My hospice experience continues this month with bereavement training. It’s different than hospice. The class leader puts it succinctly. “Hospice ends”, she says. “Grieving never does.”
I want to also take the training for working with clients with Alzheimer’s. But I sense I should take it slowly. Let ALL the lessons sink in, stick with this next phase for awhile. See where it takes me. And see where I fit in.
One thing sticks in my mind from the training, and that is, with Alzheimer’s patients, you need to go where they are. Be where they are. Not insist they come back to you.
I think this must be harder for the friends and families, who are constantly reminded of the loss taking place in front of their very eyes.
For us volunteers, who come in at the end, perhaps not as hard. We’re there for a period, we only deal with what’s in front of us. There is humor, and tenderness, and comfort. Respite and peace.
And then the need is gone, and we move on.
Bereavement services start, my supervisor says, when the cards and casseroles stop coming.
My daughter recommended this movie about Alzheimer’s, “Grace” . Grace is a woman whose husband recorded her last years, showing the progress of her disease.
When I researched it, I find this moment compelling. In it, Grace anticipates her appointment with the hairdresser that day. But she’s already been to her appointment. The look on her face when she is told, breaks my heart.
If this were my mother, I’d probably do the same thing–try to bring her back to this reality. “Mom, you went already–don’t you remember? Mom!”
As an outsider, I can see that correcting Grace only brings fear (she realizes something is terribly wrong) and anguish (her excitement and happy anticipation is washed away.)
What does it matter if she’s forgotten? If you tell her she’s already had it done, she’ll just forget it again. And go through the fear and sadness again. And again.
If I meet her where she is–anticipating her appointment with gusto–maybe she wouldn’t have to go through that. (After all, she’ll also keep forgetting the appointment doesn’t come.)
If I were a volunteer working for this person, I might say, “You look so happy! What do you love about getting your hair done?” Or perhaps, “How will you get your hair styled today?” I would let her tell me her stories. I would let her hold on to her happiness, and her plans.
So there is hospice. And there is grieving. And there is Alzheimer’s, where so much of the grieving goes before.
Where do they all connect?
It’s about being, not doing. Being in the moment. My supervisor says, “There are a lot of recovering ‘fixers’ in hospice!” I am learning–slowly–not to fix. Or do. Just….be. (Trust me, trying not to fix things is really, really hard.) (REALLY really hard.)
It’s being present–being a witness to what is going on for that person, in that moment.
It’s being connected. And accepting that person for where they are, right now.
I remember a friend who told me years ago, “I like to believe people are all doing the best they can.” When people fail me, or hurt me, I try to remember that.
And when it’s me doing the failing, and the hurting, I try to remember that, too.
Hospice is teaching me that big, deep lesson.
It feels like amazing grace.
Luann Udell 
This is an important lesson at the other end of life, for parents.
We often cannot – or should not – step in to fix things for our kids.
It is very very painful to realize that you cannot prevent your children from learning some things the hard way.
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What a wonderful post. I immediately sent it to a friend who is dealing with his partner’s mother’s journey through this horrible disease. I think it will help so many to read this and start looking at their situation differently.
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Lovely post, thank you.
I remember very well the profound relief that both my grandmother and I felt when I located her in time. Once I found where she was (1968) and talked to her *there* and *then*, her apparent quality of life went way up. She lived another 2 or 3 years, but it was always after Thanksgiving and before Christmas the year I was four.
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That….is INCREDIBLE, Melody. And what a beautiful time to be “stuck” in. I’m so glad you saw where she was and went with her there.
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A compelling and compassionate post. Thank you.
I wish I had understood this while going through my father’s slow decline into Alzheimer’s. I am sharing it with some friends and family, with the hope that it may help others.
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Absolutely go where they are. Alzheimer’s patients, like my husbands’ mother, are living totally in the moment. There is no ‘before’ or ‘tomorrow’, there is only this moment, right now. I’ve become an expert, for better or worse, at creative fabrication. If mom says the house she moved from is a little white house on a hill (brown brick in a small, flatland neighborhood), we’ll talk about the rooms in that house and how she loved living there and when she’s moving back, till the cows come home. I don’t ever tell her no, I’ve just learned to dance delicately around certain subjects. She is much happier since I’ve learned to stop dragging her back into the ‘real’ world.
Of course, the things she and dad didn’t do to prepare for this will haunt me until I die. What a mess to clean up!
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Sounds like you instinctively did exactly the right thing, Susan–you are amazing!
Not very many people are prepared for what your parents are going through, if that’s any comfort. Everyone things they have another year to get ready. I hope you have people & agencies to support you as you deal with the situation–it helps!!
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I really liked your post today for the Fine Art Views newsletter so decided to check out your blog, and found this post on Alzheimers. My Dad slowly fell into a milder form of “dementia” which the doctors would not call Alzheimers, and he became extra sweet and childlike. My Mom, however, suffered full blown Alzheimer’s on top of having bi-polar illness all her life. She became increasingly difficult to manage, a danger to herself and sometimes others. I, as an only child, recently separated from my husband and mother of a grown son, was on my own taking care of my parents for quite some time. I sometimes felt so much resentment and was so tired all the time. It was hard to remember that I loved Mom when she was being horribly mean and nasty. Then she could turn around and be so sweet for a while. After having her in five different homes and always bringing her back (she would beg and tell me that she “would be good.”) I had to put her in a home for good…she attempted to kill my Dad. On that day when I took her to the home she slapped me and told me she hoped my son would do the same to me someday. I was devastated. The next time I visited her she was so happy to see me with no recollection of the day she slapped me…she did remember me and my Dad almost to the end…but could not be taken out any where as she would cause terrible scenes. She had always had dignity and now that was gone. My heart ached for her and I did a painting that ended up representing that pain called “Forget-Me-Not”. When she died I have to admit it was a relief for everyone…most people had not known of her struggle all her life with mental illness (she was embarrassed and stigmatized) so I gave a loving eulogy that impressed family and friends and they came to realize what a special person she had been and how much she had loved everyone in spite of her immense pain and fear of life.
Thank you for your words of wisdom regarding this devastating illness.
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Karen, you took a situation many would have given up on (and with good reason!) You not only persevered, you found a way to transform that pain into something beautiful and healing for so many other people. You are a hero in my book!
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