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photo of a man taking care of an older woman

Discussion: Your Personal Story ... Share your story of caring for an elderly loved one in the last part of their life:   What this involved and how it has affected you and your family.

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,

In September of 2005 my paternal grandmother was hospitalized at 91, as doctors needed to remove an obstruction from her bowels. The obstruction was a diseased and knotted portion of her intestines which was causing her to vomit anything she put down. After that a tube was inserted for her to be feed as the bowel healed and began it's "new life". Doctors bragged on her health at 91, even saying they were learning from her about what a body is able to withstand.

During that healing time she was moved into a rehabilitation facility for help in rebuilding her strength, including swallowing abilities. The hope from doctors, and our family, was that she'd move from there to her assisted living facility again.

Shortly later, due to lack of interest by nurses in rehabilitation, she developed aspiration pnuemonia - a nurse allowed her to drink water which was not as perscribed. Days later she was moved back to the hospital and hospice was introduced to my family and I. Mere days after that, she passed away.

That was November 2005. Within the weeks, months and now a full year all of us have had some re-evaluation time and considered the decisions that my father had to make, though he took input from my mother, sister and I. It was an agonizing time, because we too felt like God will handle her care, however her weight loss and discomfort, dementia, pain and more were evident and enough to alone cause us to question our intervention.

Health and care and the elder is not easy. Now, my maternal grandmother at 82 is facing triple bypass surgery and valve replacement in December. My family prayers we won't face a similar situation.

Thank you for this show...very well documented and the right concerns were hit.

Fort Worth, Texas

Dear FRONTLINE,

To the Producers of Frontline:

I and my husband were the caretakers for my elderly mother, who lived in the same building in New York as we did. I am the youngest of three children, but the only daughter. My parents' two (2) sons live outside of the New York metropolitan area. In essence, I and my husband were left with the responsibility of my mother's care. The first sign of trouble was when my mother, who suffered from rheumatoid arthritis, spinalstinosis, and, some years earlier, survived a stroke, was unable to walk. My husband convinced her to get an operation on her spinal chord to relieve the pressure on the nerves of her spinal chord. However, in the hospital, she was diagnosed with non-hodgkins lymphoma or cancer of the lymph nodes, which had metastisized. Her cancer had spread to the adrenalin gland and her heart. She had a tumor in her heart and periochardal fluid in her heart. Basically, from this hospital stay forward, at the age of 83, my mother, who had been a business woman, and, who, at the age of 53, graduated from City College in New York, became bedridden and dependent on others for her care.

An extremely bright, intelligent woman, who survived the Holocaust, my mother was a very resourcesful woman, who managed to stay one step ahead of the Nazis (never having been incarcerated in a concentration camp). She spoke eight languages fluently, and eluded the Nazis grip, by escaping from her native country, Austria, to Belguim, France and, finally, crossing the French border into Switzerland in 1944, along with my father and their two small sons, ages 5 and 6, respectively. She prided herself on her independence. However, this illness impacted her mental acuity. She was operated on to create a window for the periochardal fluid. After her operation, and chemotherapy, she developed dementia. After several hospital stays of several weeks and, at one time, several months, my mother returned, each time, to her home. I, as her designated caretaker, was in charge of hiring personel to care for her, pr

oviding her with food, medical care and medicine. It was an all encompassing and time consuming endeavor - caring for my mother. However, I did it willingly, because she had been part of my nuclear family, before her illness, and I loved her very much. My father had passed away, many years earlier, leaving her a young widow. I can honestly say that her dementia came as a total surprise to me. She had such a vibrant, and strong personality and character. I always looked upon her as my pillar of strength. However, I saw to it that she had excellent care. The people, caring for her daily needs, treated her as if she was a member of their family. I'd like to add that my mother gave me power of attorney when my father died, because she trusted me. I never ever gave her areason to distrust me. My concern was always for her welfare and her care. I wanted her to be as comfortable as possible. She told me numerous times that she did not want to go to a nursing home. Therefore, she lived at home until several days before her death, when she succumbed to Bladder Cancer in the hospital. After she died, I discovered that her two sons were planning to prevent me from inheriting from my mother's estate - contrary to her wishes. She was ill for seven years. It has left me bitterly disappointed and angry. I cared for my mother and their mother. However, instead of appreciating the time and effort I spent caring for OUR mother; they cared nothing for her comfort and care, only for her Estate. The funds I spent on her care, which was money that she, herself, had earned, they felt should have been withheld so that they could inherit more.

New York, New York

Dear FRONTLINE,

Thank you for the excellent program. We (I and my now 98,5 year old father) have been navigating through this new and ever changing territory for the last five years. I identified with so much of the program. I was particularly comforted to find that I am not alone in my feelings and responses to my current situation. It is often very difficult. However, I experience tremendously gratifying and special moments which I will always cherish. Recently, I have wondered if there are any studies on the differences between women and men as they age? A number of important studies of differences between genders at younger ages (even grade school) have been discussed recently in the news media. Clearly we must consider these differences as we care for seniors.

Marion Thurnauer
Boulder, CO

Dear FRONTLINE,

My father-in-law moved into a wonderful assisted living facility in Iowa and lived there happily for several years. He suffered from diabetes that steadily worsened; one day he fell, went to the hospital and never returned to assisted living. He never got to say good-bye to his friends in the facility. Instead we were forced to put him into a nursing home.

The day he went into the home I asked him how he was doing and he looked at me and and said, "Phil, it doesn't matter anymore." The lack of modesty by the help/nurses, the state of the people in the nursing home was a shock to Bob. Bob, I believe, was afraid of turning into the people around him. Bob was a proud man, who did not like to ask for help, who did everything for himself and the thought of no longer being able to do simple things such as being able to go to the bathroom without help and so on, was just too much for him.

He simply gave up and decided to die. We supported his decision. Within 2 weeks my wonderful father in law died. He simply could not live in a nursing home.

His death has been very difficult on my wife, who has no other relatives.

Albuquerque, New Mexico

Dear FRONTLINE,

Thank you for an honest look at aging. I had been trying to care for my 91 yr. old father in my home. He relocated to NC after selling our family home in Indiana, leaving all his friends, doctors, and the rest of the family. I am alone in NC and found that without the support of neither family, friends, church, or support group, I could not endure the monotony nor the strain of providing 24 hour care. I am a rehab nurse and found that providing care for my father on a continuous basis was far more stressful than my full day at the hospital taking care of 6 or 7 patients.

Watching him age has brought into reality my own aging, the choices I will make. It has brought with it candid, sometimes painful conversations with my children as they have said they do not want to sacrifice their lives as they feel I am doing. I fear for my own aging. I have neither a husband, nor a lot of money and know that my options will be limited. I have never been so aware of how totally unprepared this country is as the baby boomers age. It currently is costing my father $48,000 to live in an assisted living facility. His money will last less than 18 months at which time Medicaid will pay his bill.

It is a sad situation and the man who worked in a factory all his life with the one goal of leaving a little bit of money to his children, will likely die penniless.

judy welsh
wendell, NC

Dear FRONTLINE,

Thank you for presenting this excellent show. My 85 yr old mother has dementia and has been in an excellent care facility for several years now. This once active outdoors woman is now strapped to a chair or a bed, unable to do anything for herself. This is the very life she insisted she never wanted, yet she's otherwise perfectly healthy and her "time to go" has not arrived. Unfortunately all her family lives a distance away, and we are told that moving her to a closer facility would simply hasten her mental decline, so we don't see her as often as we'd like.

Through this experience, there isn't a visit where I don't pray for Mom's end. I love her with all my heart, yet over all the years she watched my father dying a slow death of cancer she told us repeatedly - NEVER let me be like that!But, unless she develops some catastropic illness, like the show said, she will continue.

As a family we have agreed that she will have limited intervention, simply to make her comfortable. I cannot imagine putting her through surgery for anything at this point, and to do so would simply be cruelty. Everyone's time comes, but thru medical intervention I think some people's time comes, and they miss the boat. How horrible!

Jodi Holm
Salmon Arm, BC

Dear FRONTLINE,

Thanks for the very informative and poignant show on aging in America. I take care of an 87 year old man who is a bit of a hermit and now bed ridden after a fall in January. It is with lump in my throat everyday I go over there....will he be there, there, when I open the door. He refuses to go to a nursing home and I have promised to help him stay home...as long as possible. Sure makes me think of my future situation.

He is a friend of 18 years with no close family to help. I have sorta inherited Harry. I took care of my father and mother as they were checking out but had the advantage of other family members to help out and to advise me. I don't here. I am 61 and that is the dysfunction we face...with newly elderly taking care of real elderly. No simple answers are out there for now and in the foreseeable future.

Jerry Long
Arlington, Va

Dear FRONTLINE,

Thanks for this chilling look at elderly care in the USA, an excellent documentary. I decided not to put my 97-year-old mother in a nursing home and feel home care with hospice is a viable alternative which more people will consider in the future. I would like to share with your readers the address of my blog on the experience of homecaring Beatrice: http://bybeasbedside.blogspot.com/.

Alexandra Grabbe
Wellfleet, MA

FRONTLINE's producers respond:

Thank you. And, a reminder: the full program is available here on our web site for viewing online in high quality video. It and all the material on this site, and this discussion area, will be available for years this FRONTLINE site.

Dear FRONTLINE,

I taped this program to show to my sister and two brothers, because I feel it would be helpful to us in our current situation. Our dad is 92 and in Assisted Living; my mom is 88 and in the nursing home with dementia and a host of long-term physical problems ranging from A to Z. She's been in the hospital twice in the past month in such critical condition that the doctor didn't think she would survive either time.

Although she is afraid of dying, as we all are, she has a Living Will and has repeated several times in front of witnesses that she doesn't want to be kept alive. Unfortunately, my sister is not willing to let nature take its course and release our mother from her suffering. She has overruled both Mother's and the siblings' wishes. While it's not worth fighting about and causing hard feelings, I can't help feeling anger towards my sister, especially since her visits to see Mother are very few and far apart! The more I see, the more I continue to tweak my Living Will and Power of Attorney.

Sherry Karber
Brookings, SD

Dear FRONTLINE,

My father died in September of 2005 at the age of 84. When he realized that death was coming soon, he wanted to talk about it with me. We talked about God's promises of heaven alot, of his family waiting there & our great reunion there one day, of getting new bodies and no more pain or sorrow or goodbyes. He soaked it in like a sponge and when it came time for him to die, God let him see someone or something and he really wanted to go. We all said, "Bye Dad, meet you there..." Sorrow & joy.

Debbie DeLeo
Ellensburg, WA

Dear FRONTLINE,

Watching your program hit home for me, and made me shutter to think of what holds for our future. Two of my elderly grandparents are in a care facilities, where their quality of life is often debated, one suffering from Parkinsons. Another grandparent, 90 years old, lives at home on her own, but barely. Watching my parents/family care for them, and me being involved to an extent is exhausting enough right now. What will I do when it's my parents in that situation? I'm only 27, and yet the thoughts about my family's elderly care now and in the future just feels overwhelming.

Dennis Jack
Vancouver, BC, Canada

Dear FRONTLINE,

I've cared for my parents for the last 4 years and back in March I had to make the decision that it was time to let my mom (88) go. While she did die in the hospital, unlike what they depicted in Frontline they had her on what they refered to as comfort care.

It was the hospitals MD's and nurses that took me aside and conveniced me it was time, despite the fact that her life could have been prolong. No intradiction of any time, just let nature take its course. The hospital had specially trained individuals to tend to my mom and family. Even though she died in the hospital, I feel I kept my promise of letting her die a home thanks to caring medical advice. Hospitals are not just about prolonging life. In this case, they were about a peaceful ending.

Sanferd Spitzer
Eugene, OR

Dear FRONTLINE,

I am 75 years old and was recently diagnosed with emphysema, my "gold watch" for nearly 50 years of devotion to the tobacco industry.

From 1985 to 1995 I was the primary caregiver to my wife, who had multiple sclerosis. When the disease began to attack her mind, I assisted her suicide and spent time in Rikers Island for my temerity. I also declared bankruptcy.I live on Social Security and nearly full time work, but as the emphysema progresses, I suspect I will not be able to continue working.

Before I limit my childrens' choices and my grandchildrens' future, I will walk out of this show. I've paid my admission and I don't have to stick around when the show goes sour. I have lived a life far richer, in social and religious experience, than anything I imagined as a kid growing up poor. I thank God for that life and for the freedom to make a rational choice to end it.

George Delury
Carpinteria, CA

Dear FRONTLINE,

Dear Frontline- I am a 48 woman who is one of 10 siblings to a mother who has advanced Peripheral Arterial Disease or blocked arteries and who has absolutely decided to care for mother till her "time to go". She needs full time care and I have taken the responsibility to make sure she gets the care she needs. My sisters all help but I am the main caregiver. You see- 19 years ago, my Mom dropped everything to come to my home to take care of me when I was diagnosed with a very aggressive cancer and given 3 months to live. Well obviously I'm still around and now it's my turn. I had no idea until your program that Medicare paid for caretakers or that visiting nurses are available. I have driven Mom to her appts., and between my sisters and I, we provide all of her care.

Thank you for some insight not known to me and the options I have. Your program was wonderful, very enlightening and very inspirational in seeing those featured that were very spry. It was sad to see those whose lives were limited, even ending. I watch PBS and Frontline for the truth and education. Tonight, you taught me a lot.

Marlene Chora
MESA, AZ

Dear FRONTLINE,

I have been caring for my mother, who has Parkinson's Disease, for the last 6 yrs, since my father died. In the Spring of 2006, I finally decided to have her placed in a nursing home, after a hospital stay made it impossible for her to be alone. My siblings and I have explored the different ways of managing our mother's care, and it seems that if I want to have a life of my own, she will have to remain in the nursing home.

I know that I could give my mother the best possible care if she were living with me, but I am simply too selfish to do that. I also have a husband,and family to consider. My problem is that I have overwhelming guilt about not caring for my mother in my own home. I am afraid she is going to live a long time yet, and I'm just not willing to spend every day caring for my mother for the rest of her life. Does this make me a bad daughter?

Despite the fact that my mother is merely exsisting, she is worried about taking vitamins and supplements to stay healthy. I almost feel angry with her for this sometimes. She could live for years, and simply will become a vegetable, and someone will have to take care of her 24/7.

I struggle every day with these feelings. There are no simple answers to this increasingly common problem, and I'm afraid of what the future holds for my generation. Who will take care of us???

Patrice Essig
Washington, IL

Dear FRONTLINE,

I'm terrified. I want no part of what I saw. My mother is approaching 90, in basically good health. But a bit of her leaves every day. She is losing a brilliant mind. I gave up smoking to improve my health. Right now I'd give an arm for a cigarette.

Wheaton, Illinois

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posted nov. 21, 2006

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