End of Life Issues

Jul 27, 2010

As my friend’s condition deteriorates, I am more and more at a loss for what to do or say when I am with her. She is now wheel-chair bound and unable to speak except to repeat an occasional word that someone else has just uttered. At the age of 68 she has a frontal lobe condition that is a rare form of dementia, but like all dementias, it’s progressive. There’s a stiffening of her right side now—which put her in a wheelchair—and signs that her left side is now engaged in the same process. She hasn’t talked, except for the occasional word for a year or more. Amazingly, she can sing the words to all the old favorites, camp songs, like “Oh, Susannah” and “Row, Row, Row Your Boat.” Apparently, her memory for songs is intact.  She sings with gusto and sometimes remembers words that I have long forgotten.  Never before have I sung with her, so it’s quite an experience.

Her condition reminds me of my mother and father-in-law’s last years. She suffered from vascular dementia, brought on by a stroke. Unlike Alzheimer patients who decline rather steadily, Mom would plateau for a while until TIA’s sent her behavior plunging to a new level, then she’d plateau again for a while, only to repeat this pattern again. At the end of her life she was biting and kicking and screaming(at) her handlers and some of the other patients. Pop had Parkinson’s and, at the end of his life, could not move at all, so everything had to be done for him. Unlike Mom and my friend, Pop’s mind was as sharp as ever and his speech was not affected. All three—my friend, Mom and Pop had been very competent people in their younger years: my friend had been a real estate agent, my mother was a nurse, an operating room supervisor, and Pop had guided two banks through the depression successfully.

While my mother regressed over four years into the dementia, I spent a lot of time ruminating about end of life issues. I have a lot of questions for God left over from that period: when there is no consciousness that we can observe, or when a fine mind is captured in a non-functioning body, is there some progress for the soul underneath the surface? What is the purpose of dementia or Parkinson’s? What does the inability to remember or to talk or to move have to do with preparation at the end of life?  What is the preparation for? One thing I am sure of is that God would not plan for these kinds of conditions at the end of life without a good reason. Unfortunately, my mind does not have the capacity to understand the “whys” and “wherefores.”

I owe so much to Mom who birthed and raised and loved me for years in her own best way, to my father-in-law for his best gift to me, his son, and to my friend of thirty years who poured all her love into a 10-day vigil while my husband was dying. She and another friend came every day and stayed all day for those ten days:  comforting presences expressing the willingness to go through a difficult passage with us. What a gift!  I would like to understand why she has this condition. I would like to be there for her, but I live 2500 miles away and only see her three or four times a year.

I don’t consider her gift of friendship to me something that needs to be repaid, but there is love in me that needs to be given to her and others. As I left the San Francisco Bay Area two and a half years ago, another friend and I made sure that she was in good hands by moving her into a facility where she could live happily the rest of her life, hopefully returning what we could for all the love she had given us. Now I know that the best thing I can do for her is to  pray that she know what a blessing she has been to others in her life and that God bless her in her present condition and forever.

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