So this disease my mom has is invading her mind more and more. She swears she locked herself out of her place; she has to find her key; where have all the people gone; who is in her stuff; when am I taking her back to her place….up and down from the couch, looking for her key. Putting hairspray on right before bed, “Because I always spray my hair at night. I spray it off and on throughout the day to save my style.” (And she keeps forgetting her head grows hair in the back, too. Never combs the back, or sprays the back. Just the front).
“Do you like my little guy?” Mom created this out of her mashed potatoes and peas. I told her it was cute and then asked her to eat her food. “Oh no, I could not eat my little guy.” And I almost said, “We don’t play with our food!” like I would have to my kids. Only this is my 88-year-old mom. And she refused to eat it. So I gathered our plates and threw her little guy in the trash. She had wandered off to the bathroom for at least the 10th time since dinner was served, totally forgetting her “little guy.”
And I realized we are no longer communicating. She has this world in her head and it no longer even resembles reality. I asked her to please go to bed, since she was not watching (she was actually sleeping) the program I was watching (Josh Gates is my new favorite, in his/my dream job on Discovery’s “Expedition Unknown.” That is him above. Remind you of anyone? Yeah, he is a total nerd and admits it. Loves Indiana Jones!! LOL!) She said, “Oh, but I am listening and he is just so good,” as she looked up to see what it was I was watching. Ha-Ha. Even Josh’s visiting foreign ports and searching for extraterrestrials could not hold mom’s attention. So, I changed tact. I just started shutting down the house. And after I let the dog out to potty, I started turning lights out and told her we were all going to bed. And she complied, although she had to stop at the bathroom for, I swear, the dozenth time tonight. I tried to get her to put on new Depends, but she got so angry and told me she had already taken care of that and she just wanted to get into bed, because she had a long day and was so exhausted.
Josh Gates has been to, and seen, some of the coolest things, ever. Sometimes he actually finds what his show is about, but most often he just lights up the screen with his enthusiasm for what he is doing. He makes learning about history fun and very exciting. And being a history buff, I just love it!! One of my favorite episodes is when they stop filming because he gets a call from his wife, and she tells him they are expecting their first child. He wept. I wept. It was so beautiful to see a man so overjoyed about becoming a father. The whole circle of life thing. And it brings home to me how singular and isolating, and very self-centered this disease of Alzheimer’s is. My middle son is expecting a baby any minute. Mom has no clue. She has no clue how many kids I have anymore. The other night, as she was literally clawing the walls at 1:30am, trying to “get out of this place. I don’t belong here” my youngest son went in to comfort her. She had no idea who he was. None. Mom is losing the world around her and is focused solely on herself. Tonight when I first suggested going to bed, her response was, “I go to bed when I want to go to bed. I do what I want, when I want.” With a loud “harrumph” at the end. Sigh. Alzheimer’s.
I love this quote from Josh because as parents, our goal is to raise kids who want to conquer the world. Even if that world is around the corner, or across distant horizons. And we pray that home is their beacon, and that they always want to return there. That home is an anchor, and they do not become idle wanderers. For mom, sometimes I think she has forgotten “home.” I am constantly telling her she does not live in a “facility,” but in our “home.” She has her own room, in our “home,” and that we are all family, together, in our home. She nods her head, but I know she does not understand. And I realized tonight I believe it is because her home is calling her. New Zealand. Her parents. Familiar sights and sounds, smells and flavors, are calling her. And her home is not with me, in Alaska. And I think she is agitated because she cannot truly settle, because she can’t find home. And I was wondering if that is the final agitation and unrest inherent in all these people suffering from Alzheimer’s. As their brains atrophy, their childhood is what is familiar. Even if they live in the same home they were born in, it will not be home because it is not the same. Their parents, siblings, friends and relatives, are not there with them. They are lost children, adrift in the mystery of Alzheimer’s. And it makes me very, very sad.
We have chosen to move my mom to a memory care facility. And somehow I think that she will be more settled there, because there will be fewer reminders of who she is not, and where she is not. I will visit as her daughter, in the right order of living, and not as her caregiver, cook, laundress, bather, toileting helper – as her daughter. And I somehow think that will provide her with more of an anchor than she has living under the same roof with me. Because I believe that every day, she realizes she cannot do what she thinks she should be doing. I am doing all the things she thinks she should be doing. On some level, she knows that. And I think it adds to her agitation.
Tonight I have come to the conclusion that not all of us can care for loved ones in our homes until their final breath. That we make these “promises of the heart, ” as my care coordinator calls them. And oftentimes the most loving thing we can do, is to change those promises, so all of us can be there, in the best possible way, for the ones we love.
I think I can sleep now. Blessings.