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Dementia, Death, Grief, and the Kitchen Sink


I can’t remember how to clean the black markings from pots off of a white porcelain kitchen sink.

My mom would know how to do that. I remember her doing it when I was young, but I can’t remember what she said to do.

I could have called my mom to ask her, but not anymore. Not for a while.

Loosing a loved one to dementia is difficult because you grieve different types of loss at different times.

Loosing someone to Alzheimer’s disease has often been called the “long goodbye” because as the person with Alzheimer’s starts to loose abilities and memories, it seems like you are saying “goodbye” to them long before they actually die. In many ways this does feel true, in other ways there were many things we said “hello” to- like a deeper emotional connection.

Not many people talk about what it is like after your loved one with dementia dies, what that grief will be like. Most of the books about dementia end with the person’s death, as if that is the end of something that was wholy unpleasant, even if you have learned valuable life lessons from it. However, their death is not always totally a welcome relief or easier to understand because they were sick for such a long time.

I have not been able to ask my mom for cooking or cleaning advice for over four years, so why would the inability to call her now, almost five months after her death, bother me?

Maybe because I could have still called her and at least told her about my cleaning dilemma, even if she could not tell me how to fix it. I probably would have at least looked up options on the internet and talked to her about them. But now, I don’t even want to look up ideas on the internet because I can’t share them with her.

In grief after dementia, where many things have changed or have been lost before the person has died, after the person dies you are grieving your loved one as they were before the illness and grieving the fact that they have died. This is probably common to many illnesses that include long-term extreme loss of abilities- physical or mental.

With dementia, you may also grieve loosing who they were with the illness.

The other day we were at a restaurant and a woman with a disability was eating at a table near us. She was in a wheelchair and had difficulty swallowing, so she was coughing for a while on her food. Her care partner was very nice to her but also very worried that the coughing would make other people in the restaurant uncomfortable. This made me think of Mom. I missed sitting at the dinner table with Mom in her wheelchair, feeding her, even if she did cough on her food and it was scary sometimes. My son and I both looked at each other and I knew we were both thinking about Mom. He asked me if I was sad because this reminded me of eating with Mom.

The grief that comes with all stages of dementia, and after death from dementia is difficult, sad, and odd. In fact, I don’t even feel that Kubler-Ross’s five stages of grief are accurate for many people dealing with loss due to dementia. There is something missing in those stages. I don’t know what yet, but I just know that something about loosing a person over a long period of time, and then when death comes, loosing who they were before and during the illness creates different stages of grief.

For today, I want to know, from my mom and from her only, how to clean pot marks off a porcelain kitchen sink.

Blessings,

Rev. Katie

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