The Ultimate Conundrum

co·nun·drum

/kəˈnəndrəm/

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noun

1. a confusing and difficult problem or question.

   "one of the most difficult conundrums for the experts"

I have decided that FTD is a mess of conundrums.  The other day, on a Facebook chat with others with FTD, someone mentioned how very lonely they were. Most, if not all, of us chimed in that we were as well. Then we realized that we were extremely lonely yet did not really want anyone around most of the time.

I have written many times about how family and friends seem to run away as soon as they hear about our diagnosis of FTD, or any other dementia for that matter. It is so sad, on both sides. Those of us with FTD do still have things to offer to the world. Yes, our frontal and temporal lobes are damaged, but other parts of our brains still work. Our memories are often not stolen until the end of the disease, at least the long term memories. You want to know about a family gathering at my grandmother's house when I was 15 or even 5? Just ask me, I can remember. I can remember where each of us was sitting, what Grandma was wearing and what dinner she prepared. 

There is debate as to how accurate these memories are because those without FTD tend to think of our entire brain as being worthless. I will admit that some days it feels that way. However, I can remember every nook and cranny in Grandma's house and in my childhood home. I have a quilt that my great-grandmother made for me. I now have it out of storage and I can look at each fabric and tell you what article of clothing she made out of each one and for whom it was made. Honestly, there are a few I don't recognize but those were probably made for someone I didn't know or had never seen them in it.

Instead of family members being interested in my stories, they are full of doubt that they are genuine memories. "It is just one of her freaky ideas!" or "What an imagination!" I could go on about everyone who has dropped out of my life. I can't really fault them because it can be difficult to spend a lot of time with someone who has dementia.

Another aspect of our loneliness is that we lose our independence after diagnosis. We can no longer drive so any activity has to be planned out ahead of time. Many, including me, no longer have the ability to plan anything even slightly complicated. 

Okay, okay, you've got it. You understand we can be very lonely. Where is the conundrum?

The conundrum is that even though we are so lonely, we are often not able to enjoy ourselves outside our usual environment. This includes being in unfamiliar places, in noisy places, places with too many people or people too close to us, too many lights, too many conflicting sounds like voices, music and other conversations. Visiting in other peoples homes is no longer enjoyable to me. Especially true if there are pets are very young children, phones ringing, television and video games blaring. 

If I could and it wouldn't come across as demanding and rude, I would give a list of instructions to anyone inviting me to their home.  No pets around me, no babies handed to me, don't ask me to play with children or watch them play, turn of the television and especially video games with all the noises and flashing screens, offer me a seat out of the traffic pattern where no one can come up behind me and on and on. I guess that would limit my outside visits to zero. However, selecting a small, quiet and uncrowded restaurant should be pretty easy. 

Then again, it may be one of those days when I just cannot deal with people at all. Those are very frequent. Maybe 25 out of 30? The actual number is probably higher, more like 29 out of 30. So I will sit in my house with the doors and windows closed so that it does not appear to be welcoming visitors. I often will ignore phone calls because I cannot deal with talking. I will cancel appointments, even doctor visits because I just cannot face people at all on some days. 

Now, you should really understand why I say it is a conundrum.  We can sit and feel extremely lonely yet not want to be around anyone at all. It is another conundrum that friends and family know that there is something "wrong" with us, yet when we do something inappropriate, they seem to forget that we had no control over what we did. How many times do we have to explain about loss of filters, inability to understand sarcasm or subtleties of conversation? How many times do we have to beg forgiveness or utter those words I hate so much: "It's not me, it's the disease."

There is nothing difficult to understand why I (and probably everyone with FTD) want to accepted for who we still are and what we still have to contribute to the world rather than ignored because of our disease.

We read so often about how lonely caregivers can be, how isolated, how tired, how difficult it is for them to get away for even an afternoon. I do not dispute that at all, not one tiny bit. I do, thought, resent it when it is all about the caregiver, with no thought to how lonely those with FTD are as well.

Hello, We're Still Here...

I do apologize, again, for not managing to write a blog entry each week lately. There just is not enough time for writing and sleep both. Sleep must win out a lot more lately.

This part is to mostly all who are fortunate enough to not have FTD, nor are a caregiver. Please, please, please do invite those with FTD to family functions or a gathering of mutual friends. It is so hurtful to us when we hear from someone else or see photos of the event on Facebook and realize that once more, you were excluded. 

The worst experience I had in this regard was when a family member told me that they had all gotten together at Aunt so and so's house. His words were, "It was just perfect, the entire family was there." Uh, wait a minute, last I checked I wasn't dead yet, so that means I am still a member of the family doesn't it? That example happened a couple years into my diagnosis and it still hurts more than I would have ever imagined.

Yes, we have the disease of FTD. We even act inappropriately at times. On the other hand, we quite often rally our energy when attending a special function and appear perfectly "normal." We, or at least our caregiver, can decide if this is a function that it is safe for us to attend. Caregivers can even attend alone if they know it will be too much for their FTD'er. Every few months there is an event with family or friends that I learn about it afterward. If FTD allowed me to cry, I would be crying every time.

Even if you are positive that they won't be able to attend, extend the invitation anyway. Knowing you are missing a special event ahead of time, at least for me, is much easier than learning afterward that you chose not to invite me. Or call the caregiver and ask if the FTD'er or only the caregiver are capable of attending and decide if there are accommodations that can be made to enable attending.  

For instance, I agreed to attend a family event and the host reserved a seat for me near an exit where nobody would be walking up to me from behind. I made it through the entire event. Similarly, I attended a family wedding but chose not to stay for the reception because I knew the crowd would be too much for me to handle. Another family event, I chose to not to attend because I knew I would not be comfortable and could possibly have a meltdown. Even though I knew I was missing the occasion, just being invited meant the world to me.

Okay, that is off my chest. I know it will happen many more times before FTD takes me and I know it will continue to hurt.

The past two weeks have been interesting, to say the least. Our family doctor referred my husband (in case you just started reading my blog, he has advanced Alzheimer's disease) to hospice. A hospice nurse came out and talked for a couple hours with me and our care helper. She promised us the moon. They would assume all the difficult tasks, provide whatever help, supplies or equipment needed, all at no cost. I was so relieved and thankful, until she examined my husband. We had to wake him because he was still in bed after having slept for 20 hours. Of course, he was at his best. I had planned it that way.

It is common for this to happen, the person with dementia rallies when someone comes to see them. His sense of humor actually showed itself. He remembered her name five minutes after she introduced herself. (She had on a name tag with her first name very large.) He can still read or see letters well enough to put a word together... once in a while and it had to be that day.

You probably have guessed the results... he was turned down for hospice. I was kind of stupid to arrange for her to come when he would be at his best so he would be cooperative. I never thought I should not do that. 

Interestingly enough, I always advise my fellow FTD'ers who need to attend a hearing to become eligible for Social Security Disability to go when you are at your worst. Wear no makeup, no fancy hairdos, and not the best or fancy clothes. Make sure you are tired and not at your best. I should have thought of that and not scheduled the visit when he was at his best.

I am lucky that we have one of the very best family doctors. When they informed her that he was not eligible, she referred us to Home Nursing. They were approved for five weeks for physical therapy and a personal care aide to come out twice a week. I really appreciate this help, but those five weeks are going to fly by and I will be on my own again.

We should not have to play those games. People in the position of deciding what we need should be educated in all forms of dementia. They should be able discern whether this is likely to be their true condition or not. It is infuriating to me. Those of us with dementia are treated like third rate citizens, if even that well.

I am grateful for the five weeks of Home Nursing. I was also blessed with a phone call from a local non-profit organization that collects and provides medical equipment and supplies. They are bringing us a fully electric hospital bed. No questions about income or eligibility, they don't do that. If you need it and they have it, they give it to you. I sure know now where all his medical equipment will be donated when it is no longer needed.

I am also grateful to have a few hours to myself today. He decided to watch his alma mater play a football game. That means he has it on the television and is sleeping in his recliner where he would see it if he was awake. I take it when I can get it.

I guess the bottom line of both of these issues I have written about, is to be flexible and knowledgeable about dementia. Whether you are deciding whether to invite someone, considering whether to visit or call someone with FTD (please do by the way) or evaluating their condition. Look at it from all angles and make informed decisions. We are not lepers nor totally useless. 

Look at me. I have FTD yet I am taking good care of my husband with Alzheimer's. Others paint pictures, carve wood, photograph beautiful things, write awesome poetry. That does not mean we don't have dementia nor need to be ignored. It also is not the way to determine the health of us and decide we are just "fine" after a five minute visit because we can still communicate somehow with you and still have a sense of humor. You have to keep a sense of humor if you are living with FTD.

One Big Question I Cannot Answer

I see it has been two weeks since I blogged. This shocked me as I seem to have missed a week somewhere. I chalk it up to just how busy I have been. I actually went to the doctor for a six-month checkup last week and we did not talk about my health for more than one minute. The rest of the 30 minutes I was there was spent talking about my husband and his Alzheimer's Disease. I even forgot to mention the bladder infection that had come back.

Doesn't this just sum up the life of a caregiver? Not much time for ourselves. Don't get me wrong, I do not resent this. I am just tired of being tired. Yes, I do know about respite care and I do have help five days a week and she stays over three of the nights. I am still exhausted. Then again, I was exhausted from my FTD long before we knew about my husband's Alzheimer's.

Before I get bogged down in my life, I want to try to answer a question I have been getting a lot lately. "Does FTD affect your immune system?" I found some information about this on the web, but nothing really definitive. I read several articles and results of medical studies. Unfortunately, most of it beyond my comprehension. One fact that I did find repeatedly is that the tau protein build-up creates tangles in the neural cells which triggers the immune system to kill those cells. 

I must be clear here, I have no scientific or medical education. I have been involved in the medical field throughout most of my life, but on the business side of things, not medical. With that in mind, while the articles and studies were way over my head, everything I read mentions the immune system either in the origin of the disease or the destruction of the affected brain cells. 

When I hear questions about the immune system being affected by FTD or if a weakened immune system contributes to it, I suspect the answer is yes to both. I know myself, that my immune system has been weaker since the onset of FTD. I have experienced Hodgkins lymphoma, increased sensitivity to irritants and I never get a simple cold. The colds always turn into more serious issues such as bronchitis and pneumonia. If I am exposed to contagions, I am affected and become ill. 

I apologize that I could not find the answer to the questions. I am sure the information is out there and that there are people who understand it enough to answer it. If any happen to read this, please let me know. 

Now, back to the happenings in my life. My husband's Alzheimer's disease is still worsening quite rapidly. Even the doctor is amazed by how fast. His legs are nothing but skin and bones, literally, and he has much difficulty walking. He even struggles to move himself on the bed. 

I finally took our doctor's suggestion and allowed her to contact Hospice. The nurse came to evaluate him and was certain he would qualify. She promised so many different forms of help, all at no cost. Unfortunately, when she examined him, he perked up and made a joke and remembered her name five minutes after she had told him. Duh, she had a large name tag on and the joke was not funny. Anyway, they declined him for services because they were not positive he would die within six months. Of course, he has not shown any signs of that kind of recollection since she left.

So then I thought of Palliative Care. It seems that this less populated area of the state is not educated in it. It seems it is lumped in with Hospice Care. If you know me, you know I don't give up. The doctor has now referred me to Home Nursing to see if they can offer any help at all. Wish me luck on that because before they will come out, he must see his doctor. So on Thursday, we will attempt that. 

One thing that may be of interest to you... A major health organization from a large city, about 100 miles away, has been buying up hospitals and healthcare businesses. They own our local hospital, they bought our doctor's practice, they own Home Nursing and Hospice. They even own a medical supply company that includes "durable medical equipment."

When we see the doctor, I will ask about private hospice organizations and request she order a hospital bed and some additional equipment. I will be getting these items regardless, but if the insurance will pay, I would only need to pay 20%. Since I already pay $600 of in-home help, I would really appreciate it if they will, but won't hold my breath. All of this has been my Plan B. I hope I don't have to come up with Plan C because I am running out of ideas.

I now have a better understanding why families place their loved ones in facilities. What if I didn't have time to do six loads of laundry a day? What if I had children or other family members to care for?  Something must be done. That something must include assistance for those above the poverty level as well as those below. I write my legislators, but never see any improvement.

I will not place my husband in an institution. He was in a nursing home for a couple months last year and it was a horrid experience for him and for me. Placing him outside the home is the very, very last resort in my mind. I pray I never have to choose that option, but I have to understand that it may eventually come to that. Caring for his dementia while coping with my FTD is unbelievably difficult at times. I pray I never have to make that choice and I pray for all of those who have had to make it.

Dementia is not easy. I used to thing FTD was worse than Alzheimer's. I don't believe that any longer. They each (and all other forms of dementias as well) have their own difficulties and perils. None of them are easy.

Good Things Despite FTD

I think we all realize that FTD is an extremely fickle disease. It attacks our brain when it wants to and in what parts of the brain it wants to and in what order. It plays tricks on our psyche, sanity and happiness/unhappiness.

I have been struggling ever since returning home from conference in May. I usually am so exhausted by the time I get home each year from all the activity, learning, camaraderie and fun so this was not unusual. This year, though, there was an added let down. My daughter and I stayed an extra day in L.A. to visit with my favorite cousin (Sorry to all my other cousins, but he is, no doubt about it!) and his family. It was a wonderful day and well beyond enjoyable. When we got back to the hotel, though, I felt a huge let down, wondering if this would be the last time I would ever see them.

Just what someone with FTD needs... one more reason to get the blues! 

Yesterday morning, I got the most surprising phone call. He was two hours away and was headed here to visit with me and my sister and our husbands. We laughed, we cried, we had a great time. I can't think of anything better to cheer me up.

When he finally had to leave, I was so exhausted after several hours of lively activity that I didn't have the energy to feel sad that he had left. Doesn't make total sense, but it worked out that way. Instead, I awoke this morning with more energy than I have had in a long time. I got up, did laundry, cleaned up the kitchen and cleaned out a closet that I had been avoiding for months. I definitely needed to do this because it is the closet where I stash all the Christmas gifts as UPS and the USPS bring them. Thank you, God, for giving me online shopping! Now I can get busy shopping again because there is still a lot of empty space!

Tomorrow, I will most likely be exhausted again. That is just the way this disease works. Any activity out of the ordinary, even when it is such an enjoyable one, can exhaust us to the point of having a couple really down and worthless days. My sister and her husband left as soon as my cousin did because they could see how exhausted I was. Not everyone is as observant when it comes to living with someone with FTD but they know me and understand.

Any activities, stress (arguments, frustration, confusion, really anything) can affect us like it did me. Many people, including friends, family and, yes, even caregivers, do not seem to be able to recognize this fact. They think that it if is an enjoyable event and we seemed to have a good time during it, that it should not be exhausting to us. Some even suggest that since it was fun, we should be energized and/or in a better mood than before.

Ah, wouldn't that be wonderful!  Yes, we can have fun and enjoy activities, visits and adventures out of the house. We usually pay a pretty big price for the enjoyment though. It is plain to see, right after the end of the event that we are tired. Unfortunately, though, the thing that many do not recognize and sometimes actually doubt the validity of how long this exhaustion can last. I wish it were so.

It is extremely rare that, after a fun event like my cousin's visit, that I have any energy at all the next day. I usually need at least two or three days of rest and inactivity to recover. I am also usually quite cranky during the recovery period. I have often been asked why I was was so down after the fun we had the day before. It just doesn't work that way. Most of us cannot recoup the energy that quickly. 

So, you may ask, why was I so energetic today? If you regularly follow my blogs, you are most likely aware than I am also the caregiver for my husband who has Alzheimer's. We have been trying for months to get him on a good sleeping schedule, all to no avail. He continued to wake me at least several times each night and it would take quite a while to get him settled back down. Those of us with FTD need more sleep than most of those without the disease, not a drastic cut in the amount of sleep we get.

I experienced what I will call a miracle a few days ago. During a support group chat, I was talking about how exhausted I have been and explaining everything we had tried to get him onto a healthier sleep pattern. If my care helper had not been staying over a few nights a week to help me deal with the night-time drama, I would have been in even worse shape. Anyway, one of my friends asked, during that chat, if I had tried CBD oil. After I slapped myself upside the head, I admitted it had not occurred to me.

Oh, FTD, count the ways I hate thee. I use CBD oil... for stress, for FTD headaches, for nervousness and other reasons. Why had I not thought of it?  So that evening, I snuck it into his drink before bedtime. I even put a drop on each of the donut hole treats he takes into the bedroom with him and eats throughout the night.  He did get up once through the night to get another snack, but he was quite mellow and did not come into my room, just went back into his own and back into bed. 

It has now been three nights like that. Absolute heaven... three nights of uninterrupted sleep. I know there will still be bad nights, I am not that naive. I will, though, enjoy each and every one of the good ones. I owe my friend at least a dinner the next time I see her! 

I don't know what our doctor will say this week when I see her. Honestly, I don't care. I will keep using the oil anyway. Whatever works. Whatever keeps him most comfortable. And... bonus points when it lets me sleep! I am not naive enough to think this solution will make my life as a caregiver and having FTD easy, but I will enjoy it while I can.

I Hate, Hate, Hate FTD

I absolutely HATE FTD!  The only good part is the friends I have made, online and in person. They get it! ONLY someone who has FTD can understand this. Others, including caregivers, no matter how good, cannot understand what it is to live in our shoes. Many will insist they do understand but nope, no way!

Those of you in the same support groups (okay, just the ones strictly for FTD'ers) may have noticed I have not been as involved as I usually am. I was feeling guilty (yes, I know, no guilt allowed) that I haven't and when I do, am I giving the right responses. I will admit to being exhausted from caring for my husband and chalked up to that. 

Over activity is not good for FTD'ers. They may keep up with it for a day, maybe two, but there will be a price to pay. After surviving a busy day, out of the house or in, or company in our house, I have at least one "crash" day.  I know I have written about this several times before so I will not repeat it all. If you want more info, send me a private message on Facebook.

I did not blog last week. I wasn't busy and my helper had stayed over so we shared the middle of the night incidents. I just sat at this computer and stared. This is how I was for nearly two weeks (no longer staring at the computer the entire time). I am my own worst critic, so I was upset that I was not doing anything.  I was tired alright... tired of FTD and, frankly, tired of having to deal with it. When I looked in the mirror, I was not seeing me. I was only seeing FTD and how much it has changed my appearance.

I was determined to blog today. I was still just sitting staring at the computer. Then I tried going through all crappy things about when I hit on the danged "APATHY". I knew my FTD symptoms were worsening significantly the past few weeks, so why didn't I think that my apathy could be worsening as well?

I, plain and simple, did not think of apathy, because I didn't care. Now isn't that a conundrum? My legs and hips have been hurting so much that it is painful to stand or even to sit. If you know me at all, I don't let anything keep me down but I just could not break through the apathy. Why now?

Humiliation, that's why. My helper, Peg, suggested I take a long, hot, bubble bath. I took her suggestion to heart and it felt sooooo good. Until the water started to cool too much, everything was great. Then... I could not get out of the bathtub. I tried every which way and these legs were just not going to get me out of there. I know I should not have, but I was hugely embarrassed to have to call for Peg to come help my naked self get out.

I ride our senior van service often, it's so wonderful to be able to rely on them. A day or three ago, I could not climb up the two steps to get into the van. And wouldn't you know it... that was the very first time I was riding with a total capacity of 11 passengers. Usually I am the only one or one of two.  When the driver offered to put me on the wheelchair lift to get on, sheer embarrassment and determination got on. I managed to get my purse and shopping bags up to the passenger area, then crawled up the stairs and pulled myself upright with one of the support poles.

These two examples sum it up pretty well. The strength in my legs is weakening. Another worsening symptom is my ability to comprehend that someone is talking over the noise of the television. I have to signal for them to stop and repeat what they said but not until turned the tv off and focused what is left of my brain on what I was hearing. Even then, I have to ask them to repeat it a couple times. 

Yes, I will admit that my FTD is worsening as my role of caregiver does. But if given the choice of placing my husband or allowing my FTD to worsen as we fight his Alzheimer's, keeping him at home is the answer every time.

I must tell you about something that happened this week. I was trying to get him to go to bed at 10 pm. He had a huge (for him) dinner that lasted until 7 pm and several desserts. He insisted that I needed to cook him lunch before he went to bed because he hadn't eaten all day. He wanted hot dogs. I gave him a couple crackers with peanut butter on them. This did not make him happy one bit. When I was tucking him in, I kissed him and told him that I love him to which he always says the same. Except that night. He wouldn't say it. I left the room feeling miserable and, if I were able, I would have been sobbing. It took me a bit, but I did realize that he was simply asserting his independence. Someone is always telling him what to do. I knew that, without question,  when I checked on him for the first time that night. He was lying side ways across the king sized bed, dressed in jeans and warm shirt. He even had on shoes that he had to tie. The topper was when I realized he had a ball cap on his head and that he was sound asleep.

Then I turned on my cell phone and ordered door alarms for all the doors that lead outside. There is no way for me to not hear them. When they said loud, they weren't falsely advertising. I put none on his bedroom door, I will not take away his freedom to walk to my room or the kitchen. Actually, alarms are a good idea even if you have never wandered, don't wait till the first time it happens.

The Burden of the Caregiver

Sometimes, I wish that someone would design a beautiful necklace that we could wear, if we chose to, that says "I have FTD!". Better yet, since many men balk at wearing necklaces, a lovely tattoo across the forehead would do.

Instead, I end up yelling "I have dementia too!". I really don't want to sound like a crybaby, but I will take the risk. When I was first diagnosed, everyone tiptoed around my diagnosis. Except for my boss who fired me as soon as she found out. Naive of me to think it wouldn't matter to her. I never thought it would because, after all, we were friends as well. Very naive it turns out. Though I should not be too hard on her because she did generously offer to carry my belongings out to the car for me.

Back then, I had to tell people that I have FTD but was not an invalid. Everyone was trying to do too much for me. My husband took his caregiver role much too seriously at first and I had to explain where my borders were. At the same time, my friends and family had advice for me. Most advised me to leave my husband and move away. I kept reminding them of the vows I took and still take seriously. I am telling you about these personal things in order to lay some context down.

I will admit that there were times I considered taking their advice but I knew the things they were seeing in him were not his normal self.  When I finally asked our doctor to consider the possibility that my husband had dementia, she was not quick to believe me, but the longer he talked, the more convinced she became. So what do we do now? My caregiver became the one who needed a caregiver the most. 

By this time, as most of us have experienced, family and friends drifted away. All of a sudden, no one, except my FTD friends, cared about me unless it was in relation to what I was doing for him.  Now, to the two friends and a couple family members, please stop fuming and realize that I am not including you in this either. I wouldn't know how I would keep on without you and your encouragement. To be honest, friends and family (mostly mine) have scattered like the wind and they never came back.  Dementia is not easy to deal with if you have no prior experience. It just makes people uncomfortable.

My FTD kept worsening but I was expected to have limitless energy and abilities to care for my husband's dementia. I am not complaining. I manage to do it all and know when to ask for help when I need it. If you knew my husband, you would know that he would not willingly accept outside help. I am fortunate that he does accept my friend, Peg, in our lives. She is the same age as my husband (10 years older than I am) and the same quiet demeanor. She spends more hours at our house than she does at her own and even has her own bedroom now. On the rare days she takes off, he even asks where she is.

It isn't Peg, it is others who, like I said, don't truly know him. I keep being questioned. "Are you getting him outside for exercise?" "Are you keeping him active?" "Are giving him xxx supplement?" "Do you take him out while you do yard work or maybe have him make a garden?" "Do you make sure he keeps in touch with his friends?" I could go on and on...  The answers are no, no, no, no and no. I keep him clean. I keep his clothes and bed linens clean. I feed him at least two good and healthy meals a day and try to switch him to healthier snacks. As for the rest, it would take a small army to get this man to do things he doesn't want to. Trust me, I have tried. 

The next question is often, "How are you holding up?"  I want to scream "I have FTD, how am I supposed to hold up?" No one seems to see when my legs will not move or when the brain has me walking backward. They get irritated when I am tired and have to search long and hard for correct words or need them to repeat themselves a couple times. 

This is when I need that tattoo!  Uh, remember me, the one who has had FTD for 8 years now? All of a sudden, I am supposed to be a disease free wonder woman. Fortunately, I don't care what they think. I know that I am doing better than many caregivers who do not have dementia, so I'm doing pretty well. The exception is the days following the nights when he won't stay in bed or sleep. Those are tough, because my FTD symptoms are worse when I am tired.

I sure blabbered on enough to that you are wondering where all this is leading. Here goes: I get disgusted when I see or hear caregivers complaining about certain things. I can almost assure you that your "loved one" is not deliberately doing any of these things to antagonize you. Most with FTD are incapable of plotting a way to make you miserable. That was one of the first things to go... executive functioning. 

I agree most caregivers need a respite now and then, especially if they have no assistance or back up. I am sorry if it offends, but when I see caregivers going on and on about needing a week of respite every few months, it hurts. Now, I will admit that Peg forces me to get out of the house once a week even if it is usually to the grocery store. She keeps trying to get me to go to a restaurant for lunch before I hit the store, but I don't. 

What bothers me is that none of us with FTD ever get a respite. We cannot get away from the onerous burden of our disease, not even for five minutes. I wish I could create places around the country where we could go, places where we would be safe and cared for. Don't you dare say that we can go to a nursing home for a week's respite. I am talking a condo on the beach, a cabin in the mountains or a house on a lake or whatever calm and restoring place each of us longs for.  We could have a replacement caregiver if we needed one. 

One problem with my FTD is that I can no longer even visualize and dream about such a place. I don't have much imagination anymore. I know I cannot create my wished-for places. Travel arrangements alone would become too complicated.

I know that caregivers do need a respite, I do. It is just that every time I see someone talking online about taking one, I cannot help but worry about the FTD'er who was left behind and how they may be wishing to be in a calm and beautiful place as well.  Please realize that this is not aimed at all the caregivers. There are many damned good ones. Personally, I could never tell my husband that I am leaving for a week, weekend or few days to rest and renew myself. I will admit, though, that I am very lucky that he encourages me to go to the annual AFTD Education Conference. 

I have had to avoid several support group pages because of this, as well as caregivers saying horrid things about their "loved one." I am not talking about the posts about difficult occurrences or problems caregivers encounter, just the ones that read like you think we are an irritating burden. I will admit that quite often we probably are. Many of us do read the "support" group pages that are open to all. Some of the comments really, really hurt. Perhaps I am unfair to expect caregivers to have to censor themselves. I will accept that if you do. I am suspecting I may have written about this issue before because it has bothered me for years now.

I know I have taken a risk of alienating some caregivers by writing this but I really felt the need to get it out there. So, as Tiny Tim said to the caregivers, "God bless you every one."  Okay, my FTD is not bad enough to know this is really not close to what Dickens wrote, but the sentiment stands.

We Never Know for Sure

By now, I think that most, if not all, of us who have experienced dementia in any way, have heard of sundowning. I do run across individuals from time to time who give the symptoms and wonder why their loved one is experiencing these things making their life difficult.

Some one related about how the FTD'er they were caring for seemed irritable and restless, confused and disoriented and would wear out the carpet if they did not make her sit down. After I said the word "sundowning", the response was "I always wondered what that was." She confirmed that the symptoms worsened in the evening and night.

I was shocked to learn that sundowning also occurs in individuals who show no other signs of dementia. Then I thought about the changes in season. Many people I know would comment about how difficult it was for their body to respond to these changes or how difficult it was for their pets to adjust. Some brains will not easily adapt to the change. It is no wonder sundowning occurs and is worse for those with dementia. Even the change in seasons, the moon and alignment of the planets can affect some.

I found where one medical scientist believes that it truly does mess up our "body clock."  I did not realize that this truly existed. Since FTD and other dementias deteriorate our brains, it makes sense that dementia could definitely worsen this experience. Sometimes, people forget that the brain controls absolutely everything in our body. If we are experiencing or seeing someone else experiencing the symptoms I mentioned above, it almost certainly originates from the brain.

When the hours of daylight gradually shorten or, in the case of seasonal time changes, sudden changes, it means less light and a greater than normal amount of shadows. It can cause fear which triggers all the symptoms associated with sundowning.

There are many suggestions on how to reduce sundowning. Try to keep the daily routine the same. Don't allow naps except early in the day. Personally, I can't control when I nap. When I am exhausted enough, I fall asleep.  Increase the inside lighting as it gets darker. Close out the darkness with blinds or curtains.

One interesting thing I read suggested that the one with FTD may be picking up signals from their caregiver to trigger it. As the day goes on, caregivers get more and more exhausted. They may, unknowingly, be less patient, sharper voiced or moving faster to try to get everything done.  If the caregiver's schedule and attitude change, it makes sense that the FTD'er can pick up on that and then their own changes.

When my husband began sundowning, I bought a table clock that shows the day of the week, time of day (morning/afternoon/evening/night) and the actual time and date. Once he got used to this, it seemed to help quite a bit. Now, though, he will argue with me about it.

One night last week, he came into my room at 3 a.m. which is often the time he wakes up confused. He insisted he be given his morning pills. When I explained it was 3:00 in the morning, he said, "No, it's not. I need my pills and my breakfast."  I tried showing him on his clock. When that didn't work, I opened the curtains and showed him it was dark out. His response was something like "Huh, that's weird. NOW can I have my morning pills? 

The only other thing I could think of was that he was hungry. Since he always takes his morning pills with his breakfast, it may have become all one event to him. I let him drink a bottle of Boost and got him settled back into bed. When I woke up this morning, he was sitting in his recliner, sound asleep with his head nearly touching the arm of his chair. (That would have made my neck hurt for a week.) I knew he had been asleep like that for a while because infomercials were on the television instead of sports.

When I tried to give him his breakfast and morning pills, he insisted it was nighttime and he should have his evening pills, not morning ones. I showed him how bright and sunny it was outside but again that did not work. I finally came up with "I think I forgot to give them to you this morning, so you need to take them now."  It worked, he took the pills, but had no interest in breakfast.

Fortunately, this was a rare occurrence. I moved into the bedroom right across from his and keep my door open so that I can hear if he gets up, especially if he leaves his room. Perhaps I was more tired than usual or, even, that he was particularly sneaky because he still wanted his breakfast. There is no way know. I do know that it is taking a while to get him back on a time schedule.

Isn't that the way it is with FTD and other dementias? We just never know for sure. We don't know for sure why some with FTD experience sundowning and others do not. We don't know for sure why some get violent and others get sneaky. The only explanation is that it most likely it depends on the areas of the brain that are destroyed by FTD and the order in which they are destroyed as well. 

This fickle pattern is also why I get questioned, nearly every week, about why I am still able to care for my husband (albeit with help for a few hours during the day) or why I can still write and their loved one cannot do much of anything. In addition to reasoning and planning skills (executive functioning) being the first to succumb to FTD, it stole my artistic abilities early on as well. Yet, many others with FTD have developed them. I have difficulty with motor skills which often lead to falls while others don't.  Some can follow movie plots and watch movies and television for hours. I can handle about 45 minutes, the length of one hour of television, yet I can still read. I often stutter or need to search for correct words when speaking. When writing, it is easier for me to find the words. Of course, it is typing, not writing by hand. That went a long time ago. I can still do it, but no one can read it.

I don't need to give you more examples. I will say the expression I hate, "It is what it is." The only thing we know about lost abilities is to narrow it down by what location in the brain controls that particular thing. We cannot predict what will go next or what will stay.

All we can do at this point is to continue to encourage and support FTD research. For those who are able, I encourage you to consider enrolling in research studies. I also encourage anyone with FTD to donate their brain to research. You can do this without donating the entire body. The procedure differs from state to state, but you can easily seek out those in your state who accept the donations for information on how to arrange for it to happen once you have died. A local funeral home should be able to help you as well.

Reading Between the Lines

First of all, I apologize for not being more regular at posting blogs. I am not finding the energy or impetus to write. Thanks, FTD.

One good thing, at least I think it is a good thing, I have noticed since having FTD is the ability to see through all the crap people present us with. When someone says something to me, I can sense hidden undertones in someone's voice, their body movements and can see the changes in their eyes. This helps me to distinguish between the lies and the truth, as well as hidden agendas.

This goes beyond recognizing when someone is lying to get out of a social event with me, the "one with FTD" who might embarrass them. That happens often enough that it doesn't take much to sense that. I think all of us experiencing FTD develop that sense. Like after pictures from a "family" event pop up on Facebook that I was never invited to. I don't have many filters, so I am likely to make a comment like "Oh looks like I missed a good time." or "Damn this disease, I must have set the invitation aside to respond to and then totally forgotten about it." It is actually a form of entertainment for to see them squirm in their responses. Not as entertaining are the ones who openly say they didn't invite me because they didn't think I would enjoy it or other such nonsense. This affects the caregivers as well as those of us with FTD.

I must admit that I have always been an empath. I could sense people's feelings or feel the negative "vibes" in a space. This is not something I was open about. I never shared it with many people at all.  This sense has become stronger since FTD. I attribute that to FTD ridding me of so many filters. It seems they affect both incoming and outgoing thoughts and words. I have always been able to sense things by looking into a person's eyes. Those senses have been accurate enough that I do believe in that ability.

I will give you an example. Back when I was still working, I didn't start until mid-day. When I approached the employee entrance, I touched the handle and immediately pulled my hand back and realized I did not want to go in there, that something wasn't right. When I did go in, I quickly learned the boss had gone on a rampage and had fired three of  his six employees. Fortunately, I worked for the person who rented office space from him, not him, but the mood was black for several days.

When someone asks if I want them to do something for me, I see the "Oh, please, please say no, please, please." in between the lines. This is right along with the ones like, "I didn't know you like to go fishing, I would have asked you to come along." Substitute fishing with any other activity. Thinking about it, I don't think I would like to fish anymore.

I have no explanation for this and also do not know if others with FTD have noticed this with themselves. I would truly appreciate feedback from those with FTD as to whether they have experienced this increased awareness. 

After getting so far into this and after an interruption, I am scratching my head and trying to remember what point I was aiming to make. I guess no point, except to let people who care for or know someone with FTD know that it is not safe to believe they don't know what is going on or what you are saying to others when in earshot of you. They can probably also sense when you say things like, "Oh, you wet your pants again, come on and we'll get you changed again." you actually are thinking, "Oh, damn, wet pants again. Does it ever stop? Why do I have to deal with this?"

I am learning to use this increased awareness in my role as a caregiver as well. I am becoming able to slow down and think about what is causing a behavior or what he is needing and can't express. 

I have started letting him sleep as long as he needs, or wants, to in the morning. Well, to a certain extent anyway, If he is still in bed at 3:00 in the afternoon, which he often is, I do go and start to wake him. But I do it gently now. I will crawl up the bed and lay next to him and put my arm around him. Sometimes he says "that feels nice." or "I love you." Don't get me wrong, there are still days when he says, "No, I want to sleep some more." or "Leave me alone." When that happens I try things like "Well, you do need to come out and take your medications. If you do that, you can come back to bed or nap in your chair." 

I also no longer take for granted that he can NOT do things. If he asks for a snack, I will get it and put it on the counter. I give him a few minutes to walk over and get it. If he doesn't, I ask if he wants me to bring it to him. Never, "Aren't you ever going to come get this snack you wanted?"  I have decided that he knows when he has the energy and when he does not or when his legs feel steady and when they aren't just like I know my own limitations at any particular time. I am very aware of that since FTD gives me the same problem. I never know when my legs will work.

I am also more observant of his activities and movement. If he is has had a good evening, I will go to bed before he does. He has a list of what needs done and I go over it before I turn in: turn off the heat on your chair, turn off the TV (both red buttons), close the lower lock on sliding door, turn off all lights except the one on your table. I will admit that I do not go to sleep until after he goes to bed and I go out and check everything, especially the heat feature in his recliner. It doesn't not automatically shut off like his old one and I worry about fire. I feel, though, that I am helping his sense of independence.

On the other hand, if I recognize that when his evening has been stressful, I stay up and help him get ready. We are at about 50/50 on this right now. 

It is not all peachy though. A few nights ago, he got out of bed for three different reasons and fell three different times. When he falls, he just looks at me like "Okay, pick me up." Uh, sorry that just won't work.  I have been using the techniques I wrote about a couple blogs ago. I coax him to lie on his belly, move his legs and arms forward until he is in a crawling position and have him crawl to a sturdy piece of furniture where I can assist him in standing. The looks I get could kill because I won't pick him up. 

The morning after the three falls, he was fine. I had a really painful left hip, a large bruise on my right leg and arm, along with a very sore shoulder. I talked to him again about how he cannot stiffen his body and expect me to lift him. Then I showed him again, while he was awake and alert, how he can get himself up with me aiding him. 

I don't expect miracles and I know that as his Alzheimer's Disease and my FTD worsen, it will become more and more difficult. It is really a dirty trick to give us both dementia, but I will manage as long as I can. 

Oops, Practice What You Preach

I often make suggestions to both those with FTD and their caregivers. Sometimes, though, I forget to make those suggestions to myself.

My husband's Alzheimer's dementia was noticeably worse the past two weeks. He was experiencing urinary incontinence. It also seemed his confusion had worsened significantly. I was coping with it. I was doing two loads of laundry a day which added to my fatigue from FTD. The confusion broke my heart and if it weren't for the apathy bestowed on me by FTD, I would have been crying. I kept feeling like crying, but just could not.

Finally, he mentioned to me that his private areas were itching. I tried to kick myself in the butt, but had to settle for cuffing myself upside the head. Of course! Check him for a UTI!!!

I was lucky that I had no trouble reaching our family doctor because I was totally out of home test strips. (Suggestion, make sure to keep these in hand. I just bought a bottle of 100 for less than $10, so that was not the problem, I just forgot I needed to replace them when they ran out.) I buy ones that test for 10 different indicators of infection. They are not 100% accurate and I know my doctor always wants to run a urinalysis to verify the strip's findings, but when they turn out negative, I am comfortable that it is accurate.

Back to our doctor. She is wonderful and knows us well. She allowed my sister to pick up a specimen bottle and after I got him to fill it, my sister then took it to the lab. The doctor called first thing in the morning and ordered the meds to be delivered by the pharmacy. By 11 a.m., he had his first dose. I was extremely lucky that my sister just happened to be coming by that afternoon and that she was happy to help out. Can you imagine how stupid I felt?

In addition to the suggestion of keeping the strips on hand and not missing the symptoms like I did, I also encourage you to develop a close relationship for your family doctor. To me, once you have a proper diagnosis, I saw no sense in continuing to see a neurologist. First of all, all of them in this area are in the same practice and they all misdiagnosed my FTD as depression. Arrrggghhh!  I would have to travel 100 miles each way to see the neuropsychiatrist who correctly diagnosed me even before the scan that confirmed it. Plus, a neurologist is interested, for the most part, in your brain, not things like your urinary tract.

The other good relationship that can become a life saver is your local pharmacy. If I continued to use the mail-order pharmacy, I would save around $20 a month, but if I had questions or needed a quick delivery, I was out of luck. I actually changed my local pharmacy as well recently because a local one, whom I trust, became a "preferred pharmacy" with my insurance company. They deliver all day and into the evening and will deliver anything in their store to me because they understand our situation, even milk or ice cream!

I have heard horror stories about prescriptions filled by chain box stores with pharmacies being incorrectly filled that either did or could have caused serious outcomes.  I am not talking about chain pharmacies, just chain stores that happen to have pharmacies. Using this type of pharmacy, however, can often save you a significant amount of money. I encourage you to always, always, always check the prescription when you get it. If the pills look different, please ask rather than assuming they switched to a different company.

Something really upset me this week. I noticed several people trying to bring politics and social issues into the FTD support groups. There is no need for that, none at all. We all, FTD'ers and caregivers have an important common interest. We do not need to be divided by outside issues. In my opinion, we need to put all these personal preferences aside and stick to supporting each other. 

I do not care what your religion is, what your sexual preferences are, who you voted for in the last election or plan to support in the next one. If you are dealing with FTD, you have my love and support. To be truthful, I don't care about any of those things in my personal life either, as long as it is presented in a way to support your own beliefs rather than to reject everyone else's. 

As long as I have gone this far, I am going to address one more thing. No two people are alike and no two cases of FTD are exactly the same. Many of us deal with it in different ways. Who cares? Some people can come across as whining or depressed or desperate. Guess what? That is most likely how they are feeling at that moment and they need our support and encouragement even more at times like that.

To me, using any derogatory term to describe an FTD'ers or caregiver is inappropriate. We all address our illness in different ways. Some are able to set their diagnosis aside for the most part and to keep their lives as close to pre-FTD as possible. Others are unable to do that at all, quite understandably. Some choose to be open about their diagnosis and all that is happening to them because of FTD. I honestly believe that those or speak out, or write about, their experiences are hoping that it just might help someone else. I know that is why I do.

I have actually been accused of not really having FTD, that my symptoms aren't bad enough. Can you even begin to understand what that feels like? 

Okay, I will climb off my high horse now. The lessons I learned this week are to be more observant of new symptoms in anyone with dementia and to be more accepting and supportive of everyone dealing with FTD because we are all in the same boat.

Always Reminding Us

Confession time. I have dementia from FTD, Frontotemporal Degeneration.  What? You already knew that? I sometimes forget about it. Like this morning, early afternoon rather, when I nearly bit the neighbor's head off.

Around 1 pm, when I finally had a chance to go out for our mail and newspaper, a neighbor was doing the same. It is hot here, hotter than usual even for mid-summer. She said obviously I was moving slow today too, that she was not going to do anything but keep cool today. Oh, and they were going out for dinner so she didn't have to heat up her kitchen. It must have been hotter than I realized because I am sure I felt steam coming out of my ears. She was very lucky that my lack of filter was moving slowly in the heat. Or maybe I am the lucky one since I can still live in the neighborhood. She knows my husband and I both struggle with our dementias but didn't even ask how we were doing. That lack of filter that I was fighting sure brought it home that I have FTD.

I couldn't help but think of the "helpful" advisers who tell us to just ask our neighbors for help. Be specific and tell them what you need and they will be happy to help. I will admit, I did live in a neighborhood like that once. We used to have progressive dinners and throw impromptu cookouts in the summer and soup suppers in the winter. We would go to someone's house uninvited because we knew we would be welcomed with a cold drink or cup of coffee. Not so much in this closed-off neighborhood. Make that not at all. We moved here 15 years ago and I still miss that cul-de-sac neighborhood. 

As I walked back to the house, I was laughing to myself the whole way. I wondered if maybe I should have asked that when they go out to get some food for dinner, could they pick some up for us. I would have gladly paid for it. In fact, I probably would have paid for theirs as well. I have asked them for much simpler help from time to time and was given one excuse after another. I don't bother any more so no dinner from the neighbors. 

When I was back in the house, I received a phone call from the pharmacy. They are starting us on pill packs. Now, instead of filling pill boxes, we will have a package with all our morning and nighttime drugs in a sealed pouch, all on a roll. They are ready to start my husband's this week. They couldn't start when we first signed up because they had to work around our refill schedule. 

I was on the phone with this supremely organized pharmacist for nearly an hour. We had to go over every prescription, including dosages and when they are taken. Then we had to do the same for all the over-the-counter meds and vitamins. I was confused half way through the first drug. I kept reminding her that I have dementia and needed her to be patient and to speak slowly and clearly. By time we were done, I realized I was never going to be her favorite customer.  Yep, my FTD is surely busy today. 

I decided to tackle some paperwork that I had been putting off. I pay most of my bills online, but some I just can't. I had one that I would need to write a check for, so I went downstairs to get the checkbook. When I got down there I remembered I had one of the daily loads of laundry in the washer and detoured to the laundry room to switch it to the dryer. I was proud that I even remembered to put a load of sheets into the washer. As I was going up the stairs I was reminiscing back to when I only needed to do laundry once a week. I guess that was my husband's Alzheimer's hitting me upside the head that time.

Did you catch it? I forgot what I had gone downstairs for, the checkbook. So, I head back down. On the way, I wondered if I had locked the door when I came in from getting the mail and paper. I usually leave it open in the morning for my helper to come in, but she wasn't coming today. I went out and was quite proud of myself for remembering to lock the door. After I got upstairs again, I still didn't have the checkbook. I was done. I wasn't making any more trips down. Who knows what I would have done next. Fortunately, I looked at the form and it turns out I could do the payment directly online. I still hadn't done it but knew I wouldn't have to remember to go down and get the checkbook. When I realized payment wasn't due until September, I put the form back into my desk drawer to pay it later, there was the checkbook. I had forgotten that I keep it in my desk now instead of downstairs in my husband's. I was really happy that no one had witnessed this mess. Classic FTD story for sure.

I wish I could tell you that the day got better. After all, it had started with clipping my husband's gnarly toenails, so it had to go up from there. Didn't it?

Of course not, since the neighbor wasn't about to bring us dinner, I was going to need to cook for us myself. Except, 6:00, our usual dinner time, came around and I realized that what I planned to prepare needed to cook for a whole hour. FTD actually came in handy for this one. I soothed my carb craving and soothed my hunger by eating a cookie. Then I handed one to my husband and told him he needed to eat it because dinner would be late. He didn't care, he would rather have a cookie and didn't have a clue what time it was anyway. This time, it was his dementia that jumped up to remind me it is still there.

No way that any of us with FTD can forget we have it. It is always right there with us to remind us.

Beware of Snake Oil, But Remember Love

I have not posted a blog entry in three weeks. I hope at least a few readers missed me.  Before I get into anything else, there is something I feel I must address.

After posting my blog, comment messages or questions are sent to me via email. They are plentiful and much appreciated. However, there are often enough to nearly fill my inbox. Mostly they are from someone named "Kate." My last post brought me about 20 or so of the same email. It is from someone offering their testimony about how her husband was "cured" of dementia due to an herbal supplement.

This infuriates me!  Not because, they fill up my mail box, but because my research convinces me to believe the treatment is nothing more than a snake oil miracle "cure" that does nothing except cause you to spend money. This is not the only promised cure. There are many floating around out there. 

I will not say there is no use for these treatments. I am sure some of the supplements offer a modicum of health benefits. I am sure, however, that they will not cure dementia.  You can go directly to the FDA website and search for dementia cures and read their warnings. I prefer this site that is easier to understand.  https://www.alzforum.org/news/community-news/dementia-researchers-commend-fda-crackdown-supplement-hype

Perhaps the person who keeps filling my mailbox truly believes what she is saying. Perhaps she doesn't and is not even a she. I have no way of knowing. I do know that before starting any supplements or regimens, you should carefully research it for yourself and definitely discuss it with a qualified physician. Also bear in mind that supplements do not go through the rigorous vetting procedures that prescription medicines do.

If anyone has read any of her comments on my blog, please know that I do not endorse any products or treatments for dementia. Actually, it is the exact opposite.

That said, why have I been missing for a while? Simple truth? I have just been too exhausted to think, much less type out words that would make any sense at all.

Our caregiver/companion (I really don't know what to call her except, maybe, my salvation? How about, for now, I call her Peg?) broke her shoulder months ago and finally had it surgically replaced. She showed up here to work less than a week after her surgery. I swear they should study her healing powers. There really was not much she could do with her dominant arm in a sling except remind me of everything I needed to remember (what was needed to be done vs. what could wait for her, where I needed to be and when, and help keep my husband as calm as possible."

She has voluntarily stayed overnight a few times so that I could get a decent night's sleep. I swear he knew she was here because he slept through those nights each time she stayed. She convinced my sister to take me out of the house for a day for a break. All caregivers should have the instincts this woman has. I do not go out any more than necessary because if I do, I find she has cleaned at least a couple rooms of the house... all with her left arm!

Other than doing a little of what Peg normally does, I have no clue why I have been so exhausted and weak. I started taking an iron supplement and extra B12 since both of those have tested low a few other times and it has seemed to increase my energy level a bit. As fate would have it though, once I started feeling a bit better, I came down with a cold. 

This made me face reality. My FTD continues to worsen. Somehow, I had convinced myself that I was staying at an even keel so that I could care for my husband with his Alzheimer's Disease. Wishful thinking, I realize that now. At the same time, his dementia is worsening. I am fortunate, that for the most part, he is still easy to get along with. Except for bathing of course. He still hates that. Afterward, he says he feels better, but he just can't make the connection that it is the bathing that makes him feel that way. I guess that connection in the brain no longer works. This is such a common thing with FTD and, I guess, with all dementias. As I wrote before, switching to "wet" sponge baths has helped immensely. He does not mind the water when it is done this way.

Peg is working with me to not jump as soon as he asks for something or looks like he wants something. Included in that is to not help him do things he is still capable of doing. For instance, it takes him a long time to dress himself and it usually isn't in the best of clothes (I think he believes holes makes everything more comfortable) but what does that matter. I do make sure to remove his dirty clothes from his room at night or he would wear the same thing for weeks, even the underwear. Yes, it is gross.

Until she pointed it out, I had not realized that I was doing nearly everything for him. It is sometimes difficult to watch because I know he is struggling, but she has me convinced that it is good for him to be able to do a few things himself. When I thought about how much I insist on remaining as independent as possible with my FTD, that totally makes sense to me now. Now, I often ask him to do really simple things... like opening a box or setting a dish in the sink. He now will, occasionally even take the plates out of the dishwasher when he see me start to empty it.

One thing that continues to amaze us is that he recognizes all of his medications. He takes 13 pills in the morning. None are for dementia, obviously. Most are for his heart and blood pressure, the rest are vitamins. If I have made an error filling his pill boxes, he catches it. I cannot even do that for my own, yet he can do it without fail. Because I struggle with it, we have switched pharmacies and will soon be using pill packs to eliminate me filling the pill boxes. I have confidence that he will still be checking them every day.

Caregiving can definitely be exhausting and leaves one with very little time to do the things that were enjoyed prior to becoming a caregiver. It is not at all an easy role to fulfill. Even raising children was easier. First of all, most of us were younger and still full of energy. We were mostly not stuck at home because it wasn't nearly as difficult to take them along with us. Plus, it was, for the most part, a role we had chosen. I stress here, as well, that all this is also true for those with FTD... it is definitely the most difficult task I have ever faced. Caring for my husband makes it worse, but it was extremely difficult on its own.

Caregiving, at least for me and for many caregivers I have spoken with, is easier when we remember the love we have always had for each other. I constantly remember to give my husband a kiss (It's usually on the top of his head or on his neck because I still cannot get him to regularly brush his teeth.) or just a loving touch a little rubbing on his arm or back. Romance is definitely out of the picture, at least for my situation, but love is always there. He will come to me and ask for a kiss or to hold him for a while. It's not always at a convenient time, but I make time. Of course, sometimes, he asks me if I am his wife first. I can live with that.

I've Fallen and I Can't Get Up

It has been an interesting week in our household. Along with our "new normal" activities and adventures, we just had to add some more. For one, I got my annual case of poison ivy. Not life threatening of course, but irritating enough to make everything else seem worse. Okay, I will admit, I was really, really grumpy.

It was also the dreaded week when I needed to take my husband, who has dementia from Alzheimer's Disease, to our doctor for a check up. This included an entourage because in addition to my husband and me not being able to drive and his refusal to take the senior van, our caregiver/companion is recovering from shoulder surgery and could not drive either and I really needed her along. Before his appointment, I was seeing the doctor's P.A. for my poison ivy because by then it was on my eye lids. There was no way he would have stayed calm in the waiting room with only my sister but we needed her to to drive us all. This ended up being way more stressful than it needed to be for various reasons. The actual doctor visit was fine because she understands and knows my husband so well and he really likes her. It was just too much for him.

I knew that as stressful as the visit became, that he would have trouble afterward. What I did not realize is that it would last for two days. He was more confused than he has ever been. He kept getting himself up and dressed in the middle of the night and ask for his breakfast and morning pills. He was imagining strange events and kept insisting that there were other people here. I don't think I will ever figure out who was giving out goldfish and, no, I could not tell him if they were doing it safely. It took a while to get him calm after that one.

We finally got through the couple days of this added stress by keeping things calm and on schedule for him. We are not quite back to our normal, but we are getting there. 

At least it was until early morning when he decided he wanted to climb into my bed for a while. I had no problem with that, but I learned that a memory foam mattress is not the best bed to climb into when you are far from strong and nimble. He sat on the bed and tried to get his legs (not much strength there) up onto the bed, the memory foam had dipped from his weight on it and he slid right off.

My first instinct was to not let his head hit the marble top on my bedside table and I was successful in doing that. Now, though, he was wedged into a small space, less than 3' x 5', and there was going to be no way for him to get himself up. I won't go through all the details, but if it had been filmed, it would be a hit on YouTube. It wasn't easy for him to understand my instructions, but we did get him up safely. I knew enough to not try to lift him, especially by the arms, because that action can actually end in broken arms or arms pulled of their socket. Instead, I used my tried and true method of getting myself up after a fall. 

When asked how to get up once you have fallen, I usually give the advice of making sure you are not injured, if so call 911. If not, roll onto your tummy and crawl to a sturdy chair or other piece of sturdy furniture. I don't know how I learned to do that, most likely from falling so often.  Today, while trying to learn if there was a better or esier way to get my husband up from a fall, I found a great explanation of the technique I use.  I thought this might benefit everyone, so here is a link:  https://www.stayonyourfeet.com.au/over60/what-if-i-do-fall/get-up-off-the-floor/  They explain it a lot better than I can.

Also, here is one for how you can help someone else up if they need assistance.  It is the same basic procedure, but with some help.  https://www.youtube.com/watch?v=10jR0zjl19Y

It is essential in either case, to do an inventory of the body to check for injuries before using this technique for yourself or when helping someone else. If there are injuries, call 911 for assistance if at all possible. 

Please bear in mind, through all of this, that while extremely effective, this technique to get yourself up from the floor after a fall can be quite embarrassing in the middle of a CVS store. Thank goodness I was not too far from the pharmacy where I knew some sturdy chairs were available. Needless to say, I now shop at CVS online.

FTD Is Never Ending

During this past week, a fellow FTD'er asked the question as to whether we just get sick and tired of FTD.  I never really thought of it that way before. I hope she does not mind me using her wise question as the theme of this blog. 

Short answer?  YES!  

How can you not get sick and tired of it. Number one, we have it and bravely deal with the symptoms everyday. Secondly, I at least, get tired of it occupying every minute, every second of every day. It never goes away. It does not get better. So we deal with it. Thirdly, I get so tired of having to explain the disease to everyone. It is usually an exercise in futility anyway, because I can almost hear them thinking "Oh, it must be Alzheimer's" or "but she doesn't look sick.)

Yes, we deal with the symptoms everyday as bravely as we can. Some days, I must admit, these symptoms defeat me and I am sure other FTD'ers as well. This is especially difficult when new symptoms appear.

This week, an old symptom came out to play. When I was first diagnosed, it was FTD w/MND (motor neuron disease, related to ALS). The decision to include MND with the diagnosis was made based on symptoms. I could not take more than a couple steps without stumbling. The way they tested it was to have me walk, in a straight line, down a hallway. There was a handrail along the wall and I had to grab on at least every three steps. There were other tests they did, but that one explained to me why other people, when following behind me, were assuming I was drunk. I was ready to make a sign for my back that said "I'm not drunk, I have FTD."

These symptoms never went away, but they never got noticeably worse either... until last week. I either lose my balance or one of my legs, usually the left one, does not get the message from the brain to move. I don't have a way to tell you how many aches and pains this is causing. My hips hurt, my calves hurt, my waist and abs hurt. These pains are being caused by me contorting myself to keep from falling. Yes, I know I should use a walker. It is just that using one in my home is awkward and almost as frustrating as falling. We have a narrow hallway and doorways. We also have very tight corners.

I guess this is an example, almost, of remission. Only in this case, not the disease, just the symptoms of another one. With these movement issues, it was really easy to ignore them. There is no way to ignore them now, especially when I am lying on the floor trying to get up. With my husband's Alzheimer's, he is of no help. I am trying to remember to keep my cell phone on me at all times. I must give a huge thanks to my daughter for "forcing" me to get a smart phone a couple months ago. It gives me security to know I can call for help if the need arises.

Now, for the second point of not being able to escape from it. For a couple years, I felt guilty because every time a caregiver would talk about getting or needing a "respite," I would feel angry and resentful. Calm down now, I am not saying that caregivers don't deserve/need a break from that role. It was simply like rubbing salt in a would because, it was possible, albeit quite difficult, for the caregivers to step away for a bit.  Those of us with FTD do not have any such option. There is no way to get away from the symptoms of the disease. They are always with us, making our lives difficult and sometimes painful, full of the frustration of being limited in what we can do and realizing that it will only get worse. I finally got over the feelings of anger and resentfulness, because with now being a caregiver as well, I couldn't get away anyway.

The other thing that does not go away is the realization that we are causing difficulties for everyone around us. Trust me, there is not one of us who wants to inconvenience their loved ones. None of us are happy that we are unable to work anymore and that we can get Social Security Disability payments. Trust me, those payments don't often come even close to what we were previously able to earn. There is also the stigma of being fired for many of us. There is no question that FTD affects those with higher intelligence more often than not. Therefore, most of us were making a pretty decent income. After FTD we sit around feeling useless because we cannot financially contribute or, in many cases, cannot even do chores to absorb some of that burden.

This fact is also difficult for the caregivers. Here they are, exhausted, maybe even already worked a full day at their job, then need to come home and do everything else... cook, clean, laundry, taking out the trash. You know, all those thankless jobs. On the other hand, we FTD'ers have to sit there and watch the caregivers wear themselves out and yet we still have to ask even more things of them.

I don't have to even talk about the third thing that I am so tired of dealing with. I don't think there is anyone reading my blog that does not understand this one. How many times have each of us been asked "what is FTD"? I find myself shaking my head before I start to explain because I know, 9 out of 10 of them are going to shake their head and walk away thinking either "they don't have dementia or they wouldn't be able to know they have it" or "they don't look sick."

I was chatting on Facebook with an old friend (we have been friends for 50 years) and Facebook has allowed us to get in touch once more. I asked him if he had seen the "Sixty Minutes" piece on FTD. He had not, so I sent him the links. I knew he had watched all three segments when a friend asked, as a reply to one of our posts about it, "What is FTD?" My friend typed, "It is a form of dementia, the worst kind." He got it! If only others would take the time and effort to even just Google FTD. I get very tired of trying to explain it to people who have no clue.

So, in answer to my friend's question, YES, I do get tired of FTD and all the energy to deal with it, explaining it and coping with the symptoms.  I will admit that I even get tired of advocating for the disease, but I will never stop. I will also not stop all of those things I mentioned, especially educating others. It is something that needs to be done. It is also something that rewards me by being able to feel useful and feeling that I just might be helping others. (Not looking for complements, it is just the truth."