Each of these things have started. And the downward spiral of mother’s dementia, my caregiver’s learning curve, and the steady upward climb of my stress levels have one thing in common… they are all too steep, too sudden, and they all feel almost unmanageable.
The Downward Spiral…
This is an expression of what I see in front of me combined with what I anticipate on our horizon based on all that I read about the progression of dementia.
…Activities of Daily Life
Mother now struggles with the simplest of things. When done in the bathroom, she usually asks, “Where do I go now?” A suggestion that she goes to sit in her chair, even though she only ever sits in one chair, now prompts the question, “Which chair?”
Mom is no longer able to process instructions that come in groups. If at bedtime I say, “Ok, go over to your bed, sit down, then lay down with your head on the pillow,” her response will be something like, “What am I supposed to do?” If instead, I lead her to her bed, then advise her to sit down, and finally suggest that she should lay her head on the pillow, this level of instruction can often be followed effectively.
Just two short weeks ago, she was fully capable of getting in and out of her favorite chair on her own…but now over the last couple of days when she gets to her chair she asks, “What do I do now?” The first time this happened, and before I was fully cognizant of her new mental state, I rather flippantly responded, “Um… sit down?” It was when she said, “I don’t know how…” that I got a clearer picture of just what is now happening.
…The Other Bits
Over this last month, I’ve noticed a significant deterioration of my mother’s most commonly told tales. These all too familiar stories that she tells virtually all the time are now becoming just broken pieces of the original versions. Her stories used to occasionally have names, places, or fine details missing, but now the key plot pieces that allow the story to make some sense are going missing as well.
Names of some of her dearest family members are starting to leave her as well. From what I can observe, she still knows who she’s talking to or speaking of, but just can’t attach the correct name. The scary part is that I’ve heard too many stories from friends and coworkers with parents or grandparents who got to a point they no longer even recognized them, or perhaps thought they were someone else.
…The Horizon
All that I read suggests that her next steps will likely be loss of the ability to communicate all together, the loss of mobility, possibly an inability to hold her own head up or even smile. This brings me sadness. No one should have to come to the end of an active and happy life only to be forced to endure the progressive loss of everything that makes them who they are.
After one of our many step-by-step bathroom trips the other day, she was cognizant enough to feel a level of unhappiness over her current situation that as we were bringing her back to her chair she said, “Just shoot me and tell God I died.” It would be funny if she wasn’t being serious, but she was.
The Learning Curve…
My learning curve has suddenly gotten very steep. New concepts are introduced every day to me. For example, today I learned that they sell “anti-strip” clothing for dementia patients. In my wildest imaginings, this never would have occurred to me, but yes, dementia patients get confused and disrobe. I had to dress my mother three times today because while I was in a meeting or focused on my work, I’d look over at the baby cams to see that she had lost her clothing again. The last time was just after lunch, and she’s been dressed since, it’s a good sign. None the less, I’ve been researching options.
The Stressful Incline
Everything seems to be a matter of timing, doesn’t’ it? Well, here I am, working when many are unemployed, so I’m grateful – yet the addition of responsibilities that were previously someone else’s full time job to my already overly busy schedule, has certainly increased my stress levels. Then we add a girlfriend who feels just as shorted as I do by social distancing but is a little more expressive of her feelings than I am. And now, mother’s deterioration seems to have hit high gear. I’m having trouble keeping her dressed, she needs step-by-step instructions in the bathroom, and of course, I have to prepare and serve every meal, maintain the house and yard… and I could list all my complaints if I wanted to occupy several pages with something no one would care to read.
Am I stressed? Yes. Does it feel like it’s increasing from the pressure on all sides? Yes, it does.
Finding the Positive Moments
This is the one thing that makes a difference in my days. Whether it’s the pleasure of preparing and enjoying a delicious home cooked meal made from scratch (I’m actually a rather talented cook these days…), talking with the all too friendly wild turkey that lives on my property, or sitting in my wicker rocker looking out at my backyard forest with a nice glass of wine, the simple moments make all the difference in my days. Most often it’s the quiet moments that help me to readjust. And yes, as I’ve written before, meditation is something that make an incredibly positive difference in my outlook.
Then there are the things we can laugh about. It’s difficult with my mother these days, as she can often take things completely wrong and start to cry when I was trying to bring her a smile. I’ve learned to be a bit more cautious these days with my sense of humor. Still, we had a good one today. As I was helping mother through her bathroom experience, we got to a point where the last thing on the list was pulling up her pants. When she asked, “What do I do now?” I laughed and said, “Well, you can walk around with your pants around your knees or you can pull them up, it’s up to you.” She looked at me sharply, with a slight twinkle in her eye and said, “Smart ass.” That made my day.
Whatever your situation, find your positive moments where you are able. Cherish them, for they can make all the difference in how you approach your day.
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