First of all, today is Valentine's Day, so I wish all who read this a very happy Valentine's Day. If you are reading this after today, then I truly hope it was a happy day for you.
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
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