On January 18, 2011, I was perusing the New York Times, doing a search for something or other related to health, and came upon The New Old Age column, in particular Someone Else’s Mother by Jane Gross, posted a year ago on January 26, 2009. Jane’s post and ensuing reader’s comments had me glued to my seat, and I was compelled to add my own comment, which I’ve pasted below.
My parents were married for 56 years, but spent the last 10 of those years separated by living arrangements and mental states. Those of you who have followed Neurons Firing for awhile may have seen my various posts about Alzheimer’s and my Dad. A little over a year after my Dad died, my Mom suffered a stroke. I am sharing my Mom’s story because perhaps it may be useful for someone else. It has been amazing, and yes, also affirming, the number of people who have heard this story and thanked me for sharing it with them, for providing information they had not known existed, and for opening their eyes to the fact that they have some control over how their lives may play out.
If you are interested in knowing more about the process, here is another NYT article posted in December, 2008 – End-of-Life Choices: A View From the Front Lines. The article includes an interview with Judy Schwarz, the clinical care coordinator who guided my Mom and me through this process. I found Judy to be compassionate, knowledgable, practical, helpful, funny, honest and straight-forward, and accessible at all times of day.
My courageous Mom died this past October 16, 2010, and she died because she chose to wind down her life. An intensely private and independent woman, she was felled by a stroke in early August. The stroke left her paralyzed on her dominant right side, though thankfully she retained her ability to talk and to think.
My Mom spent the last 10 years of her life married to my Dad but not living with him, for he had Alzheimer’s and spent the last years of his life in a nursing home. Mom knew what it meant to live in a nursing home, no matter how kind or helpful the care. She understood the loss of dignity and privacy. And she saw the less than perfect situations, as well, those times when assistance was not forthcoming, or was not properly given.
Determined not to live out her life in a nursing home, with others to clean her, dress her, and manage her physical life, and annoyed that she would not be able to play piano (she was a master pianist) or communicate via email on her computer, she asserted her right to make decisions about her own quality of life.
To that end, at her request, I contacted Compassion & Choices of New York.
You might deduce from reading this that I fully supported Mom’s decision. I did. But that didn’t make it any easier to come to grips with her choice, with the myriad emotions and agendas that others had, and with the sadness that came after she died.
I spent a weekend wondering what I could have done to make it better for her, chastising myself for all the “should haves” and “could haves”. Finally, my husband asked me if I had forgotten that my mother was paralyzed, and reminded me that was why she chose to end her life. To my astonishment, for that long weekend I had COMPLETELY blocked the paralysis out of my mind.
So what am I trying to share here… That I believe we owe it to our parents, and our aging population, to listen to their needs and requests for their own life choices. We should not impose our wishes on them, just because we love them. It is because we love them that we should honor them by not taking away their independence – by not taking away their right to make decisions about their own lives.
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I was not familiar with Pick’s disease until your comment, which caused me to do a quick search. The best recommendation I can make is to contact some of the resources listed below, and see if they have experience or additional resources that will be helpful to your friend and your friend’s family.
With the exception of the NYT article, all of these organizations or care providers try to use a variety of approaches (including nonpharmacological) in caring for and treating people who have forms of dementia or Alzheimer’s.
ARTZ (Artists for Alzheimer’s) – http://www.artistsforalzheimers.org/
Hearthstone Alzheimer Care – http://www.thehearth.org/
John Zeisel’s blog (author of I’m Still Here and creator of Hearthstone) – http://www.imstillhere.org/
Beatitudes – http://www.beatitudescampus.org/
NYT article – http://www.nytimes.com/2011/01/01/health/01care.html?_r=2&hpw
If you find any information, perhaps you’ll consider letting me know or adding another comment, so that if someone else asks the same question, they might be helped.
From my experience, not only will support from friends and family be helpful to your friend, but that support will also sustain all of you as friends and caretakers.
I hope you find information that will benefit your friend.
I have a friend recently told he has PIick’s disease , otherwise known as frontotemporal dementia (FTD). Have done any writings on this condition? Any recommendations for friends and family of a person diagnosed with this condition? Thanks!