A friend of mine and I chatted for a while Saturday. She asked about Bob. I laughed and said, "He's silly."
My friend said, "Another friend of mine, she's taking care of a family member too, said she's lost her smile."
Okay, I'm going to circle back to a previous post called How Time Flies When Your Husband Has Dementia. The title is far from accurate. Many days of caregiving, I've felt I was slogging through wet concrete for the sameness of each day, the routine.
Anyway, back to my initial point, about losing one's smile. When my friend said this, I frowned because of how Bob and I are now. It's not what I would call fun but it's not constant heartache and drudgery. Not like it was caring for my mother who's dementia fell under Lewy Body. For all these eight years since she passed, I thought her dementia was Alzheimer's but after a simple search asking, "What is the difference between Alzheimer's and Lewy Body dementia," I realize my Mom had Lewy Body dementia.
Mom portrayed erratic and often angry behavior.
Bob never has.
Mom couldn't sleep throughout the night.
Bob mostly has.
Mom had forgotten my sister, her own daughter, by the end of her illness. Her long-term memory was sketchy and she had little (little, right, like none) short-term memory.
Bob has forgotten only a few people he has known and has retained much of his long-term memory.
I'm not sure how intact Bob's short-term memory is because of his Aphasia. If he could communicate to me, then I could gauge any short-term memory loss he's suffered.
But again, back to the loss of one's smile. With Mom, every day weighed on me. I cried a lot. I drank too much. I wished for her suffering to end. And why? Then mine would too. It was selfish and it's embarrassing to admit but I felt I was dying right along with her. I was dying emotionally and spiritually.
After eighteen months of her needing me every 15 to 30 minutes out of every day, I had developed significant post traumatic stress disorder. When she died, I started hiding. I couldn't go to the store or church. This lasted four months.
With Bob, he's never been outwardly aggressive, angry, or mean.
When I have earworms--those nagging songs that wake you in the middle of the night--like last night when I couldn't shake O Canada! I sing the earworms out of my head to Bob, usually when I'm catheterizing him. Don't ask why. I have no clue. Here ya go...
O Canada! Our home and native land!
True patriot love thou dost in us command.
We see thee rising fair, dear land,
The True North, strong and free;
And stand on guard, O Canada,
We stand on guard for thee.
(Refrain)
O Canada! O Canada!
O Canada! We stand on guard for thee.
There. I love Canada's national anthem. Now, you can have my earworm too.
But seriously, I wonder how Mom would have reacted had I been different, if I had gone into her studio singing and dancing the way I do with Bob. Albeit, it's different caring for a parent than a spouse, but if I'd been different--more understanding and loving--maybe Mom would have been different too. Who knows how anyone with a malfunctioning brain will react. And certainly not after eight years. Trust me, I'm not beating myself up about this. We do what we must to get through any hardship. I prayed a lot. I still do.
With Bob, it only seemed like a hardship when he was losing his abilities to care for himself. The toughest part, the transition between seeing him "normal" and "not normal," took me about a year-and-a-half. During that time, I cried a lot but we laughed too. I sang and danced just like I do now. For whatever reason, for the past five years, we've been in a flow.
That's where we are now. In this amazing place where we expect certain things of one another. Just like before. Sure, our marriage has changed. Yes. I mean, I take care of him as if he were a toddler. But there are these moments of thought when I imagine what his mother thought about him when he as two. She must have been so smitten, similar to the way I feel--I still feel about my Bob. He's so cute and sweet. Other people call him "adorable." That would be accurate. He's absolutely adorable. I cling to these thoughts, what will become my memories of Bob after he leaves me. Maybe that, too, is why I'm blogging about this subject again. I want to retain the memories.
It has been a journey to this point. I got my OTJ training with Mom. But the caring, in the word caregiver wasn't complete. I felt too put upon to be fun, to sing, and to smile.
People with dementia need your smile. They need physical contact--holding hands, kisses on the cheek, they need silliness whenever you can offer it up because their brain is becoming silly and silliness is what they can relate to.
Please don't lose your smile. If you can find it, pass it along to your loved one through an earworm or goofy dancing. Find it that way. I love having my smile back.
God bless you all.