When I write a blog, I usually wait to post it until the next day so that I can do one more edit. I did that yesterday and this morning, I edited it right out of there. I was writing it from the prospective of a caregiver. This morning I realized that mostly all of us already know everything I had written. The caregiver role sucks, nearly as much as having the disease sucks. Especially when you are doing both.
Do you remember the book and movie The Perfect Storm? I don't remember the details of how three weather events collided and caused this horrible storm which was misnamed as the "perfect" storm. I only remember how horrific it became.
I realized that I am a perfect storm. The combination of my bvFTD, my role as caregiver for my husband with Alzheimer's Disease and, finally, my constant pain from bilateral Occipital Neuralgia all created it. I say it is a perfect storm because it has turned me into a horrible terror. Actually, I would say a royal b*tch, but that just seems rude, although a perfect description.
My patience level is about non-existent and what little I have is devoted to caring for my husband. In actuality, for some reason, I have been blessed lately with a lot more patience and understanding with my husband. He has been so confused lately about whether this is our house and if we are allowed to live here and if he is married to me. He keeps holding his wedding ring up to mine and asking me if that means we are married and that we can continue to be married. When I realize he is confused about simple things like this, it is no wonder he is confused by the remote control, folding his towel and so much more. It is a mixed blessing when, after hearing that we can remain married, he asks how he gets rid of the other three women he is married so he can keep me as his wife as he likes me best. It warms my heart all the while it saddens me that he is so confused.
I do seem to need all my stores of patience and energy for him and there is nothing left for anything or anyone else. I have had no tolerance for other people or anything that happens out of the ordinary day. It is a wonder that anyone wants to deal with me at all. At least I recognize what I am doing and find myself apologizing quite often, but it is a difficult thing for others to accept.
Very few people, except for those of us with the disease, can understand how difficult our lives now are. It is so difficult to accomplish much of anything because it takes our total focus on every little thing as we go about every day life. Often, we cannot even see to the end of a single small task, we have to take it one tiny part of the task at a time or we would not be able to do anything at all.
Caregiving is certainly extremely difficult as well. You have to keep the person with FTD in mind with everything you do. Going about what used to be simple chores and errands are compounded in difficulty when you have to worry about someone else's safety and comfort. It can be totally exhausting to get through some days.
Chronic pain is another thing that many people deal with everyday. It takes a huge toll on your body and your brain. It makes us have to overcompensate constantly to try to block out the pain and continue to allow us to function. Many, many times, it is just impossible to do this and trying to push through is simply self-defeating. It is exhausting, yes, but at least for me, it is also infuriating at this time when I need more energy and concentration to deal with my disease as well as my husband's. All too often, I get to the point when the excruciating pain seems to block out all other brain function. Neither the brain nor the body cooperate when it reaches that point because both are exhausted. Fortunately, it doesn't reach this extreme for me until 5 or 6:00 in the evening so I do continue to be able to push through the day until then.
Just as it is frustrating that seemingly no one else can understand the toll that FTD takes on us and limits everything we can do, the chronic pain does the same thing. With the exhaustion and brain fog of chronic pain it becomes difficult to exist through the day. The most unfortunate part is that no one else can see it.
When I snap out rude words or roll my eyes at something I perceive to be wrong or a waste of time, I come across as being a rude, obnoxious b*tch. After the fact, I often recognize that I said inappropriate things and often apologize to those I feel I may have offended. Only a few are able to understand and forgive. Those would be the people who know that this is not my normal self and those who experience similar reactions due to the things they are coping with.
FTD, caregiver exhaustion and chronic pain don't always show on people's faces. They are also things that I, and I believe others experiencing it, do not talk about because they know two things: most of us are busy dealing with our own crap and/or they wouldn't know what to do anyway. Add in the ones who think you are faking, are trying to get attention or, God forbid, you are "just depressed" and you give up trying.
I don't think it is the responsibility of others to try to figure out what I am dealing with in order to understand my behavior. Anyone dealing with any aspect of FTD has their own set of circumstances to cope with to be worrying about mine. I do wish, though, that people would notice the dark circles under my eyes, recognize the fake smiles I have on my face and the way my head will jerk forward from shooting pain that feels like an electrified nail is being driven into my head.
If I have offended any one of you, I do sincerely apologize and beg you to understand that it is not the "real" me you are witnessing. Hopefully the doctors will soon find some way to relieve the Occipital Neuralgia. Just eliminating that one part of my perfect storm will hopefully bring me back to a better and kinder state of mind.
As I have often said, I do not know which role is worse, that of someone with dementia, or someone who is caring for someone with dementia. They each bring many different frustrations but in experiencing both roles, I really can not say which is worse. They both just plain suck, especially when you are doing both while dealing with this horrible chronic pain.
The neurologist told me that only 3 in 100,000 people experience the type of occipital neuralgia I am have. Add in the slim odds of developing FTD and it is no wonder I cannot win the lottery. All my chances of beating the odds were used up with my health issues. Then again, they tell me I need to remember to buy a ticket before I can win.
No comments:
Post a Comment