There have been so many changes (physically, mentally and personality-wise) that we have seen in Mom since she was diagnosed with dementia. One thing in particular is her tolerance and intolerance of things, when my sister, Kaya, or I am around.
Enrichment Activities
I have talked before about how the activities provided by Mom’s Memory Care unit are plentiful (see my post Bowling?). There is literally something every single day for Mom to go to, see, or participate in. Many times when I visit I find her in one such activity, and she is always participatory. Whether its singing along, dancing, exercising, or answering a question during trivia, she looks engaged.
When she sees me, though, she immediately wants to get up and leave. She drops whatever she is doing, and then usually wants to go somewhere with me. She used to ask me to take her home, or “out of here.” But thankfully that narrative seems to be slowing down. She now just says “Let’s go!” and then we make our way to her room, or a quiet area on the floor. We visit, and then before I leave I always bring her back to the group.
But…
Inevitably, when we return to the group, she looks horrified at the thought of being a part of whatever activity is going on. She can go from tapping her toe and swaying to the music when I arrive, to absolutely not wanting to join in again by the time I’m leaving. This is every time. At least in my experience. She says things like “I can’t do this anymore” and “I want to be alone.” But I learned a long time ago that when I leave Mom in her room, she almost immediately gets up and walks back down to the gathering space in her neighborhood where all the action is.
In fact, for months now she won’t even stay in her room as I go to leave. She says something along the lines of needing to “check out what’s going on out there.” Even though she had JUST said multiple versions of wanting to be left alone during my visit. Sometimes this narrative turns into some version of her not wanting to work anymore. It’s like her brain turns her participation in the group activities into work, or her job. We then talk about how she is retired, and how she doesn’t have to work. She is always so relieved to hear this.
Navigate
I used to think that when I visited, I could be the one to show her that she has her own personal space (she forgets that she has a room and is often so pleasantly surprised to find that she does). She seems so relieved to be in it, in her chair, and surrounded by her things. But honestly that time period when she stayed in her room alone was very, very short. I don’t know what changed, or what her brain is telling her, but as time passed she became increasingly more involved in the group activities. And this is a great thing. It’s a wonderful thing. It made Kaya and me so happy when the staff reported how she took part in pretty much every activity held on her floor.
But when we are around, it’s almost like pre-dementia Mom comes out. Because the mom before would definitely not be the type to be a part of any kind of game, sing-a-long, or arts and crafts. Like, never ever. So to see that she enjoys doing that now is interesting. Almost as interesting as how she becomes more like her old self when we are around.
So???
Kaya and I were recently both with Mom for a doctor’s appointment. The doctor at her facility does her visits in Mom’s room, which is amazing. I’ve talked before about taking Mom to doctor’s appointments (see Doctor Appointments), and it is always an ordeal. So this is such a great perk. After the doctor completed her visit and left, us girls chatted for a while. This basically looks like my sister and I yapping nonstop like we do, and Mom smiling and nodding. This is such a Mom-thing to do. I love to watch my kiddos talking to each other too.
When it was about time for us to go, the programming assistant showed up to Mom’s room and let us know that there was a concert going on downstairs and she had come to get Mom. We let her know that we would walk her down. When we got to the concert, the live music had started, and there quite a crowd already gathered. Mom’s eyes grew big and she looked around literally in what could only be described as disgust. And Mom-before would have done the same thing. To be in a small crowded room with super loud live music? No thank you.
But Mom-now, dementia Mom, loves live concerts! She is super social (her care team tells us ALL THE TIME how social she is). So though I wanted to turn her back around, and get her comfy-cozy in her quiet room, the this-is-not-my-first-rodeo-Layla knew that Mom would be fine. She would enjoy the concert and like being around her friends. If we left her in her room, she would quickly come out looking for something to do.
Complicated? Or not
I am not sure if this is actually a complicated, or simple, personality phenomenon that I am witnessing. On one hand, you could look deep. Perhaps interpret that Mom’s brain is so unsettled, so scattered and worried, that though she may not enjoy other people and activities, it keeps her brain from the random firing and broken connections that she can’t make sense of. When she allows herself to do anything at all, it distracts from whatever evil dementia is doing inside her head.
Or, is it actually quite simple. Mom is bored. She forgets everything almost instantly so every moment is new. She wants to sit in her quiet room. Why is she in this strange room? Where is my home? What’s out this door? Who is that? I recognize that person. Now someone is talking to her, engaging her, asking her to come sit and join them. She has always been proper, if anything. She is a good Southern girl after all. So she follows along. Maybe she likes it, maybe she’s just being nice. But one second tumbles into the next. Are her days really just moments strung together?
Like with pretty much everything else in this dementia journey, I don’t have the answers. But I have learned to let Mom’s care team do what they think is best. Because the heard truth is: I knew Mom BEFORE. I know her likes, dislikes, and personality before dementia. All of those things have changed with this disease. And this version of Mom, dementia Mom, is someone who the staff who are with her 24hrs/day know better. They say she is an energetic participant in the activities, that she is very social, and that she loves to be around people. Therefore, that is what she shall do.
Even though I’m pretty sure pre-dementia Mom is rolling her eyes somewhere deep inside all the while.