Readers write in to say ‘You’re not alone’
November 8, 2019
By: Mark Harvey
Email: mark.harvey@dshs.wa.gov
I tend to go on about caregivers and caregiving. I do that a lot because there are a lot of caregivers doing a lot of caregiving, whether we think of ourselves as “caregivers,” or not.
And there are getting to be more and more of us caregivers doing caregiving all the time; in fact, on an hourly basis – Literally. And if we cave in…Well, it won’t be pretty for anybody.
So I go on and on about this because what it really comes down to is keeping people alive, whether you’re giving the care or getting the care – Alive, day-by-day, getting through the day – Alive.
OK, so I go on and on, but no one ever has or ever will say it as well as folks who have walked the walk, or still are, so here’s what one reader has to say, with her permission; we’ll call her “Joanne,” because that’s her name:
“I read your column in the PDN faithfully. You are just so right on about so many things. Especially when you address the subject of caregivers. I was one of those for many years–without even knowing it.
My husband died of Alzheimer’s. Being a caregiver to an adult is akin to being the parent of a tiny, helpless infant, only in reverse. The baby cannot care for itself; talk, walk, or do anything. Then it starts to smile, cries, burbles a bit and gradually it grows into a real, happy independent person.
For the ill adult the process works backwards: slowly and almost imperceptibly he/she becomes more and more dependent on someone else as he/she gradually becomes less able to take care of himself: cannot dress himself, feed himself, walk, communicate, or do any of the things we automatically take for granted that adults do.
We are aware that our loved one can’t do these things but we refuse to accept it. Denial is so much easier. We think if we work hard enough and love hard enough we can keep things running along as they were. But they don’t. And we certainly don’t want our friends or family members to know how difficult things are–we don’t want to fail at our ‘job’ of giving loving care. I know, I’ve been there.
As a result we often don’t realize (or won’t even consider) what is happening to us until finally a doctor says, ‘You do realize your husband/wife, has Alzheimer’s?’
Of course we don’t. How could we? This couldn’t happen to us! But, sadly, it can and does.
That realization often comes about the same time the caregiver is totally exhausted, or perhaps discovers she/he has a heart condition or some other major devastating illness that will keep us from continuing our self-appointed tasks. That’s usually when the ill partner ends up in a nursing home or perhaps has to have full-time home care. And life as it always was is over for both partners.
I know, I’ve been there. I was the ‘lucky’ one–I was the caregiver. I had the heart condition.
We moved to ________ less than two years ago and my husband entered a nursing home. He had to have full-time care. I visited him daily, but his daily care was now being done very well by others. He quit walking and used a walker, then a wheelchair. He gradually quit talking or participating in any activities. He no longer knew my name. He did, however, brighten up and give me a big smile when he saw me, held my hand and kissed me goodbye when I left. These visits were so very sad. He was really gone.
It’s been nearly eight months since he died. I’m still working on regaining my health, thanks to good exercise and care. I am lucky to be here and have the loving family and friends I have, but I’m concerned about friends and others who are going through what I went through and are still in the denial stage. Being a caregiver is
not always a choice but a necessity, and caregivers also need help.
You offer much hope and good ideas for caregivers through your valuable columns. Thank you so very much for what you are doing to help so many others.”
Sad story? Or a wonderful story about a sad thing? Joanne is a “survivor” and, obviously, did what she needed to do and chose to do so, to me, it’s a wonderful story. Could “help” have helped her? I don’t know. Could “help” help you? I don’t know, but if you’re walking this walk, the word “help” is likely to get your attention, so one more time:
If you’re in east Jefferson County, call Jan Svien at 344-3013 or 800-801-0050. Port Angeles/Sequim? Call Fran Koski at 417-8549 or 800-801-0070. West End? Susie Brandelius, at 374-9496 or 888-571-6559.
Speaking of “help,” here’s another one from a been-there, done-that reader:
“I have a couple of books to recommend to you and your readers. The first is brand new: ‘A Bitter-Sweet Season: Caring for Our Aging Parents – And Ourselves,’ by Jane Gross. I wish I’d had this book when caring for my mother. Not only does Gross narrate her horrendous experiences. But also gives practical advice about dealing with agencies (ahem!) and getting the most from them.
The second book I read a few years ago, and mainly concerns Alzheimer’s patients in an institutional setting; surprisingly, it’s funny as well as sad. It’s called, ‘Dancing with Rose,’ and the author is Kessler (forgot the first name). I practically forced it on my mom’s wonderful caregiver, and she liked it, too.”
“Help” only helps if it helps and, sometimes, just knowing that you’re not alone, helps.
You’re not.