book: Hearts of Wisdom

I finally finished Hearts of Wisdom: American Women Caring for Kin, 1850-1940, by Emily K. Abel. I found it helped me step back from my own experience, see it in a much larger context. She ends the book with some lessons for the future, including this:

Women who view caregiving as a way to achieve greater intimacy with care recipients, to demonstrate competence, and even to attain "hearts of wisdom" want to be relieved of intolerable burdens, not to upload all their responsibilities on the state.

I got home Saturday night from a conference in Rochester NY, though it was a near thing because of a seriously delayed flight. I did get one call from John while I was away about a door inside the house that he thought had somehow become locked--it turned out it was just stuck. I had caught up on sleep some while away but I still felt very tired yesterday, setting back in after my trip. John went with friends to an art exhibit in Atlanta and had a good time.

Obligations

In her New Old Age blog, Jane Gross writes that at one point she suggested her ailing mother come live with her and her mother replied: “If I lived with you, I’d be the one feeling guilty all the time. I’d rather it be you.”

I'm reading Hearts of Wisdom: American Women Caring for Kin, 1850-1940 by Emily K. Abel. What strikes me in the first couple of chapters, on the 19th century, is the obligation women felt to drop whatever they were doing to care for family members in case of illness. I was startled by the story of a successful New York physician who left her work to help care for her sister in 1876. One of her patients wrote to her: "Being that you have no husband, your dear mother has the first claim to you." (p. 45)

Abel writes about the sense of competence women got from caregiving, but I'm more struck by how caregiving gave sometimes very isolated 19th century women community because other women came to help and they reciprocated by going to help in other households. How to avoid isolation? My grandmother's wish was to be cared for at home through the whole long process of dying of Alzheimer's and she had the money to allow it, but it looked awfully lonely to me.

Composing a Life

Someone recommended to me Composing a Life, by Mary Catherine Bateson. Bateson writes about her experience and four friends, focusing on how women since feminism have come to invent their lives as they go along. The recommendation came because I was talking about what I anticipate for my life as a result of John's illness and I said "It isn't who I expected to be."

Bateson's book does have a chapter on caregiving, but she focuses mostly on a very broad notion of caregiving that we do in the workplace and all sorts of settings, not just in the home. She emphasizes interdependence, complementarity, and collaboration (my first reaction is that doesn't do me much good with John).

There is something freeing about Bateson's notions of how life is more creative if it doesn't follow a linear path. And I'm thinking about her idea that parenting is an analogy for much of what we learn in maturity: "the willingness to relinquish control gradually and welcome the transition to an unknown future."

letting go of control

With my therapist yesterday what came up was that I needed to find ways of further letting go of thinking I can control things. I said things like:

• Nothing I can do will change the course of John's illness.
• Nothing I can do will bring John to peace or spiritual growth.
• Nothing I can do will give me back control over my own life.

It felt right to say those things, to lower my expectations of myself.

Someone recommended to me Learning to Fail: The Blessings of an Imperfect Life, by Phillip Simmons, who had ALS. He writes in the foreword:

When we stop seeing the world as a "problem" to be solved, when instead we open our hearts to the mystery of our common suffering, we may find ourselves where we least expected to be: in a world transformed by love.

Families and illness

I'm reading Families, Illness, and Disability by John S. Rolland. It is written for professionals, not for families, but I am finding lots of useful ideas. The first part emphasizes previous experience and family patterns, which I was already realizing. John's thinking is very much shaped by the death of his parents, mine by my own experiences of the death of my fathers and my grandmother, as well as having a sister with a cognitive disability.

The interesting immediate example of family patterns is that this weekend my mother was more positive about John, now he is ill, than she has been in the past. She and John went and picked raspberries while Elizabeth and I worked on her laundry.

What I like best in the book is not the theory but the case studies and the questions that Rolland suggests asking families. For example, in the chapter on intergenerational patterns he suggets asking families about previous experience, about:

What would they want to do similary or differently? Are there aspects of the current situation that they feel confident, insecure, or terrified about?

I feel terrified that at some stage John will want my attention constantly. But the book is helping me see that now is the time to make a transition from the crisis (or at least acute adjustment) stage to an early chronic stage where I have a last change to pursue my own goals while I still have the opportunity and can encourage John to have as much autonomy as possible and take responsibility for his own choices.

book: Three Dog Life

I'm reading A Three Dog Life, by Abigail Thomas. Her husband suffered a traumatic brain injury, which left him unable to care for himself and psychotic. She writes about how her life changed and about her dogs. To me, her story seems a bit muted, with the dogs for light relief. I would have liked to hear more of the raw pain. But that is me; I suspect what she provides is all that most readers want to hear.

I do like her honesty about the process of learning what she can do and what she cannot manage, coming to terms with her husband staying in a facility. She says she couldn't bring her husband home: "I wouldn't be Rich's wife; I would be his jailor and my own. This was a sacrifice that made no sense; I couldn't do it." She says it took her years to be able "to say the words I want to live my life without feeling unnatural, selfish, cowardly."

What seems to have brought her peace was feeling that her husband would have more appropriate (specialized) care at the facility than at home. I wish I thought that was usually available when needed.

Graboys, Life in the Balance

I just read Dr. Thomas Graboys' book Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia. I liked it very much, but it is definitely a memoir--the focus is on one person's feelings, not on providing useful information.

Dr. Graboys is a cardiologist who was diagnosed with Parkinson's disease and Lewy Body Dementia in his early 60s. He writes a lot about his denial and how hard it was for him to give up his work as a doctor. He lives in a privileged world (he and his wife have a full-time housekeeper!) and had a very high opinion of himself. Some people might find that annoying in the book, but I like his honesty in admitting it and writing about how much he is losing to dementia.

I've heard some frustration about the book in the Yahoo LBD spouses group. An interview with Graboys on Good Morning America last week talked about Parkinson's, not Lewy Body Dementia. But in the book it seems to me he is quite clear about Lewy Body Dementia, and I gather he also was in an NPR interview here: http://www.wnyc.org/shows/lopate/episodes/2008/04/10/segments/96594

The book is certainly only about the early stages of the disease, and a fairly gentle version at that (no significant hallucinations yet). Graboys says he cannot bear to think about what it will be like when the disease progresses. He does imply that he would wish for assisted suicide at the point where he no longer can recognize the members of his family.

To some extent this book is a contradiction in terms--how can someone write about his own dementia when that dementia limits his ability to understand what is going on with him? I think he does a remarkable job of getting past that, but there are ways in which he does not understand how bad it is (and his fears have kept him from doing a lot of research on the disease). He is also a bad role model in a couple of respects, particularly that he is still driving.

What I like about the book is that it gives me a sense of what it would be like to be in John's head. I don't think John has felt all the feelings Graboys writes about but I hope John will read the book because it might give him a model to help him recognize his own feelings.

I would recommend this book to anyone who has a family member in the early stages of the disease, for that glimse of what it might feel like to be the person with LBD. It doesn't give much sense of his wife's perspective but the situation itself is gripping--his first wife died of cancer and he remarried just as he was beginning to show symptoms. The book includes letters from his children that seem to me quite open about the different feelings they have. But again it is early stages, he doesn't require their care yet. I hope in a few years his wife or one of his children will write a continuation of the story.