Tuesday, February 25, 2014

The Very Well-Intentioned, but Dangerous, Promise?

One of my frequent travel routes is to drive between Carlisle and Baltimore, in order to take direct flights from BWI to Phoenix, where my parents live. Usually these drives are in the middle of the night, as I try to avoid traffic by scheduling very early or late flights. One positive aspect of this travel is the time to discover interesting radio programs; there is something about listening to radio in the dark that allows one to hear more clearly.  Last week, I lingered in the car after reaching the long-term airport parking, to listen to the end of an especially effective interview.

On Point with Tom Ashbrook, was hosting Kimberly Williams-Paisley who spoke movingly about her family as they coped with her mother's early onset of a form of dementia, diagnosed at age 61.  For those of you who enjoy either movies or music, you might recognize Kimberly as an actress from Father of the Bride (she was the daughter driving Steve Martin to wit's end) and Nashville, or as the wife of country music star Brad Paisley.  Also featured on the program was a clinical social worker, Darby Morhardt, who is an associate professor at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.

The program was very thoughtful and emotional, but for me the most compelling words came from Kimberly's father, Gurney Williams. 

This is a man deeply in love with his wife and also deeply affected by her condition.  At first he tried to hide her diagnosis, but over time, this became more and more difficult.  Mr. Williams describes how he finally came to terms with the need for help -- and the need for more than family help -- when his children staged a bit of an intervention.  They asked him to recognize that his wife's condition, which in her case included confusion, mood swings, anger and -- at times -- violence, was more than they could cope with in the home.  They were worried about their mother, but even more devastated by "losing" their father as he struggled to care for her.  With the family's help, he finally made the difficult decision to place his wife in a formal care setting. 

And it was during his description of the journey, that I heard the words I've also heard many times from friends, family, students and clients.  "I promised my loved one I would never put her in one of those places." I have come to recognize this promise as completely well-intentioned, but also potentially dangerous for all involved.

Listening to Mr. Williams and Kimberly, you could tell formal care was the right decision and they were able to find the right kind of care facility for their loved one.  And it was a decision that allowed all of them to find a new way to express their love and devotion to her, while also providing her with a supportive, safe environment. Kimberly talks about how she stopped talking about her mother in the past tense, rediscovered her and how they created a new, valuable relationship.  Their story has a happy evolution, which, of course, is different than a happy ending.

One of the reasons I was so affected by listening to Mr. William's words, was that I was on my way to the airport to visit my father -- to see him for the first time --  after his transfer to a dementia-care community.  All of my fears and hopes were bound up in my listening.  On arriving in the airport I went directly to a shop and bought a copy of the March issue of Redbook Magazine, which carried the story by Kimberly Williams-Paisley that led to the invitation for her and her father to be guests on the On Point program. I read and re-read "How I Faced My Mother's Dementia" on the plane -- and shared her words with my mother when I arrived. 

I suspect I might write more about my own evolution with my father. Right now it is easier for me to recommend the article, and to say the podcast of the On Point show is even better than the article.  

http://lawprofessors.typepad.com/elder_law/2014/02/the-very-well-intentioned-but-dangerous-promise.html

Cognitive Impairment, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing | Permalink

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Comments

The greatest gift a parent can give an adult child was given to me by my father. He said, “If the time ever comes when you need to put me in an institution, do it. Just make sure it’s a clean, dry place. If I accuse you of doing that to me or if I berate you for not visiting me enough, pay no attention. I’ve had a wonderful life, and I would want you kids to continue living your own without feeling bad about me.” He and my mother chose their own CCRC, only they waited too late to make the move. Dad had to go directly to the nursing home part. Mom enjoyed over 10 years in independent living, soaking up all the activities and socializing, yet visiting Dad every day without having to get behind the wheel of a car. She regretted that they had not moved in years sooner, as she knew my talkative father would have enjoyed the camaraderie of the dining experience in independent living. Well, as it turned out Dad’s words were somewhat prophetic. Dad was very mixed up with his environment (dementia) and not a real happy camper. I felt some degree of comfort as I reminded myself of his earlier words. This gift didn’t cost a dime, yet to his adult children it was priceless.

Posted by: Jennifer Young | Feb 25, 2014 6:17:45 AM

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