Where Is the Hope & Optimism in Alzheimer's Disease?
Hope is a precious thing. I think the opposite of hope is depression. Resignation. Stagnation. Status Quo. Dust and mothballs. Hope, by contrast, is full of possibilities. You have a “glimmer” of hope, not a “glimmer” of decline. Hope is shiny. Hope has wings. Hope rises! Without hope, I fall.
I have wondered, recently, where is the hope and optimism in Alzheimer’s disease? How would you define hope, recognize it, in a loved one with this diagnosis? Is it just a long, slow descent into obscurity, oblivion, and death to look forward to? There is no cure. Is a cure what I hope for? When someone is sick, you hope they feel better, that they get better.
The reality of my mom's condition
My mom isn’t going to get better. We had a really good day the other day. We laughed. We went shopping. We shared stories. Maybe I have this to look forward to! Hope started to rise…then some cold water of reality was poured on my elation. What business do I have to feel hope? It won’t stay like this. I have read others’ stories on this site. It can get worse.
That’s when I decided that I have to decide what hope means to me. There is reality, and there is the expectation. The bigger the gap between the two, the bigger the splat! What is my expectation? What is my goal? If I’m not clear on that or have the wrong goal, then I will be a stressed mess of unrealistic expectations, and no one wants to live on that hamster wheel!
Caring for family is hard, but I'm thankful
When I was a young working wife and mother, I came to the realization, that there is no superwoman-wonder mom. There are trade-offs and only 24 hours in a day, and fully a third of those really need to be sleeping. I need to reexamine my goals for things, like laundry. My goal can’t be for it to be done. As soon as you sort, wash, dry, fold, sort, put away a load, there is a laundry basket with more dirty clothes in it from the day! Unless we all become nudists (and no one wants that!), laundry will never be done.
Shopping and feeding my family is never done. They keep eating the stuff I get, and I have to get more! I love the look of a full refrigerator after a shopping trip! Sooo many options! Maybe I’ll have hummus! Maybe yogurt! Instead of the salty corners in the bottom of the tortilla bag that I lay a piece of cheese over on a paper plate, pop in the microwave, and call it a nacho!
So what does hope look like?
So what does hope look like when my mom has dementia? My work won’t be done with her for a while, hopefully. I hope she is happy…I hope she is safe…I hope she remembers as long as possible.
I hope she knows she is not alone. I hope we can connect, even if it’s to remind her to put her hearing aid in, and I can say, “I love you!” to test the new battery. Her pull-up may have leaked. She may have missed a dose of her meds, but was it because we had been painting the town? Some of the memories I want to preserve are mine! As a caregiver and as a daughter, I matter in this equation, too.
Mom won’t get better, but I hope for good days, whatever that looks like for me. I hope the good days last, and did I make the most of them? Perhaps gratitude and thankfulness are a second cousin to hope.
If I can be thankful, for the ones dirtying the laundry and eating all my food, and for the opportunity to clean and shop, then maybe I can have hope that I’m gaining more than I’m losing.
Are you feeling burnt out?