An Alzheimer’s Association newsletter item this morning got my hackles up: “Caring for a person with Alzheimer’s means making adjustments.”
But then, we were having a bit of a grumpy morning anyway — my happy sunny boy – my 79-year-old going on 5 — seems to have disappeared under a cloud of ouches and suspicions.
The piece talked about research on and care for the caregiver and ended with the usual: “…Caregivers are often the casualties, the hidden victims, of Alzheimer’s disease. “No one sees the sacrifices they make,” she said. It is vital for caregivers to take good care of themselves, she added, by exercising, eating and sleeping properly, and getting respite care when needed.”
That’s the kind of sentence that used to make me rage, “WTF? How?”
Things have been slightly better lately but it doesn’t change the fact that my entire life – the last of my working years and the vaste majority of my energy – is being sacrificed on the alter of someone else’s disease. There is no alternative, and yes, I love the guy, BUT I don’t like it one bit.
It’s true – fate is like that – bad things happen to people all the time, but you know, sometimes I think those who suffer the devastating consequences of a relatively quick disease or accidental death are luckier …they do not have an unending, unceasing theft of their lives – they can grieve and slowly move on. I see it all the time among my widowed friends – they can make a lunch date – they can go on trips, they can take a course, they can walk around their house without someone asking insane questions all the time…..while my soul is being sucked slowly right out. By the time I am free of this 36-hour-day, I fear I will have no will or joy left to explore the rest of the world.
Fear of the future I think is the biggest debilitating problem in dealing with this disease. The gap between diagnosis and eventual death is so vague and varied we are all left spinning in the wind of fear.
But then the caregivers weighed in on the article, and I was somewhat comforted to find that the vast majority of them had the same reaction as I did. As in, what a useless bit of advice!
But one person’s words did offer some comfort.
“There are NO FAILURES when working with an AD person. You just do your best and endure.”
5 responses to “Token Words of Care for Caregivers (but we don’t buy them)”
Amen to your words and feelings Delores. I am right there with you if that is any comfort. I have seen a number of changes in Art the last couple weeks or so and not for the better so again I am grieving those changes and how to understand and respond to them.
Hope to see you at the luncheon tomorrow.
Take care and always remember you are not alone.
Yes – thank you – see you for lunch!
I hear you! looking forward to our “oasis” in an dry and thirsty and unpredictable land! hugs, Gbud
I know, from experience that it is very difficult to ask for help. Remember that nobody can read your mind. Tell people what you need. When I needed some help, a friend offered to cook dinner for me. I told her I could actually cook because I was moving; what was difficult, was standing in one place for a long period. Please, I asked, could you do the dishes and tidy the kitchen for me? Another time I asked someone to sit in the living room while I took a bath. I also arranged to have my hair washed and braided once a week. Its the little things that often make a big difference. I know injury is not the same as Altzheimers or dementia but I just wanted to mention how a little bit of kindness lifted my spirits. Just remember that nobody knows exactly what you need. You have to ask and you have to be clear.
A Quote from a book Im reading that really resonated with the the everyday reality of living with the loss of mind . The Cognitive decline with MS is a bit different , it is more an immediate decline in the non-linear mind -Anyhow here is the quote that woke me up a bit this week.
” Until tonight I’d actually thought we were making progress- that three steps forward , two steps backwards kind of advance -slow and frustrating , but still progress.The mind is so good at revising reality to suit our needs . I had reinvented the objectionable , the most indigestible pieces of my life into something just palatable enough to bear.I had taken ” __name_____”craziness and NORMALIZED it. ”
Oooh that is what we do some days , is just live in the moment and this becomes your new normal , sometimes I want the Angels to just come and pinch me and wake me, remind me that this is really not normal .. and they do , in some way I find the distance between the realities and normals .And I wake and know Im o.k. ..
This caring , its harder sometimes when we have that momentary wake up and at those times its so nice to have those visits , those lunches, those connections with others , to support our reality..I miss that .