Tuesday, July 26, 2011

Love After Dementia

In “Voices of Alzheimer’s” and the Caregiving.com article “Do We Need a POA for Love?” both cover the idea of love after dementia and the ethics of relationships outside of marriage when one spouse has dementia.

The article says “More and more family caregivers are sharing their stories of dating and falling in love with someone other than their spouse.” I found similar sentiments expressed in the book “Voices of Alzheimers.”

“Some of my wife’s friends were upset when I started seeing another woman after Julia went to the nursing home, but I was so damn lonely. I had missed going to concerts and parties for several years. I needed the social life, but it never goes very far. These new friendships don’t hold a candle to the wonderful relationship Julia and I had developed over so many years.” (Husband, p.66)

“There were many problems with my husband’s illness, but one of the biggest was one I couldn’t talk about – he lost interest in sex. I ended up having an affair that ruined several friendships and made me even lonelier. I am thankful I was not more self-destructive during this period.” (Wife, p.66)

“If I just had somebody of my own age group to talk to …I mean, I don’t think that you are violating any of your vows, having somebody you can talk to. I wouldn’t mind having another female, quite honestly, to talk to. Go out and have a beer together.” (Brad, Husband, p.65)

The article “Do We Need a POA for Love?” shares a link to a video about CBS News Correspondent Barry Petersen and his wife Jan who has advanced stages of Alzheimer’s disease. He has since added a new love to his life, Mary Nell, and they together visit and befriend Jan in her residential facility. Mary Nell’s quote is interesting when she says, “The reality is I am a widow. The reality is that he is married to a woman who doesn’t remember him. And so we exist in our own universe of this very peculiar new American family.”

I thought of these dementia caregivers/spouses who are essentially pre-widowed. They have lost their spouses in mind due to dementia, though they remain living in body. They seem to be caught in this middle ground where life is in a holding pattern. They can’t move on and yet they can’t stay the same.

One person in the book says, “People around me are also now unsure of their role; when you have a disease you are supposed to either get better (then they can all cheer) or get progressively worse and die (and they can properly give you care and mourn). Everyone is poised for some type of action, and there is nothing to do for them; they are unsure of how to support this leaky boat which will eventually sink but for the moment is caught on a sandbar.” (JanMina, patient, p.47)

I don’t think it’s fair to impose preconceived ideas of relationships/marriage on caregiver spouses going through a slow death of a dementia stricken spouse. Their needs for love and companionship are important and vital to their health. These are individual ethical decisions that each spouse must make in their own situation. However, I felt that the author of the article brings up a very interesting point when it comes to the children of these marriages. She questions the idea of designating “advanced directives” if you will, to address the wishes of the spouse in a way that would put the family at ease.

“If the daughter knew that her mother would be okay with her father dating, then would this knowledge comfort her today? And, if the mother had expressed different wishes, well, then, would the husband have chosen a different course of action? Along those same lines: If the daughter knew her mother did not want her father to date and then her father did, would this have given the daughter the courage to speak up and discuss her concerns with her father?”

I found these ideas and ethical topics to be very thought provoking, difficult to weigh in on as they are so individual and impossible to pass judgment on as an outsider. All in all, the issues are important and worth considering.

Ref:

1. http://www.caregiving.com/2011/07/do-we-need-a-poa-for-love/
2. http://www.cbsnews.com/stories/2010/06/20/sunday/main6600364.shtml
3. Peterson, B. (2004) Voices of Alzheimer's: Courage, Humor, Hope and Love in the Face of Dementia.

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