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Jerald Winakur What Are We Going To Do With Dad? Health Affairs, July/August 2005; 24(4): 1064-1072. [Extract] [Full Text] [PDF] [Reprints & Permissions]

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Comments published:

Jerald Winakur's Word to the Wise (and the Not so Wise)

Jim Peyton   ( 26 July 2005 )

One Voice, For Many

Kathy P. Ruffner-Linn   ( 27 July 2005 )

Thanks to Dr. Winakur and Health Affairs

Susan G. McBride   ( 28 July 2005 )

Honoring One's Parents

Eydl Reznik   ( 2 August 2005 )

A Touching Essay, And A Shared Experience

Deborah L. Young   ( 2 August 2005 )

Thank You For This Article

Janet Dingle Brown   ( 2 August 2005 )

Listening, Preparing, and Being Thankful

Laura Lee Lamothe   ( 2 August 2005 )

A Needed Dose Of Humanity

Galina Khatutsky   ( 5 August 2005 )

Thank You

Cathy L. Jaynes, PhD, RN   ( 5 August 2005 )

Impressed and Worried

Mercedes Vargas   ( 8 August 2005 )

A Task to Be Completed

W. Sherod Williams, PhD   ( 8 August 2005 )

It Happened to Us

Janet E. Rodman   ( 8 August 2005 )

Advocacy

Gail Holtz,NP, MSN,CRRN, CNS,MS   ( 8 August 2005 )

Response for Life

Lovina (Jeanne) B. French   ( 8 August 2005 )

Yesterday's Actions, Today's Thoughts

Gabriele S. Rosenberg   ( 8 August 2005 )

Thank You

Judy W. Fox   ( 8 August 2005 )

Tears

Patrice G. Knight   ( 8 August 2005 )

Timely Article Regarding Senior Care

Curt E. Canada, MSW   ( 9 August 2005 )

Thank You, Dr. Winakur

Lawrence D. Block   ( 9 August 2005 )

Your Article...Wow!

Diane M. Schlosser   ( 9 August 2005 )

A Growing Problem with Not Enough Concern

Gillian Laurence   ( 9 August 2005 )

Palliative Care and Hospice

Nancy E. Grimler   ( 9 August 2005 )

Needed: A Special Branch of Government for the Aging

Shirley A. Conover   ( 9 August 2005 )

Dad Is Now "Old Old"

Elizabeth Reichman   ( 10 August 2005 )

We Should Expect More

Knud L. Hansen   ( 10 August 2005 )

Re: We Should Expect More

Jerald Winakur   ( 11 August 2005 )

Re: Dad Is Now "Old Old"

Jerald Winakur   ( 11 August 2005 )

Thank You for a Great Essay

Cheryl D. Reese   ( 11 August 2005 )

Comment from an "Old-Old"

Robert W. Smith   ( 11 August 2005 )

Author: Inspired by Responses

Jerald Winakur   ( 12 August 2005 )

We Still Have So Far to Travel

Ralph Herz   ( 15 August 2005 )

A Familiar Story

Barbara A. Lynch   ( 19 August 2005 )

Our Personal Battles

Andrew J. Parker   ( 19 August 2005 )

Our Medical System Needs Critical Care

Charlotte R. Sudakov   ( 19 August 2005 )

Home Health Care = Common-Sense Care

Karin M. Entrekin   ( 19 August 2005 )

Caring For An Aging Parent: Vigilance Needed

Mary Jacobbe   ( 22 August 2005 )

Sending This Article to My Kids

David W. Dukes Jr.   ( 22 August 2005 )

Reflections of a Healthy 80-Year-Old

Virginia L. Coombs   ( 22 August 2005 )

Jaw-Dropping Article

Robert E. Gladd   ( 22 August 2005 )

How Do You Say "SNF" in Vietnamese?

Dinh V. Nguyen   ( 22 August 2005 )

I'm Afraid I Might Die before Her -- Because of Her

Kelly Bride   ( 29 August 2005 )

Well Said!

Jennifer D. Peshke, J.D., M.P.H.   ( 30 August 2005 )

Doctor's Caregiving Struggles Help Us All

Brenda Avadian, MA   ( 30 August 2005 )

The Power of Your Pen

Irene S. Levine, PhD   ( 31 August 2005 )

The Gift

Cathy V. Crowell   ( 7 September 2005 )

Skilled Loving Care (by Family) Unit

Kenneth S. Fujii   ( 16 September 2005 )

Beacon In The Darkness

Kevin Keough   ( 11 January 2006 )

Jerald Winakur's Word to the Wise (and the Not so Wise) 26 July 2005
Jim Peyton, Writer Send comment to journal: Re: Jerald Winakur's Word to the Wise (and the Not so Wise) jwpeyton{at}worldnet.att.net Jim Peyton	Having grown up in a small, close-knit family, and having lost my mother, grandfather, and grandmother (who suffered from dementia), I find the truth of what Dr. Winakur says to be both evident and important. Besides being beautifully written, his article provides vital information and timely warnings. The article should be required reading for everyone, especially politicians (of all stripes), who might then find at least one thing on which they could agree!
One Voice, For Many 27 July 2005
Kathy P. Ruffner-Linn, Ombudsman Program Associate Triangle J Area Agency on Aging Send comment to journal: Re: One Voice, For Many kruffnerlinn{at}tjcog.org Kathy P. Ruffner-Linn	It is difficult to describe how compelling Dr. Winakur's essay is...in a few sentences or a paragraph. He summed up the experience of many, many thousands of "Boomers" in this one essay. He wrote from a place of dignity and determination, with respect and empathy for himself, his sibling, and his parents. He wrote as a doctor, a son, and a human being...an individual member of our huge "Baby Boomer" generation. In his essay, I heard the doctor but was not intimidated by the white coat. I heard the son, and heard my own fears and grief echoed. I heard the man, and the struggle to make it all make sense, the search for the solution, and I see my own struggles. His integration of all the different "hats" he wears is inspiring. Dr. Winakur's essay did not provide me with a solution, but it relieved a little of the aloneness I feel despite knowing statistically that I am not alone. The essay left me with a feeling of hope, not based on facts, but on the quality of the human spirit. I want to thank Dr. Winakur for writing the article.
Thanks to Dr. Winakur and Health Affairs 28 July 2005
Susan G. McBride, Vice President of the Data Initiative Dallas Fort Worth Hospital Association Send comment to journal: Re: Thanks to Dr. Winakur and Health Affairs smcbride{at}dfwhc.org Susan G. McBride	I thank you for the recent article entitled "What Are We Going to Do with Dad?" Caring for my 91-year-old mother with multiple clinical issues compounded by senile dementia, I could relate too well to Dr. Winakur's experience. From the bedside vigil in the hospital, to my family looking to me as a health care professional as though I should have all the answers, Dr. Winakur painfully tells our story as health care professionals caring for "old old" parents. I too have told my sisters that if mother has another stroke, I am not sure I will take her to the hospital. Yet, once faced with the decision, it is likely to be the same one Dr. Winakur concluded with "call 911". Several of my colleagues passed the article around the office today because we have all had tearful discussions lamenting over what we should do about our aging parents. I also shared the article with my sisters so that they can better understand the plight of health care professionals who wish they had the answers but really don't. This was obvious to our family with my mother's last episode in the hospital as the family and the health care team agonized over the best long-term care plan for my mother. This article was a powerful reminder of how human we all are, and that despite all our scientific evidence in the health care industry, we are struggling with this growing problem that impacts us both personally and professionally.
Honoring One's Parents 2 August 2005
Eydl Reznik, Coordinator The Right Track-B'Derech HaMelech Send comment to journal: Re: Honoring One's Parents nashira{at}bezeqint.net Eydl Reznik	I live in Israel. Reading your sensitive and moving article with tears in my eyes, I couldn't help but think: how can you be describing my father so well? True, ours was an Ivy League university professor who wrote books and taught a generation of scholars, but in the end, we siblings are struggling with the same personality that you and your family are lovingly caring for. It is painful to read your article, as you leave us with that existential oblivion ahead of us. But you are speaking the truth, and the truth can be painful. If it is at all helpful, I would like to offer this. According to traditional Jewish thought, every action that we do in this world for another is of great import, and affects the general character of the world as a whole. What we do for a parent, however, is beyond the realm of an act of kindness. It is equivalent to the greatest level of kindness that a human being can offer in this world. Your article, therefore, is not only about the suffering of an "elder" and his family, but about the greatest gift that a child can ever give back to the parents who raised him. The "mitzvah" of "Honoring One's Parents" is one of the "Ten Commandments." It is one of the few acts to which there is no end of measure of its worth, and for which a person is greatly rewarded, in both this world and the world to come, according to tradition. May we all have the strength and clarity to know what is expected of us in these situations, and be blessed with gentle joy in knowing that we are doing the right thing.
A Touching Essay, And A Shared Experience 2 August 2005
Deborah L. Young, Director of Physician Services MIMA (Melbourne Internal Medicine Associates) Send comment to journal: Re: A Touching Essay, And A Shared Experience Deborah.Young{at}mima.com Deborah L. Young	I wanted to let you know how much your essay touched my heart. I am crying as I type this e-mail. My 82-year-old father is not suffering from dementia, but otherwise mirrors your father. I, too, dropped what I was doing last month when my mother called. She had run to the grocery store only to come home and find my dad on the floor in the bathroom (not the first time, but I finally convinced her to call me when he falls; she "doesn't want to bother" me). Thinking he had suffered a stroke, I rushed over, calling his physician from my car. To make a long story short(er), he was given medication for his dizziness and told to return the next week for a CT scan. After taking my parents home, I drove to my own home, cooked dinner, and returned to their home with dinner in tow (including fat-free chocolate pudding as a treat for my dad; we share the chocolate gene). As I lay on the bed propping my father up as he ate, I too wondered "what are we going to do with dad"? How long was I going to be able to support his weight? I was already getting muscle cramps. Would he start using the walker, the cane, etc. etc. Would his mind soon fail him as harshly as his body had? I, too, have personal relationships with his physicians. I recruited and hired most of them and know their families as well. They treat my father as their own. I am grateful for that. I am lucky that my father still knows that I am his daughter. I am lucky that my mother can still read the medication labels, although she is becoming more and more forgetful. I am lucky that I can still support my father. I am lucky that I found your essay.
Thank You For This Article 2 August 2005
Janet Dingle Brown, Guardianship Coordinator & Legal Services Developer Virginia Department for the Aging Send comment to journal: Re: Thank You For This Article janet.brown{at}vda.virginia.gov Janet Dingle Brown	Thank you for an insightful and well-written article. It has helped me tremendously in understanding the less obvious issues associated with elder law and the aging process (and given me great pause regarding my own advancing years). With your kind permission, I will continue to share this valuable article with others in my network.
Listening, Preparing, and Being Thankful 2 August 2005
Laura Lee Lamothe, Administrative Assistant UCDHSC-School of Nursing in Denver, Colorado Send comment to journal: Re: Listening, Preparing, and Being Thankful LauraLee.Lamothe{at}uchsc.edu Laura Lee Lamothe	Thank you, Dr. Winakur, for writing this article. My thoughts center on that time in my life when the choices are limited and the funding is diminished. Both of my parents are in their late 70s. My time to ask this question will come very soon. I have printed your article and shall mail it off to my folks. They had to face much the same situation many years back with their parents. However, they dealt with it from a 700-mile distance and utilized other family members to deal with the day-to-day issues. This is now what I must face in my future--the distance as well--unless my thoughts begin to incorporate your words. I know that since I am the only daughter, much of the responsibility of care for both of my loving parents will be delivered to my shoulders to bear. Your article has opened my mind to think and act more openly toward this pending yet inevitable situation with my younger brothers. I am the one living a long distance from my parents and realize now that my life will include a move within the next 5-8 years to properly care or oversee the care for my folks. Wish me luck! Keep up the good storytelling, as my life has been enriched because of your words. I have a different way of thinking about and preparing for my next 10 years. Thank you again for your honesty as well as the warmth and dignity presented in your article.
A Needed Dose Of Humanity 5 August 2005
Galina Khatutsky, Health services researcher Aging, Disability, and Long-Term Care Program, RTI International Send comment to journal: Re: A Needed Dose Of Humanity gkhatutsky{at}rti.org Galina Khatutsky	I just want to congratulate you on your article. It is absolutely remarkable and it made me cry -- and I've been reading this literature for 10 years! With all the sophistication and advances in our medical care, it seems that it is totally devoid of compassion and humanity, and it is absolutely essential that we see more of this type of writing.
Thank You 5 August 2005
Cathy L. Jaynes, PhD, RN, Assistant Professor University of Colorado Health Sciences Center School of Nursing Send comment to journal: Re: Thank You cathy.jaynes{at}uchsc.edu Cathy L. Jaynes, PhD, RN	I’m sitting here in my office with tears in my eyes. Thanks. This article so thoroughly described several angles of the dilemma encountered by those of us with aging parents. And by those of us who provide care to these folks and their families. I’ll pass it on to several of my colleagues here -- but I just wanted to commend you for sharing your perspective.
Impressed and Worried 8 August 2005
Mercedes Vargas, Retired PAHO/WHO Send comment to journal: Re: Impressed and Worried mercedes.vargas11{at}verizon.net Mercedes Vargas	I was really impressed by this article, which I read in the Washington Post today (7 August 2005), especially because it comes from a specialist in geriatrics. I was really touched by the author's honesty in describing his own family problem. In simple words, Dr. Winakur describes a problem which is common for everybody. I am sure he is touching the most sensible fibers of any human being. I hope that after reading this article, influential people would become sensitized and really start working for better conditions for the care of the elderly. Congratulations to Dr. Winakur! I would be interested in knowing whether this article exists in Spanish, to make it avaible to people who are not fluent in English. If not, I would be willing to translate it if you allow me. Thank you very much.
A Task to Be Completed 8 August 2005
W. Sherod Williams, PhD, Clinical Psychologist Associated Human Services Send comment to journal: Re: A Task to Be Completed ahs_inc{at}myway.com W. Sherod Williams, PhD	When I was 5 or 6 years old, my father and took a trip by subway to a local bank to open my first savings account. I recall a brief and prescient comment that my father made after our trip to the bank. I don't recall how the topic came up in our conversation. "At some point, I will become the child and you will become that parent. Then you will have to take care of me," he said. It is now more than 50 years since that time when my father serendipitously and presciently raised the issue. Both my father and mother have passed. And yes, as he predicted, I cared for them in much the same way my father foretold. However, when I read your article, I realized I had not considered all the implications of my father’s comments. For the first time, I was prompted to view myself not as the adult child who dutifully cared for his parent or grandparent, but the parent who will require that care from his own children. I realized after reading your article that I denied the implications for me and my family. I have not initiated that conversation with my own children. I realize it is time to do just that. As you can see, your article triggered many meaningful memories and reminded me of the work I still have to do with my own family.
It Happened to Us 8 August 2005
Janet E. Rodman, Retired RN Send comment to journal: Re: It Happened to Us janet1008{at}aol.com Janet E. Rodman	Thank you for this incredible article. It is the most informative I have read. Recently my husband was in a local hosipital for a TKR. He was overmedicated and almost went into arrest, ended up disoriented and confused, and was in ICU and step-down. The care was so bad we had to stay with him 24 hours a day. On one day, when a member of the family was not there, he tore his Foley catheter out. All in all he was hospitalized for three months. Then he had to start physical therapy. Thank God his mental state stablized and he was close to being himself again. However, he has residual and his recall is slipping. The next question for us -- what are we going to do with Dad? -- is pertinent to your article. Thank you for putting this question before the public.
Advocacy 8 August 2005
Gail Holtz,NP, MSN,CRRN, CNS,MS, Consultant Holtz Associates Send comment to journal: Re: Advocacy nurseknows{at}aol.com Gail Holtz,NP, MSN,CRRN, CNS,MS	This article described several issues realeted to the dilemma encountered by not only our aging parents but our health care future. Health care has turned into corporate America! Uniforms are a thing of the past. I have spent my career as a nurse caring for an aging population. Over the past 27 years there have been some improvements, but overall the regulators have not done much to improve the quality of life in nursing homes. They have made the extended care system top-heavy and paperwork-intensive, thus taking the resources away from the bedside. Unless we change the way we care for this fragile group of individuals, we will never improve their outcomes. Go into your SNF facilities. In most homes, the needed physical assistance is just not available. For example, in most SNFs, walking around is considered a hazardous activity unless the resident/patient has help. Often the safe solution is a wheelchair. Once one is confined to a wheelchair and only allowed to walk with help from one's nurse assistant, the effects of immobility start to show. The downward spiral starts. Hospitals are also a hazardous environment for anyone but especially the older population. With no family at your bedside, just lose your reading glasses and imagine what happens! I believe that we can help this population, and eventually ourselves, by and through a very different appraoch to care. We need an approach that does not sponsor heavy rewards for clever paperwork, data gathering, and large management teams. Instead, we need a sytem that rewards providers for direct care hours at the bedside. Just as an exercise, count the number of workers who don't provde direct patient care for each an every person in your nursing home and hospital. Include all the highly trained managers, clinicians, and administrators who are required to particpate in various aspects of the charting, survey preparation, and cumbersome paperwork to comply with an overregulated and underfunded health care sytem. Then count the number of individuals and hours of care provided at the bedside for bathing, walking, feeding, skin care, sanitation, and safety precautions. Let's look at the nurse assistant, home health aide, and houskeeper and measure the importance of what these workers do. Perhaps we should consider getting the RN or LPN back to the bedside to help? As profesional reform moves foward and resources become scarce, we need to advocate for less paperwork and less-top-heavy managment structures. It won't be long before we are in that same bed, ringing that call bell for help.
Response for Life 8 August 2005
Lovina (Jeanne) B. French, Spouse Partner of 25 years for life Send comment to journal: Re: Response for Life jandcfrench{at}verizon.net Lovina (Jeanne) B. French	Thank you, Dr. Winakur. It is good not to be alone. Tomorrow, my sixty-second birthday, occasions this response which hangs on my bathroom wall concerning my eighty-two-year-old husband. I see it daily. It is a poem. Who can find -- or become -- a caregiver/mate To a memory impaired loved one; In whom one may delight, In whom one may safely trust, Whose value is far above rubies? A caregiver who patiently provides, A caregiver who consistently meets a loved one's need, Who is nourished by God's goodness, Who relies on God's provision? Who gracefully accepts the kindness of friends, Who prepares for the future; Yet lives in the present moment, Who refuses to dwell long on today's deficiencies; Who acknowledges today's sorrow and loss, But refuses to get stuck there forever? Who relishes small triumphs, And respects each effort to overcome. One who waits -- and does not rush; One who admits their own needs; One who knows you cannot do everything; You must do increasing numbers of things? Who is faithful and consistent; Who is grateful for blessings; Whose service is sensitive to expressed And unexpressed desires. Who has courage in the adversity Of an increasingly frail loved one? Who displays compassion without words, Who relies on God and knows God As the Giver of All -- And the Sustainer of those in pain? Blessed are those who endure in peace. Blessed are those who serve without complaint. Blessed are those who show Love And are loved or have the memory of love in return. Jeanne Paulette French October 26, 2004
Yesterday's Actions, Today's Thoughts 8 August 2005
Gabriele S. Rosenberg, Care Giver Loving Daughter/Wife/Mother Send comment to journal: Re: Yesterday's Actions, Today's Thoughts gabes_online{at}yahoo.com Gabriele S. Rosenberg	When my mother needed assistance, we were there, and it was a child's honor to do so. When my mother-in-law needed assistance, once more we fulfilled the role. Now my husband is dealing with a degenerative disease, and I know that not only I but also our sons will be involved. Who is there for the soul who has no one? Doctors, hospitals, nursing homes, and the constraints they operate under? Don't stake your loved one's life on it. We saw that with our mothers. Now we fear it for our dad.
Thank You 8 August 2005
Judy W. Fox, Staff Assistant Univ of Okla College of Pharmacy Send comment to journal: Re: Thank You judy-fox{at}ouhsc.edu Judy W. Fox	You could have been writing about my own father . . . one of the "old old," who died at the age of 91. He, too, was confused and disoriented, but hard though it was for us, he remained at home. We could not allow him to be forgotten and trivialized while left in the care of strangers. With the assistance of home care aides, his family cared for him until the final breath, then we told him we would take him home . . . and so we did. Thank you for sharing your story.
Tears 8 August 2005
Patrice G. Knight, Caregiver/home-school teacher Send comment to journal: Re: Tears pgknight{at}triad.rr.com Patrice G. Knight	I sit at my computer with huge tears brimming in my eyes. I am sorry for your family's heartache; I am sorry for your dad's pain. I am a full-time caregiver for my mother, age 80, with Alzheimer's, osteopororis, and now emphysema. Maybe I needed to cry; I try not to most days. I understand how you feel about wanting "to help" free your dad from what is to come. I have the same fleeting thoughts, always with deep guilt to follow each time. I could never allow that for my mother, either, even though I wish her suffering could come to an end. I keep her comfortable. She seems happy on "good days." She is miserable most of the time. I am glad you have your brother to soften the load. My sister passed away suddenly three years ago; my daddy is gone for over 25 years now. It is my husband, myself, and our grown children. Our youngest, 17 years, lives here and now knows the horror of Alzheimer's. What a huge lesson for such a young man. Thank you for this article. I pray for your family's peace.
Timely Article Regarding Senior Care 9 August 2005
Curt E. Canada, MSW, Social Worker/Human Resources Urban Companion LLC Send comment to journal: Re: Timely Article Regarding Senior Care CurtCanada{at}UrbanCompanion.com Curt E. Canada, MSW	I would like thank Dr. Winakur for raising issues and concerns for seniors who are living and will live longer in the twenty-first century. Many seniors in our cities live alone and are single with very few friends. They not only feel isolated; paranoia and memory loss accompany their existence. Their physical health has greatly diminished. The cost of health care is startling to most. In addition, some do not have any family support. You're absolutely right, what are we going to do with a growing senior population? How will we deal with the issue of resistance as caregivers? We're Urban Companion, a senior care company located in northwest Washington, D.C. We provide in-home care 24/7. We plan mom and dad's care with the immediate family (if there's family in the area). We're getting referrals, and we're getting resistance, which is a big issue that must be addressed. What a great article!
Thank You, Dr. Winakur 9 August 2005
Lawrence D. Block, D.P.M. Send comment to journal: Re: Thank You, Dr. Winakur docdavelb{at}hotmail.com Lawrence D. Block	I have just finished reading a condensed version of your article on "What to do with Dad," sent to me by my cousin, who saw it in the Washington Post. It summarized what I am now going through with my mom. Following severe back pain, incorrectly diagnosed as pneumonia, a compression fracture at T-6 was found to be the source of her problems. Now after eight days in the hospital and two so far in a rehab environment, the early memory loss we saw in her has progressed to what we now know is early- to mid-stage Alzheimer's. It is true that we are adults once and children twice! There is no question as to the exacerbation of her cognitive ability as a result of her pain, the disruption of a stay in the hospital, and now yet another new "place to put me," as well as the effects of overmedication: two Percocets (for pain rated as a 5 of 10) for an 85-year-old weighing just over 90 pounds. Now, the questiion is, What do we do with Mom? She can't go back to independent living and for a while may do OK with assisted living. We'll have to wait and see. If she improves -- and there is little chance for that -- what little funds she has will soon run out. And yes, there is NO provision for assistance unless she is put into a nursing home. I could not live with myself and do that to her if she still has "good days" left in her. So I'll step up to the plate and do whatever I can to keep her comfortable with as much dignity as possible until there comes a time when we have no choice but to accept assistance from state Medicaid and move her yet once again, to a nursing home. I agree with you that the powers that be don't have a clue. Assistance in the home or in an independent living facility would not only be cost-effective, but would help to preserve the human side of the equation. What are we gonna do with Mom? Thank you for your story and insight. This letter was as much for me to sound off as it was to thank you. P.S. My dad often said that he would rather fish than eat when he was hungry! We too had many days together on the Bay.
Your Article...Wow! 9 August 2005
Diane M. Schlosser, Manager-Franchise Services Management Recruiters International Send comment to journal: Re: Your Article...Wow! dms4339{at}yahoo.com Diane M. Schlosser	My brother forwarded me your article, "What Are We Going to Do with Dad?", which was run in yesterday's Washington Post. Were you hiding in the closet of my parents' home when you wrote this? With the exception of your dad's height, weight, and mental capacity, you could've been writing about our family and what we're dealing with with our beloved 88-year-old dad (and 82-year-old mom). Dad's got Alzheimer's, and every day I watch as he very slowly leaves us, which is such a heart-wrenching ordeal. My mom is adament that she will not put him in a nursing home if she can help it (and I concur), and tries her best to take care of him herself, with my help when I get home from work and on the weekends. She refuses the thought of in-home care ("your father wouldn't like it"), but it's taking its toll on her physically and emotionally (he blames her for lots of things from the delusions his mind creates daily). My heart goes out to you and your family. I know exactly what you're feeling and going through! I just pray that I'm hit by a bus before this terrible disease invades my mind.
A Growing Problem with Not Enough Concern 9 August 2005
Gillian Laurence, Physical Therapist, student Send comment to journal: Re: A Growing Problem with Not Enough Concern gillian15{at}hotmail.com Gillian Laurence	Thank you for your honest but compassionate story about a severely neglected population. As I read your article, I realize with dismay, "Where are the young people?" As someone who is 33 and always desired to go into geriatrics, it pains me at times to see the lack of interest and even scorn that many have for the older generation. Perhaps my own interest was fueled further by a loss of both parents at a relatively young age, and thus not being afforded the opportunity to "give back" to my parents. Even though your article brought a hint of tears to my eyes, I was bursting with happiness to see your article in the Washington Post. My plan to return to school, study medicine, and ultimately specialize in geriatrics has been reinforced by reading this story. Although circumstances do not permit me to do so for some time, please know that although the voice is small, there are many of us who care. More articles like yours are needed to remind us of the existence of such valuable members of society, who are indeed not valued enough.
Palliative Care and Hospice 9 August 2005
Nancy E. Grimler, Hospice RN Suwannee Agency Send comment to journal: Re: Palliative Care and Hospice gdlife{at}earthlink.net Nancy E. Grimler	Yes, it is a moving article. However, we don't need to be a nation of martyrs towards our elderly and debilitated. There is palliative care, which usually decreases the amount of medications a person is taking and lets nature take its course. It is symptomatic care. And there is hospice, a wonderful organization all over the world that deals with end-stage life issues. You don't always have to be within six months of dying anymore; many have a program for the end-stagers that still have longer than six months to live. It is wonderful support and helps everyone (patient and family) learn about death with dignity. To me, we need to change our persepctive towards death and dying, learn to accept it, and make the transition a celebration instead of putting these people trying to die through a living hell. I apologize if this sounds harsh to some of you. I am reluctant to send it for fear of unwelcomed comments, but I am going to take the risk anyway in hopes this will open eyes to another perspective. Forgive me if I have offended you.
Needed: A Special Branch of Government for the Aging 9 August 2005
Shirley A. Conover, Retired Send comment to journal: Re: Needed: A Special Branch of Government for the Aging saconover{at}starpower.net Shirley A. Conover	So many others have already expressed my feelings. As I read this article, I felt a great sadness. Yes, you are indeed a family in crisis. So is our country. If you as a physician and especially in your speciality don't know what to do in this type of crisis, then what does an ordinary person do? Exactly what you are doing: the best you can. Perhaps we ALL should rise up and be heard. One person cannot solve the problem. When we found out that our country was in crisis after the 9/11 attacks, a special branch of government was formed to fight terrorism. Why not a committee for the aging that addresses the problems of this type? Or maybe someone should check with the Commitee on Aging to include this particular problem in their reviews? Perhaps we can get enough people interested to bombard Congress. You mentioned that nursing home employees are underpaid. Why are they underpaid? I was in a nursing home for rehabilitation after knee surgery, and I would not wish that experience on anyone. All these issues need to be addressed. If we can find enough people interested and willing to work towards finding a solution to this heartbreaking problem, I am willing to help any way that I can. This is a problem that most elderly dread. I have heard it a thousand times. I hope the Good Lord takes me rather than making me endure the humilitation of a nursing home.
Dad Is Now "Old Old" 10 August 2005
Elizabeth Reichman, RNC Send comment to journal: Re: Dad Is Now "Old Old" ereichman{at}comcast.net Elizabeth Reichman	My eight-five-year-old father alerted me to the Washington Post article that was excerpted from this journal. He guessed he was now an "old old person." He described the article, which I hadn't read yet, and said he hoped there would be some morphine for him when his time came. I have discussed end-of-life issues with my father for many years. He had always been clear that he did not want extraordinary measures to keep him alive and spelled out very clearly in a living will how he wanted to be cared for at the end of his life. In theory it all sounds so clear. But I have found the reality to be very different. Over the past years my dad has had different illnesses that have required hospitalization, the last one being an acute GI bleed that was life threatening. He was treated for the most part with kindness and respect at a very prominent Washington, D.C., hospital. Almost without exception, nurses and doctors asked my father and me what he wished for treatment. When faced with the possibility that no treatment meant death, my father said, "I have a lot of living to do, so please do what you can." My father recovered and after acute rehab in a SNF was able to return to his normal life. I recognize that my father was able to advocate for himself and that my sister and I were there to back him up. In my professional life as a nurse, I couldn't agree more with Dr. Winakur. The nursing home industry is run through regulations and not care and compassion or even quality medicine. Nurses spend more time worried that they are not getting their paperwork done than that they are caring for residents. Administrators and directors of nursing care more about meeting regulations than quality of care. Even though the nursing home industry costs billions of dollars, there is no real committment to caring -- it is all about making money and more regulation. The real caregivers in nursing homes go unnoticed and unappreciated: the nursing assistants. These caregivers often make less that ten dollars an hour. In closing, it is my belief that families are the only people who can truly advocate for family members. You cannot depend on anyone else to do it for you. There is no agency out there that looks out for the elderly (or anyone else). More government is certainly not the answer.
We Should Expect More 10 August 2005
Knud L. Hansen, Retired Director of Adult Services State of Michigan Send comment to journal: Re: We Should Expect More knudhansen{at}comcast.net Knud L. Hansen	Dr. Winakur’s article struck so many chords that it is difficult to know where to begin. I will begin with a professional perspective since that is much the easier to handle at the moment. Until 2003, I was director of adult services in Michigan’s Department of Human Services. In 1997, when the state offered an early-out program as a budget saving alternative, I also became director of the Department’s Purchased Care Division, which was responsible for the purchase of children’s foster care services. I mention this because responsibility for the two programs gave me firsthand experience with the competition of adults' and children’s programs for scarce resources. During the intervening years from 1997 until 2003, the state faced a continuing battle of deficits. In Adult Services we lost a third of our field staff, those front-line professionals who could help arrange for both the payment and delivery of home help services, and, when a family was overwhelmed, adult community placement or foster care services. This was at a time when the number of home help recipients annually reached historic levels -- 43,000 the year I left, up from 37,000 in 1997. The state balanced its budget with hard decisions. One of these was to freeze hiring in adult services, driving caseloads up to over 200 for home help staff while at the same time refilling all those positions left empty because of early-out options in children’s foster care services. If you look at the program descriptions for the state’s Department of Human Services, Adult Services became a minor element categorized under “other programs,” while children’s services expanded to include sections and subsections. Within my office, the number of adult services staff dwindled while my children’s purchased care staff doubled. These demographics, when combined with budget freezes and cuts, have their impact on both the clients served and the providers who deliver those services. Public employees are left with caseloads that would have been unimaginable just a few years earlier; protective services cases are screened, and only the most obvious and physically harmful are subject to investigations; there are cases of financial exploitation that are never investigated and resolved until it is too late and life savings are gone; and home help staff are so pressed that they do not have the time to make frequent home visits to see if the services they approved are actually delivered. I can’t blame department heads or budget staff for the cuts. They are subject to legislative scrutiny and public pressure to protect our children. On the adult side, there are few advocates at the state or community level who can command attention and effectively speak to the growing need of our aging population. I left in 2003, when I could no longer gracefully accept the disparity in resources within the two programs under my management. On the personal front, the lack of resources and attention is coming home to roost. My wife and I, along with a brother and sister, face concurrent aging, chronic illness, and growing dementia in two sets of parents. Like Dr. Winakur, I frequently face questions from anxious family members. And I am as incredulous as they when I do not have the answers to “What do we do with Dad?” What is most discouraging is the silence with which the issues of care and fatigue and the inevitability of death are greeted. My fear is that we will stumble along, first with both of our fathers and then our mothers until the system takes over because our fatigue and exhausted resources have robbed us of humane and dignified solutions. We become worn out, unable to return the care that our parents gave us while we were growing up. We should expect more from our society and must quickly move to help make our priorities and policies reflect the reality of an aging population.
Re: We Should Expect More 11 August 2005
Jerald Winakur, Geriatrician Send comment to journal: Re: Re: We Should Expect More jwinakur{at}aol.com Jerald Winakur	When I was medical director of my hospital SNU, I was told only two weeks before the unit closed that this was going to happen. I wasn't consulted about the closure; I wasn't asked if I felt whether or not the SNU was a useful adjunct to patient care. It was an afterthought to even let me know about it, and this after nine years as medical director. This decision was made for financial considerations -- Medicare reimbursement was cut to SNUs, and suddenly acute hospital beds generated more revenue again. But this was not a decision even remotely considered to warrant physician input. We should expect more -- from our top politicians, their policymakers, their appointees all the way down to our corporate hospital structures: Nothing runs on air; some services don't generate as much income as others. But please, look to your patient advocates for guidance before you cut, cut, cut!!!
Re: Dad Is Now "Old Old" 11 August 2005
Jerald Winakur, Geriatrician Send comment to journal: Re: Re: Dad Is Now "Old Old" jwinakur{at}aol.com Jerald Winakur	I have received many. many letters like this one. Many are even more tragic. While it is true that government cannot solve the problem -- no one can make caregivers more compassionate -- we can demand that dollars be targeted more effectively than they are currently. In short order my father will "qualify" for Medicaid nursing home coverage should my family want this. We do not. We are more fortunate than most and intend to carry on as we are. But for the families that need help, doesn't it make sense to provide home caregivers at a fraction of the cost of 24-hour-per-day nursing home care? Yes, this kind of program will need to be monitored and regulated -- as should all programs that impact our most vulnerable citizens. But it does make more economic sense as a society to do it this way if the family is able and willing to shoulder some of the burden.
Thank You for a Great Essay 11 August 2005
Cheryl D. Reese, EAP Counselor EAPA Send comment to journal: Re: Thank You for a Great Essay CHERYL.Reese{at}dhs.gov Cheryl D. Reese	I recently read your article in the Washington Post (August 7, 2005). It was of particular interest since I am designing a caretakers support group in the agency I am employed by. I have been interested in gerontology for years. Now as a baby boomer getting there...58...it becomes more important to acknowledge the elders we currently have in the system and look at the U.S. health care system and attitude toward our seniors. Your personal story is reflective of my friends' and colleagues' experience with their parents. My parents have been deceased since I was very young, and in a way, it feels much like relief because to make the decisions about our parents that many face today is heartbreaking. I salute those who do the best they can. There is no guarantee that long-term care insurance is going to be the answer for many of us as we age. Some folks have even suggested methods they would employ in an effort not to burden their children and friends. When we become so desperate that we have to decide our aging period as a time to disappear, we then wonder, "Did anyone ever care?" Thanks again.
Comment from an "Old-Old" 11 August 2005
Robert W. Smith, Long since retired Send comment to journal: Re: Comment from an "Old-Old" Rfaber{at}webtv.net Robert W. Smith	I, too, read Dr. Winakur's essay in the Washington Post, but from a different point of view than most of the other correspondents. I am a nonagenarian widower dad, age 92, who is residing in an independent living retirement community with about 100 other residents. Eighty percent are women; the average age of all is 83. I have not been "done with." I "chose" to move into this environment after the death of my wife almost two years ago. To me, the Winakur essay pointed up the essential importance of a timely written, and carefully conceived, "living will." I find it hard to believe that any of today's modern Western parents would include a clause in such a will that would stipulate, in writing, that the author thinks it to be proper, desires, and intends to abdicate all personal responsibilities for managing the final years of life by depending on descendants. Rather, now, it seems to me to have become appropriate for all of us olds and old-olds to assume personal responsibility for the management and control of our death. As one of the correspondents remarked, it may be necessary for some of us to change our perspectives about death and dying. There are many helpful and informative groups available, such as ERGO, or COMPASSION & CHOICES. My own intention, when it becomes obvious to me that I have lived long enough, is to implement the medical procedure known as V T D (voluntary terminal dehydration). My living will and my advance medical directive so indicate. They have been discussed with my children and my primary care doctor. And under no circumstances do I (nor did my wife) intend to become a child of our children. Their only obligations will cease after my cremated ashes have been scattered by the winds.
Author: Inspired by Responses 12 August 2005
Jerald Winakur, Geriatrician Send comment to journal: Re: Author: Inspired by Responses jwinakur{at}aol.com Jerald Winakur	I have now received (as of 8/11/05) almost 600 e-mail messages about this essay. [Editor's Note: Only a small fraction of these have been submitted to the Health Affairs Web site as eLetters.] Many of these were from people like me who felt an intense need to share their personal stories, often their personal hells, with someone else; someone they felt was a kindred soul in dealing with these end-of-life issues in our aging loved ones. So many people feel desperate, isolated, guilt-ridden, not to mention exhausted, frustrated, angry, and bitter. I have heard from Americans of all stripes--Native Americans, black Americans, Hispanic Americans, Asian Americans, and even many recent immigrants to our country from Eastern Europe and other places. Despite all that may divide us culturally, here is what I know for sure: we all share a love for our aging grandparents, parents, the aunt or uncle who took us in and nurtured us, our dying elderly spouses, and we all want to do better by them. This comes through in letter after letter after letter. Of course, it must be so -- this is the way of families, after all. Many readers of my essay have chastised me for not providing answers to the questions I raised in my piece. I wish I were wiser and more knowledgeable than I am. The sad fact is that often there are no good answers, no one true answer that fits everyone's needs. I did hope to add to the conversation on the way our nation treats or ignores its elders, the need to retarget some of our resources, the need to bring more trained health care professionals into the field. Most of all, I wanted families to talk to one another, to overcome fears and taboos and denial and guilt and shame, and talk about these most private end-of-life issues among themselves. And later to their friends, their fellow citizens, their political leaders. I hope I have succeeded in this, and judging from the mail I have received, I believe that I have. Certainly, translating this essay into Spanish or any other language will enable many others to read it and then add their voices to our national conversation. Health Affairs has the rights to this essay, not me, but its editors have been very accomodating in making this piece available to others. I want to thank all of you who have written to me for your comments and for sharing your stories. I will be thinking about how I can best honor these stories and extend our dialogue on these issues.
We Still Have So Far to Travel 15 August 2005
Ralph Herz, Medical Director American Group Practice, Inc. Send comment to journal: Re: We Still Have So Far to Travel ralpherz{at}aol.com Ralph Herz	Dr. Winakur’s amazing essay helped me understand that we physicians are no longer conditioned to losing the battle for life, now defined as an enjoyable life. Physicians for the past three thousand years have sat with their patients at their bedsides, quietly, calmly, certain in the knowledge that there was nothing we could do to alter the course of the infection, wound, tumor, organ failure, or dementia. But we could provide solace. Except to the demented. By 2005 we have learned how to treat thousands of illnesses and are conditioned to expect success. Dementia reminds us that we are closer to the beginning of knowledge of how to make and keep us well than to the end. By 2005 we have not learned how to address the economic, social, and clinical aspects of many illnesses including dementia. The strength of Dr. Winakur’s essay is that he recognizes many of the social issues, is appropriately pessimistic of near-term solutions, and offers no simplistic answers to towering social issues.
A Familiar Story 19 August 2005
Barbara A. Lynch, Daughter/School social worker Send comment to journal: Re: A Familiar Story barblynch{at}qconline.com Barbara A. Lynch	Thanks for the article. Our parents are both in their 80s. Your article expressed how I feel. Your father's and mother's experiences ring familiar. My father (85) recently "sprung" my mother (81) from the hospital at 5 a.m. It is a miracle that he could get her from there to home. Hoping to stave off senility myself, I do crosswords and sudoku(s) with reckless abandon! Also, our families' unorthodox sense of humor helps their kids get by. Our parents' doctor is the best -- patient, bright, informed, strategic, young -- which has also been a Godsend. I have forwarded this article to my siblings. Thank you, thank you, thank you.
Our Personal Battles 19 August 2005
Andrew J. Parker, Sales Send comment to journal: Re: Our Personal Battles Parkerjdrew{at}hotmail.com Andrew J. Parker	Your interview with Terry Gross of NPR's Fresh Air was on today. It certainly was a driveway moment for me. I was riveted by the story you had to tell. I don't believe it is an unusual story, though. No, in fact, I wonder how many times this senario has been renacted throughout history. What did people used to do? In what ways do other cultures deal with aging and death? I have heard stories of natives walking off into the forest alone to pass in the night, or perhaps they may eat a certain plant. Our options seem a bit less inhumane in comparison. As a doctor you have accepted your duty to "serve and preserve," but as a human how do you feel? Your description of your scene with your father and the needle was brutally honest and heartfelt, and in a way, very beautiful. To think we could love our parents, siblings, spouses SO MUCH yet we may actually consider taking their life out of absolute compassion for them as human beings. Thank you for putting those thoughts into words. I have had those same thoughts on occasion in anticipation of the future. What would I do? How would I feel? Will I know what is the right thing to do? Will there be a right thing to do? So far in my life, my dealings with sickness and death have been few: my beautiful grandmother Doris; my friend and companion of twelve years Jake, a black lab of extraordinary character. A number of other acquaintances, but no one particularly close. Today's story was quite relevant to me as I found out this morning a buddy of mine's father is scheduled for double kneee replacement, and he just discovered he has prostate cancer. This is a man I care about and have been close to in the past. Is this a harbinger of things to come? Is it our destiny to experience these situations? Is this a part of the circle of life that no one talks about? The part we don't find out about until we are living it? Seems to me it happens right around the time everything is going great in people's lives. We have raised our own children, are satisfied in our careers and marriages, conscious of our health, and thankful for what health we have, etc. Thank you for stepping forward to share your observations and experiences. I commend you on your grace in the face of this situation. I am wondering about those who aren't so blessed with your knowledge, compassion, patience, or resources...? Thank you for again creating this dialog. All the best to you and your family.
Our Medical System Needs Critical Care 19 August 2005
Charlotte R. Sudakov, R. N. Jewish Family Service -- Multi-Purpose Senior Service Program Send comment to journal: Re: Our Medical System Needs Critical Care csudakov{at}dslextreme.com Charlotte R. Sudakov	Dr. Winakur, you restore my faith in physicians. How fortunate your patients are. As a 72-year-old full-time practicing nurse, I have witnessed the decline and fall of the practice and art of medicine. I am privileged to work with a Multi-Purpose Senior Program (MSSP). We serve the seniors on Medicare/Medi-Cal. Everything you have said is the truth. NEVER go to the hospital if you can possibly avoid it -- and if you must be admitted, you MUST have an alert relative/friend at your bedside. I don't think this advice is just for seniors. Of course, it would be best for the person to be a nurse, who is keeping a log. Sometimes I can fill an 8 x 10 page with my patient's medication list. My patients all suffer from vertigo. My patients are called "clients." Our agency operates on a social not medical model. Soon with Medicare Part D, their medications will be covered by Medicare rather than Medi-Cal (Medicaid in the rest of the country). I cannot even contemplate the mess that will create. Even now I intervene and insist that pharmacies/doctors write Treatment Authorization Requests for medications not on the Medi-Cal formulary. Pharmacists ask patients to pay ridiculous amounts for drugs, and patients just walk away. Medi-Cal will not pay for pull-up diapers, just the ones with tape -- awful. They did pay for Viagra for my 86-year-old cardiac patient, though. There is so much wrong. It is so broken. Most docs are apathetic -- don't care, no time, frustrated -- and most don't take Medi-Cal patients. Not enough money. And why can't the medical profession and the nursing profession join forces to change what is happening? I remember when the AMA fought bitterly to stop Medicare -- where would they all be now without it? And if some in this country have their way, there would be no Medicare -- just Pfizer, Merck, Prudential, General Motors, Ford, Standard Oil, Enron. And forget the HMOs -- NEVER join an HMO. My father died at 63 of a massive coronary. He said he never wanted to burden his children. When I graduated from nursing school, I worked in telemetry, CICU, COU. My mother lived with CHF until she was 91. There were too numerous to count 3 a.m. "I can't breathe" phone calls. She insisted on going to live at Jewish Home for the Aged, not wanting to burden me. Prior to that, she had not been in hospital for three years. In five months at that home, she was hospitalized three times, almost dead from too much potassium. They refused to treat a UTI when I had told them she had hx of bacterimia until they obtained a culture. When I complained, their treatment team said I was too involved/emeshed, that I was interfering in her care. I disenrolled her from there, and she lived the last year of her life with me. I will be working until I arrest. I'm thinking of having DNR tatooed on my chest. I carry Advance Directives with me on my home visits, for when I approach end-of-life issues with family or with the patient. I will have to make other arrangements if I become disabled in any manner and not be able to work full time. I can't afford to retire. God bless you. Thank you for your humanity. I wish you good health until your last breath. I wish you were in Los Angeles.
Home Health Care = Common-Sense Care 19 August 2005
Karin M. Entrekin, Primary Healthcare Aide, Registered Massage Therapist United Housecalls of Texas Send comment to journal: Re: Home Health Care = Common-Sense Care karinentrekin{at}netscape.net Karin M. Entrekin	The family that is not ready to deal with end-of-life issues is not ready to deal with life. The doctor has realized the importance of what the patient needs TODAY. The families are the only ones who can really manage the minute-to-minute needs of the elderly. I particularly agree with the doctor's insight into how families view the health care community as being "uncaring" or "inattentive" or "ignorant." Society tends to want to blame others for their mistakes. Often individuals or families do not reveal their needs until it's too late, and they expect the institution to remediate everything. Thus, the wise counsel for personal "sitters" who can watch for the minute-to-minute concerns of the patient. Maybe people TODAY need to see in their family that their dad or mom or uncle or aunt needs THEM. The doctor gave an example of himself having to make a sacrifice of his valuable time (possibly helping others) for his father. The issue is primarily a family one. You do not have to be a health care practitioner to know when to intervene in your parent's life! When is society going to learn that they won't always be immediately conpensated or appreciated for every little thing they do? It all boils down to how much you value other people's lives -- no matter how decrepit that life is. Be careful about how you decide for other people because that will be how YOU will be treated in future times.
Caring For An Aging Parent: Vigilance Needed 22 August 2005
Mary Jacobbe Send comment to journal: Re: Caring For An Aging Parent: Vigilance Needed mary.jacobbe{at}fmr.com Mary Jacobbe	We watched our father, hospitalized for dehydration, change from a healthy 95-year-old who could still do math in his head to a man who did not know how many children he had. The attending physician overmedicated him with ativan and seroquel because he was "restless" in the early hours of the morning. It took weeks for him to somewhat regain his previous state. Unfortunately, when he was placed in rehab, the attending physician there felt it was an inconvenience for her to take the elevator three floors down to check on him. After he had spent two weeks developing a relationship with the PT and OT staff, she had him moved upstairs to her floor. This change brought on the final downward spiral for him. After a total of five weeks in three different hospitals, he passed away in rehab. When my sister went to the nurse's station to advise that my father had died, the response was, "No one dies here, this is rehab." We were blessed for years that Dad had a caring primary care physician. But it appeared that he could have no effect on what was happening in other facilities. Anyone caring for an aging parent could benefit from reading Dr. Winakur’s article.
Sending This Article to My Kids 22 August 2005
David W. Dukes Jr., Programmer/Analyst Send comment to journal: Re: Sending This Article to My Kids dwdukes{at}yahoo.com David W. Dukes Jr.	I first heard a