Writing about a loss to dementia

Dementia takes a person twice. First the mind, then the body. By the time the death comes, many families have already been grieving for years. If that is you, the words you are looking for may need to hold two losses at once. This page is for that.

The long goodbye is real grief

Grief that begins before death has a name. Clinicians call it anticipatory grief, and the version that comes with dementia is one of the longest forms of it. You did not start grieving at the funeral. You started grieving the first time your mother did not recognize the front door of her own house, or the first time your father called you by his brother's name.

The eulogy can name that, briefly. Something as simple as we said goodbye to my dad twice, once five years ago when the dementia started, and once last Sunday when his body finally let go. The room will know what you mean. Many people in it have been doing the same math.

Bring back the earlier person

The hardest part of writing a eulogy for a person with dementia is that the most recent chapter is often the easiest one to remember, because it is closest in time. That chapter is not the whole story. Start farther back. Their twenties. The first job they loved. The way they made coffee. The argument they would always start at dinner.

A useful exercise: pick three years of their life that had nothing to do with the illness, and write one paragraph about each. Then your eulogy has the shape of a whole life. The dementia years can be one paragraph at the end, gently held. For more on gathering the right small details, see our guide on how to write a eulogy.

Relief is allowed

Many family members feel a wash of relief after a long dementia decline ends. The caregiving was hard. The watching was harder. The person you loved had not been fully there for years. If you feel relief, you are not a bad child or a bad spouse. You are a tired person who has been doing one of the hardest things humans do.

You do not have to name relief from the lectern. But you can, gently, if it feels true. Saying I am glad his suffering is over does not diminish your love. It often makes the room exhale.

A short example, two minutes

My mother had Alzheimer's for seven years. By the end she did not know my name. We had already done a lot of our crying by the time she died. I want to spend most of this time telling you about the woman who raised me, before the disease took her piece by piece.

She was a high school librarian for thirty-one years. She had a rule that no child left the library without a book they were excited about. She kept a tin of butterscotch on her desk. She called the football coach by his first name even after he was principal. When I was nine and afraid of the dark, she taught me the names of the constellations from the back porch, and after that the dark was a place I knew people in.

If the caregiving is still recent

Many readers of this page are weeks out of full-time caregiving. The grief and the exhaustion are tangled. The crisis and grief support resource page has caregiver-specific lines and groups. If you are writing from a smaller community without local dementia support, our Phoenix memorial planning page and other city pages list local grief groups including dementia-specific ones.

For more on the season after the service, see our piece on the anniversary of a death. The first year after a long dementia loss has a different shape than most.

Common questions

Is it okay to say it was a relief?

Yes. Many families feel relief after a long dementia decline, and naming that quietly can give other mourners permission to feel the same way. Say it gently, and pair it with love. Both things can be true at the same time.

Should I talk about the late stage?

Only if you want to, and only briefly. The room remembers the late years too. The eulogy is your chance to bring back the earlier person. Most of the speech should sit in the years before the diagnosis.

What if they forgot who I was?

It still counts. You knew them. Your relationship was real. The forgetting was a symptom, not a verdict on your bond. You are allowed to grieve both losses, the one years ago and the one this week.