Having FTD just plain sucks. Sorry for the in-your-face verbage, but that is the only way I can explain it so that people just might understand. It seems like every day brings new frustrations along with it. So even though we celebrate each new day, some days it just becomes hard to do.
Having FTD means that you must rely on others for nearly everything. I need help grocery shopping, going to the bank or post office, doctor and dentist appointments. I have been extremely fortunate that when my husband was diagnosed with Alzheimer's and could no longer function in the capacity of caregiver, my sister stepped up big time. Even though she lives about fifteen miles away, she drives me where I need to go, sometimes three or more times a week. She has done this every time with a smile and a reassurance of how happy she is that she can help me. Everyone should be as lucky as to have someone like her.
Unfortunately, two weeks ago, she fell and shattered her shoulder. The stress of not being able to be by her side while she was in the hospital for 10 days was astronomical. Fortunately, my awesome brother in law not only called two or three times a day with updates, he also brought her here to visit with me yesterday.
The worst part, for her and for me, is that she cannot drive for 6-8 weeks. What do I do now? Well, I am getting reacquainted with our county's Senior Services Transport Van. They are very inexpensive, but the times are quite restrictive. For instance, I could get a van to take me to my scheduled dentist appointment next week at 2:30. Unfortunately, they would not be able to bring me home because the last van leaves that part of the county at 3:00. I rescheduled for next month, but since my appointment is at 1:20, they cannot guarantee I will be there in time unless I take the 12:00 van. It makes it difficult for someone with FTD to plan life around their van schedule. It is the same for every appointment I have. I am guessing I will get to know the van drivers pretty darned well.
I am thankful for the service though and don't mean to be whining about it. Ten days or so ago, I was able to find a friend to drive me to the grocery store. This week, no such luck, so I will be taking the senior van. Should be interesting because grocery shopping with someone along with me is a challenge in itself!
I am getting better at asking for help. I called several family members and friends trying to find someone to drive me 90 miles to my eye specialist this week for a necessary appointment. I finally found my step-niece to drive me, which is quite awesome of her to be willing to do. Out of everyone else I tried, either they couldn't do it, or they said they probably could, but when I contacted them again to pin it down, surprise... can't do it anymore.
Being the caregiver for my husband who has Alzheimer's Disease is an extreme challenge for my with the limitations FTD pours down on me. With the transportation issues, along with the constant concern for my sister and regret that I can not help her despite how much she helps me, and the 24/7 care of my husband, I am stretched beyond my limits.
These are the kind of things that so many caregivers fail to realize. Many are not able to recognize how difficult and frustrating it is for those of us with FTD to tackle every little thing all day and all night long. A huge number of them see us sitting around doing nothing and adding to their workload constantly. Yes, many of us do. However, it is not because we are lazy or do not care. We do have apathy, but the realization that we are seen as an imposition is heart breaking. We don't do the things we used to be able to do because we don't want to. We don't do them because, first of all, trying to get through a day with FTD is exhausting. The other factor is that we may not remember or understand how to do those things. It breaks my heart when I find yet another thing I can no longer do. I am sure it is the same for others with FTD as well.
Let's compare my sister's situation to mine. She has a huge sling/brace apparatus that she must wear 24/7 for the next six weeks. Anyone who looks at her immediately realizes that she has limitations as to what she can do. People automatically hold doors for her and offer to bring in meals, etc. For someone with FTD, people cannot see what our limitations are and jump to the conclusion that we are lazy or just don't care enough to do things anymore.
People can often recognize those with Alzheimer's Disease because their symptoms are at times visible to those observant enough. With FTD our symptoms are often hidden. Add in the fact that we can often get "up" enough to seem normal to others. I firmly believe that is due to pure adrenaline. The adrenaline allows us to function at a higher level than normal. We pay for it though. After expending the energy to be as normal as we can, the adrenaline crashes and we suffer for at least a day, sometimes longer. We can be totally exhausted, irritable and difficult to get along with. It is pure and total fatigue, physical and mental.
This is difficult for others to understand. I understand that for strangers and those with limited experience with FTD. I do expect that our care partners and loved ones should understand and compensate accordingly. I do realize how exhausting caregiving can be. I am doing it now for my husband and have been caregiver for previous family members with dementia, now thought to be FTD.
I will actually run the risk of offending caregivers here, because today I am exhausted enough and have enough apathy that I just don't care. I become resentful when I hear or read caregivers complaining about how exhausted they are and how much they need to have a respite from their care giving role. Don't get me wrong now, I am not saying they do not need or deserve a break. What I am trying to say is that I resent that none of us with FTD can have a respite from the disease, not ever. Trust me, we are just as sick and tired and exhausted from dealing with the disease as any caregiver can possibly be.
I feel resentful, and yes, probably jealous when I hear about their wonderful respite adventures. I am not proud of this at all, it is just the way it is.
While I am on this subject, I am going to really take the risk of offending another group of people. I am jealous and resentful every time I see or read a story about the brave FTDers and their amazing caregivers who travel, attend banquets, dine at fancy restaurants, visit exotic places as well as museums, the theater or more despite their illness. I hate that I feel that way, but I cannot deny that I do. Most of the FTD'ers that I know are not able to do things like that. Not only do we not have the energy or ability to do them, but FTD drains all of our financial resources to the point that we can't. The only travel I do, as well as a lot of others, is to the annual AFTD Education Conference.
I would never suggest that these other FTD'ers should not do and enjoy everything they still can. It goes without saying, as far as I am concerned, that everyone of us should do everything within our resources to enjoy the life we have left. Those who are able to do it on a grander scale than I can, I actually applaud you and encourage you to keep on doing it all.
The point that I am trying, maybe not so well, to make is that we need to hear about the others. The magazine articles, films and broadcasts need to include the ones who are struggling... the ones who can no longer afford to go to the doctor or to have the tests they need. Either they no longer have insurance or the co-pays are too much for the budget. This would include those who are just enough above the poverty level that they do not qualify for Medicaid or any other assistance programs.
The ones who can still do, and afford to do, these wonderful things certainly should be celebrated and honored. Though sometimes I think it is the ones who have the least yet manage to cope with FTD (or any other disease) are the ones to be honored and applauded. The ones who struggle to be able to put food on the table and still pay for their medications. are heroes to me.
Now, before you accuse me of feeling sorry for myself or throwing stones, I am in between my two examples. I am not in a financial position to travel, mostly because I would also have to hire someone to come in and stay with my husband, but we are financially stable. We are living comfortably on our Social Security and retirement savings. So it is not just sour grapes. I just still have enough empathy left in me that I worry about those who are not living comfortably.
This blog is an excellent example of how the frustrations and exhaustion of FTD can affect someone. Both are a drain on me and, obviously, sometimes bring me to the point of resentment and anger. Again, I am not casting stones at anyone, not implying that those of us with FTD are better than our care givers nor that anyone should feel guilty about what they can or cannot do. I am merely expressing the frustrations that I am feeling right now, and nearly all the time. We are all in the same boat, every one of us... every one with the disease, every caregiver and everyone who loves them.
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