I am Kim, and I have migraine disease. My mom is Jean, and she has Alzheimer’s disease. Together, our lives are both impacted by these diseases: Migraine and Alzheimer’s Disease. They make for a MAD life.
Mom and I do the best we can with what we have. Sometimes it is great! Most times we get by. Other times I feel like singing Miley Cyrus’ song “Wrecking Ball” at the top of my lungs … when I have breath to do so.
My diagnosis of migraine is 30 years old this year. Mom’s diagnosis is 2.5 months at this moment in time. We have more experience with mine, but mom’s dementia causes her to forget the reality of mine. That’s to be expected with hers, and it’s part of how we knew to get her checked out. To forget that my migraines usually include nausea, dizziness, fever, and severe sensitivity to light was an indicator to me that mom wasn’t herself.
This MAD life is a new exploration for us. I have a long history of trial and error in the process of learning what works for me. This random memory loss is a new venture, and it’s quite frightening, especially since the end result is not a solution, but the end of life. My migraines might feel like I’m losing the battle, but I have thus far come back each time. I am worse for wear, but not the likes of which that Alzheimer’s reeks on a life.
Alzheimer’s is not just forgetting names or places or dates. It’s forgetting how to order food in a restaurant, how to pay the bill with your credit card when it comes. It’s forgetting to brush your teeth and flush the toilet. Getting lost on streets you’ve known for 70 years. Mood swings in 5 seconds or less. Paying some bill’s twice and others not at all when your checkbook was once meticulous. Confusing things that you were just told:
Mom, I stopped at the grocery store and bought salmon and rice for dinner. I’ll fix it now. What vegetable did you want to go with it?
Five minutes later:
Mom, “What’s for dinner?”
Me, “Salmon, it’s in the oven.”
When it’s out of the oven:
Mom, “What’s this?”
Me, “Salmon, I made it for dinner.”
Mom, “Oh, I wish I knew you were going to do that, I’m not hungry.”
Asking the same questions over and over, not just in a single conversation, but from day to day:
Mom, “Why don’t I have insurance on my car?”
Me, “You do.”
Mom, “No, I haven’t paid it.”
Me, “Yes, you paid it last month, here is where you wrote it in your checkbook.”
An hour later, a day later, and the day after that … this exact conversation.
The hardest part is that she doesn’t want or understand the diagnosis. No one wants a terminal disease that slowly eats away at your mind and then your body. When she reads about it, she thinks she doesn’t have it because she doesn’t know that she asks the same questions over and over. She can’t remember conversations she forgot, and she remembers others that never happened. She no longer understands that calling the bank for her balance doesn’t include the checks written and not yet cashed out. She doesn’t relate the symptoms she reads about to what she doesn’t see happening in her life. That is ultra heartbreaking. That is painful to see.
I never dreamed my mom would get this horrific disease. She reads avidly. She worked on the farm, gardened, and stays active. Granted the active is not so much in recent years, but the reading is several hours daily. I always thought cancer would get us first, and with our family history, it was a toss up of me or her. But it is this.
This is Episode 1 of living with these diseases. There will be humor. There will be tears. Sometimes both every day.
Moral of this story: Do what you can with what you have where you are every day. Sometimes that is just getting out of bed, and that’s okay.