Sunday, September 29, 2019

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.

Sunday, September 15, 2019

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.

Saturday, September 7, 2019

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.