Don’t Forget

Mom sleeps a lot. In fact she is asleep most of the time. Alzheimer’s has stolen everything from her, and has stolen her from me and my Baby Girl. When I go to see her now, she doesn’t even open her eyes. She is lost in a world that I cannot find a door into. Mom, I say, hey Mom, can you hear me? She opens her eyes slightly with the squeak of the bed as I sit down. But she doesn’t look at me. Hi Mom, hi – can you see me? Her eyes don’t focus and almost immediately they start to close again. I sit for awhile and watch a show on her TV. I put the Christmas decorations away.

Is there something wrong I wonder? I ask one of the lovely ladies when they think I should be coming to see her. Is there a time of day that she is more awake? They ponder but can’t really come up with an answer for me. She is asleep most of the time they tell me, but she’ll still eat. Even with her eyes closed, she’ll open her mouth for food. I wonder at this – the human body is designed to keep us alive. Why has her brain capitulated in every other regard? I think to myself that I don’t believe Mom will pass away due to anything other than her heart stopping. I don’t think she’s going to stop eating and starve to death, or that she’ll choke on her food and end up with pneumonia. I pray that it doesn’t come to that. My best scenario is that her brain will simply tell her heart to stop beating, and that it will be a peaceful transition. I also realize, that this of course means that the chances of me being with her at that time are slim. But I would rather have her go peacefully than with suffering due to hunger or pain. Even if I have to sacrifice being there in her final moment. Even though I know that they would not let her suffer. Pain will not come for her if the nurses can help it. I would still rather just have her slip away in her sleep – wouldn’t we all?

I read today about a new drug that is coming. That is being expedited by the FDA to hopefully be out in about 6 months. It has shown a 27% reduction in the advancement of Alzheimer’s over an 18 month study. It is meant for those who have been diagnosed early. It is based on the amyloid plaque hypothesis of Alzheimer’s – that amyloid plaques build up in the brain killing brain cells which leads to Alzheimer’s and death. Many studies have shown little to no effect of such type drugs and many companies have switched their research to gene therapy. All admirable and worthwhile research. I don’t care who gets it right, but I would rather NOT KNOW if I’m going to wind up in my Mom’s position. However, that being said, I do think I will know quickly if I am starting to show symptoms and will be first in line for any drug that will slow down the process.

If such a drug had existed at the time would my Mom have taken it? Would she have jumped on board? If we had caught on early enough – if she had let us find out what was wrong sooner – would a drug like this have slowed down the process? Would she have wanted this? I wonder. She absolutely HATED knowing she had Alzheimer’s. She HATED knowing what was going to happen and that she would be rendered helpless and dependent in the end. She called herself “stupid” and cried when she couldn’t make words come out of her mouth. She could not understand that it was the disease causing her distress, or at least she refused to believe it. I still don’t understand to the day why she couldn’t/wouldn’t be more gentle with herself. Let herself have grace. Let herself accept what was happening so that we could have tried harder to do something. So I wonder if she would even have tried.

The best she let me do was to put her on Prevagen, which is a supplement made from Jellyfish that is supposed to do wonders for your memory, and to have her eat hardened coconut oil every morning. (I couldn’t have done that – I hate coconut! But she was willing so we did it.) Eventually as memory failed the pills and oil became ignored… forgotten and discarded in the fridge. She wouldn’t let my Dad do her pills for her until it was so late that she questioned why Dad was forcing her to take anything at all. She was very suspicious and it took a lot of convincing to get her to take her pills. I still believe that if someone had put her on an antidepressant early enough, she would have been a happier person those two years. However, considering how difficult it was to get her to a doctor at all, getting her to take an antidepressant was, while not the least of our concerns, was simply not a priority.

I won’t post a picture of Mom now. Y’all have seen her slipped to the side of her wheelchair asleep and unaware. It’s only worse from there so Mom’s visual privacy will be honored by me. She wouldn’t have wanted anyone to see her this way, I know. At least I know she is comfortable. She is peaceful. She is unaware of my pain and heartbreak. My Baby Girl still loves her Granny, and still remembers her as she was. May this be forever true for her. I do not want her to forget.

Please don’t forget.