, was eager to get some other neglected chores done. He interupted and offered to help me with one but I said I wasn't ready to it. After a few minutes, he suggested another one. I totally lost it! It was just too many things to think about and too many necessary changes of focus, and I couldn't deal with it. He walked away from the situation to go calm down so he didn't also react in anger... God bless him! I curled up on the floor and cried. Fortunately, I didn't take too long to calm myself this time. I went to where he was sitting and explained exactly how my meltdown had developed from the time I was awakened. It helps us both when we walk through it like that.
It is not easy for others to realize how difficult it is for someone with FTD to change focus, even over the little things. It ended up being a good moment of education for both of us, we ended up doing one of the chores he had suggested and the rest of the day was great! So there, I did find something good about it after all!
I usually sleep later in the morning than my husband does. I experience a lot of nightmares, so it takes me longer to feel rested. One morning, he had to wake me early. We were needing some trees trimmed, especially around our power lines, and a gentleman who had done some work for us in previous years stopped by and offered to do it right then. The price was quite reasonable. If I had been fully awake, this would have been an easy conversation and an easy choice. My hesitation at giving an answer made him think I needed more information, so he kept giving me more and more. I finally snapped at him to just go ahead and do it. As the job went on, yet more decisions were necessary, building up my stress.
In the midst of the job, my sister stopped by for a visit. That was a good thing as I love her to visit so we sat down to talk over a cup of coffee, switching my focus to our conversation. After that, every question about the work required me to switch focus and resulted in my brain spinning in circles, upping my frustration level even more. I did try to keep myself calm, but I am sure that both my husband and sister could tell I was getting stressed but, hopefully, the guy doing the work didn't.
After everyone left, I began to tackle a chore I had assigned myself for that day. (Have I mentioned how many Post-It notes I use?) Like any chore, it ended up being a bit more involved than expected, but I kept at it and was doing well. Then, my husband, who was feeling relieved by having the tree trimming done, was eager to get some other neglected chores done. He interupted and offered to help me with one but I said I wasn't ready to it. After a few minutes, he suggested another one. I totally lost it! It was just too many things to think about and too many necessary changes of focus, and I couldn't deal with it. He walked away from the situation to go calm down so he didn't also react in anger... God bless him! I curled up on the floor and cried. Fortunately, I didn't take too long to calm myself this time. I went to where he was sitting and explained exactly how my meltdown had developed from the time I was awakened. It helps us both when we walk through it like that.
It is not easy for others to realize how difficult it is for someone with FTD to change focus, even over the little things. It ended up being a good moment of education for both of us, we ended up doing one of the chores he had suggested and the rest of the day was great! So there, I did find something good about it after all!
Sunday, October 26, 2014
A Few Good Things...
Something wonderful happened this past week. I received an invitation to join an online support group for patients who have a confirmed diagnosis of FTD... no caregivers, no Alzheimer's patients. Not that we don't like either of these groups. We would have a much more difficult life with no caregivers and we certainly understand that Alzheimer's patients have a lot to deal with as well, but it is not the same as FTD. Unfortunately, many support groups, research programs and information get lumped together as Alzheimer's and other dementias. Great for Alzheimer's, not so great for us "others."
The support group is great in that it is a closed and "secret" group. No one who is not a member of the group can see any of the posts. That makes it a comfortable and safe place to talk. It has been eye opening to me. I have discovered that some of my nagging little problems are actually part of the disease. I have discovered that there are many others who experience the same social issues. Can you imagine what a relief this is? Maybe not, but there is something wonderful about not being "the only one" experiencing things. I don't feel so alone in it now.
Another good thing that happened this week is that there is news that the Mayo Clinic has been given $6 million dollars to research FTD's. Just FTD's, not Alzheimer's and FTD's. I imagine that amount of money won't go very far into research, but it is a good positive step. More education about FTD's has got to get out there. I often wonder how many more patients there are that do not get diagnosed because even doctors don't know enough about the diseases. It's pretty frustrating when you have to take a publication on the subject with you when you go to a new doctor to educate on the subject. It seems to me that they should already know and be able to teach the patients about it, instead of the other way around.
I also, just this week, came to realize just how much I appreciate my sister. Not that I didn't before, it's just different now. She is always there and ready to help me out. Often times, it's just getting me out of the house and enable me to do some of the things my husband has no interest in doing. Even if it is just shopping or going out for lunch. I can also talk to her and tell her "This is not helping me!" I am so very thankful that she moved back to this area a year and a half ago. She makes a big difference in my life. I actually called her and told her this a few days ago. Yes, a few tears were shed... happy tears!
All was not sunny and bright this week, but I got through it all. A little frustration here, a lot of frustration there, and while it does seem to be taking me longer to recover from stressful and frustrating events, I still can and that IS good.
The support group is great in that it is a closed and "secret" group. No one who is not a member of the group can see any of the posts. That makes it a comfortable and safe place to talk. It has been eye opening to me. I have discovered that some of my nagging little problems are actually part of the disease. I have discovered that there are many others who experience the same social issues. Can you imagine what a relief this is? Maybe not, but there is something wonderful about not being "the only one" experiencing things. I don't feel so alone in it now.
Another good thing that happened this week is that there is news that the Mayo Clinic has been given $6 million dollars to research FTD's. Just FTD's, not Alzheimer's and FTD's. I imagine that amount of money won't go very far into research, but it is a good positive step. More education about FTD's has got to get out there. I often wonder how many more patients there are that do not get diagnosed because even doctors don't know enough about the diseases. It's pretty frustrating when you have to take a publication on the subject with you when you go to a new doctor to educate on the subject. It seems to me that they should already know and be able to teach the patients about it, instead of the other way around.
I also, just this week, came to realize just how much I appreciate my sister. Not that I didn't before, it's just different now. She is always there and ready to help me out. Often times, it's just getting me out of the house and enable me to do some of the things my husband has no interest in doing. Even if it is just shopping or going out for lunch. I can also talk to her and tell her "This is not helping me!" I am so very thankful that she moved back to this area a year and a half ago. She makes a big difference in my life. I actually called her and told her this a few days ago. Yes, a few tears were shed... happy tears!
All was not sunny and bright this week, but I got through it all. A little frustration here, a lot of frustration there, and while it does seem to be taking me longer to recover from stressful and frustrating events, I still can and that IS good.
Sunday, October 19, 2014
Rough Week, But Getting Better
I probably should not write a blog entry this week, it has been a rough one for me. Nearly every day, I receive email and Facebook notices from a few different dementia and Alzheimer's support groups and research organizations. One that I received this past week really peaked my interest. It was recommending a book While I Still Can by Rick Phelps. It sounded interesting, so I downloaded it onto my Nook. Wow! I will refrain from really recommending it myself because of how it caused a downward spiral into depression for me. However, it would be an excellent book for anyone who is acting as a caregiver or who has a loved one suffering from Alzheimer's or other dementia. It gives you a good look at how it affects the patient and offers some helpful advice for caregivers.
In this book, Mr. Phelps, after much frustration, was finally diagnosed with Early Onset Alzheimer's Disease and was still in the earlier stages when he wrote the book. I truly found myself envying him in some chapters, mostly because he could still drive and do a few other things I am no longer capable of doing. In other chapters, I was thinking how fortunate I am that FTD has not yet robbed me of other abilities, mostly the ability to still read and to enjoy it.
In the chapter where he was talking about not being able to read more than a paragraph at a time, I started thinking. I still love to read and don't seem to have a lot of difficulty focusing on a book. I read an entire book nearly every day. I will admit, however, that I keep my book selections to lighter reading than I have in the past, nothing that will stimulate fear, frustration or deep thinking. In contrast to that, I can no longer enjoy watching a movie. I can handle an hour-long television show most days, but find I need to keep my hands busy doing something to keep me from getting restless. Anything longer than that, I cannot focus on or follow the story. I also can only handle one or two shows in a day. Yet, I can sit for three or four hours and read. I am extremely thankful for that.
While I Still Can helped me realize that I am not alone in a lot of other symptoms as well. He points out that some days, just the sound of a spoon dropped onto the floor is magnified to a hugely irritating level. Some days, when my husband unloads the dishwasher (Yes, I am so very lucky, he does laundry too!) I find myself clawing at my own skin and tugging on my hair, it is just that irritating to my system. Fortunately, I don't do it to a level that I actually hurt myself.. Also up there is an intense fear of crowds, due to the noise and hubbub of activity. Blinking lights are horrid, leading quickly to what I call "sensory overload." I could not understand why I have become so uncomfortable in other people's homes. Now I realize it is because in my home, I know where everything is... the rooms, the furniture and anything I might need. When out in public, I find myself avoiding eye contact with others in the fear that I might have to make conversation with them. The grocery store is now my enemy... carts going every which way, background music, screaming children, fear of seeing people I know and trying to keep track of my list and what I need to get. Again, I am very fortunate to not have to try to shop alone.
A quote included in the book summed up how I feel often times: "I used to have a handle on life... but then it fell off." I sure lost that handle this week, but with patient help from my family, I feel like the handle is back in my hand. Plus I know I get to see my therapist this week. We are planning on talking about cutting down my appointments from every two weeks to once a month. I cannot tell you enough how much of a lifesaver she has been. I strongly recommend finding a therapist who specializes in working with dementia. It takes someone who understands dementia to realize that my depression is a result of the dementia, not the cause of it!
In this book, Mr. Phelps, after much frustration, was finally diagnosed with Early Onset Alzheimer's Disease and was still in the earlier stages when he wrote the book. I truly found myself envying him in some chapters, mostly because he could still drive and do a few other things I am no longer capable of doing. In other chapters, I was thinking how fortunate I am that FTD has not yet robbed me of other abilities, mostly the ability to still read and to enjoy it.
In the chapter where he was talking about not being able to read more than a paragraph at a time, I started thinking. I still love to read and don't seem to have a lot of difficulty focusing on a book. I read an entire book nearly every day. I will admit, however, that I keep my book selections to lighter reading than I have in the past, nothing that will stimulate fear, frustration or deep thinking. In contrast to that, I can no longer enjoy watching a movie. I can handle an hour-long television show most days, but find I need to keep my hands busy doing something to keep me from getting restless. Anything longer than that, I cannot focus on or follow the story. I also can only handle one or two shows in a day. Yet, I can sit for three or four hours and read. I am extremely thankful for that.
While I Still Can helped me realize that I am not alone in a lot of other symptoms as well. He points out that some days, just the sound of a spoon dropped onto the floor is magnified to a hugely irritating level. Some days, when my husband unloads the dishwasher (Yes, I am so very lucky, he does laundry too!) I find myself clawing at my own skin and tugging on my hair, it is just that irritating to my system. Fortunately, I don't do it to a level that I actually hurt myself.. Also up there is an intense fear of crowds, due to the noise and hubbub of activity. Blinking lights are horrid, leading quickly to what I call "sensory overload." I could not understand why I have become so uncomfortable in other people's homes. Now I realize it is because in my home, I know where everything is... the rooms, the furniture and anything I might need. When out in public, I find myself avoiding eye contact with others in the fear that I might have to make conversation with them. The grocery store is now my enemy... carts going every which way, background music, screaming children, fear of seeing people I know and trying to keep track of my list and what I need to get. Again, I am very fortunate to not have to try to shop alone.
A quote included in the book summed up how I feel often times: "I used to have a handle on life... but then it fell off." I sure lost that handle this week, but with patient help from my family, I feel like the handle is back in my hand. Plus I know I get to see my therapist this week. We are planning on talking about cutting down my appointments from every two weeks to once a month. I cannot tell you enough how much of a lifesaver she has been. I strongly recommend finding a therapist who specializes in working with dementia. It takes someone who understands dementia to realize that my depression is a result of the dementia, not the cause of it!
Saturday, October 11, 2014
Be Honest and Share What You Are Feeling
A good friend of mine posted two of those cute little posters on Facebook today:
"Relationship Rules: There is no feeling more rewarding than the one that comes from being honest. Be honest, both without yourself and your partner. Life will be so much simpler."
"Do you ever get that feeling where you don't want to talk to anyone, you don't want to smile and you don't want to fake being happy, but, at the same time, you don't know what's wrong?"
Both statements hit me hard, because it reminded me about what my therapist has been helping me work through. Take the first statement and substitute the word caregiver. I tend to cover up when I can't think of the right word, can't figure something out or just feel confused. I also remember the family members I have helped care for who suffered from Alzheimer's Disease doing the exact same thing. We get pretty good at it too! This practice actually makes some sense when out in public or in a social setting, but I need to remember to be honest with my caregivers. When I don't, that is when conflict begins. For example, if I am trying to put something away and can't remember where it belongs, my husband or sister will ask "don't you remember where that goes?" or something along those lines. I don't want to admit that I can't, so instead, I find myself snapping at them, something like "Of course I know where it goes, I was looking for something else." Then I put it away wherever I can. This is not helpful to either of us, not to mention difficult to find things later. I should admit that I don't, and let them tell me where it belongs. I have to realize that they are not being critical, they are trying to help. This is a simplified example, but still brings the message across. It is much better to be honest with myself (and accept) my weaknesses. Then, together, we can figure out ways to deal with them. I have been working on this, and it truly has been keeping things calmer around here, which helps immensely. The calmer I am, the easier it is to deal with things.
On to the second statement my friend posted. I think we all have days like that. I know I certainly do. Again, I have found communication to be the issue. If I admit the feelings to myself and let my husband (or my sister) know that's how I am feeling that day, we can deal with it together. Those are the days to not take on complicated tasks, don't try to cook a meal that takes a lot of preparation, or tackle anything new. So, if I admit to the feelings I have that day, they can help me to keep things simple and calm... just what I need on those kind of days!
"Relationship Rules: There is no feeling more rewarding than the one that comes from being honest. Be honest, both without yourself and your partner. Life will be so much simpler."
"Do you ever get that feeling where you don't want to talk to anyone, you don't want to smile and you don't want to fake being happy, but, at the same time, you don't know what's wrong?"
Both statements hit me hard, because it reminded me about what my therapist has been helping me work through. Take the first statement and substitute the word caregiver. I tend to cover up when I can't think of the right word, can't figure something out or just feel confused. I also remember the family members I have helped care for who suffered from Alzheimer's Disease doing the exact same thing. We get pretty good at it too! This practice actually makes some sense when out in public or in a social setting, but I need to remember to be honest with my caregivers. When I don't, that is when conflict begins. For example, if I am trying to put something away and can't remember where it belongs, my husband or sister will ask "don't you remember where that goes?" or something along those lines. I don't want to admit that I can't, so instead, I find myself snapping at them, something like "Of course I know where it goes, I was looking for something else." Then I put it away wherever I can. This is not helpful to either of us, not to mention difficult to find things later. I should admit that I don't, and let them tell me where it belongs. I have to realize that they are not being critical, they are trying to help. This is a simplified example, but still brings the message across. It is much better to be honest with myself (and accept) my weaknesses. Then, together, we can figure out ways to deal with them. I have been working on this, and it truly has been keeping things calmer around here, which helps immensely. The calmer I am, the easier it is to deal with things.
On to the second statement my friend posted. I think we all have days like that. I know I certainly do. Again, I have found communication to be the issue. If I admit the feelings to myself and let my husband (or my sister) know that's how I am feeling that day, we can deal with it together. Those are the days to not take on complicated tasks, don't try to cook a meal that takes a lot of preparation, or tackle anything new. So, if I admit to the feelings I have that day, they can help me to keep things simple and calm... just what I need on those kind of days!
Sunday, October 5, 2014
Just Let Me Do My Own Thing
This post is directed to all the caregivers out there. First of all, God Bless You! You have one of the most difficult tasks imaginable. I can relate to your side as well because I helped care for my Grandmother, Mother and my Aunt, all who suffered from Alzheimer's and have since passed on.
I know I have mentioned this before, but one of the most difficult things for me, is to do more than one task at a time. Sometimes, though, it's not easy to realize what makes a "task." Basically, it is anything that causes me to focus my thinking. Today, it was as simple as putting away some groceries. This used to be an easy, mindless task, but not anymore. My husband distracted me several times during the process. I am sure these didn't even seem like distractions to him. When I was trying to fit things into the freezer compartment, which is never an easy task with a side-by-side, he had a bag in each hand. He asked me to take the bottle of juice out of his bag and put it into the refrigerator. The next time, it was when I was putting canned goods into the pantry and he tried to take a jar of salsa out of my bag because he knew he was going to use it during the upcoming football game. I had already left one of the jars of salsa out on the counter for him, and the interruption was just enough to get me befuddled again.
I know some of you are saying, "Wow, she is getting really picky." No, I'm not. It's just the way my mind works now (or really, how it doesn't work anymore). I truly can only focus on one thing most of the time or, sometimes, even just one aspect of a task at a time. Unfortunately, my frustration leads me to be short with him or even snap at him. I wasn't angry or upset with him, I was just totally frustrated and angry at myself because I got unfocused and stressed, leading to a difficulty completing such a simple task.
This is the point I was leading to... when a dementia patient gets angry or lashes out, please stop and realize that it is most likely not you they are angry or frustrated with... it is with themselves. Think about whether you have made the environment too confusing, sometimes even with your attempts to help. Try to calm things or simplify things, but be careful not to be condescending.
I have come up with my own word. You notice I use the term "befuddled" a lot. To me, it totally describes how my brain gets twisted up and confused. Now, I have come up with "unfuddled." Yes, a silly, made-up word, but is the process I have to go through to get myself refocused and unstressed. It sometimes helps for me to get involved in a different, simple, solitary task. One that I can focus on and be successful at completing. Deep breathing helps me as well. At times, I picture a simple jigsaw puzzle in my mind, I see it as a completed puzzle and it helps me focus. Not sure why, but it works for me. I'm sure other dementia patients will find other ways to cope.
I know I have mentioned this before, but one of the most difficult things for me, is to do more than one task at a time. Sometimes, though, it's not easy to realize what makes a "task." Basically, it is anything that causes me to focus my thinking. Today, it was as simple as putting away some groceries. This used to be an easy, mindless task, but not anymore. My husband distracted me several times during the process. I am sure these didn't even seem like distractions to him. When I was trying to fit things into the freezer compartment, which is never an easy task with a side-by-side, he had a bag in each hand. He asked me to take the bottle of juice out of his bag and put it into the refrigerator. The next time, it was when I was putting canned goods into the pantry and he tried to take a jar of salsa out of my bag because he knew he was going to use it during the upcoming football game. I had already left one of the jars of salsa out on the counter for him, and the interruption was just enough to get me befuddled again.
I know some of you are saying, "Wow, she is getting really picky." No, I'm not. It's just the way my mind works now (or really, how it doesn't work anymore). I truly can only focus on one thing most of the time or, sometimes, even just one aspect of a task at a time. Unfortunately, my frustration leads me to be short with him or even snap at him. I wasn't angry or upset with him, I was just totally frustrated and angry at myself because I got unfocused and stressed, leading to a difficulty completing such a simple task.
This is the point I was leading to... when a dementia patient gets angry or lashes out, please stop and realize that it is most likely not you they are angry or frustrated with... it is with themselves. Think about whether you have made the environment too confusing, sometimes even with your attempts to help. Try to calm things or simplify things, but be careful not to be condescending.
I have come up with my own word. You notice I use the term "befuddled" a lot. To me, it totally describes how my brain gets twisted up and confused. Now, I have come up with "unfuddled." Yes, a silly, made-up word, but is the process I have to go through to get myself refocused and unstressed. It sometimes helps for me to get involved in a different, simple, solitary task. One that I can focus on and be successful at completing. Deep breathing helps me as well. At times, I picture a simple jigsaw puzzle in my mind, I see it as a completed puzzle and it helps me focus. Not sure why, but it works for me. I'm sure other dementia patients will find other ways to cope.
Wednesday, October 1, 2014
Powerful Video
Just a short post for today. I was just scrolling through Facebook and found this link. It is a powerful video about caregivers experiencing what a dementia, in this case Alzheimer's, patient experiences day in and day out. Something everyone should see. Here is the link.
https://www.youtube.com/watch?v=LL_Gq7Shc-Y
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