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.

Christmas

It has been more than a year since Mom passed away, but holidays always bring up reminders. Fond memories of life at home as a child growing up. Marge was mom and what counted is that mom was always there.

Roles reverse when you become an adult, especially when dementia accelerates to the end. Helping your mother with basic hygiene and repeating answers to the same questions over and over again is very uncomfortable. But mom was always there for me, doing her best to deal with me as an infant and toddler without any support network, husband, or family support. Yet I never saw any flaws, weaknesses or omissions. And I appear to have developed into a "normal" adult.

When mom is gone and Christmas comes around my mind digs up old memories of Christmas. We may not have had much but I had a home and I was loved. It's easy to see those important values when looking back. Unfortunately it's too easy to dwell on the superficial in the here and now. I can't remember the gifts I got as a kid at Christmas time, but I remember feelings of security - life was good, Santa came, we had our apartment and food to eat. Mom made all that possible. How can I ever pay that back as she slipped into dementia in her final years while I am in perfect health?

Life is definitely a cycle from total dependence to independence to total dependence in hospice in the final days. Merry Christmas.

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.

Yet more with dementia

As time goes by the dementia changes make life for us more interesting. My mother is now in assisted living and we visit her every few days. Each day a different person greets us (even though it's always mom).

For the first couple of weeks it was always "when can I go home?". When we asked where home is it was always where she lived 10+ years ago. In fact she can't recall where she lived for the past few years.

Other times it is "am I still getting my social security checks?". Then it's "I don't have any money." Of course in the assisted living place everything is available without the need for money.

Most recently she commented that it was nice of us to visit so she has someone to talk to. When we mentioned that there are more than 100 people living in the same place she said "I don't want to talk to them."

That's like her walker. It was prescribed at her last hospital episode but she doesn't even look at it. "Those are for old people." She holds on to furniture and walls as she walks, but simply refuses to even consider the walker she now owns.

But she still remembers my wife and me and asks how the kids are doing. She refers to her room as her "apartment - but I wish I had a kitchen."

An interesting experience for all of us!