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.