Bouquets for the caregivers,
Wherever they may be.
So tireless and devoted,
Often others do not see.
Sharing love with those who try,
But can’t be understood.
Giving their warm hugs and hands,
I so wish everyone would.
But I’m not giving up.
I continue to pull out the weeds of the last decade of caregiving for my family members with memory loss.
This morning with the falling rain, I reflected back on a few of the thornier broad leaf moments overshadowing me the last few years:
-The call from the neuro-psych to pick up my PhD spouse just five minutes into a two hour appointment. “There’s no memory left to test,” I was told.
-The instant reality check when I realized my husband’s dementia had far exceeded Mom’s during one of her care conferences.
-Discovering Mom had left Dad (with his Alzheimer’s) alone overnight after falling down a flight of stairs. Mom’s own dementia had finally surpassed her judgment.
-Watching some friends fade away when they couldn’t cope seeing my middle aged husband wilt deeper into dementia.
Maybe they thought they’d catch it.
Yet I realize now I’ve been blessed with an iPad and memories as a form of healing, and possibly as tools to support those going through something similar.
Perhaps even as a way to educate those who are not.
I know I’m also fortunate to have my own health as I begin to volunteer as a companion to caregivers who are overwhelmed and often alone.
And there are lots of them.
I know. I was one of them.
With the rains now subsiding, I’ll continue climbing up my hill to gather that spray of bountiful joy.
And to any caregiver reading this, I’m planning on dedicating my bouquet of sunshine especially to you.
So few deserve it more.
There’s a middle school picture of me still hanging up in a busy brick building in a nearby town.
There I am.
‘Old pizza face’.
But at least my eyes are open for once.
I’m probably about thirteen.
And not looking happy at all about having my picture taken.
I’m wearing a long white polyester robe.
And it’s confirmation time.
Though not quite fitting the part of an angel in the shot, at least I was faking it pretty good.
I’ll be walking right past that fading portrait in my parents’ old church soon. I’ll be meeting with the coordinator of a group that helps caregivers, and those directly under their care.
It’s another one of my ’50 by 60′ bucket list items.
I’ve just offered to visit caregivers’ homes on Saturdays and spend time with their spouses or parents while they get a chance for some respite themselves.
Although the group has many opportunities, it’s the one way I can help right now while I’m still working.
This group acted as another set of valued eyes on my parents when they were still living. It’s now my turn to return the favor.
I expect to do my visiting loaded down with fresh flowers to brighten moods of caregivers.
And tactile puzzles and art projects to engage their loved ones.
I’ll also be sure to pack plenty of extra hugs in case they’re needed.
And I’m thinking they will be.
I hope I’ll make at least one small difference in each caregiver’s day as I stop by.
Though I expect I’ll be getting much more out of the experience then they will.
I’ll still never be an angel, but as I continue to age I’m happy my self absorption as a teen is now many decades behind me.
And that finally I smile a lot more in pictures, even knowing my eyes are probably closed yet again.
I was doing a lot of self talk in the car back then, as my husband no longer spoke due to his dementia.
“So here we go again cruising to New Hope, but there really is no hope,” I’d mutter under my breath during our long commutes in ice and snow.
New Hope is the town where his center was located.
With my hopelessness back then, I felt particularly guilty this week as an author inscribed a copy of her book for me about her own caregiving experiences while we visited.
I noticed she penned the words “to a fellow survivor” above her signature.
And she also drew a cheery heart.
Now to me the word ‘survivor’ has always represented strength and fortitude during, and after suffering.
Surely my PhD husband was the one who did the suffering while losing his ability to remember,
understand, and communicate.
Finally passing away the day after Christmas.
I was just a witness to it all, who tried to help.
Though I admit I wasn’t always as accepting and cheerful as I would have liked.
Today I decided to look up the definition of survivor on my iPad while reading at the beach below the Purple Martins.
On Merriam Webster’s website, I discovered their description included the words:
“To remain alive: to continue to live”.
Apparently the author is correct as I am continuing “to live”.
And I hope to keep doing so with gusto.
Content with my answer, I walked over to the shack by the birdhouses where the paddle boards are stored.
I picked up a brochure, then opened my ’50 by 60′ bucket list notebook and made another entry.
Item 39: Take a standup paddleboard lesson.
I hope I don’t fall in the water, but so what if I do?
Nobody’s perfect, you just keep giving life your best shot.
I’ll be the first to admit this decade has been far from my favorite. Overlapping responsibilities of caring for four generations simultaneously some years, while working full time can wear any girl down. Yet many days, I’ve been blessed with a beautiful gift. A surprise. And today was one of them.
With my morning mug of coffee, I read something my 24 year old daughter Nicole posted last night about her tumultuous teen years. She first moved to America and joined our family 12 years ago from Russia.
Becoming part of a new family and a new country isn’t easy. It becomes even harder when you make that change as an adolescent who didn’t start school in Russia until the third grade.
Nicole immediately found it challenging here dealing with peer pressure, while learning a new language. Dealing with parents again, after being in an orphanage for 6 years couldn’t have been simple for her either. And seeing my husband’s increasing memory loss only further complicated the other issues for her.
By the time Nicole settled deeper into the teen years, I was finding items under the mattress no parent wants to discover. There were nights of missed curfews, a couple of climbs out the bedroom window, and other memories that still make my hair gray just thinking about them.
Yet my daughter survived and has matured. She is a great mother to my little grandkids. And she’s developed into a strong, authentic writer in a language she’s only known for 12 years.
Last night as Nicole wrote about these years, she thanked her Dad and I, as well as a few others who’ve helped her along the way.
“Without you guys, I would have been one lost soul” she typed.
But I’m thinking I would have been one lost soul without Nicole.
I like to sit in this quiet, shady little park in a nearby town. It’s full of towering oaks, ferns, and hostas that cool me down on a steamy summer day. Sometimes I take my bills, and write out a few checks. Then I drop them in the mailbox at the old 1930s post office across the street. It makes paying my husband’s healthcare bills a little less painful. That’s a good thing.
I was lucky. Dad was a great guy. Smart, funny, loving and a good provider. I couldn’t have asked for anything more. If he were still here, I think he’d say he had a good life in spite of his years with Alzheimer’s.
I’ll be remembering Dad this Father’s Day while:
1) Buying a cake with a striped tie plastic decoration on top, just like we always gave Dad from the
bakery. (But this year I’ll bring it to my husband’s place to share with the other fathers with dementia).
2) Eating a grilled hamburger and potato salad, Dad’s favorite Father’s Day meal, even
though he always ended up doing the grilling.
3) Checking out a book of O’Henry short stories from the library. I just read in Dad’s letters
sent home during World War II, how much he loved the author. I always did, too.
4) Framing a brilliant cartoon that Dad drew during the war, and hanging it on the wall.
5) Raising a cone, full of Dad’s favorite chocolate chip ice cream, and saying a toast to one
very special father.