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Helping a parent with dementia cope with the death of a spouse or sibling

by Carol Bradley Bursack, Editor-in-Chief

It's one thing to have to tell your mother that her husband and life partner has died. It's another to have to tell her this news repeatedly, since her dementia prevents her from remembering the truth. How often do you tell a loved one about the death of a beloved spouse or sibling? What is honest and what is kind? Caregivers are often faced with this difficult decision. Each case is different. Each day is different. Sensitivity to our loved one is our surest guide.

My parents resided in the same nursing home for years, but they had separate rooms. Dad's surgery induced dementia made him difficult to live with and Mom needed some privacy. We kept two (expensive) private rooms on the same floor.

A few months before Dad's death, two things happened. First, their money was on the verge of running out and the need for Medicaid help loomed. Second, both of my parents were very frail. It was anyone's guess who would die first, but one of them was sure to die before long. Though we didn't put it in those terms, my siblings and I felt that our parents would be better off in one double room so they could spend whatever time they had left, together.

Preparing for Death: Sharing a Room Once More

We emptied two nursing home rooms and whittled things down to once again make Mom and Dad roommates. It worked okay except Dad kept Mom awake with his nighttime vocalizing and Mom's dementia, plus the side effects of her pain medication, had pretty much eliminated her patience. There was a lot of complaining, but love was still at the base of their relationship.

Who Will Die First?

It became apparent after a very short time that Dad was going to be the first to die. In intractable pain, he soon needed hospice care. The nursing home and hospice worked seamlessly together.

I fought the reality of hospice staff telling Mom that Dad was dying, but they were very clear this must be. They handled it well and provided spiritual support and counseling to Mom. After a couple of months of this togetherness, I was summoned from work late one afternoon. Dad died in my arms that night.

Denial and Disbelief

During the time Dad was dying, Mom was aware of what was happening, but wanted to stay in her bed. She also wanted the dividing curtain between the beds drawn for a great part of the time. I believe denial was her greatest friend, though she'd ask from time to time how Dad was doing. During the death process, I divided my time between them, but of course spent the greatest part sitting with Dad.

After Dad died, I pushed aside my grief and moved exclusively to Mom. I told her, of course, that he was dead. Understandably, she kept saying, "I can't believe it." Over and over she'd mutter, "I can't believe it."

The nursing home staff handled us well. Eventually, I was able to leave Mom in the care of one of the nurses so I could go to my nearby home to rest and shower. I was back with Mom early the next morning.

Retelling Death

Mom questioned me about Dad. I had to tell her that he'd died the night before. She said, "He did? I can't believe it." This painful and sad routine went on every day for weeks. Sometimes I'd get phone calls from Mom asking about Dad. I'd run to the home to be with her and hold her. All she'd say was, "Is he really dead? I can't believe he's gone."

Mom died five months after Dad. I'm sure his death was part of her letting go. Her death was, in many ways, a blessing.

Alzheimer's Makes a Difficult Task Even Harder

As difficult as it was to have to keep telling Mom that Dad had died, it can be even harder when dementia is more severe, or with Alzheimer's. Mom's dementia was more generic. She had short-term memory loss but not the other symptoms of Alzheimer's, and she still knew people and remembered many things. Many caregivers who communicate with me have parents with Alzheimer's. These elders often ask about long dead siblings, their own parents and other close people, besides a spouse who they may remember as a young person.

How Often Do You Tell the Naked Truth?

How long should people keep repeating the horrible news of death to a person who cannot remember it at all? How long do they put them through the grief process only to have them forget and have to go through the agony of acceptance all over the next day--especially when the person who died would not even be recognized if he or she walked into the room?

My imperfect answer is this: I believe it's only ethical to let them know the truth, at least once. If a person's spouse died, dignity and respect demand that the caregiver be brave enough to handle whatever emotion ensues and tell their parent, "Yes, Dad died." Or, "We received a call telling us your brother, John, has died." I believe in my heart we owe them that.

Each Day is Different

Then, my friends, you are on your own. Each case is different. Each day is different. I hear from people who insist the parent be told the truth each time, no matter how often they ask. I hear from others that they see no sense in repeatedly putting a parent through this agony. I tend to agree with the later sentiments, with some reservations.

After the truth has been revealed, some creative fudging may be okay. If the surviving parent is so deep into Alzheimer's that he or she can't recognize people for who they are, it seems fair to say, "You'll be seeing him soon, Mom." This may be easier for those of us who have spiritual beliefs that include some form of afterlife than those who don't, as we are to some degree telling what we believe to be the truth.

However, religious beliefs aside, kindness requires a place in this scenario. Instead of directly answering the question, try to ignore it and distract the person by calling attention to something interesting. Try to redirect the person's mind so that the obsession is, for a time, focused on something else.

The Question Won't Go Away

Whatever choice you make, be prepared. You may soon enough hear the question again. "Where is John?" Only you can decide what imperfect answer feels right to you. Your response may be different from day to day. That's okay. We aren't dealing with rules here. We are dealing with human feelings. You have to go with the flow and with your conscience. My heart goes out to you. This is one of life's cruelest challenges for caregivers. When is the naked truth the right answer and when is it cruel?

If you hit it right every time, you are a wiser caregiver than most.