what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

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Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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2 Comments

  1. Good article on what to tell a person living with Alzheimer’s/Dementia about the death of a dear one. I had also decided that Gregory would not be able to grieve the death of his brother who was 15 years older and like a father to him. I did not have any guilt about not telling him.

    When we were looking at photographs of family (which I created as a memory book) and at the end of the album came to our cat “Hoover,” I mentioned informationally that “he is dead now.” Gregory began to cry and grieve and said over and over, “I didn’t know, I didn’t know.” He finally settled down but I learned a lesson and my not commenting about his brother’s death was substantiated. He never mentioned “Hoover” again and never asked anything about his brother (who for all he knew was still alive.)

    Thanks Susan.

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