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#208093 - 10/01/10 08:30 PM Review of "Passages in Caregiving"
Princess Lenora Offline
Member

Registered: 11/11/04
Posts: 3503
Loc: Colorado
Review of Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy

Gail Sheehy is a writer who became well-known with her books Passages and Hillary’s Choice, a biography of Hillary Clinton. Sheehy built her career as a literary journalist.

In Passages in Caregiving, Sheehy uses her journalistic style to report on eight stages of caregiving, which she calls “Turnings.” The stages range from “shock and mobilization” to “the long goodbye.” Sheehy offers strategies for solving the problems associated with each turning.

Throughout the book, Sheehy offers a memoir about caring for her ailing husband for seventeen years. He’d been a foremost pioneer in the editing and magazine industry, as well as a professor. She takes the reader on their journey in personal narrative. There is no guidebook for such an individual path, so Sheehy shows the reader how she literally took one day at a time. She says she attended Alcoholics Anonymous meetings for support and stability.

Sheehy also includes the narratives of others who are caregiving. These stories were obtained when Sheehy had the opportunity to interview them at crucial turning points. Additionally, there is an extensive index for ease of reference to any topic, ranging from objective needs (finding a hospice) to subjective feelings (such as guilt). Resources are included in the book, but some of them are not available to the typical American caregiver. For example, Sheehy suggests hiring a research guide to navigate the internet for you, summarize the findings, and report the results to you.

In his late seventies, my stepfather is the primary caregiver for my mother, who has terminal cancer and Alzheimer’s. Their story is one millions making due within the confines of Social Security and Medicare.

Herein lies my inability to relate to Gail Sheehy’s journey. Yes, she writes about universal emotions like anger, anxiety, and enduring love. However, I was rankled by her assumption that there is financial equality when coping with challenges. For example, she flew her husband to France to luxuriate in Monet’s gardens (Dad will be fortunate to purchase a calendar of Monet’s images for Mom). Sheehy went on a daylong retreat for caregivers to walk a labyrinth. (Thanks to state-aid respite, Dad gets Monday mornings off to get groceries). When Sheehy’s husband Clay decides he wants to work, they buy another house in Berkley. (Dad will be lucky not to lose his one house due to medical bills). I felt as though Sheehy’s inclusion of the minimal resources for low-income citizens was perfunctory and patronizing.

Sheehy says, “To avoid high cost, low competence, and maddening bureaucracy, many care seekers find home aides through word of mouth, commonly referred to the ‘gray market.’ . . . “The going rate for gray-market health aides is $20/hour plus overtime.” Who can afford that?

Another area of disconnect was in Gail Sheehy’s presumption that families can overcome their conflicts to come together for caregiving. That leaves out families with felons who cannot face each other, or where it would be deleterious to do so. Her position is overly optimistic (or mine is too pessimistic).

As always, Gail Sheehy’s writing is topnotch. How can a reader find fault with this award winning author who adeptly wove the narrative style with journalism? I appreciate the choices she made to be a responsible caregiver, and the generosity of her sharing. Passages in Caregiving will be on my shelf for reference on some challenges that apply to both the haves and the have-nots.

Review completed by Lynn C. Tolson

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#208221 - 10/06/10 03:32 PM Re: Review of "Passages in Caregiving" [Re: Princess Lenora]
Princess Lenora Offline
Member

Registered: 11/11/04
Posts: 3503
Loc: Colorado
I'm bringing the forward because if you are a caregiver, you will benefit by reading this book, despite it being written by someone with funds some of us may not be fortunate to have. Also, I heard on TV about a site FTC.org about reducing the high costs of funerals. We have to think about this stuff?

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#208222 - 10/06/10 05:05 PM Re: Review of "Passages in Caregiving" [Re: Princess Lenora]
Edelweiss2 Offline


Registered: 09/09/08
Posts: 779
Loc: American living in Germany
I really appreciate this information, Lenora. I moderate a caregiving group online. May I quote some of your infomation?

Quote:
...Sheehy’s inclusion of the minimal resources for low-income citizens was perfunctory and patronizing.

Yes, I agree.
_________________________
A friend is a gift you give yourself.
-- Robert Louis Stevenson

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#208234 - 10/07/10 05:32 AM Re: Review of "Passages in Caregiving" [Re: Edelweiss2]
Princess Lenora Offline
Member

Registered: 11/11/04
Posts: 3503
Loc: Colorado
Hi EW. I wonder if you can get the book yourself and see if you feel the same way about that statement re: finances. I thought long and hard about whether or not I was biased against those with unlimited resources. I just think how we live in this world is different based on how much money is available. She could have 24/7 365 days of skilled nursing care at home for her husband. It's not equal for all here.

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#208271 - 10/09/10 10:50 AM Re: Review of "Passages in Caregiving" [Re: Princess Lenora]
dejavu Offline
journeyman

Registered: 08/16/06
Posts: 319
My mother had ten years of increasingly poor health before her death, including several strokes, etc., and it really was true for us that so much depended on our financial means, which fortunately weren't too bad, but also so much depended on our family remaining able to help out. There were six 'children' in our family. One is disabled, but it definitely took all five of the rest of us to help out at various times and in various ways over those ten years. I don't know how smaller, more spread-out (or dysfunctional) families cope.

And the caregiving definitely took its toll on us (two sisters divorced during this time, another had mental illness problems, so a lot of the work fell on my brother and me), but everyone did what they could or we wouldn't have gotten by.

Carolyn


Edited by dejavu (10/09/10 10:51 AM)
_________________________
My website http://www.carolynagosta.com

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#208666 - 10/30/10 12:42 PM Re: Review of "Passages in Caregiving" [Re: dejavu]
DJ Offline
Member

Registered: 11/22/02
Posts: 1148
Loc: Maryland
This is very interesting from the standpoint of what money can and can't buy, and whether being able to afford to buy more means that you're ultimately better off.

My dad invested well and he and mom moved into a condo in a retirement community with continual care. Dad died two years ago, mom's still there. Even though she has plenty of money, and I know she's way better off than so many others, still I want to emphasize that it's a crap shoot in some ways. Her biggest foe right now is the doctor on staff!

After dad died, the doc gave my 90 year old mom some Ambien, but also statins with side effects that made her loony. She weighs less than 120 pounds. My siblings (I live out of state) had to go to the ER 3-4 times in 6 months. In the ER they gave her Haldol! After my sister did some internet research about the side effects she actually went into mom's apartment and switched out the meds with vitamins. Within two weeks of this drug vacation, mom was back to her normal self. She also said she didn't want the meds. We told the doc to quit giving them to her. We only know by reading the bill what she's being given.

We hired a daytime companion for her -- she could have maybe hired a full-time nurse for a year before her money ran out, so we chose to hire the companion but when the companion wasn't there (at night) mom fell and broke her shoulder and was moved over to the hospital wing. They medicated her again for the pain and then pointed out that she didn't pass the memory test so they wouldn't let her return to her apartment. She also has macular degeneration which has the effect of visual hallucinations. The idiot social worker on staff pointed out that mom couldn't write the numbers of the clock face, a standard test for mental acuity. Anyway, now she has a room in the memory care unit of the hospital wing where she gets adequate attention but when she's her normal self (which is when she's not on any meds) she's depressed about being over there.

We're still battling the doctor. Mom complained about not feeling well, she was very weak, and started sleeping all the time. So we noticed on the bill that they'd started giving her statins for cholesterol and estrogen (!) to bring up her weight. In a conference call with her "team" which includes the social worker, a nurse, a physical therapist -- I suggested they give her better food. At least give her choices. When my sister takes her out to eat, she gobbles down grilled cheese. She'd eat those all day. My sister told the doctor to give her oatmeal instead of cholesterol meds and he said that it hasn't been "scientifically proven" that oatmeal lowers cholesterol. Still mom says she thinks it's pointless at her age to be taking medication.

Re: the doctor, we're bringing a friend from the outside who's a doctor and can strong arm this guy. He's telling us that her doc. is not respecting patient's rights. Her doc has threatened to drop her as a patient if we "interfere" too much. I'm suspicious that the doc gets bonuses from the drug companies for meeting a quota.

So, my observation is that while having adequate money and being in a fancy retirement community is a great benefit, it's not a panacea. If we weren't involved in her care, she'd be a walking -- or reclining -- zombie. For some people putting their parents away, trusting in the "expert care" and forgetting about them would be fine. But they're kidding themselves if they think everything's wonderful.
_________________________
http://dcvance.wordpress.com/

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#208675 - 10/30/10 06:10 PM Re: Review of "Passages in Caregiving" [Re: DJ]
Anne Holmes Administrator Offline
Boomer in Chief

Registered: 03/12/10
Posts: 3160
Loc: Illinois
This is a hugely important topic. Especially as so many of us are caregivers -- and as caregivers we REALLY need to be able to take care of ourselves first. If we don't - how can we care for the loved one?

Here is some interesting additional information on this topic, which comes from a survey AARP recently did which interviewed Baby Boomer-aged women on the topic:

• Six in ten (59 percent) of us haven’t determined how we’ll pay for our long-term care needs.

• 40 percent of us don’t know that long-term care is more than nursing home care. Long-term care is a combination of elements that enable us to live as well as possible how and where we want, including daily help needed if we develop chronic conditions that last a long time. These services come from many sources.

• Only 23 percent of us know we’ll likely pay for future care needs with personal savings. Medicare and private health insurance don’t cover long-term care services.

“Studies consistently show women are the biggest users of long-term care, and we’re more likely than men to need these services,” says Alyson Burns, Director of AARP’s Long-term Care Awareness Campaign. “Yet we are so busy with our own hectic lives and caring for others that we’ll only address our own needs after everyone else’s. Taking a little time and a few easy steps can provide for peace of mind now and in the future.”

In other words, women today have more options than ever before and assume many more important roles than ever before – from caring for our loved ones (both younger and older) to pursuing vibrant careers and lives. But by not planning for our futures today, many of us are unknowingly leaving decisions about our futures to others, including decisions about our long-term care needs.

If this includes you, you may be interested in the fact that this month AARP is launching a campaign called "Decide.Create.Share.sm" to raise long-term care awareness and planning among women nationwide.

As part of this effort, AARP is offering free online resources through its website (www.aarp.org/decide), which you can use to discuss and plan for their future needs.

Fortunately, there are some practical things we can do today that cost nothing and let us stay in charge later, including:

• Know your family medical history – Did Aunt Mary have diabetes? Learning your family medical history and adopting healthy habits can protect against chronic conditions you might be at risk for.

• Could home sweet home be sweeter? – Do you have lots of stairs to navigate? Or a well-designed home with a bedroom and full bathroom on the main level? Take stock of your home. Ask yourself if it will suit your changing needs.

• Comfy with your community? – What amenities does your community offer? Do you have access to all the transportation alternatives, activities and services that are important to you? Make sure it offers what you need and want.

Have the heart-to-heart with your loved ones – Talk with your family about your future financial and medical wishes to ensure they are aware of what you’d like. (BTW: I'm trying to schedule an NABBW teleseminar with Julie Hall, author of "The Boomer Burden" ,which we have reviwed on the NABBW site, in November. I'm hoping to get it scheduled before US Thanksgiving, so we can learn from it and then schedule these heart-to-heart talks while we're together with our families at Thanksgiving.)

• Get up close and personal with your finances – What options do you have now? Or what care options would you want for the future? Think about your financial situation and learn the costs of long-term care.

Explore your options – If you're not sure what they are, you can find help at [url=ww.aarp.org/decide]AARP - Decide[/url] to get the resources to explore other easy steps and start thinking about your future.

This is really important!

Also, I will be on a conference call on this topic with Elinor Ginzler from AARP next week, and if you have any questions you'd like me to be sure to ask during the call please let me know.


Edited by Anne Holmes (10/30/10 06:14 PM)
_________________________
Boomer in Chief of Boomer Women Speak and the National Association of Baby Boomer Women.
www.nabbw.com
www.boomerwomenspeak.com
www.boomerlifestyle.com
www.boomerco.com

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#208686 - 10/31/10 01:58 PM Re: Review of "Passages in Caregiving" [Re: Anne Holmes]
dejavu Offline
journeyman

Registered: 08/16/06
Posts: 319
DJ - you're so right that family members need to be 'in the loop' as far as their parents' care goes - it's not enough to make sure they have caregivers if you live too far away to visit and see things for yourself - you also need to be sure those caregivers are reporting things as they really are. And even if you ARE able to visit your parents or caregive for them yourself, there's too strong a tendency on the doctors' part sometimes to sedate these elderly into submission. It happened to my mom, too. I don't think the doctors are evil, usually, but they're jaded. They see so many elderly patients die that they're not as attuned to each specific patient, and sometimes an outside doctor is your only hope. Good luck with your mom.

Carolyn
_________________________
My website http://www.carolynagosta.com

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#208879 - 11/10/10 12:57 AM Re: Review of "Passages in Caregiving" [Re: dejavu]
chatty lady Offline
Writer

Registered: 02/24/04
Posts: 20267
Loc: Nevada
Praying for your mom dejavu and all our elderly moms and dads.
_________________________
Take a peek at my BLOG:

http://charleen-micheles.blogspot.com/


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#209214 - 11/28/10 05:09 PM Re: Review of "Passages in Caregiving" [Re: chatty lady]
DJ Offline
Member

Registered: 11/22/02
Posts: 1148
Loc: Maryland
I came upon this article about some of the drugs that my own mom has been prescribed over the years. This talks about how flimsy FDA approval really is. Very very scary and very very maddening:
http://www.alternet.org/health/148907/15_dangerous_drugs_big_pharma_shoves_down_our_throats/?page=3
_________________________
http://dcvance.wordpress.com/

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