Friday, March 20, 2020

Keep Calm and Try to Lessen Stress

I apologize for taking another break from blogging. For the past month, I have been getting my house ready for sale and keeping it model home perfect. Fortunately, I had an offer in just four days at the full asking price. That should have removed most of the stress and anxiety I was experiencing. My FTD never allows my stress and anxiety to ebb to the point where I am comfortable. Add in the paranoia that FTD has given me, I will not be able to relax until all is done here and I have moved into the new house.

About that: When my husband passed away in November, I said I would not make any major decisions for six months. Around the 3 month mark, my sister and my psychologist both reminded me that I had been planning to move near my daughter for several years but was unable to convince my husband. I am quite proud of myself that I actually let my adult daughter pick out a house big enough for us each to have our own space. Turns out, she is having one built. I asked her to make all the decisions about it  in order to not add more stress and anxiety to my life.

So, my house sold very quickly and the home inspection was scheduled for today. I never stopped to think that it would be cancelled due to the COVID19? Turns out real estate is not an essential business and is shut down. I am now paranoid that it won't pass inspection and I will have to go through the entire process again. Fortunately, my realtor is very helpful and keeps reassuring me.

How have I been surviving? Lists, lists and more lists. Even simple little things that I would not have to think about. I have actually figured out who will help me when I ask (read that as "beg"). The only ones I can rely on is my brother in law (and my sister), along with my niece and her fiance. Without them, I would have not been able to show the house. They, along with my daughter who is three states away, can calm me down.

It is a relief that no strangers will be roaming through my house looking in every nook and cranny so that I can stop worrying about their health affecting mine.

I am happy self-isolating. I have always self isolated to some extent, but am now pretty close to self-quarantining. I take this very seriously as should every one with FTD and their caregivers. FTD, as most diseases, weakens our immune system, making us more vulnerable to any virus. Obviously, this is something for caregivers to do as well. The Corona virus has a long incubation period yet the person may not show any symptoms for two weeks which risks it being transferred to everyone they are exposed to. 

I have not allowed my caregiver to visit at all this week because she had a sore throat. I will not allow her to come next week either. Self isolating is really easy for me since I don't like anyone around me anyway, especially when I am stressed.

I did go to the doctor yesterday, but they were taking many protective measures so that I was not closer than 6 feet to anyone and they cleaned the exam room before I went in. Only two patients were allowed in the waiting room at one time and they were limited to one person assisting them and no one under the age of 18. All of my other appointments have been cancelled. The only reason I went yesterday was a UTI that did not resolve with the first round of antibiotics.

Urinary Tract Infections must be taken very seriously. I tell those with FTD and their caregivers this all the time. It can cause a worsening of any or all FTD symptoms. They should be checked out any time there is a rapid increase of symptoms. Obviously, the cause is not always an UTI, but it is the easiest to rule out.

When getting ready to write this, I searched "FTD and urinary tract infections" and what was at the top of the list but a blog I had previously written on the subject. I guess I never learn. I will give you a link about that if you want to read more: https://ftdnoflowers.blogspot.com/2017/09/urinary-tract-infection-and-dementia.html

Reading back over what I have written, it reads disjointed to me. I apologize, today is a bad FTD day for me. The most important thing I have to say is, "Don't panic about the Corona Virus, prepare for it." If you don't have bleach spray, you can make your own if you have bleach, a 30 to 1 dilution. Washing your hands thoroughly with bar soap is better than hand sanitizer. Above all, don't allow your FTD'ers to watch non-stop TV reports about it. Most of us can not handle the added stress, anxiety and fear.



Saturday, February 22, 2020

Decisions, Decisions

I sat down to write this blog because, even though it taxes my brain at times, my body needs to rest. Both are exhausted but this will use my brain differently than it has been the past few days. 

When my husband died back in November, I promised myself that I would not make any important decisions for six months. Here it is, only three, and I have made a huge one. If you don't know, I live in beautiful Central Pennsylvania very close to where I grew up. My adult daughter is firmly ensconced in the southern part of North Carolina. She has a great job and quite a few friends. I would never ask her to move back here. 

Instead, I am taking the leap and moving down there. I met with a realtor last week and will activate the listing in two weeks if I get everything spruced up by then. This is a monumental task for anyone, much less someone with FTD. I am blessed to have a niece and her fiance who are always willing to lend a hand even during the times when all I can do is watch them work. I also have my sister and brother in law who will do anything I ask of them.

They are the four whom I will miss the most when I move. There is only a small handful of others. I do not count those who say to call them anytime for help. Oops, they are busy that day or Aunt Susie's granddaughters's friend's next door neighbor needs them to help them that day. They are also the same friends and family who never call, visit or invite me to join in family functions. 

Anyone with FTD understands what I am saying. Because these people are uncomfortable with my new normal, they are more comfortable avoiding contact. I can only assume that if they don't see me, that I and my FTD don't exist.

I know making this move is risky in that all the work, planning and confusion could cause my FTD to worsen. So this is a conscious decision to take the risk that will help me more in the end. In the meantime, the local Rescue Mission loves me. They have come three times already with their large van to take things to their thrift store and I am well into the fourth load. My trash man may not though. One side of my double garage is filled half way back from the door with things to go out. I guess he really does love me because he told me not to worry, just give him a call when I am done or nearly so, and he and his guys will come pick it up right from the garage.

I have been packing some things already, especially in my husband's dungeon, pack rat haven or whatever you want to call what he insisted was his office. I am having it brightened up with some paint so I had to pack a lot of things to make room for the painter. However, I do not plan to do it all myself. I will hire packers to do what I don't get around to doing. I am trying to pace myself and not do too much in one day.

I present you with a word of advice. Sort through all your stuff now while you still can. Possibly even mark who gets sentimental or valuable items to avoid family feuds later. Doing a little each day should not exhaust you too much.

Enough about all that. I am pacing myself but, yes, I do realize I will exhaust myself. 

As I mentioned earlier, my husband died on Nov. 18th, 2019, from complications from Alzheimer's Disease. His choice was to have his body donated to science and, once we were not wrapped up in mourning any longer, to return to his hometown in Illinois and have a Celebration of Life. He was surely thinking of making it as easy for me as possible. He also had not cultivated any friends since we moved here and joked that no one would show up anyway. Many were shocked that I had no viewing or funeral service but I honored his wishes.

My daughter and I are trying to plan this celebration for a weekend in May, working three states apart and three states to his hometown. Last Fall, I purchased a notebook with erasable marker pages. For anyone who is not super-organized, it is a great help. I started using it when my husband began getting hospice support here at home. Next was for all the paperwork I needed to complete. There was a long list of that! I simply erase as I accomplish a task. I am using it again for the celebration and for the move. It may just be tricking me into feeling organized, but I'll take even that. Before you ask, you can see them online at The Grommet. They are not cheap, but well worth the price and should last forever.

Forgive me because my mind is just spinning and where it stops, no one knows. I sure don't. I learned a huge lesson yesterday and today. On Facebook, I re-posted what I thought was a hysterical political meme. Mind you, I usually avoid any political posting but this made me really laugh. In my mind, it was making fun of every political entity, not just one candidate. This meme did not even mention a particular candidate. Holy crap!  I was attacked. One person assumed that I was an uneducated, unaware idiot and suggested I find a child who could educate me. I will never, ever post another even remotely political item on Facebook. Since I have had FTD, I have the most horrible of all paranoia and I take everything seriously and to heart. I don't understand sarcasm either, but I do know that was not what this attack was.

I can survive moving, dealing with selling the house, attending conference and planning my husband's Celebration of Life. I cannot survive being attacked by others who happen to disagree with me. They can disagree all they want and even post that they do but attacking someone so viciously is nearly unforgivable. I will survive though because I recognize that there are a huge gambit of opinions out there and everyone is entitled to theirs, even me, the uneducated one who needs to be taught by a child.  

Maybe I will ask the 3-year old boy I am going to meet tomorrow. I am betting that what I will learn is that we should respect everyone and their opinion. That we can have opposing views of each other civilly and still respect the other because we are all in this together.

Hmmm..., this could be said about all of us with FTD as well, couldn't it?

Sunday, February 9, 2020

Zeroes and Heroes or Somewhere in Between

Many years ago, I took a few classes on psychology. I wasn't pursuing a degree nor a career in the field of psychology, I was just fascinated by it all. I don't remember much from those courses, but there is one lecture that has stuck with me all this time. 

The lecture began about how some people rate others on a scale of 0-10. It is pretty much self-explanatory. Someone you despise would be a zero. Someone you idolize would be a 10. Unfortunately, it didn't stop there. Apparently there are many who rate others only as a zero or a ten. I wasn't quite that bad, mine was more of a 0-3 to 7-10 scale.

I had always sought out the company of two different groups of people: those who I could help and those who could help me. Thankfully, this happened in my early 20's and I started seeing the value of everyone and how narrow-minded I had been. This greatly helped me in my career and in my private life as well. 

What on earth does this have to do with FTD? The answer is simple. There are many people who view all of those with FTD as a "zero" and view all caregivers as a "10". The reverse is true as well.

At the risk of offending caregivers, I will start there. I have heard and read many caregiver comments about how horrible their FTD'er is. How they don't do anything to help around the house, how they wet the bed or poop in their pants, how they only want to eat sweets, how they have gained weight and how rude and unappreciative they are. This is only a small fraction of the complaints.

I am going to keep my response to that simple. These things are not a conscious decision for the one with FTD. It is a compulsion they cannot control, especially for the poor diet choices. The FTD brain craves sugar and carbohydrates. I read somewhere that the brain is fed by sugars and it realizes it needs help so it demands them. I think I am remembering it correctly. It makes sense to me, but I won't swear it is accurate. 

FTD'ers don't help around the house, at least not properly, because they can't. You should see the basket of laundry I just folded. I cannot fold a shirt. I cannot even fold my underwear. Forget a fitted sheet and even the towels are all catty-wompus. That means messy in case you don't understand Cindy-speak. Telling me to vacuum the floor may end up with me vacuuming the kitchen or not remembering where the vacuum even is. Add to that the fact that every seemingly small task we do exhausts us. The more exhausted we are, the less our brains work. 

Trust me, no one with FTD wakes up in the middle of the night and thinks that it is too much trouble to go to the bathroom so they wet the bed. Nor do they deliberately dirty their pants during the day. Our bodies and brains do not always communicate. Our body needs to move its bowels but the brain doesn't realize it until it is too late. 

Our sense of taste changes with FTD. What we used to like to eat may not taste good anymore and some days it may be that nothing tastes good. Well, except for the sweets. Adding a little agave nectar or honey, even sugar, to the food may even help with that problem.

Before you get angry and quit reading, I will switch to the vice-versa. Caregivers are not all evil, screaming lunatics either. They often break down from frustration. They may even scream. This is not because they are evil or they are bad caregivers, it is that they do not understand what is causing the FTD'er to act the way they are which leads to total frustration. They are also exhausted. In most cases, they must now do all they used to do plus all that the FTD'er used to do. 

Caregivers also realize that their role will not get any easier as the FTD progresses. People tell them to just ask for help. So easy to say to someone, not so easy to obtain. It's not easy to ask and the excuses received in response are endless. I must also mention that having someone else pitch hitting is not always welcomed by the FTD'er who can become uncooperative.

Those of us with FTD have to remember that it is not always possible to have meals on the table right when we are ready to eat. Those meals may not be of top quality sometimes due to lack of time and energy. It would help, also, if we could remember that we just asked for the same thing five minutes ago!

Yes, I know, I have written about these things before. I have especially written about the things that stress both the FTD'er and the caregiver. I just had to reiterate a lot of these things to try to get across the fact that NONE of us is perfect. The reverse applies as well. None of us deliberately tries makes the other's life miserable. 

However, if you think about it, none of us was a zero and probably very few were 10's prior to the invasion of FTD. None of us was without faults but I am sure that all of us had many positive sides. Life is not zero or a hero. It does not matter how good of a caregiver you are, you are not a 10. Though, if I am honest, I can think of a couple who are close to a 9.9. The best part is that they don't even realize how good they are. 

For the FTD'ers, none of us are a 10, probably not even close to it. Many of us do our best to be helpful and not to complain (too much anyway) and be appreciative of all the caregivers do for us. At the risk of sounding like a cliche, we need to meet in the middle of the road. If we both manage to be a 5, perhaps we can make a 10 between us.

I must close by telling you what inspired this post. During my husband's last days, I kept reassuring him and telling him it was okay to go, that I would be fine. Finally, my helper told me that "You know he doesn't hear you, you have not whispered to him in years." Uh, I admit she was right. When I went back into his room, I spoke to him in my normal not so whispering voice the exact same thing I had been telling him all along. He actually opened his eyes and I do believe he heard me. Later that evening when I gave him a kiss, which I did a lot, he responded and kissed me back. I bet you figured out the end to this story. That was the night he passed on. Neither one of us was perfect. Not when he was serving as my caregiver, nor when I was his. What we did do, was always take a few minutes each evening to remind the other how much we still loved and shared. I will treasure that kiss forever. It is at least tied with our first kiss, if not better.

Please try to take those few minutes everyday to reconnect. It may make a big difference. But don't whisper!


Sunday, February 2, 2020

Missing Family and Friends

As well as I know I have FTD, I also know that the day will come that I won't have any friends or family remaining who will still want to deal with me.

The first reason is one I have written about so many times. For whatever reason, when someone hears a person has FTD they start avoiding them. I have no idea whether it is that knowing someone they love has dementia makes them afraid to face their own mortality. Perhaps it is because they don't want to be saddled with any responsibility of taking care of someone with dementia. Maybe they think it is true that everyone with dementia is the same and does not realize what is going on, so why bother to visit since they won't remember anyway. I don't think any of us will even solve that conundrum and we will never understand why.

Then comes the difficult reason to admit. I fear that one day I will offend enough people to the point that no one will even love me anymore.  Yesterday was an excellent example.

I had offered to pay a couple family member to come to my house and help me go through more of my late husband's "things" and there are a lot of them. They agreed to be here at noon. When they finally arrived at 2:30, my FTD had me quite wound up. Me, I started working on things at the noon hour when I expected them. Now, I must add, they did send a message that they would be late but, of course, my  phone was upstairs so I didn't read it until after they had arrived. 

Fortunately I love these kids (actually 20 somethings) so much that I kept forcing myself to calm down and kept reminding myself that some people actually have lives that don't include helping me clean out the basement and garage. When they did arrive, without much of a howdy do, I assigned them tasks. I was very glad that I had calmed myself down because they worked quite hard and I have to say that my garage has never looked so clean! Not even when we moved in!

You all probably know already how much any activity can exhaust someone with FTD. If I cook dinner, I am often too exhausted afterward to even eat. I hate it! So you know that working pretty much non-stop going through everything in a file cabinet and an entire closet where my husband stored everything he didn't know where else to put it. It is made even worse because of the emotions involved with going through his things. Around 5:00 or so, a dear friend came by. He is an old family friend so I knew his coming by would not bother the kids and we had not seen each other since weeks before Christmas. This is when the trouble started.

He walked in and a cloud of cologne hit me. He always wears cologne, but this was a different one and it immediately attacked my allergies. Part of the problem was could have been that after breathing dust and probably mold for five hours, my allergies were already kicked into high gear. However, I was exhausted from working so hard for a few hours so reason was not going to be part of my response. 

Without even thinking, I asked him, "What did you do, take a bath in cologne?" He snapped back at me, "Not exactly and there's nothing you can do about it now."  Ohh, them's fightin' words pardner. I said something to the effect that I could send him upstairs to wash it off or he could go home, take a shower and put on different clothes. 
His quick response was "Go ahead and try."

I looked at him for a bit and remembered how long he has been a friend so I choked back the next words my exhaustion and FTD were wanting me to say. There were more unpleasant moments, like when he looked at a couple plastic totes that I had very carefully packed using bubble wrap and lots of packing paper. He said "What the hell is that? It looks like boxes of garbage. I explained it was just the packing paper he was seeing and then he said "It still looks like garbage to me." I took a deep breath and explained that they were two totes packed with expensive dishes that our aunt had passed on to my daughter and that they are in no way garbage. He had to do it though. He said one more time that they still look like garbage. 

At that point, I so much wanted to ask him to leave and never come back but I took a couple more deep breaths and let it go. I knew I did not dare open my mouth or this 50-year friendship would be over. Instead, I said that I thought it was past time for us to knock off for the day and invited the kids along to our planned dinner out so I would have a buffer.

It helped a lot. The kids are quite entertaining and I talked mostly with them, including him at times. When he drove me home and came in to visit a bit, I was very careful and kept things light. As exhausted as I was and irritated to boot, I did not trust myself at all. 

I can see that, as my FTD progresses, the more I am going to offend people, perhaps not even realizing it when I do. Even though I have explained to people, including him, many times about the symptoms of FTD and how they affect my words and actions, they just do not get it. They think they do and say they do, even to the point of reminding me that I have already told them thank so they understand. 

You all, I am sure, whether one with FTD or as a caregiver and/or family member, have had to deal with similar experiences. I wish I had an answer but I don't. I have explained it so often and in so many different ways that I truly do not think they will ever get it. Perhaps, unless you have dealt with FTD in the first person, it is not possible to understand. 

I often become resentful that I need to measure every word and every action beforehand. That is nearly impossible for someone with FTD to do. We have no impulse control, little or no empathy and enough apathy that we often don't care if we insult people.  Attempting to control everything you do or say is exhausting if possible at all.  I want to scream to the heavens, "I'm sorry, but I just cannot help what my brain does or what it makes my mouth say!"

Some family members and a couple friends seem downright insulted that I prefer talking to my FTD friends, whether online or on the phone, over talking to them. It is comfortable to be talking to someone who cares and who understands. It is relaxing and assuring to be understood and loved despite this disease. It is so much easier to get the correct words out and understood when you don't have to measure every word before it comes out. At least I used to do that. I can't anymore. So, I foresee the day when my FTD friends are the only friends and family left.

So, to all my FTD friends out there, a huge thank you for being there for me anytime I need emotional support. Thank you also to those who put up with me when I am being obnoxious or saying things in a way I think make sense but are in reality not saying what I am thinking.

 Above all, thank you God, for giving me a daughter who understands it all, still sees me as just her mom, laughs most of it off and still loves me when she can't.

Sunday, January 26, 2020

Once More: One Thing At A Time

I think we all have them and sometimes I wonder if they are contagious. They certainly snowball, rolling fast enough that there is no way to catch up to them. Many times, you chase them long and hard enough that you are exhausted for days afterward.

What am I talking about? Those days.... the days when everything goes wrong and the problems just keep getting worse or more difficult to fix or both. I can give you an example and how the day tried to destroy me.

Monday morning on Martin Luther King day, I never had a chance to reflect on this saint of a man. I woke up that morning at 8 a.m. which is actually, yes I admit it, early for me. My helper/care partner was not even at the house yet. Upon awakening, I did my usual morning activity of going to the bathroom (of course) and brushing my teeth. Unfortunately, the toilet and sink faucet both sputtered a few seconds and then... nothing. I grabbed a couple bottles of water and finished up.

Next step was calling a neighbor to see if the problem was isolated to me. No one was home, no one!  While continuously telling myself to calm down, that I could handle it, I started calling the water authority. No answer. The water emergency number. No answer. The fire department non emergency number. No answer. The police non-emergency number. At least they allowed me to leave a message but they never did call me back.

Wait, let me set the proper tone here. We had an ice storm the day before and there was an inch of solid ice covering everything. The night before, when I was preheating the oven, I heard horrible popping and sizzling noises. I ran over and shut the stove completely off and then grabbed the fire extinguisher which, thankfully, I did not need. Chalk one up for me. Of course I had to wait until the next day to call.  

Finally, I calmed down enough to venture downstairs to see if something was leaking. As soon as I hit the bottom step, I could hear a river roaring through the garage. One of the water softener canisters had exploded. Fortunately the floor drain was keeping up with the river. (But can you imagine next month's water bill?)

I was so proud of myself, I remember what lever to push down to shut the water off just before the softener. Long story short (I guess it's too late for that.)  Someone came out from the softener company and bypassed the softener so we could have water. With the ice storm they had no repair people available until late the next day. Yep, I need to buy a new water softener. Mind you, I plan on selling and moving within the next few months. I could not leave it on bypass if I did want to sell. Plus our water is horrid without one. It will be installed this week.

Our wonderful appliance repairman called and, after standing on my head, I was able to give him the model number so he could order the part and he scheduled to come install it two days later.

The day after all this, I managed to fix my missing internet connection all by myself. Don't ask what I did, I just kept trying things one at a time, but undoing what I did when it didn't work. That was a successful one thing at a time. I was kind of proud of myself until I realized it was just trial and error.

As I write this, a full week after the ice storm, the drive is still thick with ice but I am relying on the sun to melt it, I spread just five pounds of salt on the edge of the drive so we could at least have a path to the mailbox. My father is probably still cringing in his grave. You NEVER put salt on the drive!  Yes, Dad, I know.

My stove is working again. Dang... I have to cook. Actually . I am very thankful I remembered my One Pot so after the first night, I could cook. Pretty good thinking, if I have to say. All I have to do for the water softener is to write a painfully large check when the installers show up. I wish I could skip that "one thing".

If you have been reading my blogs for a while now, I am sure you are familiar with my mantra of "One thing at a time!"  When I started to feel overwhelmed, I kept saying that over and over. It worked. I could not make repairs myself like I would have pre-FTD, but I got it done. I must also add that the husband of one of our FTD'ers (they live 4 hours away) offered to drive up and help out. My FTD friends are probably the best, at least truest, friends I have ever had in my life.

Now that you are bored or thinking, "There she goes again, making something out to be much worse than it was", I will admit that pre-FTD, I would have handled it all without the blink of an eye. I would not have become frantic at all. It would have been just another day, except maybe an excuse to take a day off from work!

That is the thing about FTD which many caregivers cannot seem to understand. We are only capable of doing one thing at a time. For instance, trying to cook the next night... I had to remember I even had a One Pot and then where the heck it was. Then I had to realize I should rummage through the freezer for things I could put in the pot.  Then I had to go to the pantry to find something to make it saucy. Working the pot was trial and error. I somehow had it on pressure cook not intending to. When I tried to correct that, I had it turned off. I had to figure out how long to cook it. The instruction book did not specify how long to cook frozen meatballs, a packet of dry onion soup mix and a quart of beef broth and a few noodles thrown in. Eh, I did it though and didn't give up. We had a decent dinner as a bonus. All in all, it was probably at least 10 separate things I had to focus on to get that simple meal ready for the table.

Those without FTD, no matter how often we say that it doesn't work to give broad instructions. They still insist on saying things like, "wash your hands and then put the milk on the table." Each of those involves several activities. Going to the sink, turning on the water, finding the soap if we even remember we need soap and then drying the hands. By then we have probably forgotten what we were going to do next and will go sit down in our comfort chair. 

I will go as far as saying that I see this as almost a form of abuse. If the care partner knows we can only do one thing at a time and it needs to be in small of steps, why do they do it? What happens is the one with FTD becomes very frustrated because they know there is something they are supposed to do but don't want to ask because they are afraid they will be yelled at. The care partner is probably tired and when they see the milk is still in the refrigerator, they may even yell, "Where's the milk I asked you to put on the table?" and worse, "Can't you do anything right?"

The answer to that last question is "No, I can't." Honestly, we can't and we know we can't. It is not that we don't want to or that we are lazy or don't care. We just can't. Another part of this is that the FTDer probably already feels worthless and does not need that reinforced.

It takes at least two to make things work. Both parties must remember "one thing at a time." That goes for the care partners when they are faced with overwhelming tasks. When I was caring for my husband (who died in Nov. of Alz.), I kept a list of things I needed to. I would look at that list several (probably more) times a day to determine what was the most important to do. Then, if the important ones were done, I would only work on the others as I had the energy.  Like everyone with FTD, I only have a limited amount of energy. If I go beyond that limit, I am unable to do much at all for a couple days at the minimum. 

I greatly admire the FTD spouses out there who have to juggle, caring for their loved one, working at a job, household chores and raising children. I don't know how they do it.  I do have help in my home a few days and nights. I first hired her so she could be here when I needed to those needed things like grocery shopping. She started staying nights to help with the nighttime situations toward the end of my husband's life so I could sleep. Her main responsibilities are to calm me down when I need to, to focus me back on what I was doing when I get distracted and keep track of my schedule. She does do some light housework as well. Without her, I would most likely be in assisted living. I guess she is my equivalent of an FTD spouse. Thankfully, she has enough patience and stubbornness when each is needed.

I know I have written on this subject a few times, at least, previously. It is so important, though, I think it bears repeating for those who have not been reading my blogs for long. It also is something we often forget. I know I did when I was caring for my husband. When you are exhausted beyond belief, it is difficult to immediately think to give them only a small thing at a time to focus on.

Without "One Thing At A Time", it would have gotten very ugly here on Monday. I was still incredibly exhausted but I did it. I was also proud that I did.

Saturday, January 11, 2020

We Are Not Children

I don't often have difficulty coming up with subjects to focus my blog on each week. Ideas pop up all the time in my life and in others relaying frustrations or questions and observations. Today, in one of the online support groups, a person with FTD asked about caregivers and others treating those of us with FTD as though we are children.

This has been one of my pet peeves since being diagnosed. I often get frustrated enough to say, "I do have dementia, I do not have stupid!" Most of the time the other person does not grasp what I am saying but I'm pretty darned sure they get the message from the tone of my voice.

When I replied to the gentleman's question this morning about family members, caregivers and others treating someone with FTD as though they were a child, it hit home.

I answered his question that he was certainly not alone in this frustration as did many others with FTD. I also told about how I sometimes judge people by whether they treat me like a child or the intelligent person I still am.  If I am meeting with someone I have not met before' yet considering doing business with them, I use this as a litmus test. I tell them that I have FTD, a rare disease that causes dementia. I watch their face, especially their eyes, to see what changes come across them.  The reactions vary.

Many times, just by watching their face while I tell them, I can immediately tell whether this bothers them or not.  The next part of my test is whether they start speaking to me differently than before I mentioned the "D" word. Unfortunately, quite often, their reaction changes their entire demeanor. This is when they start speaking me like you would a child.

How do they act differently? The start speaking more slowly and, for some reason, louder. I have not heard of very many cases of dementia  causing deafness, yet they do. They start using smaller words or defining words to me as though I could not possibly understand what they are saying.  Or, if there is someone with me, they will start addressing them instead. It could be comical if it didn't anger me so much. These are people I do not do business with. I have walked out on a financial advisor, a social worker and sales people.

One of the most interesting things, at least to me, about those with FTD is that a majority of them are above average intelligence. Many have held high-power jobs and highly responsible positions. We do not all of a sudden lose that intelligence with FTD. We may struggle for words or ask someone to repeat what they are saying. I swear sometimes if I just blink, I miss the entire sentence someone is saying. I find this is because I can not instantly jump back into what is being said after being distracted, not that I am stupid. It is simply having a shorter attention span than I used to have. 

Are those with FTD like children?  I say "Hell, no!"  We may exhibit some childish behaviors but that does not automatically reduce us to the level of a child. What am I calling childish behaviors? Having no filter between brain and mouth. We think it, we say it. Also, we often display dis-inhibition. Just as a child may walk into a room in their underwear, someone with FTD may not stop to realize they are not dressed appropriately for company.

Sometimes, it will seem as though we experience meltdowns and appear to be throwing temper tantrums. Maybe some do, but the majority of us do this when we are totally frustrated. It can be from not being able to do something we used to, being criticized or made to feel inferior/worthless or not being able to express what we want to say. 

When the person has Aphasia, many seem to dismiss their value. It is as though they think if you can't talk, think of words or use incorrect words, that you can't think either. 

I clearly remembering a time when a caregiver for someone else said, while dressing the one with dementia, "Oh, isn't she just so cute? It's just like dressing a doll." Excuse me? She is not a doll. She has a brain, has preferences and feelings.

One thing I beg of caregivers and medical providers. Please remember that we can still hear, understand and think. When we are talked down to, it is demeaning and defeating. In my case, you would be taking cover because I would start lecturing quite loudly. When my daughter was quite young and she was waiting and being ignored, she would say "I'm still here!" That is the way I feel when someone is speaking to my caregiver or family member instead of talking directly to me. Before my husband succumbed to Alzheimer's Disease, when home care workers would start talking to me, usually over his bed, I would say that he could probably answer that better than I could.

Give us that chance to speak or the time we need to gather our thoughts. Then, if we still cannot express ourselves, that is when someone else may jump in with prompts or help with words. I acknowledge that we sometimes act childlike but that does not require anyone to respond as though we are children.

Again, I will use an example of my daughter. I never spoke "baby talk" to her, at least not after she was a month or so old. She may have been doing childish things, which was really her job, but I did not respond childishly. I spoke to her all the time. If I was making a bed, I would talk about making a bed. That could explain why her first words were "kitty cat" and "Daddy go to work?" Now, during the teenage years, I will admit to responding to her in kind which led to a lot of screaming matches until I realized that was just making things worse. Once I stopped screaming, so did she. 

Like with my daughter, perhaps if you respond to the FTD'er calmly and softly, they just might calm down. If nothing else, it will ease the strain on your vocal cords. I realize it may not always work, you may have to try redirection or distraction, but my days and nights were much nicer when I was speaking calmly to my husband, not adding to his frustration or causing a meltdown. I can also honestly say that I never treated him like a child, not once, even when he was doing childlike things. 

Sunday, January 5, 2020

I Am Back

When I logged on this afternoon to attempt to write, I was shocked that it had already been 3 months since I have posted. In addition to that, the 3 months before that were pretty sporadic. Somehow, it made me feel extremely tired.

The last 6 months, especially the last 3 have been a challenge. I hope I met that challenge well. I certainly hit it head on. I do believe the last 6 months have aged me about 3 years. I see it every time I look in the mirror.

If you are new to my blogs, I should explain that after my being diagnosed in 2011 with FTD, my husband was diagnosed about 3 years ago with dementia, most likely Alzheimer's. I had promised him that, as long as it was at all possible, I would keep him at home and care for him. Proud to say, I kept that promise. Mike died on November 18, 2019, right here at home. I did allow I friend to help out on a part time basis to help me and relied on my sister to help as well. Since I needed help as well due to FTD, it was the only way I could do it.

I am not going to pretend it was all smooth sailing. It wasn't. 

If you do much reading on the blogs and support groups devoted to FTD, you will think like I did. Hospice and palliative care is out there and you just have to ask for it. It sounded too good to be true and it was. When I was finally feeling that I could not do it without more help, I took him to our doctor.  She kindly made a request for a hospice evaluation. They responded on a timely basis, but he was not accepted into the program.

Medicare controls the hospice regulations and they have become stricter as of late. Their medical director must be able to, without doubt, believe the patient will not live beyond six months. Unfortunately, just as FTD patients can, Alzheimer's patients can also put on the charm when strangers are around. He not only cooperated, he joked and flirted with the hospice personnel. There are a couple private hospice companies in the area and I was told they might accept him, but I had not heard the best things about them. Also, would I really want him to have care from someone who was willing to skirt the rules?

I asked about palliative care. I had been reading so much about that on the FTD support groups. They looked at me as though I had horns. They "explained" to me that palliative care is what the hospice provides, keeping the patient comfortable through to the end. When I explained what I had been told and what I had been reading, it was two separate things and asked where I could get palliative care. They did not know, but did contact our doctor and suggested she request home nursing to come out. They did and provided a physical therapist, an occupational therapist and a home health aide 2-3 times a week.  This did not accomplish much except entertaining him but he did allow the aide to shower him, something he never allowed me to do, only sponge bathes.

After 3 weeks, home nursing called our doctor and suggested a second evaluation by hospice. We were fortunate that the same nurse practitioner came for that visit. She was taken aback by how much he had deteriorated in that time. For instance, his calf measurement was 3 centimeters smaller. They immediately accepted him this time.

They came armed with equipment, an air mattress (I had already obtained a donated hospital bed) to prevent bed sores and for more comfort as well as every supply I could imagine, even his Boost nutritional supplements and adult briefs. BUT, they only could come three times a week and would only be there for less than 2 hours. I also could not leave during that time. 

By this time, I was beyond exhausted. I am not sure what you would label that as, but whatever it is, that was me! My friend who had been helping us out for the past year started spending more time and would alternate night duties because he did not sleep more than an hour at a time. I don't know if I could have kept him at home if I did not have her help.

After just 3 weeks, he was put on daily visits. That was a Godsend, mainly for the health aide coming every day. She would shower or give him a good sponge bath, help me change his bed and help me coax him to eat or drink. After just one week of this, I started sleeping on the floor next to his bed. The hospital bed I had been given came with a mattress and since his bed now had that wonderful air mattress, I put the original one on the floor and that is where I slept, always holding his hand or arm.

He slept a lot better because when he would get restless, I would assure him I was right there. My daughter came home and spent a few days with him during this time but finally returned home because she firmly believed he was hanging on so she would not see him die. The second night she was gone, I became very uncomfortable lying on the floor, got up and went into my room to lie down for a short bit. This is when he chose to leave us.

I so regret leaving the room. After I was out of his room for about 15 minutes, my helper/friend went in to check on him and realized he was dying. She waited until she was sure he was gone, then came and woke me. Even though I know he chose to not give up while I was with me, that haunts me. I cannot understand why she waited, but I have forgiven her. 

I immediately called hospice and they were there within 30 minutes to declare him dead. (It was about  a.m.) That was the last time I saw or heard from anyone from hospice. Something that brought me great peace was that, while we were waiting for the nurse to arrive, I gave him one last sponge bath. His final two days, he was feverish and perspiring heavy. Being able to do that, just the two of us in that room, is now a fond memory.

I am guessing that in more populated areas than this one have more options for palliative/hospice care, but all those things the "experts" claimed could be provided for us just were not available.  Don't get me wrong, I would recommend them to anyone and everyone, they were wonderful. I was just disappointed that everything I had heard about available care just did not exist.

So, it has been two months since his death occurred. Christmas holidays were difficult yet, in other ways, very special for my daughter and me. 

How did I do it? How did I manage to care for him at home? It was not always easy. In fact, some days were downright difficult. How I got through it was by relying on my common sense. I have no medical training but I have a lot of common sense. If he was fussing or trying to get out of bed, I would assess what was going on and come up with ways to keep him comfortable. I wrapped sheets of dense foam around the bed rails so he would stop getting his feet stuck and injuring himself. If he didn't want to eat, I did not force him. I would encourage him and make things like a Boost milkshake that he would most often drink. I constantly encouraged liquids. I sang to him. Now with that, I pity him because since FTD, I cannot carry a tune at all. He was not a practicing Christian, but I would pray with him. That seemed to soothe him. I talked to him nearly all the time. I read to him... chapters of the book he wrote and had published about his brother and growing up in simpler times.

Above all, I kept assuring myself that it was okay if I was not perfect. If I judged incorrectly and did something wrong, I kept telling myself that the worst day at home with me making a mistake or two was better than any day in the nursing home. There was no way this man was going to die alone.

As I said it aged me. When I look in the mirror I am shocked some days. Where did those wrinkles come from anyway? I am sure it shortened the time I have left because I sure didn't take care of myself as well as I should have. But, hey, I have FTD and it's going to kill me. What better way to spend a couple years of it. After 47 years of marriage, I was willing to push myself as far as I could to care for him.

That is our story. That is why I have not had the energy or time to blog for 3 months. I am back though and my New Year's resolution was to get back into writing my blog, helping others with FTD and shouting out to the world about this horrid disease. Thank you for your patience and for all the encouraging email. I love all of you.

Saturday, October 19, 2019

The Ultimate Conundrum

co·nun·drum
/kəˈnəndrəm/
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.

Saturday, October 12, 2019

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.

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.