Sunday, January 20, 2019

Twisted Sensations in the FTD Brain

How in the world can a gentle touch feel like pain? This is a question that has come to my mind many time. At times, if someone touches me, even a gentle touch, I somehow feel pain instead of the gentle touch that the person is intending to transmit to me.

I just spent two days researching this subject on the internet. I am amazed at how complicated our sense of touch is. I will try to simplify it from all that I read. Touch stimulates sensors in the deepest layer of our skin, the dermis. This layer of skin is loaded with a huge number of nerve endings. These nerve endings transport the feelings from touch, whether pleasant or painful touch, are converted into electrical signals. The signals then travel through the spinal column to the brain. 

One type of pain is called Neuropathic Pain which is caused by abnormalities in this system. The problem can be in the nerves, the spinal cord or the brain. Neuropathic Pain can cause people to feel pain from a stimulus that is not normally painful, such as a light touch or cold temperature. Pain in different areas of the body are sensed in different parts of the brain.

I was not able to find any information about this in any specific way to link it to FTD. However, if the touch/pain signal goes through our brain and that part of our brain is damaged by FTD, it leads to believing how it can be misinterpreted. It would also explain why some of us experience this misinterpretation of touch and others don't. FTD attacks different parts of the brain, in differing order, for each one of us, as we all know.

Another cause can be sensory overload. When we experience this, everything can become painful. I often feel like my entire body is being bitten by fire ants or being touched by stinging nettles when there is too much going on around me, changes in lighting or noise. I think all of us with FTD have experienced this and can understand why our brain will misinterpret a gentle touch as another assault on our bodies.

This also explains one of the reasons people with FTD and other dementias are reluctant to shower or bathe. The feeling of the water is not the same for many of us. The feeling of the water hitting us in the shower can overwhelm us and cause us to feel that we are being attacked. That is why some do better with a shower mounted at shoulder level or a handheld shower head. From what I have heard from others, it can cause feelings of pain no matter where it hits the body, but the head is worse. Personally, it is just getting hit in the face with water than bothers me. I have solved that by taking baths rather than showering.

Of course, the pain or fear of the water hitting the body is not the only reason many with FTD are reluctant to shower. A lot of it comes from our feelings of apathy. If you don't care about others, you may not notice or care that you smell bad or look dirty. On top of that, you don't care if it bothers anyone.

I never understood how bad this aversion to showering or bathing can be. When my husband's Alzheimer's Disease started to h progress rapidly, he developed this same aversion. I have tried all the regularly suggested steps to deal with it: a sturdy shower chair; a shower head that is mounted at shoulder level or can be removed to be handheld; a non-skid surface on the shower floor and a gentle shampoo that does not burn the eyes. I admit that I have even resorted to begging and bribing which has never worked for me. 

Now, I realize that if a simple touch on my skin can feel like pain, it certainly makes sense that the shower spray could do the same thing to him. I am still waiting for a magical answer. In the meantime, I am using waterless shampoo and antibacterial disposable wipes to stretch the time between showers. Even this is difficult for him to accept at some times. I should take a moment to tell you about the shampoo "gloves" that I found at CVS online. They are really mitts, not gloves, but they have a gel type product in them that releases as you rub the head. This is the one thing my husband responds well to. He says it is because it feels like I am massaging his head. I am not pushing you to try them, it is just one more item to try until you find something that works for you or your loved one.

I hope I have succeeded in explaining this complicated issue of senses of touch being misinterpreted in an FTD brain. Some days it seems like everything can be affected by FTD. That is one of the reasons it is such a difficult disease to deal with... whether it is the one with the disease or the caregiver. In the meantime, if you see me, please don't touch me!

Saturday, January 12, 2019

Oh, So Frustrating...

I do not think it is possible for anyone who does not have FTD to understand the frustrations we deal with. It all begins when you realize, or someone else tells you, of the symptoms you are having. Most of your friends and family will say, "Oh, come on, there is nothing wrong with you. I do that too!"  Then, when you finally make that doctor's appointment, the doctor often dismisses your complaints, orders an anti-depressant or refers you to a neurologist.

I cannot begin to tell you of how many people with FTD were put through batteries of testing by neurologists, only to say the same things or blame it on depression. If not depression and they understand dementia, most will diagnose Alzheimer's Disease. The first action most of them take, at this point, is to hand you a prescription designed to treat Alzheimer's. (Aricept, Namenda, Exelon, Galantamine) That would be great if these meds improved FTD, but they usually do not and, in fact, they often worsen FTD.

By the time many of us are diagnosed, we are much further along in the FTD progression and have dealt with a lot of stress in trying to locate a neurologist who actually does know FTD.

I know I have ranted about this subjects many times, but it struck me again this week. I have been having brutal headaches in the back of my head, nearly constant.  This headache is similar to an FTD headache in the fact that it is extremely painful and nothing relieves the pain. I knew the area was in the area of the occipital lobe and I knew I was scheduled to see my retina specialist soon, I waited. I told him about the pain and he asked me to show him where it was. He responded that I had shown him the area of the occipital lobe. Gee, why didn't I think of that! That was the end of the conversation. I was so frustrated because this man is a brilliant retina specialist and has been saving my vision for nearly 30 years. Because of our history, I do not hold this against him.

My next step was to break down and call my family doctor. She reacted immediately and ordered an MRI and carotid artery scans. When these provided no answer, she referred me to a neurologist. I really do not like neurologists after being misdiagnosed by three of them here in town. I did agree to see a fairly new one who is much younger, so I thought she should have learned about FTD in med school. I had to wait over three weeks for an appointment with her, even though I begged them, explaining how much pain I was in.

Finally, at the appointment, where I told her I had FTD, she immediately said "Are you on the dementia drugs?" No, I am not, they are contra-indicated for FTD. "So, you aren't taking them?" No, not only are they contra-indicated, they often worsen FTD. "Oh."  About five minutes later, "Would you consider taking the dementia drugs?" The frustration came out and I growled out "I refuse to take a medication that might worsen my dementia." Fortunately my sister was in the exam room with me. She took hold of my arm and whispered "It's okay." So I was able to proceed.

Then the doctor asked about my double vision since I had noted that as one of my symptoms. "Have you tried prisms?" What? (With her accent, I had difficulty understand the word.) "Sometimes at the eye doctor they will put prisms in your glasses and that fixes it." No, that would not work because the problem is in the brain. It is unable to bring together the images that each eye sees. "Will you try them?" Okay, I lost it again. I asked her, in a questioning, and probably sarcastic, tone of voice, "Do they make prisms for the brain? I didn't know that." Again, my sister had to calm me down before I was asked to leave.

She did give me a diagnosis of bilateral Occipital Neuralgia. That basically means pain in the head, which is a shade better than pain in the butt which we already know I am! She referred me to the only doctor in our area who gives the needed injections into the optic nerves as a nerve block. It was either that or adding yet another medication that may or may not work and may or may not conflict with other meds I take. That had been her answer when I asked if the would. Even though I do not look forward to getting injections that close to the brain, I chose that option. She said she would send the referral and the pain management office would call me to make an appointment.

I did not hear for 2 1/2 days, so I called the pain management center. Yes, they had the referral. No, they could not give me an appointment until I filled out the packet of forms that they had mailed to me on that day and I sent them back. I have not received these as of yet which means until I get them filled out and delivered back to them it will be yet another week. I know how busy this doctor is because we had to wait weeks to get a spinal tap done on my husband a few years ago. I also know how good he is and I feel safe putting myself in his hands.

Bottom line, by time I get the nerve blocks, I will have suffered through this horrible pain for at least two months. No medication touches the pain and it is debilitating most of the time.  This is only one event in my nearly eight years since I first noticed symptoms of dementia. Experiences like this are fairly common for those of us with FTD and is just one in a long list of frustrating experiences I have had to deal with and I am not alone.

I won't go into detail about many other frustrations we must cope with: The inability to do things that we could do before FTD, things that we used to enjoy. The times when our body fails us and we fall or stumble into things. The times our loved one or caregiver criticizes us or refuses to believe that we truly cannot do something they are expecting us to do. The number of friends and/or family members who now ignore us. Obviously, this list is but a tiny few of the frustrations we deal with constantly and that worsen as our disease progresses.

Whatever you do, please, please, please do not tell us "Oh, you look fine" or "You are too young to have dementia."  I am at the point of frustration where I just might kick the next person who says it to me! 

Friday, January 4, 2019

I Am Finally Writing Again


I apologize for being missing in action for the past few weeks. I was having enough trouble getting through the days that I could not think beyond that. Why? A new symptom, of course. More about that later.

There have been a few things I have read about this past months while being MIA. I read an article about CBD oil, Many of us are using this oil to treat various things with our FTD, primarily stress. While they acknowledged that it probably helps with stress, CBD oil can interfere with prescription medicines. The most serious reactions are those medications for the heart and blood pressure.

So, please, like any over-the-counter medications or supplements, make sure you inform your doctor you are using CBD oil. Ideally, please discuss it before you start using the oil, especially if you are on any medication for heart and/or blood pressure issues.

Also, a friend who also has FTD, found an article that was extremely interesting to me. I think it is one of the best stories and explanation about FTD that I have ever seen. So, I am sharing the link to it. Please take time to read it. I might be one you will want to share with others to help them understand just what we are dealing with.

https://l.facebook.com/l.php?u=https%3A%2F%2Ftheconversation.com%2Fexplainer-how-is-frontotemporal-dementia-different-and-what-are-the-warning-signs-95436%3Ffbclid%3DIwAR3edcGbGfz3fyGNMv3JvGiP5Ya_gyYqI9Jn90l9jQMbw2T9lwLWZDpH8xs&h=AT0eewj6fVacY6zZxEilg1G8-2OPO3LFsLTiO0R-IC1882OafUvs1ObCiWdPdcTPUSfvxC5gnQwYCI8A39pbjSSh_RRMfPslkk4rWhMlnCe6LtgzDFJg12Y

Another important bit of info: The AFTD 2019 Educational Conference will be coming up in May. It is being held in Los Angeles, California. Registration will begin on January 11, 2019 and more information can be found on the AFTD website:  www.theAFTD.org

I must share that I finally found the secret to making my holidays more survivable. My daughter was home for the entire Christmas week which helped immeasurably. We limited all visits to five people or less, including ourselves. I still, with her help, prepared our traditional Christmas morning brunch. All other meals were purchased and required very little effort to prepare. Not to give free advertising, but we went to Honey Baked Ham for ham and turkey, as well as all the sides needed to make wonderful dinners for Christmas Eve and Christmas Day. I also only baked only about twelve dozen cookies in the two weeks leading up to the holiday, giving up on the 100-200 dozen I usually would do. I will admit several people showed disappointment when they did not receive cookie trays, but having FTD, there have to be limits put on to what I try to do. To not be totally out of commission for a week or more after the holidays is the best gift of all. My solutions may not have worked for everyone else, but there are ways to cut back and enjoy the holidays.

Now, back to why you have not seen any blog entries from me for the past few weeks:

I have written many times about "FTD headaches" and how debilitating they can be. I thought there could be no headache more painful than those, until now. I have developed a new kind of headache in the back of my head. I was at an appointment with my retinal specialist and when he asked where the headaches were, I showed him an area on the back of my head. His response was "You just showed me the entire area of your Occipital Lobe."

I was desperate enough for relief that I visited my family doctor. Of course, an MRI was ordered which showed nothing, not even my FTD!  How frustrating is that? A SPECT scan in 2011 clearly showed FTD, and they still see nothing on an MRI? No wonder we are so often misdiagnosed. I cannot help but wonder if there is actually nothing that shows on the MRI or if the diagnostician does not know what to look for with FTD?

Trying to figure out what was going on, my doctor gave up and insisted that I consult with a neurologist. I do not like them, Sam I am. I would rather eat green eggs and ham! I have this fear that when I see the neurologist (one whom I have not seen before) next week, she will say "There is nothing wrong, it must just be depression."  This is what I heard from other neurologists in the same practice back when I first knew something is wrong.

My sister asked if I wanted her to accompany me to the appointment. At first, I said 'No." Then I quickly changed my mind. I knew I needed to take her with me because if the doctor even started to say there was nothing wrong, I would not be able to control my reactions and have no idea what I might say or do. So, please think positive thoughts for me this week... not just for an answer and some relief, but that I don't end up locked up for assaulting a doctor.

I will make no absolutely promises, but I will attempt to get back to writing on a more regular schedule. I hope at least some people missed me rather than saying "Geez, I'm glad she stopped writing."



Saturday, December 1, 2018

Good Intentions Get Sabotaged One Again

I had great plans for today's blog. I did a lot of research about medications that are not the best choices for someone with FTD. Unfortunately, writing about that subject is going to have to wait until another time. There is no way I can do it today because my brain needs to be working in order to write about a subject this complex.

Before I started writing, I decided to check my emails. Included, was an email from the Pennsylvania Department of Transportation. Our state is so far behind most of the others in activating "Real ID" on drivers licenses. We are one of the reasons the federal government had to delay the requirement of having Real ID for boarding airplanes until 2020. Yep, our DOT's slow and sluggish reaction is causing a possible risk to our air safety. Welcome to Pennsylvania.

The email informs me that, after checking my records (which took them nearly a year), they discovered that they do not have all the necessary information on file. I clicked on the link they provided for a list of the documents that I will have to take to the DMV to obtain a new driver's license or ID card. 

I now must find my original Birth Certificate. I actually know where this is, but it must have a raised seal. I am not sure mine does. Because my Birth Certificate is, of course, not in my married name, I must find my Marriage Certificate. What? I have no clue where that is or if we even have it. There are a few more requirements like proving I live at my address, etc. A valid US Passport would help, but if I am not mistaken, mine expired a month or two ago. And... if I read it correctly, if I were a legal immigrant, I would only need to present one document. That just doesn't seem right!

This kind of thing can be extremely overwhelming for someone with FTD. In fact, just meeting one of the requirements could be overwhelming to someone with FTD. I started panicking immediately upon reading the instruction brochure. Not only will I have to find all these documents for myself, but also for my husband as he is incapable of doing it. His passport expired nearly 10 years ago. 

I keep trying to calm myself down because I do have a few months to get all the documents together. Unfortunately, calming down is not something I do easily. It is not just true for me, but the same for many others with FTD. When I get into that panic mode, my heart is racing, I literally pull on my hair and I am incapable of thinking about anything at all. Heaven help anyone who happens to ask me a question or tries to reason with me. It's not going to happen.

This is one of the things I harp on often because many caregivers still fail to realize it. We do not purposely react to circumstances in this way. It just happens and there is little, if anything at all, that we can do to calm ourselves down. In addition, at least with me, if someone tries to calm me down or tell me to "take it easy," it escalates. Many times, if I am asked what is wrong, I won't even be able to explain it anyway. I usually need to resolve it on my own. Knowing my husband is safely in his recliner watching (or sleeping) football, I have stayed in my room all afternoon to avoid conflict.  That is often the best action for a caregiver to take... do nothing. Make sure we are safe and not banging our heads against the wall, then leave us alone to work it out and get ourselves calmed down. Yes, sometimes intervention is necessary, but not until you try the least confrontational methods first.

Running through my brain is: How do I get to the bank to go through the safe deposit box? Where did my husband keep the key? What do I do if we don't have the correct documents? How can I figure out how to get them? Why do I have to pay a one-time fee $30.00 for a "free" ID Card since I can't drive anyway? Leave it to the DMV to think this makes sense.

 All I can say is welcome to my brain. It is nearly impossible for anyone who does not have FTD or other dementia to understand what happens when something like this pops up. I am exhausted from panicking, yet I know I will not sleep tonight (or maybe until I can get to the bank) because I will lay in bed worrying. Someone with a "normal" brain would just set the email and brochure aside and worry about it later, much later. 

For me, it doesn't have to be something even as complicated as this issue (which is probably not complicated at all without FTD). This next scenario is another example:  

I need to meet my my elder care attorney within the next couple weeks. He is also my financial adviser so we need to do it before the end of the month. His assistant has contacted me to change the appointment three times now. The last time was because the conference room is busy that day. I was thinking that since there will be only three of us, can't we meet in his office or something? After emailing back and forth several times, we found a new date that worked. Then, she writes back and says "Oh, we can meet on the original date. There's only three of us so we can meet in Jeff's office." And I'm the one with dementia???  I was ready to just cancel and find someone else. It was fortunate we were doing in via email. If we had been on the phone, that would have happened without a doubt.

This has been a long attempt at explaining how my brain gets so scrambled when facing things that it destroys my ability to set it aside and focus on things that I can do. Things like cutting things up to cook dinner without cutting myself, remembering to keep the sink spray nozzle aimed at the sink and not the middle of the room, remembering where I am in the house so I don't run into walls and all the things anyone with a non-FTD brain takes for granted. I did all three of these not-so-smart things today, along with many more. All because I decided to check my email before getting in to writing my blog. 

Caregivers, please try to realize how an FTD brain works or, rather, doesn't work. Actually, could everyone plese realize this? Also, please don't then shake your head and say "there s/he goes again!" while we can still see and hear you.  To the Pennsylvania Department of Transportation, could you please wake up, use some common sense and realize what you are asking of us? Could you not have done your part on a timely basis? To my hairdresser, "No, I have no idea why all my hair is missing! I wouldn't pull it all out, that would be downright silly!"

Saturday, November 24, 2018

When to Say "When"

Everyone needs to know when to say "when."  It is something that I definitely need to learn more. I will admit that I was never one to quit until something was finished or when I had done all that I could. I always believed that I could just do a little more and do it a little better. 

For instance, I believe I said last year in a blog around this time of year that I was done hosting Thanksgiving dinners. I explained that it was just too complicated for me to coordinate all the dishes to make sure everything was ready on time. It was also way too exhausting for me to complete.

I actually did remember that this year, but Thanksgiving, to me, is a family day. The only family I have near me is my sister and her husband. Unfortunately, she fell several weeks back and shattered her shoulder which required a total replacement. There was no way she could help, much less do it all. So, of course, I called and invited them over. 

Everyone said the meal was wonderful, but I know better. I could tell that most of the dishes were cold because I didn't do a good job of coordinating them all. I could tell how dried out the turkey was because I forgot to keep an eye on it. I learned how tough the turkey was the next day when I wd as preparing leftovers and my husband requested that I "find some tender pieces for him because all that he ate yesterday was too tough to chew." Guess who was told to fix his own turkey?

I had actually considered picking up one of those pre-cooked feasts from one of the local restaurants offering them. You pick them up the day before and then just have heat everything up. I knew they wouldn't be as good as homemade, so I couldn't accept that it would do. Next year, I hope I remember that even though I tried to make the meal simpler than usual, it was still too much. I needed to say "when" and that I had to stop trying to host the meal. I must say, though, that even with the frustration of doing the meal this year, I would never give up sharing the day with my family.

I am going to use this newfound knowledge when it comes to decorating for Christmas. I have about ten totes full of Christmas decorations, not including the tree and trimmings. I went downstairs this morning and pulled out less than two totes worth of decorations and am going to do my darnedest to stick to it. I already told my daughter that I was not putting up the tree. I figure it was to do all the decorating and forego cookie baking or the other way around. At least after Christmas, the cookies don't have to be taken down, boxed up and hauled downstairs.

It isn't just the holidays that require knowing when to say enough is enough. There are times I need to do things like totally staying away from the support groups for a few days. It isn't very difficult to ignore the support groups for caregivers as well as those with FTD because those are the ones that drain me the most. It is not pleasant to read caregivers talking about and criticizing the person they care for. In fact, it is very sad and depressing at time. It is the groups that are just for those of us with FTD that are nearly impossible for me to ignore. 

I get so much support from everyone else with FTD and feel guilty, beyond belief, if I am not there to support them just as much. I do not need to avoid these groups as much as the caregiver groups, but I need to know when it is time to say "when."  I am trying to learn that some days, if I am feeling depressed and not feeling like communicating, that this is probably not the time to be commenting or advising anyone about anything. If I cannot stay away (which is about 98% of the time) I am learning to just read through in case someone does need some urgent support. I may click on "like" or something with just a couple words, but try to not share my negativity and general grumpiness. In this, I am actually making progress on saying "when" and need to keep it up.

The next, and maybe largest, thing I have to learn is that I need to not count on others to do things for me. The hardest portion of this is to not rely on friends. Just when I have reached the point of saying that I have given up on friends, a friend will actually get in touch with me. They will do things with me, usually nice things like take me out somewhere even to just get out of the house. Unfortunately, it seems like everyone's limit is three times. We will go out and, to me, it seems like we are having a great time. I certainly know that I am and I truly believe the other person is as well.

Just as I am feeling great and enjoying myself, the calls and visits come to an end. I call them or send a message, just to say hello. They will usually say something about getting together soon. Soon never seems to come. Of course, with the paranoia I have with my FTD, I am always sure I offended them or did something wrong. I wrack my brain (what is left of it) and cannot come up with anything. It always seems like they were enjoying our time together just as much as I was. 

These experiences are extremely heartbreaking. I wonder if it is not time to say "when" on counting on having friends. They certainly seem to have the ability to decide when to say "when" with their dealing with me. It's like I climb out of my non-socialization hole for a few weeks, then it is "wham" back in the hole and it is just a little deeper each time. 

I have to remember how exhausting it can be to deal with someone with FTD. It can be difficult for them to realize just why I have to be home before sundown. It is probably quite frustrating to listen to me tell them the same stories over and over again. It can probably be exhausting to try to figure out what I am trying so say when my words are not coming out correctly. It is possible that, even though I think we are having fun, to others it is not worth dealing with all the baggage I bring with me.

It is certainly when to say "when" with this blog entry. I am not as depressed as this has made me sound. I am, though, still exhausted from the holiday and the thought of preparing for the next one. At least I don't do a big Christmas dinner. We have brunch which is much easier and is a very informal buffet. Some of us are even still in our pj's. You may want to read that as "Cindy is usually still in her pj's" and add in that she is drinking another Mimosa!

Saturday, November 17, 2018

Narcissists Are Not Great Caregivers

I am sure all, or at least most, people are familiar with the mythological character of Narcissus who was so impossibly handsome that he fell in love with his own image in a pool of water. Ergo, the term "narcissists".  Several things have been brought to mind recently that centered around narcissistic people.

Narcissistic people tend to not be good caregivers. Obviously, it can cause a problem because they tend to think of themselves instead of the one for whom they are caring. This is not the best case scenario for care giving, but can actually still work if there is enough room for thinking of the one with dementia as well as themselves. 

Unfortunately, I have known several people who have become caregivers for their own selfish reasons.  In one case, he didn't want to look bad to all who knew him. His mother was very much admired and respected by the entire community. Adding to it is that they lived in a very small town where everyone knew, pretty much, what everyone else was doing. So he made a big production out of everything he did. He would tell everyone how he was taking supper to his mother every day. What he didn't say is that he was doing the absolute minimum he could. Usually, her supper consisted of two hotdogs from the local gas station that sold them two for a dollar. His mother was living alone and he was not helping with any upkeep of the house. He would pick up her medications from the drugstore on his way home from work, yes. What he didn't let people realize is that he would open the front door, throw them in and leave without so much as a "Hello, how you doing?" Eventually, he asked a social worker to inform the rest of the family that she must go to a nursing home. She did not survive long in the nursing home and it eventually came out that he never even visited her while she was there. I guess it was out of sight, out of mind. Plus, he no longer had to worry what other people were thinking of him since he had done "the right thing" to get her the best care.

I have witnessed several examples of a different type of scenario involving narcissists acting as caregivers. In this scenario, the caregiver gets involved, again, because it makes them look good to others. They jump in and totally assume all control over the life of the one with dementia. They seem to be willing to dedicate their lives to that care and go above and beyond what is normally expected. I find them easy to identify because they come off as totally phony. "Oh, just look at him, isn't he so sweet!"  "It just makes me sooo.. happy that I can help her." "Doesn't she look pretty today? I love it! It's just like dressing a doll!" 

In cases like this, anyone who has ever been a caregiver for someone with dementia can quickly see that they are doing what makes them feel good and look good rather than what is best for the one they are caring for. These people are usually pretty quick to burn out on care giving. Once they do, they often blame it on the one needing care. "Oh, he just doesn't appreciate what I do." or "She won't cooperate or do anything I say." Once again, it is about them. They appear to be good caregivers until the novelty wears off.


I actually had a friend who jumped into being my caregiver with both feet. At first it was wonderful. She would take me out so we could have lunch, take me to women's meetings at my church and when I needed it, she would take me to doctor's appointments. One of the first signs that things were not what they seemed was at the women's group meetings. There was always an opportunity for everyone to report on something good they did for someone during that month. I never raised my hand and reported on anything I did. I always believed that I did those things because I cared, I could and that this is what Christians do. Every month, though, she would report on what she did for me. There I sat next to her as she was telling people everything I "needed" her to do for me and soaking up the praise she received.

It got worse. She insisted on calling me every day. I hate talking on the phone, really, really hate it. She was constantly telling me what I "must" do and what I must say to others. She was pressuring me to leave my husband and move three states away to where my daughter lives. I kept telling her that, yes, I would love to do that but that I believed in that vow I took of "for better or for worse, in sickness and in health." I will say that often she truly was a big help and stepped up when there was an emergency. As time went on, though, it just seemed like she was not only trying to prove to others that she was such a "good" person, but was also trying to control me. 

For my own state of mind, even though she was a help, I had to break those ties.

I have witnessed other incidences where people jump into caregiving to make themselves feel good about themselves, as well as looking good to others. I have actually seen a case where the person jumped in and took over as a caregiver, forcing out the other person who had been doing a seemingly good job of it. I later found out that her husband had been pressuring her to get a job and she used this caregiving responsibility as an excuse as to why she could not possibly go back to work. Later, when she realized just how much work it was, she dumped the person back onto the previous caregiver.

Those of us with dementia and the majority of caregivers for someone with dementia are extremely aware of how difficult the job can be. For someone to jump in due to their own selfish reasons is not going to result in the best care, physically, emotionally and mentally. For someone with dementia to be yelled at about how they don't appreciate everything the caregiver is doing for them, it can be totally demoralizing. 

For someone to make a big production out of taking over and acting as the caregiver and making others aware of everything they are doing, just raises red flags to me. Especially when they move the person with dementia into their homes, take over their finances and control everything they do. When this is done out of true love for the person, that is absolutely wonderful and a laudable action. When it is done to feel better about themselves and appear better to others, it is an absolutely selfish thing to do.

Yes the person with dementia needs assistance. However, the person with dementia needs love, respect, proper medical care and as active a life as possible while being provided with that assistance. When I say they deserve respect, I mean they do not deserve to overhear jokes about them, dementia or the funny or irritating things they do from time to time. They don't deserve to be talked about right in front of them, thinking that either they won't hear or they won't understand. 

Fortunately, the majority of caregivers are not narcissists and truly do all they do out of love. They know it is a pretty much thankless job, yet they willingly do it anyway. They keep at it through exhaustion, frustration and heartache. These are people who should receive the glory for what they are doing, but that is the last thing they would expect. These are the caregivers who need to be thanked. 

This week brings the Thanksgiving holiday to those of us living in the U.S. Let us all take the time to be thankful for the caregivers!

Saturday, November 10, 2018

We ARE The Champions, My Friends

I did a lot of learning this past week. As you know, not only do I have bvFTD, but my husband has Alzheimer's Disease. The task of being his full-time caregiver can be extremely onerous, frustrating and exhausting a much of the time. I have done a lot of complaining about how family and friends, with the exception of my sister, run away in droves as though if they take an hour or two to help out, they might "catch" dementia. After my sister shattered her shoulder badly enough that she is out of commission for many coming weeks, I finally became determined to find some independence.

We, here in Pennsylvania, are fortunate that our state lottery system provides funds for Senior Services van service. You don't even have to be a "senior" as you are eligible at age 55 and at any age if you are disabled. The price per trip is usually between $1 and $1.50. I would pay more in gas if I was still able to drive. A couple years ago, before my sister was able to devote so much time to help me, I had utilized the van service quite a few times but it became more convenient to rely on her, so I stopped calling for the van.

I used the van for three trips in the past week. It means scheduling appointments carefully since the service starts early in the morning, but the last van is at 2:00 or 3:00 depending on which way you are travelling. It has worked amazingly well. I used it to go grocery shopping, to the chiropractor and to a medical appointment. It truly lifted my spirits to have a renewed sense of independence.

Also, this past week, I needed to make a 150-mile round trip for an appointment with my retinal specialist. There now is a retinal specialist in a nearby town, but I have been with Dr. Hoffman for over 25 years and we know and trust each other... me to trust his judgement and knowledge and him to trust my observation abilities and to know when to call for an emergency and when it is okay to wait until the next appointment. When a doctor is sticking a needle into your eyeball, it really helps to know him and have complete trust in him. So the long trip has never bothered me.

However, when you have no transportation, it can be difficult to arrange for an alternate. I finally became desperate enough to post a plea on my Facebook page for someone to drive me. I offered a generous payment and my step-niece stepped up and rearranged her day to take me. She and I have never spent much time together, so it was a great opportunity for us to get to know each other a bit better. So it ended up being a double benefit. We found we have even more in common than we thought we did. I knew her grandmother was dealing with dementia, but did not realize my niece had resigned her job to become a full-time caregiver for her grandma. She is really an amazing person.

I realized that I have to be more proactive in seeking out assistance, knowing that, like many others dealing with FTD have found, friends and family are not exactly beating down our doors to offer help.

A (nearly) life-long friend called to chat earlier this week and I boldly spoke up and asked him if he had any interest in seeing the movie "Bohemian Rhapsody" on his day off which happened to be the next day  I bought tickets for an afternoon showing, figuring it would not be crowded (good choice, there were only 10 people in the huge theater). I knew my husband would be okay for a few hours during daylight. (I did not realize how long the movie was so it was dark by time we got home and he was agitated, so I must be more careful about that since it gets dark so early now.) I packed up my earplugs and off we went. I did not even need them. Yes, it was loud but only during the music parts and that was just fine because Queen music has to be played loud, doesn't it? Queen and vintage Beastie Boys, for me, must be blasted!

Despite my apathy that comes and goes, I cried twice during the movie. Of course, one time was when Freddie Mercury died. The biggest cry, though, was when the song "We Are the Champions" was being played. The words really hit me:

"We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions,
We are the champions,
No time for losers,
'Cause we are the champions... of the world." and some excerpts from the stanzas:

"...But it's been no bed of roses,
No pleasure cruise.
I consider it a challenge before the whole human race,
And I ain't gonna lose." and...

"And I need just go on and on, and on, and on."

These words hit me so very hard because it was this week when I became determined to regain some independence and I realized that these words could be sung by every one of us who is dealing with FTD. It hit me that we ARE the champions. I don't think many people realize how strong we are forced to be and how most of us step up to the challenge to keep going on, keeping strong and fighting until the end.

To sum up my week, I found some independence and "I ain't gonna lose."  I will still have bad weeks, bad days and bad moments but I "will keep on fighting 'til the end." I know I am the edge of being corny, but, damn... it is irrefutable in my mind, as I wanted to get up and shout at the end of the movie, that we truly are the champions. We keep on fighting this disease and the naysayers who insist there isn't anything wrong with us. We have learned to stick together and fight together. We have learned to love each other, lean on each other and learn from each other to find the courage and determination we need to keep on fighting and struggling to find comfort and I will cling to that 'til the end.

We ARE the champions, my friends!

Saturday, November 3, 2018

It's Always Something

Having FTD just plain sucks. Sorry for the in-your-face verbage, but that is the only way I can explain it so that people just might understand. It seems like every day brings new frustrations along with it. So even though we celebrate each new day, some days it just becomes hard to do.

Having FTD means that you must rely on others for nearly everything. I need help grocery shopping, going to the bank or post office, doctor and dentist appointments. I have been extremely fortunate that when my husband was diagnosed with Alzheimer's and could no longer function in the capacity of caregiver, my sister stepped up big time. Even though she lives about fifteen miles away, she drives me where I need to go, sometimes three or more times a week. She has done this every time with a smile and a reassurance of how happy she is that she can help me.  Everyone should be as lucky as to have someone like her.

Unfortunately, two weeks ago, she fell and shattered her shoulder. The stress of not being able to be by her side while she was in the hospital for 10 days was astronomical. Fortunately, my awesome brother in law not only called two or three times a day with updates, he also brought her here to visit with me yesterday. 

The worst part, for her and for me, is that she cannot drive for 6-8 weeks. What do I do now? Well, I am getting reacquainted with our county's Senior Services Transport Van. They are very inexpensive, but the times are quite restrictive. For instance, I could get a van to take me to my scheduled dentist appointment next week at 2:30. Unfortunately, they would not be able to bring me home because the last van leaves that part of the county at 3:00. I rescheduled for next month, but since my appointment is at 1:20, they cannot guarantee I will be there in time unless I take the 12:00 van. It makes it difficult for someone with FTD to plan life around their van schedule. It is the same for every appointment I have. I am guessing I will get to know the van drivers pretty darned well.

I am thankful for the service though and don't mean to be whining about it. Ten days or so ago, I was able to find a friend to drive me to the grocery store. This week, no such luck, so I will be taking the senior van. Should be interesting because grocery shopping with someone along with me is a challenge in itself!

I am getting better at asking for help. I called several family members and friends trying to find someone to drive me 90 miles to my eye specialist this week for a necessary appointment. I finally found my step-niece to drive me, which is quite awesome of her to be willing to do. Out of everyone else I tried, either they couldn't do it, or they said they probably could, but when I contacted them again to pin it down, surprise... can't do it anymore.

Being the caregiver for my husband who has Alzheimer's Disease is an extreme challenge for my with the limitations FTD pours down on me. With the transportation issues, along with the constant concern for my sister and regret that I can not help her despite how much she helps me, and the 24/7 care of my husband, I am stretched beyond my limits.

These are the kind of things that so many caregivers fail to realize. Many are not able to recognize how difficult and frustrating it is for those of us with FTD to tackle every little thing all day and all night long. A huge number of them see us sitting around doing nothing and adding to their workload constantly. Yes, many of us do. However, it is not because we are lazy or do not care. We do have apathy, but the realization that we are seen as an imposition is heart breaking. We don't do the things we used to be able to do because we don't want to. We don't do them because, first of all, trying to get through a day with FTD is exhausting. The other factor is that we may not remember or understand how to do those things. It breaks my heart when I find yet another thing I can no longer do. I am sure it is the same for others with FTD as well.

Let's compare my sister's situation to mine. She has a huge sling/brace apparatus that she must wear 24/7 for the next six weeks. Anyone who looks at her immediately realizes that she has limitations as to what she can do. People automatically hold doors for her and offer to bring in meals, etc.  For someone with FTD, people cannot see what our limitations are and jump to the conclusion that we are lazy or just don't care enough to do things anymore. 

People can often recognize those with Alzheimer's Disease because their symptoms are at times visible to those observant enough. With FTD our symptoms are often hidden.  Add in the fact that we can often get "up" enough to seem normal to others. I firmly believe that is due to pure adrenaline. The adrenaline allows us to function at a higher level than normal. We pay for it though. After expending the energy to be as normal as we can, the adrenaline crashes and we suffer for at least a day, sometimes longer. We can be totally exhausted, irritable and difficult to get along with. It is pure and total fatigue, physical and mental.

This is difficult for others to understand. I understand that for strangers and those with limited experience with FTD. I do expect that our care partners and loved ones should understand and compensate accordingly. I do realize how exhausting caregiving can be. I am doing it now for my husband and have been caregiver for previous family members with dementia, now thought to be FTD.

I will actually run the risk of offending caregivers here, because today I am exhausted enough and have enough apathy that I just don't care. I become resentful when I hear or read caregivers complaining about how exhausted they are and how much they need to have a respite from their care giving role. Don't get me wrong now, I am not saying they do not need or deserve a break. What I am trying to say is that I resent that none of us with FTD can have a respite from the disease, not ever. Trust me, we are just as sick and tired and exhausted from dealing with the disease as any caregiver can possibly be. 

I feel resentful, and yes, probably jealous when I hear about their wonderful respite adventures. I am not proud of this at all, it is just the way it is.

While I am on this subject, I am going to really take the risk of offending another group of people. I am jealous and resentful every time I see or read a story about the brave FTDers and their amazing caregivers who travel, attend banquets, dine at fancy restaurants, visit exotic places as well as museums, the theater or more despite their illness. I hate that I feel that way, but I cannot deny that I do. Most of the FTD'ers that I know are not able to do things like that. Not only do we not have the energy or ability to do them, but FTD drains all of our financial resources to the point that we can't. The only travel I do, as well as a lot of others, is to the annual AFTD Education Conference. 

I would never suggest that these other FTD'ers should not do and enjoy everything they still can. It goes without saying, as far as I am concerned, that everyone of us should do everything within our resources to enjoy the life we have left. Those who are able to do it on a grander scale than I can, I actually applaud you and encourage you to keep on doing it all. 

The point that I am trying, maybe not so well, to make is that we need to hear about the others. The magazine articles, films and broadcasts need to include the ones who are struggling... the ones who can no longer afford to go to the doctor or to have the tests they need. Either they no longer have insurance or the co-pays are too much for the budget. This would include those who are just enough above the poverty level that they do not qualify for Medicaid or any other assistance programs.

The ones who can still do, and afford to do, these wonderful things certainly should be celebrated and honored. Though sometimes I think it is the ones who have the least yet manage to cope with FTD (or any other disease) are the ones to be honored and applauded. The ones who struggle to be able to put food on the table and still pay for their medications. are heroes to me.

Now, before you accuse me of feeling sorry for myself or throwing stones, I am in between my two examples. I am not in a financial position to travel, mostly because I would also have to hire someone to come in and stay with my husband, but we are financially stable. We are living comfortably on our Social Security and retirement savings. So it is not just sour grapes. I just still have enough empathy left in me that I worry about those who are not living comfortably.

This blog is an excellent example of how the frustrations and exhaustion of FTD can affect someone. Both are a drain on me and, obviously, sometimes bring me to the point of resentment and anger. Again, I am not casting stones at anyone, not implying that those of us with FTD are better than our care givers nor that anyone should feel guilty about what they can or cannot do. I am merely expressing the frustrations that I am feeling right now, and nearly all the time. We are all in the same boat, every one of us... every one with the disease, every caregiver and everyone who loves them.

Saturday, October 27, 2018

FTD Is A Thief

FTD is a horrible disease, there is no doubt about it. How do you decide what is the worst aspect of FTD. Today, the worst thing about FTD, to me anyway, is that it is a thief. It eventually steals everything, including our lives.

This is Halloween week. Here where I live, Trick or Treating for the children. Yes, I know it isn't Halloween yet. I was flabbergasted when we moved here and learned that it was always on the Thursday before Halloween, even if Halloween is on a Thursday. The children still enjoy it, I am sure, but what do they do on October 31st, I wonder?

Halloween, years ago, was a holiday that I looked forward to for months. I decorated my house, inside and out. I baked cookies and made caramel apples. I sewed my daughter's  costumes. We made her into a Sleeping Beauty, a Rainbow Brite Doll, a Karate Kid and so many more. Sometimes, I could con her dad into taking her from house to house so that I could stay home to greet all the other kids. I loved seeing and talking with every one of them. In some of the places we have lived, we would have over 100 visitors. I was in Halloween Heaven!

Then FTD entered my life and ruined it for me. It has worsened every year to the point that last night, I didn't even want to open the door. Someone would knock and I cringed. I did succeed in opening the door and handing out candy, but I could not care less about how they were dressed, how cute or how scary they were. I was unable to communicate with the kids at all, just handed them a handful of candy. I had not even put up decorations nor carved pumpkins to put on the porch. 

One young family came to the door... mom, dad and a little girl dressed up like a lion. I will say she looked adorable, especially her lion's mane. No scary lion was she! We had not met these parents before because they recently moved into a house at the other end of the street. They introduced themselves as Zach and whatever his wife's name was. I only remember the Zach part because I knew that was the name of my niece's cousin who I knew had moved into the neighborhood recently. So I asked him if that was his last name. They kept talking, talking and talking about themselves, their house, their family and even told us about the trip they made to Florida to visit my niece, his cousin. I was expected to remember all the people they talked about and follow their stories. Obviously, I could not even remember the wife's name!

I was stressed to my absolute limit. I wanted to close the door, lock it, turn off the lights and cry. It was too much, the little girl was squirming and trying to talk to her parents at the same time they were talking to me. The parents were telling me way more information than I could comprehend. We probably only chatted for ten or fifteen minutes, but it was too much after the first minute. Just answering the door and handing out candy to all the kids was too much for me. I wanted to slam the door in their faces. I wanted to scream at everyone to just go away. 

The pathetic part of this is that we only had three trick-or-treaters the entire time. Yes, only three yet it proved too much for me. I spent the entire time getting more and more stressed. I managed to have it totally quiet in the house but that only helped a little because I was on edge, fearing another knock. Kids are only allowed two hours of trick or treating here which doesn't seem that long, but after the first hour, I was done in. I put a basket of candy out on the porch and locked the door. My fists were clenched, my jaw was aching from clenching, to the point that I still had a headache the next day and I was rocking back and forth trying to comfort myself. No candy was taken from the bowl, so I don't think there were anymore visitors which helps me feel a little bit better that I had not shut anyone out.

Three kids and three sets of parents. Who would have thought that FTD would turn me into such a state that I could not enjoy just that little bit of the holiday I used to love. Once I had calmed down, I was angry! I hope and pray that I never reach the same point with Christmas. I am afraid that would totally destroy me. 

All I could think was how much I hated FTD and what it does to us, how it can steal all the pleasures from our lives. I am sure that everyone with FTD would be able to create a long list of what pleasures that the disease has robbed them of, how many events they have had to miss and things they can no longer do or enjoy. 

So many with FTD had so many things stolen, such as the hobbies they used to enjoy, going for walks and so many other things that we used to take for granted. I get angry when I try to watch a movie and have to walk away half way through because I can not focus on anything for more that 45 minutes or so. If it were not for DVR's, I would not be able to watch TV shows either.  If I watch a 60 minute television program and skip all the commercials, it ends up being right at my limit. Some days, though, I cannot even concentrate for that long. I certainly cannot watch more than one a day.

I know I have complained before about the resentment I have toward FTD because I cannot read like I used to. I am actually fortunate that I can read at all, but I can only read novels with no complex plots, too many characters or too much of anything. The good part is that I save a lot of money on e-books because after three months or so, I can reread them without remembering the plots. The books I read are probably at a junior high level. That really hurts.

I hate that FTD has stolen my artistic abilities. I have probably complained about this before as well. I used to be an artist, an award winning artist in fact. I used to make money by decorating cakes, even did a few wedding cakes. I did one about six months ago and it wasn't even at the level I could do before I learned how to decorate cakes. 

I really hate that FTD has stolen my ability to interact with others. I cannot carry on conversations with people I don't know or more than one or two people at a time. I get too stressed and actually have had panic attacks. If you have seen me at the AFTD conference, you have seen me how I used to be. You couldn't shut me up whether you were a close friend or a stranger. At the conference, I know I will not be judged if I say the wrong thing or sound like an idiot or take to long to get my words out. It is such a non-threatening and welcoming environment that I talk to everyone practically non-stop. My daughter is amazed at the difference in me between the conferences and my every day life.

I hate that FTD has stolen my ability to look normal, to not stumble and stagger when walking, making people think I have been drinking. One time, I was entering a bar/restaurant when I fell right there in the doorway. Several people came running to help, asking if I was okay, could they do anything. Embarrassed, I finally got myself up and tried again to walk into the building. I fell again and ended up sprawled all over the floor. That time, no one came to help, they looked at me like I was a drunk. When I finally got up, I realized there was just a tiny step, probably less than one inch. With my loss of peripheral vision, I could not see that little rise and that is that was what was tripping me.

I cannot go without mentioning the absolute anger and frustration most FTDers have when we are told, or realize on our own, that we can no longer drive. We lose our freedom and  independence. We lose the privilege of just picking up and going out to eat, shopping, visiting, etc. 

I hate FTD because it has stolen some of the appreciation others had for me. It is so very frustrating that this is almost an invisible disease. People look at us and think we are still the same person we were before. Then don't see any physical symptoms. Perhaps if FTD game us a big flashing sign on the top of our heads proclaiming the disease, they might recognize that we are fighting a disease. Probably not though, they would just look and think we were trying to get attention.

Bottom line, I hate FTD, with a passion. Hate it, hate it, hate it. It has stolen so many things in life that I used to take for granted and never dreamed that I would end up having those abilities stolen from me. 

Finally, back to the holiday issue. To caregivers and those who love someone with FTD, please talk to them and ask what you can do to help the holidays be more tolerable for them. If my husband were capable, I would have asked him to answer the door. There are probably things you can do to help your loved one cope with events and holidays. It is also a good idea to watch them for signs of stress and discomfort before it becomes too much to handle. Like we often say, please try to step into their world and look at things the way they do. See how FTD limits them and their enjoyment and what you can do to help. Everyone deserves some enjoyment in their life, even those of us with FTD.

Saturday, October 20, 2018

Eye Issues with FTD

Lately, I have been repeatedly asked about what effect FTD can have on the eyes. The answer to this question varies greatly depending on whom you ask. As you read this, please bear in mind that I have no medical training. I have, however, read an awful lot about how the eyes work and about different diseases of the eye. I have had diseases of the eyes for about 30 years now and that is why my avid interest in the subject. Much of my knowledge has also come from the many eye specialists that I have seen in many clinics across the country.

For me, one of the most interesting thing related to FTD and the eyes is research that is being conducted regarding early detection of FTD through images of the retina. In the research, retinal degeneration possibly can detect FTD before the patient experiences and clinical symptoms.

The retina is often called "the window to the brain" because it is made up of neurons that directly connect to the brain. Researchers have noted a significant decrease in cell activity in the retina of dementia patients. Much of the research, but not all, has been limited to the genetic form of FTD so far.

So, if early detection is possible through the retina, it seems possible that the retina could be the cause of eye problems in FTD. Each eye has its own retina and they each send their images to the Occipital lobe, located in the back of the brain. That is the end of the retina's job. Your eyes each see their own image and each sees approximately 3/4 of the image the eyes are seeing. It is up to the brain to overlay the two images into one image. It is up to the other areas of the brain to interpret those images. Much of this interpretation is done by the temporal lobes.

If the two images transmitted from the retinas are not interpreted by the brain properly, the images may causes many symptoms, including double vision. Double vision is a very troubling symptom to many with FTD.

Quite often in FTD, those who complain about blurry vision are actually experiencing a small amount of double vision. It is suggested to test this yourself by covering one eye at a time and determining if the vision is blurry in just one eye or only when you look through both. If both eyes, by themselves, are not blurry, the cause of the blurry vision is quite possibly a case of double vision.

In some cases, the double vision can be extreme. Instead of appearing as blurry vision, the patient may see two distinct images. This can be quite troublesome in many ways. For instance, when travelling in a car, I see two images of cars coming toward us. One of them appears to be in our lane which causes me to become frightened and I often distract the driver by my reactions. 

Along with the double vision, there can be other differences in the image from each eye. For some, if you cover one eye at a time, you can often tell that one image is larger than the other. It can also reveal a different in color intensity and/or a difference in depth. This depth perception can be troublesome in itself.

Now, I would be negligent if I did not mention that there is no way for corrective lenses to correct these vision issues. For most people, double vision can be corrected with prism lenses to bring the two images together. In FTD, the two images fluctuate constantly. The prism lenses may help intermittently, but they can make it worse the rest of the time. I mention this because many optometrists will suggest this and, with the costs of glasses, it can become a huge waste of an investment. 

The easiest way to explain why our double vision issues are different because of our FTD is to explain that it is the brain seeing double, not the eyes themselves. In the case of non-FTD patients, the cause for double vision is quite often muscular issues with the eyes. Not so for us. 

Poor vision can also affect those with dementia with the loss or restriction of peripheral vision. Let me tell you, I am a terror in the grocery store because I cannot see other people or their carts until I am right up to them, usually bumping into them.  I read that the loss of peripheral vision can also add to difficulties dementia patients experience eating. In the late stages, when they are needing to be fed, they don't see the food or utensil until it is right at their mouth and it scares them. This is also part of the issue of FTD patients being afraid of the shower. They cannot see the water until it hits them. Many experts will tell you that when approaching a dementia patient, approach from the front, not the back or sides because they can't see you and will be startled.

There are other things too. For instance, double vision can rapidly tire the eyes and lead to horrific headaches. Add that to the already existing problem of FTD headaches and you have a real mess. Eye strain is an issue as well. I can only watch television for short intervals, about 45 minutes. The only way to continue after that is to cover my left eye (which in addition to double vision has a huge blind spot) because the right is strongest and finish watching with one eye. I can't do that for very long either.

Fortunately, at least for me, the double vision gets worse with distance so I am still able to read and do things on the computer

The other thing I advise for those with FTD is, when you are wanting to have your eyes checked, please see an Ophthalmologist (preferably one who is quite knowledgeable about retina issues) and not an Optometrist. I have always found that Optometrists are the best when you are needed corrective lenses, but for diseases of the eye, always an Ophthalmologist.  

I am probably forgetting some of the issues with FTD and vision, but this is certainly enough information for one blog. Again, please remember that I have no medical training and that if you have questions about your eyes, please see a professional!

Saturday, October 13, 2018

Random Acts of Kindness

I absolutely love acts of kindness.  As long as I am on the giving end anyway. I just love bringing a smile to someone's face without having them fuss about "oh, you shouldn't have." I do it because I want to, not because I have to. It just warms my heart to be able to do something.

One time at Bible Study, as Christmas was nearing, an older woman mentioned that no way is she going to put up a tree this year. Several of us offered to go to her house and do it for her. She refused, saying it is too much work for anyone to do. I went home to my craft room and grabbed an artificial 20" tall tree and hot glued some beautiful ribbons and decorations onto it.  Later, when I knew she would not be home, I left it between her storm door and front door with a typed note "Everyone needs a little Christmas."  The next week, she suspected it was someone from out group and raved about it yet she fussed that someone went to too much trouble for "just" her.

How difficult does something have to be until we think it's not worth bringing a smile to someone's face or a warm feeling in their heart? Does it have to be for a friend or an acquaintance so that you can actually see the smile or can it be for a stranger? I don't need to see the smile, I get all the reward I need when I know I will make their day just a tiny bit better. It just makes my heart smile!

You are probably asking what this has to do with life with FTD. I will once again need to put my caregiver hat on to explain it. My husband, who is in the late stages of Alzheimer's, is home with me again after being in the hospital and rehab center for four weeks. Our Home Nursing Agency has sent a nurse to see him a few times already as well as a physical therapist and an occupational therapist. (On a side note, they scheduled a home health aide to come help him shower. He said he would let the aide help him, as long as he could leave all his clothes on.  Obviously, I canceled the aide. I even managed to not laugh in his presence.) Together, we managed to get him showered. I can only think that he believed the aide would get naked and go in the shower with him!

The nurses all suggested that I get him to do some easy things around the house and try to get him outdoors for at least a few minutes a day. It sounded like a good idea, so I tried.  I asked him to sweep the leaves off the part of the deck by the sliding door. He agreed, but insisted I come out with him. The next day, I suggested he go out for the mail and newspaper. You guessed it, I had to walk with him because he was afraid to cross the street to the mailbox. Now, that was funny because I am the one with the history of walking out in front of vehicles. I know I want to get to the mailbox, so I just go, forgetting that there are sometimes vehicles, even trucks full of gravel, that speed down our little road. One of the joys of FTD, no impulse control.

The next day, I asked him to unload the dishwasher. He was very willing and quickly put away the coffee mugs and plates. Then he closed the door and said "That's enough, you can do the rest."

I am sure you can imagine that being a caregiver for someone with Alzheimer's is not easy for someone with FTD. In fact, it gets downright difficult. Besides caring for him, I have had to absorb all the household tasks he used to do, even the financial things.  Pretty difficult when I struggle to write out a check, often beginning with the date. What month? What year? The check printers are going to love me. I go through a book of checks in almost no time because I have to void so many.

When I was diagnosed with FTD, we had no suspicions that he was developing dementia himself. He doted on me constantly, until I had to ask him to back off, that I was still capable of doing things. He took over filling my pill boxes, doing the grocery shopping once in a while, just everything he could. I did not realize how much he was doing until I had to start doing it all again. 

I am sure you are wondering where I am going with random acts of kindness and needing to become a caregiver. I will get there...

When he unloaded the few things from the dishwasher and then saved the rest for me, my immediate reaction was anger. Understandable, I think, because of the strain of being someone with dementia needing to care for someone with worse dementia. It takes every bit of energy I have. So I am very thankful that I bit my tongue and did not say a word. Thank you, impulse control, for showing up for once! 

I sat and fumed for a few minutes, then something occurred to me. If this was a stranger or a friend, I would have offered to take over and do it for them, then asked what else I could do for them. I also remembered how much I appreciate it when my sister gives me an arm to lean on when I am walking in a parking lot or crowd. Or, when I keep thanking her for coming over and driving me wherever I need to go. She always says, "That's what sisters do!"

I went even further and remembered a time when I was fussing about having to make a speech. I just didn't want to do it and I was coming up with all kinds of excuses. My husband looked at me and said, "Cindy, if you take all the energy you are using to complain, you could have the speech written and practiced enough that it will be easy for you."

Here I was, using more energy being angry that he could not even empty the dishwasher or do the other simple tasks I was asking him to do. I was angry that every time he went to ride the stair lift that I had someone install before he got home from rehab, he insisted on me following it downstairs and back up to make sure "he did it right." I kept wondering why he was making such a fuss about sitting down and pushing a button to go up or down. 

I was reacting to my husband of 45 years so harshly, yet if he was a stranger, I would be just the opposite. It really turned me around. I emptied the rest of the dishwasher and thanked him for doing the part he did. I sat down to fill his pill boxes for the week and was thankful that I am still capable of doing it instead of growling that I had to do it.

Being a caregiver is an extremely difficult job for anyone. I don't want to make it sound like it is only difficult for me because I have FTD. Of course it does complicate the situation. I do believe that many caregivers fall into the same trap I did. They complain about all the things they have to do. They completely take over because it is easier and much quicker to do it themselves than to have their loved one attempt to do it first. I now find that I am able to ask him to do something because I realize that redoing it after he does it won't take any longer than doing it first and it just might make him feel like he is contributing something. 

My attitude has changed. I am still exhausted, but I am not tied up in knots of resentment at the same time. This morning, it was was only 60 degrees in our house. The outside temp had really dropped overnight. When I realized in the middle of the night how cold it was in the house, I pulled up the comforter. When he felt the cold, it did not even occur to him to pull up his comforter. I broke down and turned on the furnace, then returned to his room, crawled into his bed, snuggled up with him and said I would give him some of my warmth. He quickly stopped shivering and actually drifted off to sleep again. 

I learned from this. I realized that he does need my warmth to keep him comfortable. It is not always nearly as easy as turning on the heat and snuggling. This is only a vivid example to me that he needs my support to make him more comfortable dealing with his new difficulties in doing anything and everything. 

I also realized that it had been a long time since I had the opportunity to snuggle up to him. I warmed him up, but it warmed my heart just as well. I need to remember that feeling and keep in mind that everything I am doing for him is a (not so) random act of kindness.

Sunday, October 7, 2018

We All Fight Together

A huge "thank you" to all who have come back after my month-long absence from blogging.  As I said in my last Blog, caring my husband who has Alzheimer's Disease had taken a turn for the worse. Yes, it is a full-time challenge for me as it is for all caregivers. I simply had no energy left to think, much less blog.

What I did manage to do was kick off a campaign to sell "I Am Fighting FTD" ballcaps and then shirts. I was doing this as a fundraiser for the AFTD during their "Food for Thought" fundraising campaign. 

I am not trying to sell them here. I merely mention it because on the shirts that I designed, part of the message on the back is  "We All Fight Together." At the time I designed the shirts, that phrase jumped out at me because together, we are a mighty force to fight against FTD. We all stand together to push for research, assistance for those with FTD and/or caring for someone with FTD and to educate the world that FTD even exists. 

This mighty force I refer to has to involve all of us and we must all be committed to the same cause. Not all of us can climb up on a soapbox and speak out to anyone who will listen. Interestingly enough, I could not have done that before FTD, but now I can and I do. However, every one of us is part of the force in someway. Even when it is correcting people every time they assume that what we have is Alzheimer's Disease or make stupid remarks like "You look fine to me."

When I was first diagnosed with FTD, I was lucky to immediately find the AFTD and have relied on them ever since. I try to repay their efforts and assistance by doing what I can to raise money and spread the word about FTD. More so the second. I can comfortably say that I have educated a lot of people about FTD, whether they wanted to be or not!  Because FTD quickly robs most of us of financial resources, it is difficult to monetarily support any organizations. That is why I use my remaining talents to support the AFTD since my finances are limited. 

The AFTD is not the only organization out there supporting the fight against FTD, there are others. I apologize that I cannot remember all of them, but they are are fighting FTD in their own way. Some that come to mind is PSP.org, Dementia Society of America, Dementia Alliance International, FTDarn and even the Alzheimer's Association. To me, it would be ideal if all the organizations worked together, not to cross purposes. Hopefully, they already do and I just am not privy to that knowledge. I hope that they share information, resources and research findings when possible. 

I believe I mentioned, a few months back, that I was serving on Pennsylvania's Task Force for Alzheimer's Disease and Related Dementias. (Yes, that's us, lumped into "related dementias".) I am doing my best to constantly remind the members of the task force that the related disorders are just as important. Trying to be heard is frustrating, believe me. I am also serving on a sub-committee and one of my assignments was to contact many of the different dementia organization to determine what they do and what types of support they offer. I was amazed at how many of the organizations held that information to the vest and were reluctant to share it with me. Of course, it is also possible that my FTD didn't allow me to ask the right questions.

Perhaps I am an idealist in my thinking that all the organizations should assist and rely on each other. My thought is that, ideally, we would have a national registry of all non-profit agencies. Then, when someone receives a diagnosis of any disease, they could make one contact and learn what resources are out there and how to get in touch with them. For instance, I did not know that the Alzheimers Association supports those with FTD and other dementias. Unfortunately, seeing how this national registry would most likely be done by a government agency, I probably am indeed an idealist.

There is more to the "We All Fight Together" expression I put on the shirts. It is for everyone of us. If we are members of or supporters of one organization, that does not mean that all of our support has to be limited to one organization. Each organization has its own principles and purpose. Yes, it is up to us to research and learn about each organization ourselves before we chose whom to be assiciated with, but it doesn't have to be just one.

I would be negligent to not mention that it might be better to focus on a small number. If we spread ourselves and our support too thin, we become less effective due to our limited resources of time and energy. At least that is very true for me.

Fighting together applies to support groups as well, at least in my mind. Some groups are limited to those with the diagnosis, some to family members, some to caregivers and probably many more. It my experience, it is the open groups that sometimes get people taking sides. It's worse for patients... no worse for caregivers.... no worse for... 

We all have to fight this disease together, not push against each other. We can all learn if we listen and don't immediately dismiss opposing opinions. If you read my blog regularly, you probably know that I suffer from the paranoia that FTD often brings us, so take that into consideration when reading my next statement. Quite often, when I am on the joint support groups, I feel my opinion is totally dismissed because I am not a caregiver so I cannot understand. Of course I am a caregiver, but I would like to think I would understand the caregiver's problems even if I were not. 

There is so much benefit by listening to all sides of a situation. These open support groups are not the perfect place to be writing about how horrible those with FTD can be. We already know we can be. We also do not need to hear how much we are resented and, in some cases, hated. It's not the place for those of us with the disease to be criticizing all caregivers. Those comments need to be in a more private forum so that we can, indeed, fight together, not against each other.

After reading back over what I have written so far, I do realize it is coming across as a lecture. That is certainly not my objective. During the past month, I have observed many upsetting situation, not just online, but in the hospital, in the nursing home and even with the Home Nursing Agency who is providing some help for my husband adapt to home life once again. I hope my husband was not aware of these careless and thoughtless comments and actions, but my sister and I certainly did. They brought all these issues to mind.

When I added the "We All Fight Together" to the shirts, I was not aware of why it jumped out at me. As life progressed through the past month, it became obvious that there was indeed a reason.

Thank you for bearing with me... and I promise not to lecture next week.  It's good to be back...