I am a retired RN with a long term care background and an office manager. My spouse in his early 70's has Alzheimer's and has been in an excellent care facility for dementia only residents for 4 years. For 3 of those years he has been unresponsive. It has taken time to get rid of my habit of caregiving. In the U.S. we have groups for substance addictions and efforts to support those who struggle. Are not recent caregivers in need of support?

I hope to start support groups for widows, widowers and partners of progressive dementia care recipients. Caregiving and being a care advocate has become a habit in our lives.

In 2018 this article was published:

In 2020

Still no know action in the U.S.

The death rate of caregivers who die within a year before or after a loved one is increasing. It is time to turn it around as we start support groups for us. My incentive is not only that my spouse is still alive, but that I have known caregivers who have died within 3-6 months of their spouse. One was in a great Alzheimer's Support group meeting twice a month. At the age of 68, she cared for her spouse at home with Lewey Bodies dementia. She had no time for social activities. When he died she lost not only her partner, but also her "friends" from her support group which was the only safe environment to share her struggles with. After 12 years of caregiving, our lifestyles have changed, most "friends" are gone or we cannot relate to them as we did when we were couples. She died within several months of her spouse, having no desire to live: "I only want to be with Gary." Caregivers rarely have time to set up plans for when their caregiving and care advocate duties are over.

We do not choose to make caregiving a habit. It becomes one. Just as there are groups to help those who have developed other types of habits, I hope to help start support groups for widows, widowers and partners of progressive dementia care recipients. I care!

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Melby, I'm interested, in knowing how you plan to start, who you'll contact and how you'll spread word, what sponsors (hospitals, e.g.,) you'll have, how you'll contact caregivers, how you'll develop topics and plan the meetings....and more.

Where are you now in your plans?

Did you start working on your support group?

First of all, I commend you for truly caring. I am sorry that your husband is suffering with dementia.

I feel there is most definitely a need for a caregiver and to have someone with your experience leading the group would be a blessing.

I encourage you to go forward in your decision and thank you so very much for supporting others.

I was caregiver to my mom for 15 years with Parkinson’s disease. It was hard. She is now with my brother and sister in law. I can’t imagine how difficult caregiving is with a spouse.

Wishing you all the best.

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