Mom continues to fight with strength seeming to come from nowhere. She has allowed us to feed her small amounts of soup and apple sauce, Jello and other soft foods, some liquids, but I can’t tell you when that started because all the days seem the same to me. I can’t imagine how the small amount of food she has consumed can sustain her. She weighed 84 pounds sometime in October; I can’t imagine what she must weigh now. She looks more emaciated than any body I have ever seen.
Mom sleeps most of the time. She goes through periods of apnea when she stops breathing, sometimes for as long as 20 or 30 seconds and then starts up again. I try not to listen to each breath, but it’s difficult not to. When she is awake she stares upwards and to the right. I sometimes move to where she seems to be looking, but there is no focus there.
Her words are gone. It has been days since she attempted to speak. If she is startled her face shows panic. Although I don’t think she understands the words, telling her the bed is going to move, someone is going to change her, or roll her over, for example, goes a long way to keep her from becoming startled.
The beds at the hospice care facility can be lowered all the way to the floor to prevent falls. They put gymnastic mats on the floor on either side. It has been several days since I saw Mom even try to get out of bed. The staff no longer walks her to the toilet or commode. They change her and bathe her in bed. The most movement I’ve seen is when she tries to get her arms out from under the covers. She no longer can turn over herself. She has to be turned.
I am a little slower moving these days too, not surprisingly. Getting up in the morning is harder, getting ready takes longer, eating is a chore. The drive to hospice is about 30 minutes, along the same route to the elementary school I used to teach at. (Yes, I have gotten in the wrong lane exiting the freeway, my brain on auto-pilot and obeying signals from the early 80’s to go to school.)
I bring sewing and computer work to do, but don’t seem to get anything done. I hold Mom’s hand or stroke her hair, tell her I love her, and watch her breathe. I play music on my iPod for her, classical stuff mostly and songs from her era. I don’t know where the time goes. I sometimes go back after dinner to be with her too, but I’m trying not to if only to pace myself. At night I fall into bed, get up, and do it again.
The hospice staff has been excellent, and the idea of being actively involved in the dying process seems to make a lot of sense. Alzheimer’s complicates this, however. Verbal assurances of love, forgiveness, remembrance, and acceptance are communications Mom’s damaged brain can’t receive. Before this most recent decline she literally couldn’t hold a thought longer than a few seconds. Yet, recognizing this sad fact in my own brain doesn’t stop my heart from attempting it anyway.
I remember early on in the disease I was always taken aback, surprised, by her strange behaviors or lack of logic. She looked like my mom, her voice was the same, her mannerisms and speech patterns identical. Yet she would say or do the strangest things and I was always fooled. As the Alzheimer’s progressed her mannerisms changed, even her gait changed. I got used to the strange language, irrational thoughts, and odd behaviors. She looked and acted differently. I expected the Alzheimer’s when we interacted. Now, when she sleeps she looks so peaceful and remarkably “normal.” Her odd reactions to the world around her are so infrequent that I am fooled again into thinking her brain isn’t broken. Oddly, that seems to help.
Thank you for keeping us in your thoughts and prayers. It will take months for me to catch up with all my unread emails, but I do read each comment you post to the blog. I’ll get to the other stuff eventually.