Posted by Kathleen Pooler/@kathypooler
“we argue again
over nothing important
neither understands
we talk of different pieces
of the same scary puzzle”
Poems That Come To Mind: For those who love someone with dementia
Linda E. Austin, Moonbridge Publications, 2012
Alzheimer’s disease (AD) is the most common form of dementia. The cause and progression of AD are not well-understood and the symptoms are degenerative. Current treatments are limited and only treat the symptoms. The Alzheimer sufferer relies on others for assistance and the disease is known for placing a great burden on caregivers.
My dear friend, Louise, knows first-hand what Alzheimer’s Dementia looks like. Tony,her husband of 48 years was diagnosed five years ago. She started noticing signs of decline five years before his diagnosis was confirmed
Louise is an inspiration to me. I told her she inspired me so much that I would dedicate a blog post to her.
I feel certain she will be an inspiration to anyone who has to face the devastating impact of Alzheimer’s/Dementia on a loved one.
She has a very positive attitude and has simply made up her mind to be happy in her life and make the most of what life has dealt her.
Here she is posing with Audrey Hepburn at the wax museum in London a few years ago.
She tries to maintain a positive attitude as you will see in this recent update:
A new first for me: To get Tony to actually WASH when in the shower, today I got in with him. What an experience! Don’t worry, this isn’t x-rated. I tried to stand behind him and wash his head and ears and back, with lots of yelling on his part and cursing. It wasn’t easy to manage the water temperature this way and though the water never gets really hot, it can get too cool fast. However I managed with a lot of struggle to do a fairly good job and get him rinsed.
Then there was the cutting of the toe nails, finger nails, cleaning hair out of ears and nose and clipping his eyebrows and shaving off the werewolf hair on his neck. After helping him get dressed, I put toothpaste on his toothbrush and instructedhim to clean his teeth really good. Then I made the mistake of thinking he could really DO this. When I came back he was putting the toothpaste onto his face with the toothbrush, like for shaving. So, perhaps another new job is here for me.
This personal care business is something I really wish didn’t need to be done by me. It takes lots of time and energy and being I have so much to do all the time, I barely have an opportunity to take care of myself. I’m going to look into having someone come and do the personal hygiene business and see how that will work.
He still can feed himself though forgets how to use the utensils. We went out to eat the other day and this is rather frustrating so this is another thing we’ll have to give up soon.
I don’t want to think of a nursing home yet, as he really knows people and cares about them. TONY is still in there. It would be like abandoning him if I put him away someplace, and he’d always been a good husband and father and community person, so this doesn’t seem like the thing to do at this point.
I’m also thinking of bringing him to a day-program perhaps once a week for a few hours to try it out. It would be good for him to socialize, even though he really can’t talk, and be with other people besides me, and it would be good for me to have a few hours to myself, to focus on things that need to get done without interruptions, or to just “be” by myself for a bit.
That’s it for now. Life is challenging!
***
While having lunch with Louise before going to a show a few weeks ago, I wanted to share Linda Austin’s beautiful book, Poems That Come To Mind: For Those Who Love Someone With Dementia. Here are my reviews on Amazon and Goodreads.
While I admire Louise’s strength and positive attitude in the face of her husband’s cognitive decline, I can’t help but feel the pain and longing she must feel to have him back again. I felt the need to reach out and offer Linda’s poems to her.
When I read her the poems, I’d look up to see her nodding her head in recognition. For some reason , I felt consoled. Maybe it was the realization that Louise could feel she was not alone.
I feel the loss of the relationship we used to share with them as a couple. I can’t even imagine how Louise must feel.
Reading Linda’s poems was a vivid reminder to me of how we can impact others in a healing way through our words.
With a smile on her face, she thanked me and we went on to see the show.
***
Awareness of what to expect and support for the resulting confusion and heartbreak caregivers experience are essential for anyone who has a loved one with Alzheimer’s Dementia.
Linda lists the following resources for families and caregivers:
Alzheimer’s Association: http://www.alz.org/ 24-hour Helpline: 1.800.272.3900
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
Creating Moments of Joy by Jolene Brackey
The Memory People Facebook group
How about you? Do you have a friend or family member with dementia?
If so, please share your story of how you have been able to cope or help those you love cope with this heart-wrenching diagnosis. I’d love to hear from you~
Linda has graciously offered to give away a copy of her book to a random commenter
On Thursday, April 18: Memoir Author Pat McKinzie-Lechault will discuss her newly-launched memoir Home Sweet Hardwood. A lucky commenter whose name will be selected in a random drawing will receive a free copy.