With the increase in the expression of my mother’s severe dementia symptoms, I’m learning that there is a significant variability to the severity of her symptoms at any given moment. This last week has been an experience for both of us. The level of her confusion I’ve seen recently has been far beyond anything I’ve witnessed before, but so far, she still has some lucid moments.
Confusion
My mother now becomes confused at the most unexpected times. While working at my computer a couple of days ago I saw in the baby cam that she wasn’t in her chair, so I decided to go check on her. As I came out of my door, I saw that she had pushed her walker a couple of feet into her room and was just looking around with a blank sort of expression. I asked her how she was, and her response was, “Well, I need to pee, but I don’t know where to go.”
I told her she needed to go into the bathroom for that. We got her turned around and I helped her through the door. Next she asked, “Where do I go now?” I directed her towards the toilet where she asked, “What do I do now?” From that point, I had to guide her step by step by step to get through the experience of using the bathroom.
The moments of confusion I’ve seen in her prior to this point have been much less extreme. I see now that everything has changed, in a major way. The confusion she experiences now is complete. It’s no longer a simple slip of the memory or difficulty with some tasks, it is a complete loss of the ability to reason out the requirements of even the simplest and most familiar of tasks.
The Most Unexpected Behaviors
Yesterday while folding laundry in my room, I saw on the monitor that mom was up and about. I only have two cameras so there are major gaps in my ability to watch over her, but I’m currently awaiting delivery of two more cameras that will enable me to monitor her more effectively. Since I work exclusively at home during this pandemic and I’m frequently in online meetings, it’s not always convenient to get up to go check on her. On more than one occasion over this last week, I’ve had to excuse myself for a quick check on her.
In this case, since I couldn’t see where she was I, decided to go check on her. I saw her walker in front of the bathroom, with her nightgown and bathrobe hanging on it… she was in the bathroom. I discovered that she had removed them because they made it difficult to use the toilet. In my ever present efforts to help preserve some last vestige of her dignity, I waited around the corner for a few minutes until I heard her express her frustration a few times. I had to help her dress again because she couldn’t figure out how to put her nightgown on.
Later in the day, I saw her fussing with the comforter that she covers herself with while sitting in her chair and went out to assist. When I got there, I saw that she had removed her outer robe, was dressed only in her nightgown, and was trying to cover herself with the comforter. I asked why she had removed the robe and she responded, “Oh, I don’t know.” I helped her get her robe on again and replaced her comforter.
Distraction
Through a little investigative study, I’ve learned that distraction is clearly our biggest enemy now. These last few days have been difficult to keep up with because any time I see her getting out of her chair in the baby cam, I go to help her. Each time I do this, if the bathroom was her destination, by the time we get her there she’s completely confused. If you’ve seen the Disney movie “Up!” then these images will hit home… I seem to be the squirrel.
Trying to understand the overall situation a little better, a few times yesterday when I saw her getting up from her chair, I paused before checking on her to give her some time to see how she does on her own. I’ve learned that undistracted by my presence, muscle memory can sometimes take over and she makes it through the bathroom experience with some level of success. She sometimes loses her outer wear before going in, and she always removes her incontinence pad and hasn’t puzzled out replacing it with a new one – but many times she is able to successfully empty her ileostomy pouch and urinate.
What I’ve learned through this experience is that even one distraction, especially me asking if she needs help, can turn her ship sideways and leave her lolling on the waves of confusion. Without distraction and driven only by the physical sensation of needing to use the bathroom, she doesn’t always get everything right, but she does figure out where to go and the essential things to do when she’s there.
Difficult Moments of Lucidity
I do understand I need to be close at hand, because I don’t know what will happen until she gets where she’s going. I think what hit me the hardest over our experience yesterday was when she had a moment where she didn’t know what to do but made it clear that she understood exactly what was going on. As I was placing her incontinence pad for her, she said, “This is so embarrassing.”
As we spoke, it became clear that just because she doesn’t know what to do or how to do it, it doesn’t mean she’s not seeing what’s happening. It doesn’t mean she doesn’t understand that she’s not able to figure out the most basic of tasks on her own. I now understand that while she accepts the help she needs; it brings her sadness and shame that she can no longer do these things on her own.
My Takeaway
Dementia is a cruel fate. It will typically progress to a point where caregivers are no longer able to see outward signs that a dementia patient is cognizant of anything. Does this mean that they don’t still have at least some sense of what’s happening? The truth is, we can’t know. All I know at this point is that my mother understands what is happening on some level. She feels embarrassment and shame over the things I have to help her with. The typical path of dementia suggests that she’ll soon come to a point where she can no longer express herself verbally. Does this mean that she won’t still be experiencing these same feelings? We can’t know for certain. What I do know is that while she is still here, she needs to be treated with dignity and respect. I hope to make my mother’s last days as good as they can be, regardless of what she’s able to communicate.
Huge respect for how you’re looking after your mum. Best wishes to you.
Thank you for your kind words. We do what we can for the ones we love.