Mondays With Mother: An Alzheimer's Story

In 2002 my mother was diagnosed with Alzheimer's. It is a hard road, and we live it one day at a time. This is a chronicle of her disease and my Monday visits with her.

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Name: Anne Robertson
Location: Plymouth, Massachusetts, United States
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Monday, May 05, 2008

Time goes by

I don't know why I thought it might get easier. It seemed like maybe I would get used to some of the routine or accept her condition or something. But it only seems harder.

I did visit several weeks ago. It was quick and unscheduled. We are fast approaching a crossroads...both in the sense of a decision making point and in the sense of a road with crosses on it. Her long term care insurance ran out in January. The funds are running dry. The Birches is the Versailles of care as far as I'm concerned. Everything about it is wonderful. But it is private. Paupers don't live in Versailles, and one of the many horrible things about both this disease and our overall health care system is that it will strip you of every material resource as well as every mental and emotional one.

So she will have to move. My last visit with Mother was with my brother as we met primarily to visit another place nearby that had a bed open. With The Birches fresh in our memory, visiting the other place and seeing the open bed felt like staring into a prison cell.

But back to the visit with Mother. I had presented an award for the Bible Society at a ceremony that morning, so I was dressed up--a bright red dress with a white yoke. We sat with Mother as she finished her lunch. My brother and I chatted. We each asked Mother different response. Then, just before we left, Mother looked across the table and said, "That's very pretty." It was a rare lucid moment and the only words she spoke the entire visit.

It was a gift in some way--to hear something relevant come out of her lips--to hear her say anything at all really. But it was also heart-wrenching to hear that she is still capable of recognizing beauty when the new place we were looking at was lifeless and gray. There are so many twists of the knife in this journey. So many deep disparities between the haves and the have-nots. It reminds me of a game of Chutes and Ladders, although there are far more chutes than ladders.

Today I went to a funeral. I had never met the woman, but she was the wife of my predecessor at the Bible Society, so I went as a representative and to be supportive of him. She had Alzheimer's. A ten year journey. The service was packed and lovely and long and several times I thought I would have to run out of the room and sob.

Of course I felt for the bereaved husband in losing his wife of 42 years. But it was much more than that. It was attending my mother's funeral--both glad it wasn't hers but on the other hand wishing it was. About five different people got up and spoke, including her husband, who talked beautifully about the irony of being the "guardian" for someone who really had been his guardian and a guardian for others in so many ways.

As they described the grace of the deceased when faced with such a cruel disease, my mother was right there. And I fought back the tears again and again. And of course it was about me, too. Probably it always is tinged with concern for myself. Fears that I will follow in my mother's footsteps. So it was difficult to hear of the devoted husband who cared for her. The children who surrounded her. I will most likely be on my own--me and my long term care insurance. The gray prison cell loomed large. Self-pity is really a crippling thing, you know. I don't recommend it.


Anonymous Anonymous said...

Wouldn't it be a wonderful thing to start a fund for Anne's mother so that she could stay where she is at and comfortable... change is always so hard for people with Alzheimer's Disease.
I ask of the readers who have found solace and comfort, advice and fortitude, to join together and help Anne's mother. A few dollars from every reader would do so much for someone whose daughter has given so much to her community, her family, her followers. What do you say, gang? Let's start a fund.

5:57 PM  

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