A friend recently faced the task of letting her mother, who has mid-level dementia, know that the mother’s elderly brother had died. This death was not unexpected, but when a person has dementia and short-term memory loss is a problem, the news would likely be unexpected by the mother.
My friend can be forgiven for dragging her feet. Her mother has been told often that the brother was ill. It was new information to the mother each time. There was no reason for the daughter to think that the telling of her uncle’s death was not going to shock her mother all over again. She seriously thought of not mentioning it. It’s not as if a visit was expected. She asked me what I thought.
I told her what has formed, over a period of time, my personal rule on this very common problem. The person with dementia deserves the dignity of being told, at least once, when a loved one has died. After that, individual circumstances direct how to tell the news and how often to repeat it, if at all.
The degree of closeness obviously has a great deal to do with how often you would repeat this news. If the person who died has lived at a distance, and the person with dementia rarely asks about him or her, then I say tell them once and be vague after that. You can probably get away with that easily and avoid upsetting the elder with the sad news on a regular basis.
However, if a spouse has died, or even a close friend or relative who has been an integral part of life, it’s much harder to know what to say, and how often to say it.
When my dad died, my mother had dementia. She didn’t have Alzheimer’s, but she was in a stage of dementia where her short-term memory was not good. Being human, she was also good at denial.
For years, she’d endured the news, often arriving via a Christmas card, of friends dying or having cancer or Alzheimer’s. Increasing news of death and disease is one of the really tough parts of aging. The older we get, the more friends and relatives we must let go of. People in their eighties often say, “I’ve outlived all of my friends.” Mom was beginning to feel that way, even though she was shy of eighty.
Dad died at the nursing home in the bed right next to Mom’s. She was in her bed and I was sitting with Dad, holding him as he passed. After gently laying him back and letting the nurse take over, I moved to sit with Mom.
That night, she’d ask me repeatedly, though she knew the answer, “Is he really dead?” I’d say, yes he was. She’d say, “I can’t believe it.” This was more denial than lack of memory.
However, the next morning when I visited, she asked me how Dad was. I told her he had died the night before. We’d start each morning like this. With Mom, though some of her questioning was short-term memory loss, much was denial.
Unlike my friend whose mother had Alzheimer’s, Mom was not in a stage of dementia where I could tell her once and after that distract her. I just had to keep plugging away with the truth. Mom died five months after Dad. I think she finally decided to join him.
When dementia is severe, people aren’t just in denial. They truly have not been able to form the new memory that lets them remember their beloved family member or friend has died. So, the news is as raw and fresh each time you tell them as it was the first moment. How often do you tell them? How long?
For that, you’ll have to go with your gut. My friend told her mother the stark truth twice. The experience was heartrending. In her mother’s mind, the brother who had died was a child, because that is how she remembered him. This made the event doubly tragic. After two episodes of unvarnished truth, my friend began to say, when her mother asked about the brother, that she would “see him soon.” Then my friend would distract her mother with a photo album of her mother and siblings when they were young. For my friend, that worked for her conscience and for her mother’s wellbeing. It may be different for you.
The role of a caregiver is seldom easy. Bringing bad news, especially news of death, to a person with dementia may be one of the hardest tasks caregivers face. Each day will be different, so you’ll have to go with your feelings that day. Try to strike a balance between right of the person with dementia to know the facts and their ability to absorb the facts. Then go with love in your heart and practicality on your lips. You’ll probably doubt yourself, but my guess is that you will instinctively do the right thing.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.