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.