JOAN’S BLOG – WED/THUR, JULY 21/22, 2010 – CARE PARTNERS vs. CARE GIVERS

It was almost 4 years ago when I first heard a wife of an Alzheimer husband use the phrase “care partner” instead of “caregiver”.  She held her husband’s hand, and announced that she was not his caregiver. They were care partners. Being consumed with my new role as a care anything, overwhelmed at the recent AD diagnosis, and stressed over the changes taking place in my husband, I never did bother to ask her what she meant.

When we went on our first Caregiver Cruise, she told Patrick, the social worker and travel agent who arranges the cruises and presents “caregiving” workshops, that Care Partner was a better description of a spouse’s role. He thought it was a wonderful expression, and has been using it ever since.

Being somewhat cynical, grumpy, and just plain miserable about our changing marital roles, I never could understand the “partner” part of caregiving. The word “partner” presupposes that both people in the partnership are able to contribute equally, and on a similar intellectual level to the relationship. My husband and I were partners for over 30 years. We discussed issues and made decisions together. We helped each other make individual decisions. We supported one another emotionally. We each had our strengths and weaknesses, and gave the best of our strengths to each other. We had fun together.

When he became ill with Alzheimer’s Disease, the partnership changed. His reasoning and judgment abilities took a nose dive; his emotional stability became completely unglued; his memory, comprehension, and higher level thinking skills diminished. I had to make the decisions alone. I had to tell him what to do, when to do it, and how to do it. He became unable to give me the emotional support I had always received from him. So how is that a partnership?

This week I found what I consider an explanation of “care partners” that I understand. Click this link to read the entire article by Dr. Teena Cahill. PsyD. Although I cannot say it reframed my thinking as much as it did the author’s, it is an idea worth pondering. She writes that the term “caregiver” intimates that one gives, gives, gives,  all of the time, and receives nothing in return, which can lead to feelings of isolation and resentment. The person for whom we are caring should be given the opportunity – to their level of ability – to give something to us. It may be a daily expression of love; hand holding; a nightly kiss; getting out of the chair and bringing us a drink; SOMETHING that they are able to do for US. There will come a time when they are incapable of doing anything for us, but while they are, their contribution would make us feel more like “care partners” than “caregivers”, and would give them some of the self respect they have lost.  I can live with that idea. 

The second part of Dr. Cahill’s article on Care Partners discusses the necessity of partnering with anyone and everyone who will lend a hand to make the job of care “giving” easier. I certainly subscribe to that idea as evidenced by my recent blog on “Learning to Accept Help.” 

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