I lost my mother long before her physical death. It’s like she died twice and I’ve often wondered what would be worse…to be a prisoner of your own mind or a prisoner of your own body?
My mom had Parkinson’s. It started with tremors and in the end her body seemed to turn to stone. In the final stages she couldn’t walk and she couldn’t eat or drink without choking. At her passing she weighed 68 pounds. Long before she became bedridden she struggled to hide what was happening to her body. When she could no longer hide it, she hid from the world because she didn’t want anyone to see her in that condition. She was a proud woman.
But this post is about Alzheimer’s….
Did she truly have Alzheimer’s? Maybe it was dementia or Lewy Body dementia that sometimes accompanies Parkinson’s disease. We’ll never know for sure. She didn’t want an autopsy and we respected her wishes. Failure to thrive due to Parkinson’s was the official cause of death.
It started subtly at first around the same time she started having tremors and was diagnosed with Parkinson’s.
She became forgetful as older people sometimes do. She’d laugh at things that were inappropriate and she’d sometimes say things that were out of the norm for her personality. She would repeat the same stories over and over. We learned to act like it was the first time that day we’d heard them. She was easily agitated as well. She knew a piece of the puzzle was missing, but she didn’t know what it was.
The Alzheimer’s progressed more quickly than the Parkinson’s. She was so confused and it frustrated her immensely. She would often say she could hear a woman calling for help and would become upset that we couldn’t here it, too. I have no doubt she was hearing what she said she heard. I believe she was hearing herself, trapped in her own mind, asking us to help her.
It takes a great deal of patience to care for someone with Alzheimer’s. Sometimes they don’t know who you are or they realize they know you, but can’t figure out how. Sometimes they don’t trust you. They can be combative and mean, but there are good days, too.
We learned early to never take her far from home. It was too confusing for her and it took her days to “calm” down afterwards. Even taking her to a doctors appointment was a big deal.
She required many hospital stays for other health problems and this presented its own set of obstacles because in her mind, she needed to be at home. As weak and fragile as she was, she found the strength to try to get out of bed and get out of the hospital at least once every hour. Due to the Parkinson’s she was a fall risk and someone in the family was with her at all times. We tried to assure her she really needed to be there…which she never believed. The former nurse became a very difficult patient.
She almost never slept at night and would wander around the house making sure everything was where it was supposed to be. For some reason she always had to know where her keys were even though she didn’t need them anymore. She hid things and would accuse us of stealing them because she couldn’t find them.
While going through old photo albums after her passing we found that she had cut herself out of most of the pictures. We assumed it’s because she didn’t know who the woman in the photos was with her husband and children. Precious memories gone because Alzheimer’s stole them from her.
As frustrating as it could be sometimes for us, we reminded ourselves that there was no way we could imagine how frustrated she must be feeling. We learned a lot about patience.
I loved my mom so very much and I, nor anyone in our family ever considered it a burden to take care of her. She was ours and there’s nothing you won’t do for those you love.
If it felt to you like I was complaining at any time during this post, it wasn’t my intent. I’d do it all over again if I had to, only this time I’d know what to expect and might do a few things differently.
My daughter and I will be walking in the Walk To End Alzheimer’s next month with a friend who’s mother was recently diagnosed with Alzheimer’s. They were the inspiration for this post and we will be there to help them on this journey because again, that’s what you do for those you care about.
If you’d like to visit my page on the Walk To End Alzheimer’s site, send a request to my email at firstname.lastname@example.org and I will send you the link.
It’s hard to put my feelings into words, but if you’ve been in this situation you understand what I’ve tried to say. I’m including a link to a music video and song about Alzheimer’s….sometimes music says what words cannot.