Mar 17, 2014

Grief and More Grief – A Tragic Emotion for Caregivers

At the beginning of the Alzheimer's journey many experience deep grief and I was no exception.

Marie Marley
Alzheimer's Reading Room

I usually publish upbeat articles. But this one is different.

It’s about the grief I felt before I learned to accept Ed’s condition. Sometimes people do eventually adjust to having a loved one living with Alzheimer’s. But that usually takes some time.


At the beginning of the journey many experience deep grief and I was no exception. I kept a journal during the 17 months Ed was living at the Alois Alzheimer Center. Below are some of my entries about grief.

Many of you might personally identify with these descriptions.

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Grief: I just realized something very sad today. Namely, Ed doesn't need me anymore.

For years after he stopped driving, he needed me for everything - to deliver groceries, medicine, library books, dry cleaning, transportation to anywhere he needed to go, you name it.

Then the last year before he went to Alois, he needed me for even more, including calling twice a day to remind him to take his medicine, paying his bills and running out to his apartment to check on him anytime he didn't answer his phone.

Often he didn't answer his phone just because of the dementia. I also did many other tasks far too numerous to list here.

But now his every need is taken care of. Since he only has the capacity to live in the present, I don’t think he even notices how often I visit. I think I could not visit for two weeks and he wouldn't be aware.

He never asks me to visit, never asks me to visit more often. He used to call me from the Center just to talk, but no longer has the capacity to do that. Neither does he answer his phone if I call him.

I think - I could never visit and he wouldn't know the difference.

I am no longer needed. I know he still loves me when he sees me, he just doesn't think about me except when I'm physically present.

When you take care of someone so much for so long and then they no longer need you at all, there is such an enormous vacuum and you feel so useless and unneeded.

More Grief: Today I’m thinking back to the time just before Ed went to the Alois Center. I went to his apartment every day in an effort to make sure he was safe.

When he finally went to the Center, I visited every day for several hours– because it was hard to let go and let the Center take care of him, because I wanted to see him, and because I had no earthly idea what else to do with my time after years of total caregiving.

Later I started going only three times a week and staying for just an hour. I missed him all the time and was lonely for the first time in my adult life. At home, I often reached for the phone only to remember that he wasn’t able to talk on the phone anymore.

Sometimes I even forgot where he was and thought to myself I’d stop at his apartment on my way home from work.

His mental state deteriorated rapidly, and I began to dread going to visit. I started going only once a week.

I have tried everything I can think of to have more “meaningful” (to me) conversations. (I should point out that he is ecstatic every time I visit, but at this point I seem to care only about myself.)

Occasionally it works, but usually it doesn’t. It makes me angry at him, even though I know he can’t help it.

I never want to go. It has become a chore. I usually don’t have the mental energy to try to have an interesting exchange so I just sit sullenly and listen to his oft repeated (word for word) monologues.

I need to find a way to adjust but I can’t imagine how I ever will. I ask myself how millions of other people manage to adjust – or if they ever really do.

The Alois Center Social Worker told me that the terrible thing about this disease is that every time you manage to accept your loved one’s status they get worse.

She’s right. And I’m deep in the clutches of grief.

Interminable, Insurmountable Grief: Today I’ve been thinking a lot about grief. Especially about grief related to a loved one with dementia.

About how you lose them, but they’re still here. 

About how many years the grief may last before they are finally gone - and then you have to begin grieving all over again. It seems interminable and insurmountable.

At least if someone dies you have a starting point for the loss and you know there will be more or less an end point for your grief. But with dementia the loss occurs over a long period of years before the person even dies.

I found an article on the internet that said the psychological costs of caring for a loved one with dementia are so great that most caregivers are actually relieved when the loved one dies.

The article mirrored my feelings in also saying that spouses and adult children of people living with Alzheimer’s feel grief and loss, not unlike a death in the family – except that instead of being sudden, it’s spread out over years.

This is all overwhelming to me.

Does anyone want to share your own experience with grief? 
Did you finally come out of it and learn how to accept your loved one’s condition?

Marie Marley is the award-winning author of the uplifting book,
Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.
Her website ( contains a wealth of information for Alzheimer’s caregivers.

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