alzheimer's?

Observing two different dementia experiences

/ Laura Lee Carter / 2 Comments

I just realized yesterday that in the past few years my sister and I have been witnessing two different dementia experiences up-close and personal. Since my father’s death in March 2020, both our mother and our brother have been slowly losing touch with reality. While my sister has taken care of our mother in a “quality” assisted living facility in Denver, Mike and I have been doing our best to assist my brother in a small rural town in southern Colorado. Another aspect of these different experiences is that my mother has retirement funds to spend on her care, while my brother receives all of his care through us, Medicare, and Medicaid.

Our brother John, Christmas 2021

The experience I am most familiar with is that of my brother. He came here at the end 2020 from a lean-to he had been living in near Oak Creek north of Sedona for a number of years. He knew he could no longer live that life with no assistance if he needed it. He had a few health problems then, but he was generally doing well. Since then he has started on supplemental oxygen and various other drugs and supplements. Only in the past year of so has he begun complaining constantly of “total brain fog” and terrible memory lapses.

Our mother (on right) at my father’s 90th birthday party, February 2019

Since our Dad died in 2020, right before the “COVID years,” Mom was forced to live alone for a while. She entered assisted living two years ago as her memory continued to fail her. Hers seems to be more like classic Alzheimer’s disease with gradual memory loss. She no longer cares how she looks or what she wears, and only occasionally reflects on her many losses. However, she is still quite aware that her memory is failing her. This really is the long goodbye for us…

Luckily my sister and I have each other and our husbands to share our concerns and losses, but it is still quite a challenge to watch our family fall apart before our eyes. As my sister says, with her decades of experience in the fields of long term care and gerontology,

“Everyone tells you that aging is tough, but you don’t really get it until it happens to you…”

What is happening with Mom?

/ Laura Lee Carter / 2 Comments

“Be the most ethical, the most responsible, the most authentic you can be with every breath you take, because you are cutting a path into tomorrow that others will follow.” — Ken Wilber

I remember when our class met up in the mountains above Boulder at Ken Wilber’s amazing home built into the stones at the top of a flatiron, while I was at the Naropa Institute studying Transpersonal Psychology. I felt a real connection with his mind & perspective on life.

My siblings and I are now dealing with my mother’s slow descent into dementia in the most ethical, responsible and authentic way we can. As many of you know, this can be quite the challenge, further complicated by my Mom’s refusal to get tested by a neurologist. We see memory problems every time we see her, like asking the same questions over and over again, questions like “What time are we meeting?” Or “Am I supposed to bring anything?” She has always been a great cook, but not so much anymore. In fact she usually cannot remember what she had to eat today and prefers eating ice cream all evening. (I know, who wouldn’t?)

She complains of boredom and loneliness since Dad died last March, and we worry about her being alone and falling, so we are now in the midst of trying to convince her to move into an assisted living situation, one where she will be around other people (she lives alone now), be fed good meals, and have access to lots of different kinds of activities with others.

It’s so hard to know when to start telling her what she needs for her own happiness & safety… 

Mom fears her future. Who wouldn’t in her circumstance? But we are slowly realizing that we will now need to make some decisions for her. That is tough as a kid whose Mom used to have all the answers. She mourns so many things, the loss of her past, the loss of her things that remind her of her past, the way her world is slowly shrinking around her. Amazingly, she’s still a great driver, something she has always loved. Going out to dinner is her favorite pastime. She just forgets that she’s not hungry until after she orders food…

We have no diagnosis, we just worry about her a lot. What have the rest of you done in this kind of circumstance?