In my last post on my mother’s dementia, I shared that she has abruptly moved into stage 6 on the FAST scale – losing many of her problem solving abilities. Now I’m seeing this change accelerating at a very noticeable rate and it’s starting to move into more areas of her activities of daily life.
More Confusion
Yesterday, mom wasn’t motivated to change out of her nightgown and robe – this in itself isn’t terribly unusual. With the current “stay at home” order due to the COVID-19 pandemic, we have no guests and we go nowhere so outside attire is completely optional. But when she went into her room at bedtime, she removed her nightgown, so I gave her some privacy thinking she was changing into a freshly laundered gown. After what seemed like an adequate amount of changing time, I checked on her and she had put on pants and a sweater as though it was the start of the day.
When I mentioned that she should be wearing sleeping attire she became very confused and said, “I don’t know what to do.” I grabbed the clean gown I had expected her to be donning and instructed her to change into it, again giving her some privacy. She was able to get changed; I pulled her covers back and got her sat down on the edge of the bed, then she asked, “Now what do I do?” I instructed her to lie down and put her head on the pillow and told her I’d pull her blankets up for her.
More Changes
Mom’s longer term memory is now starting to see changes as well. I saw in the baby monitor this morning that she had arisen from bed and headed towards the bathroom, so I came out to be ready to get her prepared for the day. When she came out, she was wearing her robe and had her bathroom garbage can on the seat of her walker. I took the can to let her know I’d empty it when I noticed that it was full of Depends undergarments. When I asked her why they were there she said she had wiped with them because she was out of toilet paper. For the last 30 years, her toilet paper reserves have always been stored in the little storage closet by the toilet in her bathroom, but today she didn’t remember this.
And Then…
Even more alarming were the events that followed. What happened was so very unexpected, and really let me know just how quickly this disease is progressing – as well as what may be coming. Per our normal morning routine, I got my mother sitting in her chair, equipped with her remote control and covered with a comforter. A little later I went out to check on her when I noticed her struggling to clean her fingers with one of the paper towels we keep within her ready reach. Getting a little closer I saw what appeared to be chocolate all over her fingers and robe and coating the paper towel. I had thought of chocolate because in the table next to her chair mom likes to keep candy bars that she eats when she gets a notion, and sometimes one gets away from her. When I came over to help her get cleaned up, I realized that wasn’t what it was at all.
I discovered that she had removed her ileostomy pouch earlier and hadn’t replaced it. I didn’t bother asking any pointless questions, I just took her hands to help her from the chair to the seat of her walker and brought her to the bathroom. As I wrote in my last post, I have been concerned that the time was coming when I would need to start helping her with these things. In preparation, I’ve reviewed some instructional videos and I now understand the process. We got her cleaned up with a fresh pouch in place. I also realized she’s no longer clear on how to place her incontinence pads, so we worked through that as well. After all of this, I got her in fresh clothes and took her back out to her chair.
What this Means
What this means is that the level of care my mother needs has just increased by an order of magnitude. The means that I now need to be closely involved in her bathroom activities, something I really wasn’t looking forward to. I say that not because I’m unwilling or unable to do what’s required, but it means that all aspects of my mother’s little remaining privacy are now gone. I have always worked to give mom her privacy, partially for her comfort and partially for mine. If I were caring for a same gender parent, it might be easier, but that’s not our situation.
The Part that Worries Me
I keep going back to look at the FAST scale I shared in my recent post, as well as researching and reading so that I can prepare myself for what’s to come as well as I can. My mother demonstrates each and every listed behavior in stage 6, meaning that what we have to look forward to is stage 7, which the FAST scale describes as follows:
- Ability to speak limited to approximately ≤6 intelligible different words in the course of an average day or in the course of an intensive interview.
- Speech is limited to the use of a single intelligible word in an average day or in the course of an intensive interview.
- Ambulatory ability is lost (cannot walk without personal assistance.)
- Cannot sit up without assistance (e.g., the individual will fall over if there are not lateral rests [arms] on the chair.)
- Loss of ability to smile.
- Loss of ability to hold head up independently.
What will I do at this point? Will I need to put her in a care center, or will I still be able to care for her myself? I don’t know the answers to these questions. Today, I just don’t know.
For Now
For now, all I can do is to provide the best care I’m able to give. I can keep her in the familiar and comfortable environment of her home for the last thirty years. I can keep her where the first thing she sees in the morning is my smile, and the last thing at night is me turning off her light and saying, “Good night, mom.”
Rod, we’re so deeply moved by your ongoing posts about caring for your dear mother. This tender and deeply personal journey is compelling, and you communicate the feelings and the mechanics in the way that needs to be said. This journey is rich with layers of meaning and intensity, and you and your mom are mutually benefitting from all of, especially chocolate! If any next steps are needed, you’ll know what to do then. You’re staying more balanced than you think. Thank you for sharing this with us. With love to you, Mom, Marcie, S at MSP
Thank you, Susana, for your kind words. This is a very challenging time, and writing is one of my tools for maintaining better emotional stability through it all. Talks with Marcie are also very therapeutic for me.
Right now, it’s not easy to think of the future as I come to understand just what mom is likely to experience in the all too near future. I know that I’ll adapt as I must, but as I’ve written in more than one post – this *is* my first rodeo. I have much to learn… and from providing care for my mother, I’m learning about myself. From the perspective of a TBI survivor who lost what I’d estimate to be 90% or more of my long term memory, learning more about who I am now is a good thing. And helping to improve my mother’s experience as she comes to the end of her journey is both meaningful and rewarding to both of us.
In my current state, I think I should pour my heart into my next post, so I will. For now, let me just say a heartfelt “Thank you.” for your thoughtful comments.