Grief: What if no support group wants you?

The loss of someone to Alzheimer's can bring grief earlier than support groups want to hear about.
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Grief takes many forms

The loss of someone to Alzheimer's can bring grief earlier than support groups want to hear about.

The other morning over coffee, my friend Hilary told a story about life with her long-time partner: They were remodeling a house in Seattle near Seward Park. They had added a second story with a bathroom. Hilary had just plumbed the bathtub drain. Her partner said it was time for a bath. Hilary said that wouldn't work; she hadn't hooked up anything but the drain, so there was no water supply. Her partner wasn't deterred; she ran a hose up two flights from the utility sink in the basement and filled the tub. Then she put a chair beside the tub, poured two glasses of wine, set the glasses on the chair, and sat there drinking wine with Hilary while Hilary bathed. It was very romantic.

But now Hilary's partner is gone. She started developing signs of dementia years ago. At first, the partner realized what was happening to her. Then, even though Hilary kept taking her places, she seemed aware of less and less. Sometimes, she fell; when that happened, Hilary couldn't get her upright again without help. Finally, Hilary checked her into an Alzheimer's home nearby. Hilary visits regularly, but the person she loved no longer exists.

She misses her partner all the time. Life has lost most of its joy. She stays busy much of the time, but there are 24 hours in a day, and alone at night in the house they built together, she feels lonely. She told us over coffee that she wanted to join a grief support group. She had called the person in charge of an existing group, and had been told she couldn't join because her partner wasn't dead. So she hadn't suffered a real loss. At least, she hadn't suffered a loss that qualified her for the group. How about a support group for Alzheimer's caregivers? But she wasn't a caregiver any more. She didn't need anyone to help her get through the grind of providing care every day. She needed help with her grief. Sorry. That kind of grief didn't qualify.

I called the man in charge of the grief support service to hear his rationale for excluding Hilary and others in her position. Talking to the press wasn't anything he wanted to do. Intead, he said he'd give my name and phone number to someone who handled media inquiries. The media person called, and she told me that the crux of these groups is "sharing common experiences, and it "could be uncomfortable" for a person whose loved one had actually died if she or he were asked to support someone whose loved one had not.

I guess it could, although having lost a partner through death not long ago, I don't see much difference between Hilary's feelings and mine.

There seems to be a hierarchy of grief. Once you're in a group, any kind of loss may be honored. The trick — surprisingly — is getting in.

How much sense does this make? Whether the person — the personality — with whom you had a relationship is taken by death or by dementia, the hole in your life is the same. Of course, if it's dementia, there is more of a slippery slope. At what point is the person no longer there? If a young superhero leaps tall buildings at a single bound, and an aging superhero needs two or even three bounds, does that count? Probably not. But when someone's life partner no longer recognizes her, that probably does.

What is Hilary doing? She's organizing a grief support group of her own. She spends a lot of time helping other people. This time around, she had wanted other people to help her. That was, evidently, too much to ask.


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About the Authors & Contributors

Daniel Jack Chasan

Daniel Jack Chasan

Daniel Jack Chasan is an author, attorney, and writer of many articles about Northwest environmental issues.