Security

Hard to believe it's been three years since Mom passed away. Funny how memories work. I come across something while rearranging stuff and flash back to whatever that thing triggered. As I have said before, you don't appreciate how comfortable and safe you are as a kid when you have the consistency of a home to come back to every day. It's not the quality or cost of the things that represent home, it's what you come to know and expect.

I mention my comfort zone when I was a kid, but it's obvious Mom also preferred her consistency. She was always uncomfortable outside her comfort zone. I guess today she might have diagnosed with a version of agoraphobia as I think back to her behavior whenever we were "out."

I just saw the little pillow they gave her to hold on to at hospice. She acted like she was afraid when she first got there (before she faded and slept most of the time). Not only was she outside her comfort zone, her memory was fading so there is not idea what she was thinking. She clenched that little pillow like it might protect her from the unknown.

Mom's security pillow

Memories are good things, even memories of unpleasant things. They provide some context to why I am who I am today, and what matters to me. Thanks again Mom.

The Slow Decline of Dementia

Mom's ordeal with dementia ended more than a month ago. As I review events in our lives, I come across more early indicators of dementia. Of course, it starts with what seems to be routine forgetfulness - "why did I come in here?"

But there are also changes in personality that are cues that are visible in hindsight. Mom became more emotional about 2-3 years ago. She started hugging and saying "I love you," which she had never done in the previous 80 years. It was nice to think that she was finally becoming more attached to people, but it's also possible that behavior was just part of the rewiring of her brain that was going on. It's more comforting to believe it was the former and not the latter.

After the "why did I come in here" there were incidents with tea kettles boiling dry, forgetting how to operate the microwave, and changes in diet.

Mom was always thin, but as dementia progressed, she stopped eating as much of the few things that she always liked. She started that decline by simply eating less. Over time it got to not eating it at all. In fact, she started exhibiting anorexic behavior, getting down to ~80 lbs (5' 4"). This led her doctors to prescribing drugs simply because their side effects were increased appetite. Within the last 3 months of her life, even those efforts didn't work and she survived on several bottles of Ensure each day. At least she liked those and didn't protest when they were brought to her.

I'll write more about the food issues in future posts.

Misplacing Things

Another aspect of dementia is misplacing things. This happened this past week. Mom uses a hot water bottle because she's always cold. On Wednesday she carried it into the kitchen and put it in the cabinet with the snacks. She didn't say anything, nor did we. Yesterday I told her I was going shopping and asked if she wanted anything. "Get me a hot water bottle," she said.

I told her she put her hot water bottle in a strange place but we assumed she knew what she was doing. "What did I do, put it in the freezer?" I then took her to it. No comment.

She now has the hot water bottle back - for now.

More about dementia

Living with a parent with dementia means every day is a new experience. Behavior can change during the day. She can start out lucid but seem disoriented later, or vice versa.

It can be disconcerting to hear "do they have heat in this place?" "Where do you live?" (she's in my house). "Where's the fridge?" - after going to it every day, several times a day.

Despite this short term stuff, she remembers my wife and me. She talks about home and her childhood. Yet she doesn't know what town she's in or the day of the week.

We have a portable heater in her room since we like it cooler than she does. It has a thermostat so it maintains the set temperature. Every day she unplugs it "because it got too warm." Turns out she pushes the buttons then can't figure out how to fix it so she unplugs it. Go in and say "I see the heater is unplugged again" and the response is "I didn't do it." So tonight "should I leave that turned on all night?"

But at least she's eating more than before - nothing healthy, mind you, but at least getting calories. And she doesn't try to light the burners on our gas stove anymore.

An interesting voyage...