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Carol Bradley Bursack, Published April 18 2010

Bursack: Does living will require a review? Probably not

Dear Carol: Is it ever appropriate to try to talk about “end-of-life issues” with the severely demented?

My wife and I had all the proper paperwork drawn up before she was severely demented. The living will dates back several years, and revised wills and power of attorney papers were drawn up early on with the help of the elder attorney. My question is: Does my wife have anything to gain by my trying to visit these issues again?

I have not tried. She can’t effectively deal with tomorrow, so why try to delve into the unknown future? I have decided that everything that needs to be done has been done and we can now just focus on our day-to-day living. Am I right? – Bob

Dear Bob: For several reasons, I believe you are right. My family went by my parents’ end-of-life wishes that they had an estate attorney work out before dementia settled in and also by conversations we’d had throughout the years. We witnessed how our parents, with love and care, ushered their own parents through the last months of life, as well as how they helped my mother’s older sister and brother-in-law with their health problems and eventual deaths. Having experienced this helped us understand our parents’ values.

You know what your wife wanted before her dementia took over. In my view, it would only confuse her if you were to discuss this issue now.

I personally found out the sickening reality of trying to discuss end-of-life wishes with someone with dementia. A couple of years after complications from surgery threw my dad into severe dementia, he went through a time of unbearable pain, and there seemed to be no way to treat this. Knowing that my grandmother had begged for “permission” to let go, I tried to comfort Dad by saying that if letting go was his wish, it was OK. We wanted to keep him as long as we could, but we didn’t want him to live in agony.

Unfortunately, because of his dementia, Dad misunderstood my words and thought I wanted him to die! I felt horrible. Fortunately, the source of his worst pain was discovered, and he lived several more years with sufficient pain management. My point here, however, is that the risk of your wife misinterpreting your meaning because of her dementia is real. Personally, I think it’s best to go by her lifetime values, unless she, herself, gives you some reason to believe that her opinion has changed.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at http://www.mindingourelders.com/. She can be reached at carol@mindingourelders.com.