Dementia Mourning: Death of Spouse, Children (Research, Hospice Story)

Whether they live at home or in long-term care, people with dementia can have the experience of losing a loved one through death. The deceased is often a spouse. Unfortunately, little is known about widows and widowers with dementia as they may find it hard to explain their perceptions and feelings to others accurately because of cognitive impairment. That is why this particular research study was done.

Seven family caregivers and six professional caregivers from daycare centers were interviewed. An analysis of their responses was used to identify mourning behaviors of people with dementia. The following revelations resulted:

1) In the mourning process of people with dementia, different behaviors were found according to dementia stages and different circumstances.

2) People with dementia could remember their spouse's death. It took one year to be able to perceive their spouse's death and more time to store it. They did not always discern a spouse's death throughout the process.

3) People with dementia followed a different mourning process from conventional ones.

In the care of widows and widowers with dementia it is crucial to adjust circumstances to allow people with dementia to guess reality. Further studies are needed to clarify differences between the mourning process of people with dementia and that of intact older people without dementia.

Healthcare workers and volunteers are often in positions where we can provide grief support for patients. Residents in long-term care are often told about a death, even though they may be confused about who died. They may need reassurances that they will still have others to care for them. This true story shares how Mamie, one of my hospice patients who had dementia, dealt with her grief in an interesting manner.

“Is your mother alive?” Mamie asked me one day.

“No, she died a few years ago in her eighties,” I responded.

“You know, you can still be with her and talk to her if you want to.”

“Oh, I know we can still communicate.”

“No, I mean for real. You can be with her in person. Just get her clothes together and her shoes. Don’t forget her coat. They say it’s cold outside. Take them to the cemetery where she’s buried. Just set them on top of her grave and wait. She’ll rise out of her grave and put them on. Then you can take her home with you. In every way, she’ll be the same person you knew. Other people won’t be able to see her, but you will.”

“Hmm. I’ve never heard that before.”

“Most people haven’t. I know about it because I did it with my two grown sons. They were both murdered on the same day in a drive-by shooting. I didn’t know how I would get through the pain. Finally, I took their clothes to the cemetery and did what I just told you. Both of them came home with me. It was the best day of my life. I got my sons back.” Satisfied, she smiled.

Some people will dismiss this story as bizarre ranting of a woman with dementia. But, if you really listen with your heart, you’ll hear the magnificent empowerment in her words.

Story Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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