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My 82yo father has been diagnosed with malignant melanoma. Before the cancer diagnosis, Dad was being treated for early Alzheimers. He lives with my 81yo mother in their mobile home of three years. We have a hospice group that helps us with meds, baths, etc. I visit them nightly under the guise of giving Dad his meds, but it's really the contact we all circle around. There is no discernable end-date; he just gets weaker.

Sue
MI


Here is how I counseled my mother,81, who died of cancer and Alzheimers' disease, to finally "let go." I encouraged her to think of all the people that she felt that she loved in her life. Next, I encouraged her to think of all the people that she knew that had loved her. Then, I asked her to sense all that love as warmth, and to move it from in her mind down to her heart. Once she felt all this "warm love" in her heart, I asked her to feel this love rise up and out of her heart area. I suggested to her that just as she felt this warm love rise up and out of her heart, that her soul could also rise up and out of her heart area, along with this love, and that this would be a comfortable way of leaving her body. I think this contemplation was a comfort to my mother, and I hope that it helped her as she passed away.

Susan
CA


Caring for my father with alzheimers was a hard thing to do, but after his death, I feel very good about devoting my time to him. I know he is in a peace-ful world, with no pain. At the time I'm taking care of my mother who has had strokes, and I feel I'm fortunate to be with her at this time. I say to her, who took care of me, all my life. I feel so good about myself that I have not neglected my parents, even though I have my own family to take care of.

Marie
Ohio


My Father-in-law is very near the end of life. There are no advanced directives. We are taking care of him at home but we have reached the point where the doctors don't want to see him anymore. He clearly should be a hospice patient but both he and his spouse won't do it out of ignorance. What can I do to convince them?

Carmen
Pennsylvania


My mother was diagnosed on April 30th, with liver cancer, then on May1 with pancreatic cancer, that had metastized to her liver. She was in the 4th stage.

One of my daughters' and her daughter, 4 years old, packed, loaded our car and drove to California, arriving in 3 1/2 days from Virginia.

My mother was delighted that we had come to take care of her. And we were staying until she didn't need us any longer. She couldn't admit that she was dying. But 7 weeks later she passed away. I was with her almost everyday. But when my siblings came into town I would leave and let them have time with mother. They all needed to have private time with her and hopefully, say things that they needed to say to eachother.

My grandmother passed away 3 weeks before my mother. It was a very difficult time for all of us. Mother would not admit to her dying and therefore would not take the necessary steps to have all of her affairs in order. It has been a financial mess for my family since her passing.

Mother lost strength daily. She was dancing at my daughters' wedding April 15th and sitting in a wheelchair by memorial day weekend. The work load was incredible for my brother, sister, and myself. The last week of mother's passing, we all 3 slept at her home and cared for her together. The hospice nurse would come in once a day to check on her and tell us what to expect. She would be there only an hour at the most. We were so exhausted and yet we knew that she and we would not want it any other way. It took all 3 of us to change her diaper, bathe her, etc. But we did it!! We kept her home where she died and then we washed her body, painted her nails, and made her ready to go to the funeral home. Hospice would not show up for 3 1/2 hours later, and then the mortuary would not come until 5 hours after mother passed. It was very trying.

We (my sister, brother, and I) went to the funeral home and made arrangements as Mother did not want to plan her funeral as she couldn't believe she was dying. We were so thankful that we had planned it, as she only lived 2 weeks after that.

I have learned that we need to be prepared and not leave anything undone for our children to do. It's not fair to them.

I adored my Mother and shared her last 7 weeks with her. We cried together, talked, and tried to share all we could. I knew she wouldn't live long and tried to prepare her. Yes,

I would do it all over again. I wouldn't want a stranger taking care of my loved one if I was physically able to care for them.

Kathy
VA


In caring for my mother I learned as a caregiver how hard it was for her to accept me as her caregiver. having been a hospice nurse for several years, she felt I knew too much and that she could not protect me from her disease. She would ask questions and when given the answer, she would get upset with me. What I learned that has been of the most value to me as a nurse and caregiver is that, often denial is not that but that it is a form of coping and a way for a person to control their destiny and protect their family... to allow themselves a bit of privacy as they learn how to cope. I am grateful for that!

Tracey
NY


My husband is in the last stages of emphysema/copd and doesn't wish to communicate with me or discuss it in any length regarding feelings or preparation. He just is so scared of dying. I have difficulty trying to find words of comfort. A project on our home this past month has helped take his mind off himself at times but I fear when this is done and the people that have been working for us are gone he will fall farther into depression. Doctors have warned that if he gets pneumonia in his condition (he has very little lung capacity left) that could be fatal and have warned that he doesn't have much time left. The program was so important to me and helped so much. I wish I could get my husband to watch it with me but he won't.

Joyce
MI


I did my best to caretake my mother at home. Myproblem is that I have no family and I could not afford 24 hour a day care she needs or do it lmyself kas I had 5 other jobs to do to just keep us going like grocery shopping and minding the family business.AGainlmy problem is no neighbors or friends or familly but high intentions.

I became burned out royally and couldn't give the care so had kto put my mother in what kseemed like the best choice of this smalltown area. I had hoped for activity and socializing and people caring for people through their spirits. Instead my mother is isolated in her kroom andthe activities are minimal and when theydo occur treat the client as a chi8ld without a mind. k My mother is lonely and suffering and I can't find the bridge betwwen home and care - a place that operates out of the heart. I amdesperate as I know I can't kdo t but don't know how to find the right kconnect in terms of very personal ,loving care I need. lThere isli ited time to try out places - I thought this place fit the bill and once in it is a night mare?

Ohio


In l983 my mother died from breast cancer; her name was Grace and she was my best friend. I was 20. My family fell apart. Two months later I went off to nursing school. Twenty years later I still work as a RN and have witnessed not only death many times but the upheavel and the healing that can occur when people hear the bad news-cancer, nothing else we can do. I did not know she was so sick because my parents chose not to tell my sister & I yet we knew. The silence was unhealthy. Death, like other life events, needs to be shared, talked about, experienced fully within the circle of family, community and health care providers. This is my vision.

Christi
Colorado


caregiving is a struggle sometimes and a gift at other times. My mother is in a skilled nursing facility.

Lindy
CA


Viewed your program last night and was extremely touched by it. I dicussed it with my husband this morning.I only saw good and positive actions but I"m living some very negative days with my husband, that has terminal lung cancer. It's the when will it happen ? We both can talk about death and he keeps telling me that's it's been his best summer ever with the many yellow flowers that I have planted for him.The yard is covered with yellow flowers.But like the wife of the throat cancer patient I can give him the very best everyday but that does not take the cancer away .Everytime I look at him I feel like we are just like when we first started dating so it makes my caring for him so much easier. w We have been married for 43 years.One day at a time and to live it to the fullest. He is part of my world but I got to tell myself that I'm not the one with the cancer and I have got to protect myself for not losing track of my own life. But it is so hard at times.Oh so HARD! The care at home is so g

Jeanne
Canada


Carinf for my mother who was dying from Met. Breast Cancer, changed my entire life. I am an RN but as a result of this experience my nursing career has focused on Oncology patients and currently Supportive Care of the Dying and Pain Management.

Kathy
New Jersey


Re: Problems w/only sister & my mom's terminal condition

Two years ago, my only sibling (sister) convinced our estate atty; who had power of atty over my mother per my father's mandate -- to move mother out of our home state and relocate to her to Maine where she lives w/her husband & 2 children. It made sense at the time because I have chronic illness and was advised to relocate to dryer climate and my mom was very depressed and it was thought being w/grandchildren would help.

This arrangement seemed to work out fine at first. I moved to the beautiful state of NM & my mom moved to a wonderful nursing home in Maine and got to see her grandkids every week. She seemed to be real stable the first year. Now, her neuro problem which is a complex one -- neurosurgery complications from head injury which led to severe epliepsy w/strokes, seizures & dementia.

Last year, I was called to ME and my sister was hysterical over mom's being put in hospice unit of nursing home. My sister can't handle death. I believe in euthanasia under certain circumstances and so does my mother. I know my mom wants only pallative care and to be out of her miserable existence. My sister can't seem to accept this. She thinks death is the worst thing that can happen. My mom survived 5 days of dehydration and nothing but IV morphine. She had lost her swallowing & we purseauded my sister not to put feeding tube in. Well, the fact that mom survived this ordeal; really didn't help my sister's attitude in the long run.

This past year, Mother has been having bouts w/pneumonia, severe seizures. She has lost more speech and memory. The dementia is increasing. Her grandchildren don't visit much. My sister no longer visits every day, which I think is appropriate. Even though we don't get along -- I wish my sister no harm. I pray my sister is learning to let go, but the Nursing Home staff is mortified by my sister's decisions and inability to empathize w/mother's suffering. Is there anyone out there who can lend me some advice on how to help my mother and deal w/my sister?

Susan
New Mexico


I AM A CAREGIVER TO A MAN WHO HAS ALS AND I KNOW THE HARD TIMES HE GOES THOUGH FROM DAY TO DAY HE HAS BEEN ON MANY DIFFERNT TYPES OF PAIN MEDICATIONS FOR ALMOST 3 YEARS NOW AND THE PAIN IS WORSE AND GOD I SOME ONE WANTS TO HELP HIM END IT ALL BUT I KNOW IT IS WRONG I LOVE HIM AND CARE FOR HIM HE IS TO THE POINT OF GIVING UP ON EVERY THING.ONCE AGAIN THANKS FOR THESE SHOWS TO OPEN MY EYES TO A NEW LIFE AND OUT LOOK ON DEATH .

Ruth
Pennsylvania


I am a caregiver for both of my parents. My mom recently passed away she had the end stages of Renal failure along with congestive heart failure. My parents moved with us when moms illness progressed and my father needed help. In moms last few months it got really hard on all. She had broken her hip and was unable to walk again.I must admit i got burnt out after so many months. I didnt mean to but i felt i had to breathe more. I felt like i was surrounded by death every day. We had nurses in and out of our home on daily basis.I cant lie, it is hard as hell being a caregiver. Now i have my dad to attend to and tho i have learned from mom i hope we can cope better this time.I would do it over and over a million times cuz parents dont belong in nursing homes..

Debbie
Florida


My experiences as a caregiver and watching patients die were varied--in the 3 cases involved--But in the most devestating one--I have seen nothing so far to compare to my experience--

Gretchen
LA


I was primary caregiver for a friend with terminal cancer.He treid several types of chemo but was finally told there was no further treatment that would not severly impair his existing quality of life.It was an honor to help and provide witness to his struggle and later acceptance of his diagnosis.We had many discussions about the definition of a "good" death and I accepted his definition.I agreed to help him accomplish this if I was able. It was only because we had these discussions that I had the information necessary to communicate effectively with the doctors. They seemed relieved to be able to discuss the issue freely. In the end my friend needed alot of pain meds and I was able to enlist the docs in the paim mgmt. approach by having them present in the room with my friend so he could verbalize his desire to have adequate pain control in spite of the risks of high doses.He died peacefully, in his sister's arms, without pain.

Tina
VA


I worked in nursing facilities for 7 years as an activity director, seeing the many people

there because they lacked the family support and funds to remain in their own homes. I

cherish the peace of mind and independence good long term care insurance can provide

families, allowing them to be part of the plan without having to be the full time caregivers, and allowing them the freedom to be there for the finer things, like hand holding or more, if possible. Care coordinators provided by good LTC insurance can find the equipment, the help and the support necessary for the ill person to function at their highest possible level, and permit the family to contribute in ways that are most appropriate for their capabilities,with less probability of burnout and personal problems like depression- and even premature death due to over-caring. As a baby boomer, I know I need to be prepared for my care and not depend on the government to cover me and my 79,000.000 cohorts.

Barbara
CA


My 2 1/2 year old daughter died suddenly w/o warning.. but my son died slowly. He was a twin and as he reached the last three months of his life, his twin brother drove a 100 miles one way each day to bath him, sit with him and care for him.

In this I saw my healthy son learn to be a compassionate human being. To grow from young intelligent person to a man filled with wisdom.

The caring for his brother was not only an act of brotherly love, but an act that would connect them throughout his life. It prepared him for saying good bye.

Suzanne
Oregon


I feel that now, after having experienced the death of my first Spouse nineteen years ago and after having watched Bill Moyers presentation of "in my own terms" my thoughts about

the experience of dying seem to center upon the common humaness of what can be our most terrible and lonesome experiences. To this realization, I feel I want to reach out to my nearest neighbor , hold his or her hand and reflect together that we do not ask "for whom the bell tolls" for we realize it tolls for thee and ...me.

Ed
Florida


We found out this summer that my Mother has A Brain Tumor. She is 70 and was working fulltime and watching my 3 year old when we found out. Now she can not use her left side and is getting worse every day. She need constant care. I work fulltime and have 3 boys 3,6,and 8.

My sister and father are with her in the days. My brother and father and niece (who lives there) are with her evenings and nights and I just run back and forth bringing all the meals and making homemade breads and icecreams or whatever I can think of to bring her some joy. I spend as much of my weekends with her as I can (and still give of myself to my family) and for the last two weeks have been able to take her to Church, But it is so hard on her I'm not sure how much longer I can get her there.

Mom has always been the world to me (I can hardly remember a day in my life that we have not talked) and we have often said that one of us can't think or say anything that the other does not. Her mind is still there when she is not out of it on meds. (and thats more and more now) But already I miss her so much it hurts all the time. I want her back but the noone gives us much hope or time.

Donna
WV


The greatest reward is knowing that your

caregiving is making the difference between

dwelling on life's closure and actually living

life to it's fullest potential. Just as we

are babies being cared for when we arrive in

this world, we need the same loving and constant care

when we are in the process of leaving this world.

Julie
Massachusetts


Thanks to daily care of my sister and the visiting nurses hospice program, we were able to keep my father at home for 2 to 3 years after he became bedridden. It was especilly difficult because my mother had a very hard time dealing with it, even though we did our best to relieve her of as much responsibiity as we could. My two sisters and my mother and my son happened to be there when he died suddenly of a stroke. My brother and I had both been with him within 48 hours. My sisters and I were able to dress him for burial and I can't express how meaningful this was to us. We planned a memorial for him at home, a ritual that

was meaningful for us as a family and we cooked for a feast in celebration of his life.

Judy
MA


MY HUSBAND AND FATHER OF OUR FOUR GREAT CHILDREN HAS ALS AND WISHES TO END HIS LIFE HE CAN't MOVE OR SPEAK WE ARE HAVING A DIFFICULT TIME TRYING TO ARRANGE HIS WISHES TO GET THE MORPHINE DRIP WE AS A FAMILY NEED COUNSELING

Please forgive me .I just sent a message about my husband who has A.L.S. He has had it or was told four years ago he has it how long no one truly knows the thing is he is on a vent,he has been on one for 2years it is heard to believe he has been albe to stand connected to a machine and not albe to move or speak.it has been very difficult for everyone he was only 51 years when this nightmere began he trys not to get mad he want to end his life we need help .

Betty
Florida


For the many families caring for a loved one at home, there is an excellent video Home Nursing Care: A Practical Guide for Family Caregivers. This is one of the rare videos that actually teaches family members how to provide hands-on care. It includes information on creating a safe and comfortable environment, positioning and moving the patient using correct body mechanics, providing personal care, and suggests ways in which the caregiver can maintain his or her physical and mental health while in the taxing role of caregiver. The video is probably available at your public library - I know Arlington Co. has 2 copies in its library. The reviews have been excellent!

Midge
VA



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