Every unwanted movement in my hand or arm, every twitch that I cannot anticipate or arrest, is a reminder that even in the domain of my own being, I am not calling the shots.
~Michael J. Fox
Thank you to Linda Baie for sharing this TIWYK poem about her beloved late husband Arvie.
What I Know
We knew it would come,
the loss of how to make toast,
how to make his famous fried egg sandwiches,
how to tie his shoes.
If you want to know what I know,
dementia’s different for everyone.
Some get angry, but my husband did not.
He stayed his brave, sweet self,
allowed help when he needed it,
kept going when he knew
each day he might lose something else.
What do you do? Learn what might help.
Enjoy being together,
playing games,
doing puzzles,
taking a final trip with the grandson,
who helps navigate when Grandpa cannot.
Keep hugging,
loving,
when you can’t play anymore.
Find the best doctors,
join a support group,
make sure family comes often.
Patience for the everyday,
for him and for yourself.
Then more patience
to share with him
when he’s lost his.
That’s what I know.
Linda Baie ©
**************
- The organization that helped Linda and Arvie the most was The Parkinson Association of the Rockies.
- The Alzheimer's Association has information about Parkinson's Dementia. They also have various information for caregivers.
11 comments:
Oh, thank you so much for this Linda. Thank you for sharing your experience and your wisdom and grace, your lovely appreciation for life and your words.
You're welcome, Liz, and thank you. Thanks also, Tabatha, for creating this series of those who willing to share their knowledge, perhaps helping someone out there! Wishing you some goodness in your day today!
Oh, Linda. This is so wonderful and so heartbreaking. Thank you for sharing and Tabatha, for giving this series a space.
Patience and keep hugging. Just the right advice.
Oh Linda, this is a beautiful, heartbreaking love story. Thank you for sharing and for Tabatha for creating the space.
Beyond beautiful, Linda. Tears came to my eyes as I read your poem - a true testament to enduring power of true love. Thank you. :)
Thank you Linda, for writing, and Tabatha, for sharing this beautiful poem. As I help care for my mother with Alzheimers, I, too, am learning much about patience. My main complaint is that these days I'm having to make a choice between head and heart—social distancing vs. human touch. It makes me sad that hugging might be the best medicine of all and I'm not able to give it to her.
Thank you everyone for your heartfelt comments, and Michelle, I am sorry that you're caught between two very real needs. I hope that hugs will be happening soon and in the meantime, hoping soothing words, perhaps singing, will be a worthy substitute. Thanks again, Tabatha, for this series and allowing me to share.
Dear Linda, This tugs my heart so. At the same time, my heart-tug isn't all about your huge loss, but about your generous gift of wisdom to us, having weathered this long-lasting daily gray cloud. Wish I could sit down to tea & hugs with you.
And Appreciations dear Tabatha, for creating these Things I Wish You Knew shelter.
xo - Jan
Didn't see Linda's poem before, glad I caught it now. A moving and sensitive poem. I know the condition well unfortunately, for my father had Parkinson's and he also like Linda's husband stayed sweet till the end. Thanks Linda, and thanks Tabatha for sharing Linda's poignant poem.
So beautiful, Linda. Thank you for your example of love. <3
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