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Join the Discussion: What are your reactions to this program on Americans living an increasingly longer life, but needing more intensive, expensive and prolonged  caregiving?  What needs to change in order to address this looming crisis? How can we make change happen?

Dear FRONTLINE,

This program is very interesting to me. Some of it applies to me tremendously some of it does not apply at all.

I, like many others in the long-term care facility I live in, have a chronic illness at a relatively young age. I am not elderly, I am not suffering from dementia, I am not retired, nor will I have a retirement. Living in a long-term care facility, that is, a nursing home, is a difficult transition.

I did not and do not have family members to take care of me. I am divorced and my only son is too young (although he is a young adult) to help. Other family members are either too old and having their own health problems to personally assist me, others are too busy with their own families, and all of them, except my son, live in other states.It is true that living in a facility makes a person feel marginalized -- the state regulations almost ensure that, and there is a tremendous sense of loss from many things and the different aspects of your own life.

But is it is also true as you experience the transition of being in a facility/institution many of us fine what is truly important in life and accept that death a part of life. A lot of details contained in that last sentence is not understood by many people. Unfortunately, those are the people left with serious decisions to make. Because of that impending situation, I have tried to state and lay out my wishes and desires as much as I possibly think of while I can.

Dinah Deragisch
Boulder, Colorado

Dear FRONTLINE,

I have had the opportunity to be with two friends as they passed. This was not a burden but a gift.

The burden was the care needed prior to their passing. It took many hours to figure out how to find information on long term care, caregivers, then later home care and home funerals.

There needs to be more guidance through programs like yours for people who are struggling with situations of long term care, hospice, and dying.

In my research I did find a number of useful links for general and specific care information, such as caregiver.org, carepathways.com, and guidetolongtermcare.com

Thank you for a much needed program. Public broadcasting continues to be the gold standard in my book.

God bless all who make Frontline possible.

David Cohen
Los Angeles, CA

Dear FRONTLINE,

Frontline, what a wonderful program. I have been caring for elderly parents for more than 15 years. My mother died last year of end-stage Alzheimers, and my father, who is soon to be 90, suffers from a variety of illnesses. He is living in an Independent Living Facility near me, and I see him everyday.

I gladly and willingly care for him and try to ensure that he has a purpose to his life. That requires a lot of my time, but it is very rewarding.

What is sad about this is the strain that has developed in the relationships with my siblings. I know that it is very common for one sibling to take the lead in care for parents, especially when no one is living near to each other. But I also know that it is all too familiar for siblings to develop animosity towards that care-giver.

Such animosity serves to increase the burden on the care-giver, and all too often leads to a permanent split in the family. I have seen this occur in my husband's family, I have seen this occur in many of my friend's situations, and I now see it occuring in my own family. That is truly sad. It is not a legacy I wish to leave for my own children.

Iowa City, Iowa

Dear FRONTLINE,

Thank you. I know my thoughts and views are not invalid.I just watched my father die. I became his primary care giver for hospice (the most wonderful people). He had a second angioplasty in 2000 followed by one faily good year. The next five was a continuous round of doctors, emergency rooms, loss of memory and thought processes and emotional control along with loss of walking and standing.

It was hard to see a strong,often domonate, 170 IQ man desolve into a bitter, begging for death, and having his ass wiped, unable to move very old man.

What I learned from his death was don't let them fix your heart.When you are old and they fix your heart then you get to die from something horrid and lingering. Medical science can keep you alive but they can't make you better after a while. So folks,I am going to smoke, drink, eat cheese and steak, and keep the lipitor away. I would rather die from a heart attack when my time comes, beating my staff with my cane, joking with my customers and not letting my grandchildren see me suffer.MarieRestaurant Owner

Maire Vicknair
Lansing, MI

Dear FRONTLINE,

For several years, I have had the privledge of providing gentle massage and compassionate touch to elders in care facilities. Those who I have touched have taught me that the essence of the individual remains intact regardless of the condition of the body.

Elders in facility care often suffer from deprivation of caring human touch--something so simple, yet so profound in its impact. If our care culture reclaimed the power of the human touch, it would diminish the pain, lonliness and isolation so many elders endure.

Ann Catlin
Springfield, MO

Dear FRONTLINE,

Living Long is a double edge sword. I, like most responding, do not want to live with limited quality of life. I vote euthanasia and suspect to move in later years when life lessens to the nearest state endorsing euthanasia.

We cared for mom till her passing. She required a lot of care for CHF... the measures our medical industry took to keep her alive with lessened quality seemed a bit conceited.

Now my dad is 89 in Alz stage 3 - NO quality there, in a wheel chair and living day to day... needs one on one care, has to be fed, and wears diapers! Geez! If that's what I have to look forward to.... forget about it.

The worst part is the stress it's put on the family caregivers. Our lives are put on hold because of his caregiving demands.. it's worse than caring for a child. We've developed a web site for family caregivers working full time - workingcaregiver.com - it's a relief for us and our colleagues. This industry is sooo big and carries sooo many issues. My earlier memories of mom and dad are treasured. Their later years are ones to be forgotten.

Carol MarakWorkingcaregiver.com

Carol Marak
Austin, TX

Dear FRONTLINE,

Your program reinforced my desire to find some way of ending my life peacefully should I ever get into a state where continued existence was unbearable. But euthanasia was never mentioned on the program.

I recognize that euthansaia is not politically acceptable to discuss in public, yet, in light of the large increase expected in the over 85 population, it deserves some debate. It is not difficult to cite ethical, moral and religious objections to euthanasia, not the least of which is the possibility for abuse. Would parents opt for euthanasia merely because they don't want to be burdens to their children, or they want to die while they still have an estate to leave them? Still for some elderly and their families, euthanasia could be the least bad of poor choices, if it were legal. The last time I recall any public debate of the issue was when the film "Who's Life Is It Anyway" came out 25 years ago. It is my understanding that the Netherlands is the only country where euthanasia is legal (only if certain conditions apply). Isn't it time for the world to take another look at the subject?

Ashburn, VA

FRONTLINE's producers respond:

At the end of his extended interview, published elsewhere on this site, Dr. David Muller discusses this issue and how patients have confronted it.

Dear FRONTLINE,

Dear Frontline,

I am a doctor of physical therapy who works in the home care setting and I was glad to be able to view your program dealing with issues relating to aging. I am very concerned about the lack of Gerontologists in my geographical area and applaud the physicians on your program for specializing in this area of practice and making home visits.One component of the care of the geriatric patient that was illustrated and somewhat discussed was the chronic loss of function that leads to people requiring greater resources to remain at home or to be transferred to an institution. One major concern I have as a physical therapist is that rehabilitation professionals tend to see patients after an injury or problem has happened, and if skilled intervention were initiated, such as in fall risk reduction through balance training programs, or home safety assessments, many of these injuries could possibly be avoided.

The public and many health care providers really have minimal knowledge as what physical therapists and other allied rehabilitation professionals have to contribute to this area of geriatric care to enhance function and enable a person to remain active in their home and community.

Because the progressively increasing burden for primary care physicians in the form of increased productivity, increased governmental regulation, and increased burdens to receive reimbursement, it is impossible to evaluate all of the physical components necessary for successful functioning in the home at a 15 min visit sitting on an examination table at the physician's office. The only way to provide care for the chronic, complex, multi-system impairments is better utilization of rehabilitation services in the form of wellness and programs or consults before injuries/falls occur and before chronic ambulation and functional issues cross the threshold requiring a greater burden from society's resources, This would likely reduce the incidence of injuries and help contribute, in collaboration with their primary care physician, to stabilizing chronic impairments that lead to decreased function and thus enhance the quality of life.

Bill Anderson, PT, DPT

William Anderson
Portland, ME

Dear FRONTLINE,

Bravo! You gave us a message that none of wants to but must hear.

I sent information to my doctor who happens to teach at Texas Tech School of Medicine. She has shared the NYT article with all the directors of residency programs and says it is causing quite a stir. I have suggested that they purchase the DVD and use it as a teaching tool with medical students and residents. These are the people that have the power to do something. Maybe Frontline should send a DVD to the Dean of every medical school in the country in hopes that they will reach an essential audience if anything is to change for the better.

kae hentges
lubbock, tx

FRONTLINE's producers respond:

The writer is referring to columnist David Brooks' New York Times article - "Longer Lives Reveal the Ties That Bind Us" - that we have republished here on this web site in several places, including READINGS AND LINKS section

Dear FRONTLINE,

Thank you for pulling back the a curtain of one of the windows on a world most don't want to see but most of us, either with ourselves or our loved ones, will be faced with one day - the paradox of a long life becoming a living death.

As paralyzing as this reality is, more frightening is the blinders our society has placed on this issue of which we are just seeing the first wave of. The current system relies on individuals or inconsistent state Medicaid policies to fund care, an insufficient pool of trained caring personal aides or burned out family members to assist in the activities of daily life and a contradictory societal attitude that claims to value life but runs from anything associated with aging or disability and fails to adequately fund or supervise existing care of the elderly.

When baby boomers today attempt to use their long term care policies in the future, will the system collapse, as the hurricane insurance system has? Will there be enough workers to care for them? What needs to change? Here are 4 suggestions:

1)Support for preventative and community care programs to keep the aging active and in their communities as long as possible, including programs that provide equal funding to families to care for their elderly at home as is paid to nursing homes. Many universities are now getting into the business of providing elderly care centers and housing but these are only for the very wealthy.

2) Since most US citizens don't want to work as aides for the elderly, an immigration program that recruits and trains, provides adequate salaries and benefits to those from other countries willing to come here to care for our elderly. Or export our elderly to care in other nations who can make this a mutually beneficial industry. Our current system is relying on a limited number of aides who work multiple jobs and shifts, without health insurance of their own which affects the care provided.

3)A change in society's attitude that the elderly and infirm are useless and have no value to us in our busy lives. This could be accomplished by exposing children to the elderly to learn about the aging process and kindness in caring for others and providing more work benefits like work at home and leave for those who want to care for family members.

4)A change in laws to permit an individual to designate euthansia as a choice and an alternative to prolonged suffering in a painful or vegetatative state.

West Palm Beach, Florida

Dear FRONTLINE,

Dear Frontline, I very much enjoyed your program on living old. I am 49 years old now and for years I have viewed people growing old and seen people die both with pain and agony and very peacefully. My biggest fear is to grow old and become frail. To become old unable to take care of myself and without quality of life. I do not fear death but see death as part of life. Currently I am enrolled in college to become an registered nurse and plan to persue my BSN there after. It is my hope to help others to have a better Quality of life for what they have left. I know that you can not save the world but each person can make a difference. I hope to do that.

Thank you for this program. Death today is now hidden in hospitals, but so is the frailness of the elderly. It is so sad that we as a country are not prepared for what is coming, the increase in the large numbers of elderly that are living longer. It seems that the colleges are not able to turn out enough nurses and doctors fast enough. I will end this in saying that the gentleman,that was on this program, is so right in what he said, " Growing old is for the birds " and this can only become even more true in just the near future. Thank you again,

Michael Stine
Clarkston , Washington

Dear FRONTLINE,

The timing of this program couldn't have come at a better time for me. I am probably your youngest viewer (a mere 44 years of age) but I have been working on a research paper for my college english class. My subject is: Long-term care insurance.

I have no catastrophic illness at this time in my family, but seeing the future (my future) has changed my views. I am so "scared straight" after watching your program. It was wonderfully written and attacked the ever growing issues of elder care head on. Hooray for you! I also believe that this program should be seen by the young (high school and college students) as they have no concept of this medical epidemic.

When speaking to others at school (all my younger than myself) their first response is, "I don't want to think about it." But when I saw the statistics about the age of 85 quadrupling, I was blown away.

Thanks for the opportunity for us "younger Americans" to see what we need to do for our future. There needs to be reform in all aspects and this program brought a great light to this. As Leon Trotsky once said: "Old age is the most unexpected of all the things that happen to you."

Kathryn DeBaker
Edison, New Jersey

Dear FRONTLINE,

I was very touched by your program. I have worked in the NYC area as a home care nurse for over 10 years. This is an issue I have faced in my work often and I was pleased to see physicians advocating for clients facing end of life decisions and questioning the sustaining of life without considering it's quality.

I have often heard from patients that they are " just waiting for God to take me", "why am I still here, I've lived a very full life and I am suffering from so much pain, I'm ready to die". I truly believe that as health care providers we need to consider the consequences of sustaining life. It was refreshing to hear this viewpoint from physicians, as in my experience many never question protocol and order any test or procedure without exploring what may be best for an individual patient.

As a home care nurse I am afforded the privilege spending as much time as is necessary with each client to facilitate a close trusting relationship which often lends itself to an open discussion of this issues. I think that cost cutting measures and the advent of managed care has forced physicians to spend less and less time with their patients and has interfered with there ability to devote time to discussing these sensitive, personal decisions. I was pleased to see that some physicians are taking the bold step to speak out in our litigious society and truly connect with their patients and caregivers and educate them in all the options available.

In the brief period I spent in hospice care I learned that as a society we often view death as a negative event. This unfortunately does not allow us to embrace and accept death as a normal part of life. This approach inhibits our ability to allow patients and caregivers to openly discuss end of life issues. In my experience this has lead to referrals to hospice care so late that too few benefit from the support that it has to offer. I have found that patients are often relieved to have an open discussion about death and "permission" to let go when they can no longer go on. The support that hospice provides is also a great comfort to caregivers.

I hope that this program educates the public in the realities of aging and facilitates a desperately needed dialog about end of life issues. Thank you for covering this topic and providing a true picture of the challenges the elderly and their loved ones face.

MARY ELLEN DUNN RN MS MBA
BROOKLYN, NY

Dear FRONTLINE,

I am 36 years old. I have a 3 1/2 year old son. I'm guardian to my 73 year old tramaticly brain injured father. I'm health proxy to my 96 year old grandmother. And 2 years ago my 75 year old father-in-law had a massive stoke that required him to be transferred from Florida to New Jersey.

There is no book how to handle these situations individually nor concurrently. I've learned that health care depends on a family advocating for its loved one. I encourage every one I know, no matter what age, to have a health proxy, will, and long-term health insurance. Catastrophic events occur suddenly and unexpectedly. Caregivers must be able to know a person's health care wishes when the person is unable to communicate.

I made the decision three times not to treat my father, to prolong his life. Each time, without treatment he has survived and has a meaningful quality of life. I was even called a murderer by a doctor for not resuscitating my 103 year old great grandmother.

Care of my family has forced me to make the most difficult decisions of my life multiple times now. The only solice I have in my choices is the documentation my loved one has given me to follow. Even so I've had to fight doctors to follow my loved one's wishes.

Life is precious, so is dying with dignity.

Martha Yasso
Garden City, New York

Dear FRONTLINE,

I watched the Frontline documentary. If I had a prayer, it would be that I get wiped out long before I become incontinent or be dependent on anyone. Failing that, I'll put my affairs in order when the time comes, and opt for the 9 mm bullet solution.

I am an immigrant. I came to this country to help my family have a better life, and I did that. I'll contribute to this country's welfare until my health gives out, and that's it for me: living for ever was never on my list of favorite activities.

I hope that I will have the guts and the determination to do what I intend to do.

Vietnhi Phuvan
Manhattan, NY

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posted nov. 21, 2006

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