Dad was a fighter pilot in the Air Force, such a badass. We lived all over, including Spain. We had a great family life. My Dad and Mom were married for 57 years. My dad used to say, “look at your mom, she still has the best legs!”. He adored her and was very proud of everything she’s done for our family while he was flying all over the world. Mom is the anchor. Mom is the boss. Always has been.
I live far away, so when I noticed things that had changed with my Dad, and I mentioned them to my mom, she knew she wasn’t the only one seeing them. She tried to get his doctors to acknowledge the changes, but she was constantly told “he’s just getting old” or “that’s not unusual for someone of his age”. NO ONE LISTENED TO HER. She was the person with him every day, and more than anybody else, she’d know if he’d changed significantly. She didn’t give up. As a Veteran, he was fortunate to have insurance that paid for this wild goose chase. Still, it took years for a diagnosis.
Then they discovered he had Lewy Body Dementia. As if things weren’t bad enough. If Alzheimer’s is horrible, LBD is like Alzheimer’s on crack. Loss of ability to distinguish between reality and say, dreams. That was a fun one. And aggressive behavior, where he thought we were strangers who’d kidnapped him, and he’d shout obscenities at us. Also super fun. I would always tell him, “you stop, Dad. You have never talked to me like this. I love you, I’m so sorry that this is happening to you, but you can’t speak to me like that.” It was the hardest thing I’ve ever had to do, see my Dad, who I had the best relationship with, become this crazy stranger, and be too far away to help.
The circumstances of his death are even more horrible. Luckily I got to be with him, and I stayed with him every day and night he was in hospice. It was an honor. I didn’t want him to die alone. He didn’t.
He didn’t deserve any of it. Neither did Mom, but here she is doing it all over again.
My Brother has lived with my parents since his divorce. I think he stayed there for two reasons: He wanted to help Mom, but also he was probably in the beginning stages of his own dementia. He has always been a sweet, kind soul. If Dad didn’t deserve this, his son DEFINITELY didn’t. As if anyone does…
We’ve always had so much laughter in our family. So much love. I’m hoping it will get us through this…again. Luckily I am an artist, and I feel grateful to have an outlet for all of this. Many don’t.
If you think your loved one may have Alzheimer’s, look up the stages chart online. It gives details of all symptoms. If they match, DONT GIVE UP. Go to a memory clinic, like the one at UCIrvine. They’re a research clinic and don’t just diagnose ALZ. No one knows your loved one better than you do. Don’t let anyone tell you nothing is wrong if you know something is.
I want to do something, to give dignity to those in early stages, or with younger-onset. I have an idea…
Sending love to all of you touched by this disease.
