She's had many falls, stitches, staples, broken bones. She never asked about Dad or my Sister both of whom passed away about 20 years before she went into care. I've mentioned them both in passing from time to time, but never really got any emotional response; so decided to just leave it be. She no longer remembers HER sister, or her best friend. I THINK she remembers me as of this writing, but am not sure she can recall my name if asked (I don't). She did see my name on the side of a panel truck as we were driving down the road and pointed at it with an excited light in her eyes, and that's good enough for me! But she certainly remembers my Son. He will be the last person she remembers. The most important person in her world. If there is one thing that brought joy to her life after the death of my Sister, it was the birth of my Son. And he returned that love, until she got sick and was no longer herself.
She has gone from independent mobility, to a walker and now is in a wheelchair. She needs assistance feeding herself, because she isn't very interested in food anymore. She is unable to have a conversation, and no longer asks about her cats, which was the ONE thing she held onto the longest. She doesn't ask to go home anymore. She does ask about the weather outside and will say "I love you', when I tell her that I love her.
It's hard to see her in this condition. But my true heartache is for her. She would hate to see herself in the condition she exists in. Her care is excellent, but she would be appalled at her inability to care for herself, and manage her own affairs. I hear her words ringing in my ears telling me that if she is unable to think for herself to "pull the plug". She was referring to the Karen Ann Quinlan case in 1975 which is so very different than Alzheimer's. But to her, the idea of being kept alive when her/a person's mind is useless was a waste and she wanted no part of it. While an Alzheimer's patient does suffer irreversible brain damage they do not enter into a coma. But, both conditions can be considered "a long goodbye". Of course, I will always keep her safe and well cared for as long as she is healthy. (And that's as far as I'll go down that rabbit hole.)
The cost and emotional toll of caring for an Alzheimer's patient is well beyond the scope of most families. And it has taken a huge toll on my family. If you haven't heard from me, it's because I don't have any positive news to share. And it's no fun reporting sad news. I've spent a lot of time trying to keep my pain away from my Husband and Son, but I've only been fooling myself. I know it's affected me and my behavior, and they see right through me. Which means it's affected us all. I can't say how much their support has meant to me these long years. I only wish that my son had been older, past his teens, so his childhood had not been so damaged. I pray every day he finds himself and grows strong when we come out the other side of this. He is such an amazing person, but this whole experience has caused him to withdraw and turn inward. Mom loves him so and would wish for him to thrive and experience the world and the road ahead of him.
But that's not really why I'm writing today....
I'm writing because of the Alzheimer's inspired song that Glen Campbell wrote and just won a Grammy called "I'm Not Gonna Miss You". His wife was on the TV this morning saying that she is hopeful that when she places the award in his hands it will recall a memory and he will understand it's meaning. I hope for her sake it does, too.
It's important for anyone who has a loved one with Alzheimer's to understand that these moments of success and recognition are really for us, the survivors, not for the patient. As the song says: "I'm still here, but yet I'm gone."
