Catching Alzheimer’s

I know that there is a hereditary component to Alzheimer’s Disease. However, sometimes I think it is like an airborne virus that can be caught just by being in proximity.

We all have a lot going on and so many details to remember in our busy lives, so we do forget things here and there. I get that. When I am with my mom, however, I feel like my brain becomes like jelly. There is the idea that we enter into their world and maybe that is part of it. But why does that happen? Why can I suddenly not remember the words “vending machine”? She has one at her place and we are always making sure she has dollars or coins for it, so it comes up each visit. I find myself saying things like, “Here are some dollar bills for the…you know…thing where you get snacks.”

Visiting the vending machine

When I take her out, I am constantly readjusting our itinerary. It is good that she never remembers the original one, so she is not disappointed! I will tell her we are going to do one or two things, like go to a store, get ice cream, take a walk. Once we are on our way, I realize that I have totally failed to manage the time and we end up doing less or something all together different. Okay, anyone who knows me knows that time-management is not my strong suit, but it gets far worse when I am with my mom. Maybe that existing outside of time thing is contagious, too!

Of course, I always have the worry that I am getting the disease myself. I wonder if my forgetfulness is from being around her or because of the disease emerging. Sometimes, I feel like I am not far behind her. The, I will visit, and realize I am nowhere near where she is! On my last visit, she was lying in bed looking tired. I asked her how she was feeling. “I am fine,” she said calmly, “but it is really annoying when the birds with claws start to come at me. Of course they would never hurt me, but it is just annoying.” That is when I know, that whatever I am experiencing is nothing like her reality. Hopefully, it continues to stay that way for me or a cure is discovered before it gets to that point. In the meantime, I think that I need to start liking ice cream. It seems to be a constant source of happiness for those with dementia. I know that it is for her!

Mom enjoying her daily ice cream


The Mixed Realities of Memory Care

Though everyone is residing in the same physical space in the present time, each person in the memory facility is existing in his or her own reality of place and time.

My mom recently decided that my father is alive and is there with her. He was, apparently, watching television with her just before I got there this week. I couldn’t help the image that came into my mind from the movie “Ghost”. Maybe he really was there! Sometimes, she wants to to go home to her house in Miami, if her mother is home. Most of the time she is remembering Miami now.

My mom and her mom, possibly in front of the family store – around 1950

Many residents there speak of loved ones who should be coming home soon. Some must think they are at choir rehearsal because they are singing, or moaning, but singing seems better. One man kept getting off his chair to get on the floor in either a prayer position or a yoga rest position, I am not sure. No matter how many times the staff picked him up and put him back in a chair, he was back up and on the floor in minutes. He obviously was somewhere else in his mind besides the dining room at a memory care place.

Wouldn’t it be nice if they could be where their minds are? If their rooms could look like their rooms in their old houses and if staff and visitors could talk about their relatives just exactly as the residents are seeing them, in that place and time?

A colleague showed me an article in an AARP magazine of a memory place in California that is all set up as if it was the 1950’s. They have the idea of creating a familiar environment for people who are predominantly, in their own minds, living at that time.

The education world is focusing on child-centered learning, individualized education that helps each student find his or her passion. How about adult-centered, individualized care? Perhaps there could be a scribe at the facilities noting the stories, the anecdotes, the descriptions of the people and places in the world of each resident. These could be printed and shared so that staff and visitors alike could enter each person’s world, even if only briefly, and be with them there.

I know their worlds are often changing, but so are the worlds of children. What excites them one day will fall by the wayside the next. Why would we not invest as much in the lives and psychological well-being of our parents as we would in our children? How might these care places look and behave if more resources were put towards dwelling where they are?

I guess I am mostly just reaching into the darkness to try and find something that will help the anxiety and uncertainty which envelops my mom. It is difficult to hear her ask questions about loved ones who have passed and think that they are alive because she is unaware of where she is in time and place.

I will say, I had a good silent chuckle this weekend after we got out of “The Lion King” movie and she said, “I have seen that movie several times and it surprises me that a filmmaker never redid it.” Well, Disney, I guess it is time you remade some of your movies!!!