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.
Grief takes many forms

Grief takes many forms Norahayati Amin/Flickr

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.

Daniel Jack Chasan is an author, attorney, and writer of many articles about Northwest environmental issues. You can reach him in care of editor@crosscut.com.


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Comments:

Posted Fri, Mar 14, 6:42 a.m. Inappropriate

That's just brutal. To be feeling such a loss and then to be told you don't rate enough on the grief scale to join a grief support group? Wow. I can see the point of having similar losses within the group but do the losses have to be identical in order for people to support each other? I don't think so. If someone in pain reaches out to a support group they should be, well, supported! If they weren't going to accept her they should have been all over themselves to connect her with a group that could. If one couldn't be found they should have either started one they thought would fit or let her just join the grief group already in session. So much went wrong with this interaction and the grief support group should be thoroughly ashamed of themselves for causing even more suffering. That should be against their code of conduct.

The loss of loved ones through dementia is happening more and more and people need help dealing with the deeply painful and confusing loss. I have watched as friends went through this with parents and partners. It breaks them on all sorts of levels. Heart wrenching.

nwsrdr

Posted Fri, Mar 14, 8:43 a.m. Inappropriate

Sometimes it's a matter of knowing there are other options. I work for the Alzheimer's Association, Western & Central Washington. We are a non-profit that was started by family caregivers in 1978, and one of 80 chapters across the US. Hillary's experience is not uncommon, and it's unfortunate that someone along the journey didn't know to tell her about our programs and services. We offer over 100 support groups and I know she could find one that she'd feel at home in, and a safe, non-judgmental community in which to grief but also find joy. If you go to our website - alzwa.org - and click on Support Groups, you can do a search for a group. We also have a 24/7 Helpline - 800.272.3900. Hillary, YOU ARE NOT ALONE, I promise. And thank you for sharing your story - I think that this will help a lot of people who are challenged with similar road blocks. Please know that we are here to help.

kerikp

Posted Fri, Mar 14, 3:54 p.m. Inappropriate

I'm familiar with the Alzheimer's Association, you definitely are an important organization. Call the 24/7 Helpline above, there is someone there who will care enough to help your situation.

Posted Fri, Mar 14, 10:19 a.m. Inappropriate

Brutal indeed. It's also hard to find support if the person has died but it wasn't recent, like in the last year. Apparently your grief doesn't matter as much if you've been grieving for a long time.

Posted Fri, Mar 14, 8:43 p.m. Inappropriate

I have called and spoken to several Alzheimers group leaders. These leaders all feel that I am still a caregiver, since Maeve is still alive. But I do not feel like a caregiver any longer. I had cared for Maeve for years in our home and know what that is like. We no longer share a life together nor a house. This is grieving, pure and simple. I no longer have a relationship with the woman I am deeply in love with. It does not help when someone is insisting that I am a caregiver if that is not how I feel.

Benjamin, I agree with you about support not being there if the person you are grieving died more than a couple of years ago. It seems ridiculous to set such rigid rules.

Hilary

Posted Fri, Mar 14, 9:59 p.m. Inappropriate

Dementia in my family (that I know about): Grandfather, mother, older brother. I watched my mother descend into total body shutdown over a period of about five years. "At what point is the person no longer there?" I say not until close to the end, because she was always there, somewhere. Some times harder to find, and different people made better connections as she drifted off. And also near the beginning because she was no longer the same person; her intellect gradually evaporated. Grief? Of course; the loss is worse than death in many ways.

louploup

Posted Sat, Mar 15, 5:50 p.m. Inappropriate

The grief you feel when the person you have loved and lived with is still somewhere you can visit but not talk with may be of a different quality than if your loved one has died. Nothing is "final"; your life has not moved on; they are still out there but completely unreachable. I can't imagine anything worse.

sarah90

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