Gail Sheehy: "Passages in Caregiving"
http://thedianerehmshow.org/shows/2010-05-13/gail-sheehy-passages-caregiving
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More than 50 million Americans are caring for a spouse, parent or relative who has a serious illness. Author and journalist Gail Sheehy identifies eight crucial stages of caregiving, drawing on her experience caring for her husband, founder and editor of "New York" magazine Clay Felker.
Guests
Gail Sheehy
author of 15 books, including "Passages."
Comments
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Gail Sheehy has been a guiding light in my life. Now again she is leading the way. See more in Gail Sheehy's New Book Offers Comfort for Caregivers www.desperatecaregivers.com
Would Ms. Sheehy please give us an update on those wonderful caregivers, the so-called Jersey Girls or Jersey Moms, about whom she wrote so wonderfully after 9/11.
I have a friend who recently was the caregiver for her husband who after 2 years of brain cancer passed about 6 months ago. She is in her early 30's and has 2 very young children. Could your guest discuss dealing with life after the person has passed?
Nursing homes now cost thousands of dollars a month, MEDICAID pays part of this expense. Why doesn't State and Federal funding cover in-home care up to these amounts? Currently in Oklahoma, as in many states, cutbacks are occurring in the Advantage Program, which helps individuals stay in their own homes. Is this lack of funding for in-home care due to the lobbying of nursing homes? Also, while in nursing homes, ALL prescriptions are covered, while if living at home this is not the case. The system is configured in such a way as to force individuals into nursing homes. Why?
Some of us grew up with parents who were loving, supportive, and nurturing. Some of us did not. What advice does Gail Sheehy have for those of us who grew up in dysfunctional families?
Our family struggles with having aging parents and really not having the resources to hire private care coordinators. We also want to be careful not to take control away from our parents, whose bodies are failing, but who are still doing well cognitively.
Thank you for sharing your thoughts and advice. I am 32, and I had leukemia twice in the last five years. I firmly believe that the greater challenge lies in being the caregiver. As a patient, you are active in your fight against disease, but caregivers can only watch and worry...they can support and advocate for the patient, but therein lies the extent of their power. Your insight and advice is invaluable to anyone in a caregiving position.
The interview was great and as usual Gail is helping to guide the 'sandwich' generation on the greatest challenge many are facing.
There are a number of professionals who are available to help patients and caregivers. The key is for caregivers to know there is help and be open to it.
Can't wait to read the book!
Anne Llewellyn, RN-BC, MS, BHSA, CCM, CRRN
Editor
Dorland Health
www.dorlandhealth.com
Found this while searching
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www.geripal.org
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A few years ago my father was diagnosed with Altzheimer's. Fortunately, my brother had just relocated to OK and so moved in with my parents. I also was able to lend support. After a couple of years he became bedfast and at that point we consulted with a nurse friend. She put us in contact with hospice. They provided a nurses aid 5 days a week and weekly nurse visit and Medicare paid for it. A nurse freind volunteered to give him haircuts. He eventually passed away at home. Without assistance from hospice, we would have had to put him in a nursing home at a much greater cost to medicare. I would encourage people to inquire about hospice, even if they don't know that the illness is imminently terminal.
I've been surrounded by cancer for 16 odd years. First my partner (whom I now take care of: this resulting in massive radiation (given 3 months to live before a last ditch effort) from 3 brain tumors leaving her cognitively impaired. At 57 she has been tested and shows ability equal to that of a 12 year old.) Me, 3 years ago diagnosed with stage 4 colon and liver: 1 in 5 survival...I am one of those. Ms. Sheehy has obviously done well with her personal journey and I am truely happy for her. Honest. Unfortunatly caregiving and surviving cancer is unique for every situation and person. The socioeconomic backround of each story,how to apply that personal level is the crux of the issue. The meeting she suggested with a case manager, for a "minimal cost" most of us can not afford. Certainly not the care which follows. I do believe we are speaking about different "stratas" of care based upon financial possibilities. I found this show suited for those fortunate enough to live in the world Ms. Sheehy lives in. I believe she is the minority not the majority. My partner and I do fine with what we have but after 16 years of living this experience I feel qualified to say, you do not speak for the masses but for the upper middle classes who have the means to afford all of the wonderful solutions you have presented on todays show. Your energies are commended but we need people with your ability to help those who have so much less. I do not mean to denegrate your sorrow in any way but perhaps with time you might consider researching and helping those of us with less fortunate circumstances by outlining an approach to the problems you discussed today for those with an income under $25.000. I'm one of the fortunate as I have insurance (kicked in 30 days before diagnosis) and my partner has Medicare. Take those away from this equation and the hole gets so much deeper, the numbers of those affected gets so much larger while the results become so much more dire.
I was both primary caregiver to my parents and care recipient during my decade of caregiving. It was in the last phase (or passage?) of eldercare, which was a 4-year, live-in situation with my centenarian mother, that I was diagnosed with colorectal cancer. My husband and I came home from the colonoscopy that identified the cancer, called my faraway siblings, took a breath, then resumed the inviolable schedule of cooking and eating dinner with my mother. I continued to care for her through treatment, with unwavering physical and emotional support from my nominated-for-sainthood husband and sporadic help from my sisters, until her death, which came just shy of her 102nd birthday. That was two years ago and we’ve finally sold the house we shared with her and are moving on to our “new life.” We’re 60.
It is imperative that families and caregivers, especially women, take into account the financial sacrifices that caregiving can require. It’s not only lost wages in the immediate term, but lost contributions to pensions, Social Security, and health insurance. In my case, we were fortunate that my husband had a secure job which earned enough to allow for me to provide essentially unpaid care to my parents, but our commitment to caregiving meant we couldn’t follow career paths that would have taken us away from upstate New York’s ailing economy. These sacrifices were not shared by my siblings.
Tricia
http://www.elderland.net
I find the role of the "in-law" caregiver very difficult. When my in-laws were aging after my husband had died years earlier, it was difficult in many ways. I wasn't their "real" daughter and they didn't want me making decisions for them yet they weren't able to do if for themselves. They struggled with needing me and not wanting to need me, which of course can happen with any elderly person.
Diane said, and Gail agreed, that LTC insurance is limited to $115,000 per year. That is incorrect, the limit is much higher, $500 per day, which is more than adequate to pay for care in every state except hawaii and alaska, and almost enough in those states. Other comments seemed to indicate that Medicare has a "wonderful" program called PACE. Medicare is a livesaver for destitute people, but there is nothing wonderful about it. You'll have to spend down your assets and give up your income, they can even put a lien on your assets including your home. Medicaid primarily pays for nursing home, home care programs are extremely limited. And what's worse, with state budgets being bankrupted by medicaid increases, cuts are likely.
LTC insurance is very affordable for the vast majority, especially if they don't wait until they're over 70 or unhealthy. The earlier the better. Even in your 40s, people can and do get diagnosed with cancer and illnesses that might make the insurance expensive, it's never too early to purchase. The interview was informative, but most people should consider LTC Insurance unless they are exceedingly poor. Even then, the kids may prefer to pay for a policy rather than have to worry about what to do with mom when she can't do for herself. Just my biased opinion, as a seller of LTC insurance.
MY DAUGHTER HAS BEEN A BAY AREA GERIATRIC CARE MANAGER FOR 10 YEARS. SEEING HER COMFORT HER CLIENTS WITH DEMENTIA AS THEY DECLINE OR APPROACH END OF LIFE, HAS GIVEN ME A NEW FOUND RESPECT FOR THOSE WHO HAVE THE DEDICATION AND PATIENCE TO CARE FOR SOME OF THE MOST VULNERABLE MEMBERS OF OUR SOCIETY. I AM TRULY AMAZED BY THE RESPONSE FROM THE FAMILIES AS HER LOVING CARE MAKES A POSITIVE IMPACT IN THEIR LIVES.I IWWW.BAYAREAGCM.COM
MY DAUGHTER HAS BEEN A BAY AREA GERIATRIC CARE MANAGER FOR 10 YEARS. SEEING HER COMFORT HER CLIENTS WITH DIMENTIA AS THEY DECLINE OR APPROACH END OF LIFE HAS GIVEN ME A NEW FOUND RESPECT FOR THOSE WHO HAVE THE DEDICATION AND PATIENCE TO CARE FOR SOME OF THE MOST VULNERABLE MEMBERS OF OUR SOCIETY. I AM TRULY AMAZED BY THE RESPONSE OF THE FAMILIES AS HER LOVING CARE MAKES A POSITIVE IMPACT ON THEIR LIVES. WWW.BAYAREAGCM.COM
MY DAUGHTER HAS BEEN A BAY AREA GERIATRIC CARE MANAGER FOR 10 YEARS. SEEING HER COMFORT HER CLIENTS WITH DIMENTIA AS THEY DECLINE OR APPROACH END OF LIFE HAS GIVEN ME A NEW FOUND RESPECT FOR THOSE WHO HAVE THE DEDICATION AND PATIENCE TO CARE FOR SOME OF THE MOST VULNERABLE MEMBERS OF OUR SOCIETY. I AM TRULY AMAZED BY THE RESPONSE OF THE FAMILIES AS HER LOVING CARE MAKES A POSITIVE IMPACT ON THEIR LIVES. WWW.BAYAREAGCM.COM
MY DAUGHTER HAS BEEN A BAY AREA GERIATRIC CARE MANAGER FOR 10 YEARS. SEEING HER COMFORT HER CLIENTS WITH DIMENTIA AS THEY DECLINE OR APPROACH END OF LIFE HAS GIVEN ME A NEW FOUND RESPECT FOR THOSE WHO HAVE THE DEDICATION AND PATIENCE TO CARE FOR SOME OF THE MOST VULNERABLE MEMBERS OF OUR SOCIETY. I AM TRULY AMAZED BY THE RESPONSE OF THE FAMILIES AS HER LOVING CARE MAKES A POSITIVE IMPACT ON THEIR LIVES. WWW.BAYAREAGCM.COM
I must agree that it's a different story when you have resources or not. We fell into the "some resources" category: SS disability and payments from a private disability policy, plus VA health care. We still barely scraped by, and hiring in-home help was totally out of the question. Those years of total caregiving were the hardest of my life so far.
I am a nursing educator and a daughter who has been a caregiver for my parents along with my siblings. I agree with much of what Gail Sheehy said on the program today but I am concerned about her comments regarding hiring caregivers on your own because the cost is less and they can "do more." While I am not saying people should never hire a private caregiver, there can be risks associated with this. It is important to note that when an individual works for a home care agency, they are required to take and pass both a criminal background check and a drug screen. There is liability coverage, competency assessment and supervision is required. Bottom line - in my experience, a family needs to be actively involved on a continuous basis in caring for their loved ones while augmenting that care with carefully chosen caregivers. A resource you might want to look at: http://www.aarp.org/family/caregiving/
We do not have long term insurance; everything is out of pocket and that pocket is shrinking. My husband is totally disabled, cannot see or walk or regulate his bodily functions. This started 4 years ago in his 50s. I lost my job. He also developed cancers and I find life an unrelenting struggle. Neither wealthy or famous, close friends have faded and there is no family to call in for support. I also have not found resources that are available to deal with these issues and competent caregivers are few and far between. I found this radio segment difficult to relate to and fail to see any upside in our situation. I must agree that little hope is offered for those without means. I also fail to understand why only nursing homes are subsidized and people cannot be helped in their homes, and also why the uninsured pay more than do insurance companies.
I listen to your show from 8 PM to 10 PM in south central Iowa, and I find your discussion guidance to be extraordinary. Thank you for providing this kind of quality show.
I also would like to comment on Gail Sheehy's conversation with you last night. I find her insight to be on the nose in most situations; however, she misspoke when she talked about contacting a Geriatric Case Manager. The first contact anyone should make when dealing with the elderly is the area agency on aging. Every state has a department to provide informed information on aging, caregiving, and services available. While not everyone is eligible for Medicaid, everyone over 65 is eligible for services of an area agency on aging.
In Iowa, the Departments of Human Services and of Aging have a program called the "Elderly Waiver" which carries out the instructions originally found in the Older Americans Act. Other states have similar programs, if not through their Medicaid department, then certainly through the area agency on aging.
Thank you.
I, too, gave up a job that I loved and moved away from my husband and son (14 at the time) to help my parents 200 miles away from my home. I did not have to do 24/7 care, so I did get a job, but I went to their home every evening after work and every Saturday to clean and every Sunday to take them to church, plus taking time off to take them to doctor appointments. I would do it all again, and never asked for any compensation from my parents. My father passed away with Alzheimer's Disease and my mother now lives with one of my sisters. Don't focus on what your siblings didn't do, rather on the relationship you had with your parents in their final life stages. You did a great job and can pat yourself on the back for it.
As a daughter who cared for her aging father for 20 years and the author of Handbook of Geriatric Care Management, I would like to applaud Ms. Sheehy. She has midwifed us through so many life passages - from menopause to now caregiving. All the knowledge that professionals in the field of aging and geriatric care managers could muster to tell the care giving tale, can't hold a candle to the explosive light, Sheehy has put on this heart wrenching passage. Plus ,she has pointed that light on the perfect national answer to this “everyfamily" dilemma- a geriatric care manager.
Cathy Jo Cress
http://www.agingfamilydial411.blogspot.com/
As a daughter who cared for her aging father for 20 years and the author of Handbook of Geriatric Care Management, I would like to applaud Ms. Sheehy. She has midwifed us through so many life passages - from menopause to now caregiving. All the knowledge that professionals in the field of aging and geriatric care managers could muster to tell the care giving tale, can't hold a candle to the explosive light, Sheehy has put on this heart wrenching passage. Plus ,she has pointed that light on the perfect national answer to this “everyfamily" dilemma- a geriatric care manager.
Cathy Jo Cress
http://www.agingfamilydial411.blogspot.com/
Wonderful attention to be giving to caregiving one of the longest and sometimes challenging journey we each will face.
The related links to this article need correction - because the National Association of Geriatric Care Managers is www.caremanager.org.
Thanks for the good work.
We Professional Geriatric Care Managers are here to support and guide families with the most challenging of decisions always making client centered suggestions based on client values, needs, financial resources and entitlements.
Linda Fodrini-Johnson, President NAPGCM
I must disagree with Kesslerkate.
While hiring caregivers one your own can be a challange, don't assume that these private agencies screen out untrained or people with criminal records. These agencies are in business to make money and they will hire anyone.
Our local paper had a series on agencies that staff nursing homes, private homes, and child care centers that hired people who had criminal records, and even one who was on the sex offender regestry.
If you hire one your own, make sure you do a background check, ask about past work experiences and even give your own care giver test.
I must disagree with Kesslerkate.
While hiring caregivers one your own can be a challange, don't assume that these private agencies screen out untrained or people with criminal records. These agencies are in business to make money and they will hire anyone.
Our local paper had a series on agencies that staff nursing homes, private homes, and child care centers that hired people who had criminal records, and even one who was on the sex offender regestry.
If you hire one your own, make sure you do a background check, ask about past work experiences and even give your own care giver test.
I just finished Gail's book and posted my thoughts at http://midlifemidcape.wordpress.com. I've had my 88-year-old father living with me for more than two years now. Gail's parsing of the states of emotion one goes through during such an experience is extremely helpful to anyone trying to find a way to help their loved one navigate his or her own personal labyrinth of aging.
Thanks for sharing. These were my thoughts exactly. The scenario described by the guest on this show is possible only for people living in the upper middle class income bracket. I am in my forties, live with an ex husband who can contribute financially to our lives but would be incapable of caregiving. I have no siblings, no uncles, no aunts, my parents are deceased. If I were to become seriously ill, and incapable of working, first we would lose the house. (I have $10,000 in an IRA account through work, but no savings.) My only hope of caregivers would be my teen age children. The "circle of care" described on the show is a fantasy in the lives of most average working people. Without a certain income level, everything described in this show is fantasy for the majority of Americans.