Today is a forgetting day. I took the day off yesterday and it was nice. My husband, God bless him, spent the day alone with my mom while I went to a craft fair and Joanne’s with my daughter-in-law, and then I met a friend for dinner and the new Star Wars movie. While I was gone my mom panicked, asking for my stepsister (not me) and thought she had a doctor’s appointment to go to. When you become the main caregiver for someone with Alzheimer’s, you become their anchor. (The photo above is an anchor with Forget-Me-Not flowers on it, the flower of Alzheimer’s disease). Their world revolves around you, their anchor, and when you are not there, they panic and their world tilts.
In addition to her world tilting, she is cranky today. After having her live with us for the past 4 months, I now recognize the signs and know what is going on (yay for me!). I realized that a few days ago, she completely missed taking her Alzheimer’s medication. As soon as I realized it, I gave it to her. But it is so hard to keep her medication levels steady. And there is fallout when the medication cycle is messed with. So we have a mess today (two days out) until her blood levels even out, or settle into her new “normal.” I decided to let her choose her clothes and get herself cleaned up for the day. And today, my mom’s clothing is inappropriate for our climate and the time of day, and she has more make up on her face than I even own. And it makes me sad, because I know she would not like how she looks if she clearly saw her reflection. She is now sitting, and fiddling with the bracelets she chose to wear…and the top she has on. She told me she’s been wearing it for years and always found it so itchy, so she thought she would see if it still bothers her; that and the earrings she has on she hasn’t worn for years. *sigh.* The shirt is new (this is her 2nd time wearing it) and the earrings she wore the other day. Yeah; a forgetting day.
When we were packing my mom to move her up here, we went through all her “valuables” and sorted all her jewelry. We pared down all the junk stuff and tried to keep it down to a small box. We bought her a new jewelry box when she moved up here. I sorted through all her silver and gold, and we put it all into little sections. Untangling the chains took literally hours and hours. Today, when I went to see what she was up to (she had been gone for over an hour, between “putting on her face” and choosing her outfit), she was hiding her jewelry in little bags and boxes in her drawers. When I walked in, she tried to hide what she was doing. Her jewelry box is now a total disaster area, and pretty empty. She was also angry when I asked what she was doing. Yes, it is a forgetting day. One of many days of forgetting.
Alzheimer’s is an ugly disease. It is a slow slide out of our “normal” world and into “Alzheimer’s World.” I have little slips of paper I can pass out to people that tell them my “companion” has Alzheimer’s and it asks for their patience and understanding. I need to make more of them. There is no cure for this. There is nothing I can do. I watch her nutrition (she has lost 13 pounds since moving in with us) and try to get her to bed early each night, to be sure gets the rest she needs. I help her bathe. I pick out her clothes and make her bed every day. I do what I can to ensure she gets all the medical care she needs. But even with this amazing team of medical professionals caring for my mom, and all the care my family and I provide for her, we are all pretty helpless. Each moment is what we can choose to make good. There is not much more than that. And I am sad today.
Mom can no longer follow story lines. She cannot read books, or even follow the news. We play music. We watch Hallmark Movies (they leave her feeling so joyful). We watch endless sports. Any sport. We watch Steve Harvey whenever he is on, whatever it is he is in (she loves the guy). We do what we can, a day, a moment at a time. The hard part is this is a losing battle; a war against time and a disease. No matter what we bring to the war, we rarely win even a battle. Today is a test of my patience. I am working on ignoring what she is doing (she changed and came back out in a completely different set of clothes) and going into my own little world. Because my mom is firmly ensconced in her “Alzheimer’s World” …and today is another forgetting day.
To paraphrase from a movie I saw last night,
“You can only win by saving what you love.”