People often tell me they can’t believe how well I’m handling our situation. This never fails to shock me since I know the real me and the moments I want to run away and never return, but whenever I hear their comments, they cause me to reflect on how we deal with Lewy Body and life in general.
I think most of our ability to cope comes from a core belief in an attitude of gratitude that came from my mother. No matter how horrible a situation is, there is something hidden inside that we can be grateful for. It’s a mind game of sorts, but it works something like this:
Instead of thinking: “Oh no, he needs a walker.” Think: “Thank goodness there are walkers and wheelchairs to help us.”
Instead of thinking: “I can’t believe my husband needs diapers,” Think: “Can you imagine what this would have been like before there were disposable diapers?”
Instead of thinking: “Why did this happen to us?” Think: “Thankfully, we got our children raised before this hit.”
Instead of thinking: “We had to sell our dream home to move into a retirement community.” Think: “I’m so glad we had enough equity in our home to afford this CCRC.”
Instead of thinking: “I am so alone and lost,” Think: “I’m so glad I have the support group to talk to.”
Sometimes the game is tougher than others. Those days when he’s hallucinating and up all night…those are the days when the best I can find is that I’m glad I’m retired and don’t have to get up in the morning to work. But that thought really does make me grateful.
My mother buried two daughters, one at the age of 12 who was born with severe cerebral palsy, and another who died from breast cancer at the age of 49. Mom provided care for both and with the second; she was the fulltime caregiver for my father who had PD at the same time my sister was dying from cancer. She has spent 36 years of her life being a primary caregiver to someone, but she always smiled and laughed and acted like her life was totally normal. She and Dad traveled, went out to eat with friends, and attended church up until the last three weeks before he died.
I learned a lot from her. I learned that you must deal with the hand you’re given whether you want to or not. She always says, “You just do what you gotta do,” and she’s right. Our marriage picked up a third member named Lewy. He wasn’t welcomed, but he’s here and (at the risk of sounding like Scarlett O’Hara) as God as my witness, we’re going to continue living our life to the fullest possible despite Lewy’s unwelcomed arrival.
Next week we’re going to the beach for a week in a big house with all our kids and grandkids. Part of it will be exhausting, but part of it will be glorious. I’m going for the glorious part. We’ll have to pack his walker and wheel chair. I’ll do all the packing and driving and I’ll have to sleep on an air mattress on the floor of his room so I can help him find the bathroom at night. But right now, I feel so blessed. I get to spend a week, walking on the beach, listening to the surf, and playing with my grandchildren.
How lucky am I?
Thank you Lisa!
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