I think I’ve been sheltered from the health care workers who have bought into what I consider the “outdated” view of people with dementia… at least, in the past three years, I have not encountered anyone quite like the woman I met recently, sent to me via an organization which specializes in dementia services. Huh.
This woman, whom I will call Helen (no disrespect to anyone by that name), came to meet with my mother for what was described as “companion” services. We were on a list for over a year, and a trained care partner had just become available.
Just to fill you in…
Given my mother’s general confusion, her emotional state and her frustration with her incapacity, I know she would benefit from having someone who is very focused on just listening to her, patiently, as she struggles to communicate however she can… rant and rave if she wants to, and about us if she needs to, and with someone who could possibly quickly learn, as I have, the code of her aphasia. (I’ve become better at figuring out what Mom is trying to tell me when she calls, and even better if we’re together and I can read her body language.) There’s always a way!
Helen sat with my mother for about two hours before I put an end to the four-hour session that was initially planned. I could tell my mother was exhausted trying to be “on” for this new person, and I could also tell that there was no chemistry between the two.
First of all, while the organization had assured me that Helen spoke English, it became immediately clear that she was much more fluent in French. She kept switching from one language to the other, depending on what she was trying to say. “I have trouble with my English phrases,” she would say, and then switch to French. It was very confusing for Mom, needless to say. She spent the first half hour drilling my mother about what she liked to do, did she like to draw? Did she like to do puzzles? Did she like to listen to music? I reminded Helen that we were hoping she would be a “talk” companion, and that it wasn’t about doing activities. I’m not sure she understood, but I was in and out of the room after filling Helen in on my Mom’s wonderful life, thinking she might pick up from there and get chatting… she was very quiet, though, and there were long silences coming from the room, which was not encouraging.
I was puzzled by the discovery that Helen, although highly qualified (she told me about her experience and training when she walked in, and it was quite extensive), made what I consider to be rookie mistakes – she turned to me and asked a question about my mother, in front of my mother – I redirected her with “Why don’t you ask my mother? She’s right here.” And then, at another point, I walked in to hear her arguing with my mother, who was getting grumpy and accusatory. Helen was shaking her head and speaking rather sternly to Mom, saying “No, no, no, Madame, that is not what I said.” And Mom was starting to look teary; she was feeling bullied. I could tell Helen wasn’t reading my mother at all.
Houston, We Have a Problem
This feeling was confirmed when Helen called me later, at an appointed time, to discuss the meeting. Rather than addressing the afternoon session, though, Helen launched into a bit of a lecture about how she thought my mother was quite advanced – I should be looking to put her on a list for a residence, did I know how long the lists were? I said I did, but that we would be caring for my parents in their home, that was our determination.
She then implied that this would be impossible – “Well, yes, of course,” she said, “But at some point you just won’t be able to do it!” When I pushed her for what “that point” might be, she talked about incontinence. When I responded with diapers as the obvious solution, she insisted “Well, many of them don’t leave those diapers on, you know!” She just wanted to go down that dark hole of despair, the “worst case” scenarios that get thrown around as trophies for the drama-addicted. Not interested.
I pulled the conversation away from residences, and told her by way of wrapping things up that I would be speaking to Mom to see if she wanted to continue. I knew we wouldn’t be asking Helen back, but I had to go through the proper channels. At this point, Helen actually shocked me by saying, in a tone that meant I was to take her seriously, that, “She’s not there anymore, you know. There are changes going on in her brain and she’s not the same person she was. Soon she won’t know who you are and it won’t matter so much who’s around.” I bit my lip so hard my aunt would be proud of me.
Doom and Gloom, Begone!
I suppose there’s a chance in hell that Helen is right, but who wants to be around people like that? Not me. Not my mother. Not your loved ones. And seriously – if you’re going to build a positive environment for the people you love, you don’t want to think like Helen. You don’t! Even with all the authority and credibility that some people can bring to these sordid points of view (because they believe what they’re saying), YOU don’t have to buy into it or buy it.
My mother’s brain may be changing, but she is always in there. Always. We are people before we speak, we are people even when we don’t speak, and changes in the brain do NOT affect a person’s emotional center or emotive memories. Love is eternal, even science understands that.
So to all the people out there who don’t want to believe that two forever-married seniors can live and thrive with dementia and have a wonderful, active life in their own home for as long as humanly possible? Keep reading.