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I wonder if anyone has read (or is willing to read) "Counting on Kindness: The Dilemma of Dependency" by Wendy Lustbader. Or, alternatively, "Caring for our Own: Why There is No Political Demand for New American Social Welfare Rights" by Sandra Levitsky. Would love to discuss either of these books with smart people who understand about caregiving.

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I haven't, but both sound interesting, especially the second one. Have you read both or either of them?

I'll check them out at Barnes and Noble; it'll be a good excuse (not that I need one) to go to a book store.

Any initial thoughts you'd care to share? I would be curious on theories as to lack of demand for "social welfare rights", especially it if covers a broad range of rights from children to adults to elders. I'd also be interested in any causal factors, action or inactions of grass roots groups, and similar progressive actions.

I recall during the Vietnam War and the Women's Movement as well as the fight for the Equal Rights Movement that these political issues were literally on the minds of women I knew on a daily basis, and were integrated into our lifestyle just as much as e-mail is today.
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I've read both of them and have them on my Kindle to consult as and when the spirit moves me.

The first book is more interesting, at least to me. She focuses on the dilemmas faced by those who are dependent on others for help. IMO, she overlooks some of the simplest solutions, though. In one anecdote, she talks about a woman recovering from surgery who can't clean her own house, so her daughter cleans her house but neglects to vacuum under the dining chair, and the woman agonizes over whether to ask her daughter to do that, when the daughter is already taking on so much. Several solutions spring to my mind instantly, but apparently not to the author or the woman she's discussing.

The second book is interesting in some respects. She points out what we all know - that we caregivers are isolated from each other and generally too overwhelmed to focus on social issues, even our own. She also points out that new(ish) rules governing support groups and workshops offered by nonprofits specifically forbid any social advocacy agenda, which apparently was not the case in the past for other grass-roots group meetings. She describes this as a lack of "structural opportunities" to join in collective action on this issue. Warning - the book is a Ph.D. thesis and rather ponderously written. As in the phrase "These changes have attenuated - and in some cases severed - the structural link between collective attribution and mobilization." Just so you know. :-)
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Dark Money by Jane Mayer explains how social welfare rights went down the dumper. And why they’re not coming back anytime soon. 😟
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Thanks for that suggestion, BlackHole. I'll look into it. (I just knew there were other geeks on here! YAY!!)
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The dependency issue is certainly one that can affect caregivers, but also affects those who are cared for, at any stage. Strong people find it challenging to begin to rely on others. And I believe it not only affects self esteem, ability to cope and to heal, but contributes to long term decline as the loss of confidence and independence works silently to lower positive outlooks.

I've seen this in my own situation, and been extremely frustrated by it.

As to being isolated, I think a side effect of that is that caregivers are often "living in a different world", of constraints from our own physical issues, altered conceptions of time, priorities and options, and often face these disparities in dealing with those who might want to help. We don't see priorities in the same way.

I might feel my priority is to just get some much needed rest, but someone who wants to help wants to do it on his or her time off work. Long ago I reached a point of accepting priorities of care revolved around my father's and my needs, and but which don't arise from the down time of someone who's able to work freely w/o any family constraints.

I don't think people who are free to work, w/o family obligations, really understand how caregivers' worlds narrow down and how time assumes a different perspective. Sometimes it's as if everything is accelerated, such as those times when emergencies occur. And other times, it's as if time slows down and doesn't move.

It's a strange distortion of reality.



Mayer's book sounds like one that's definitely worth reading. I still wonder at the changes since the social activism of the late 60's and 70's.
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They are going on my reading list straight after 'Wilful Blindness' by Margaret Heffernan.

Which is shocking me for two reasons.

1. How important and pervasive the phenomenon is.

2. That Ms Heffernan wrote this book, which has been cited in all kinds of high-profile places, in 2011; and every kind of example in it continues unabated.
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I am in the early chapters of a new book by Sallie Tisdale. She is a Zen Buddist that has extensive palliative care and hospice care with RN training. "Advice for Future Corpses and those who love them, A practical perspective on Death and Dying". It's already given me some ideas to re-frame conversations with husband about his parents.
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GSA, thanks for posting and bringing this thread back. I recall reading literature on Zen Buddhism in my teens, and found it so comforting and inspiring. That was decades ago; it would be insightful to revisit those issues with the perspective of age behind me.

I'd be interested in how Tisdale integrates Zen teachings with PC and hospice, which I think are primarily western civilization related and/or influenced in terms of "religious" aspects.

One aspect I vaguely remember from my Zen readings was that the focus was on self development and enlightenment as opposed to worship. But that was when I was 16; I don't know how much of it I really understood.

And as I wrote elsewhere Shakespeare's King Lear is I think an excellent insight on sibling care or disinterest, as well as the process of aging itself.
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Tisdale has a recent article in Harper’s that was good and short too.
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