posted 09-10-2000 10:42 PM         

quote:

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Originally posted by Stamm44:
This is a forum for family caregivers to share their experiences caring for dying loved ones. What are some ways families can share responsibilities? How can family caregivers deal with the stress involved in looking after a dying family member?

[This message has been edited by Stamm44 (edited 07-30-2000).]

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posted 09-11-2000 02:31 AM         

quote:

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Originally posted by DGCusack:
My husband just died 3 weeks ago after an 8 month battle with advanced colon and liver cancer. He was only 45 yrs old..His 78 yr old mother came to our home each day so I could at least go to work, but outside of that, my 17 yr old son and I were the only ones who were here with him day and night. Other family and friends were quick to say, oh call me if you need me, but after one bad experience asking someone to come spend the day, and listening to their whining about how it cramped their plans, I never asked again.
Looking back, I am grateful that I did have all that time to spend with him, because we did not expect the end to come so soon..I was also very fortunate to have a very understanding boss who understood my need to juggle my work schedule in order to be with dave for every appointment and test and procedure. We were able to travel to Florida and Las Vegas and the shore..Had wheelchair, did travel! We actually had a good quality of life, things almost seemed normal..
The most meaningful letter I received after Dave's funeral was from his oncologist, who thanked me for being his advocate and support, because so many do not have that fortune..Because of this, I am strongly considering a return to Nursing school..
I feel that my recovery from the grief that is so overwhelming will be helped most by the positive things I can do to remember the good times and help others to do the same.

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posted 09-11-2000 03:17 AM         

quote:

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Originally posted by Geri:
We have been told, this summer that my husband has "Classic Advanced Stages of Alzheimer's disease." We have been floundering and fighting the medical profession for 2 years. In watching the program "On Our Own Terms" it occurs to me that Alzheimer's disease is a death sentence (along with other diseases one has no control over). Because no one can say these people have only 6 months to live we are denied hospice care and other care that could be of much help. These people are slowly dying and need the help while they are aware of what is going on, not so much when they are no longer aware. Just this year I was lucky enough to get 20 hours respite time. Up to now I have been sole caregiver to my husband. We know what we have been through and we know what is ahead. He wants to die at home and I support that BUT my mental and physical bodies are broken and we are now having to consider a nursing home because we have no support other than the 20 hours respite. Of that 20 hours respite I use 8-10 hours a month for someone to bathe him as I can no longer take a chance with my back. I have to save it for when he falls or absolutely cannot get out of or into bed on his own. He wears me out trying to get him comfortable. I am awake at night administering to him and during the day to answer the phone, doorbell, daily home chores, etc. This has taken its toll on both of us. I really wish people in this situation had more support and help. We don't have family willing to help and I am sure there are others in similar positions.
We have had the same situation as DGCusack and only one friend stops by fairly regularly but is not available to give respite.

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posted 09-11-2000 01:41 PM         

My mother has a progressively debilitating neurological disease that causes bizarre personality changes and severe motor disability. My sister cared for mother in her home for over two years. I have now had mother in my home for a year. My sister and I both work full time and are able to have 24/7 care.

My sister and I are both committed to caring for mother yet we have very hard feelings about how that is accomplished. My sister was quite burned out and would not/could not consider placing mother in a facility either temporarily or permanently. Those were the most ferocious times.

I was uneasy taking mother. My husband thought it unwise and set his limits that her care would be my responsbility.

Taking mother into my home was layered on the last few years that were filled with a bout with cancer, a new marriage, a teenage daughter, 2 moves, and another bout with cancer and major surgery. Fortunately I am now cancer free.

My first choice would be to keep mother at home. But how do I deal with being worn out, with being angry with my husband for setting limits he has every right to set, with regretting the last months with my high school senior were overshadowed by demands of mother, with being angry with my sister for telling me "We all die." when I expressed concern over my own health? How do I find peace that I am a good daughter and am providing quality of life for mother when I dread going home to constant demands. I feel guilty if I enjoy anything. Past enjoyments now take on the demeanor of obligations.

Can anyone provide perspective or a path to some peace?

posted 09-11-2000 07:50 PM         

quote:

---

Originally posted by Geri:
We have been told, this summer that my husband has "Classic Advanced Stages of Alzheimer's disease." We have been floundering and fighting the medical profession for 2 years. In watching the program "On Our Own Terms" it occurs to me that Alzheimer's disease is a death sentence (along with other diseases one has no control over). Because no one can say these people have only 6 months to live we are denied hospice care and other care that could be of much help. These people are slowly dying and need the help while they are aware of what is going on, not so much when they are no longer aware. Just this year I was lucky enough to get 20 hours respite time. Up to now I have been sole caregiver to my husband. We know what we have been through and we know what is ahead. He wants to die at home and I support that BUT my mental and physical bodies are broken and we are now having to consider a nursing home because we have no support other than the 20 hours respite. Of that 20 hours respite I use 8-10 hours a month for someone to bathe him as I can no longer take a chance with my back. I have to save it for when he falls or absolutely cannot get out of or into bed on his own. He wears me out trying to get him comfortable. I am awake at night administering to him and during the day to answer the phone, doorbell, daily home chores, etc. This has taken its toll on both of us. I really wish people in this situation had more support and help. We don't have family willing to help and I am sure there are others in similar positions.
We have had the same situation as DGCusack and only one friend stops by fairly regularly but is not available to give respite.

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posted 09-11-2000 09:10 PM         

Unfortunately, it bears little resemblance to my experience. Dr. Secondy's article was the only one that spoke to me--the rest of the world, outside the Moyers version, is NOT like it at all. As one poster said, the "combative stage" may be reached. Why no discussion of the negative, destructive aspects of the dying process and the immense toll it takes on caregivers and their families? Zen is fine, but what if the dying person wants nothing to do with it?
What of the enormous class and ethnic differences in approaching life AND death?

I found the online quizzes superficial and sketchy, simplistic.

But if the purpose of the TV shows and these discussions is to introduce PBS viewers to this specific world, all to the good. But the overall impression is quite sugar-coated and focuses only on the positive aspects of the experience. Not all the dying are like the doctor analyzing himself and being insightful. Try having food thrown at you and your personal belongings tossed around by an angry dying person full of hate at the disease and displacing it on the spouse. I truly wish Mr. Moyers had covered some of this. What if the dying person doesn't fit the paradigm?

My wife was a lifelong, professional cargiver, the tops in her profession, admired and loved by all her colleagues and patients. All that changed when she had to endure 30 months of chemotherapy, CAT scans, and utter misery. She became angry, belligerent, impossible to deal with, combative, destructive, and hostile to her caregivers. Only the hospice professionals could handle her, because she respected them as medical professionals. They knew exactly what was going on and how to handle her outbursts and outrageous behavior. The doctor was an excellent specialist, tops in his field, but the nurses from the hospice dealt with many, many patients of this kind and were of immense help to us in coping with the daily realities. My counselor was wise beyond measure in help us cope.

posted 09-11-2000 11:50 PM         

quote:

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Originally posted by LaurenJean:
Dear Geri,
I know you are in a terrible situation. I am a nurse and worked in a special Alzheimers unit in a large nursing home with multiple campuses. The desire to keep your husband at home is admirable and definately better than a skilled nursing facility UNLESS it is adversely affecting your health and well-being. Your husband loves you and would not want the slow deterioration of his health to cause you illness or pain. Caregiver burnout for extended periods of time will most certainly contribute to the decline of your health. If you cannot get more than 20 hours respite care have you considered a home health aide? If your husband has NOT become combative which is common in the advanced stages, this might be an option. Just someone to help with the activities of daily living; eating, bathing, dressing etc. You might consider a college student studying nursing, pre-med, or physical therapy who would be interested in a flexible schedule, cash wages and who might be experienced or licensed as an aide. Another option might be shared time at the nursing home and home. Several patients whose wives could no longer care for them spent every day at the nursing home with their husbands sharing meals, watching tv , and visiting with friends. But then the wives could go home to rest thereby preserving their own mind and health. Another option I've witnessed is families that take their loved one home for weekends and bring them back to the nursing facility during the week. This was a fine arrangement for the calm resident and the family that worked. There are many Alz. patients who would not respond well to the constant changes so you and your physician and the nurses would have to assess your husband's temperament. I loved working in this unit as these people were very special even as they were so lost within themselves. The unit I worked on was 100% Alz. & Parkinsons and the residents had a camaraderie and unique relationship with each other that was very special. It was if they were tuned to a different frequency that you & I can't understand, but they had no trouble hearing each other. It is a tragic situation in the U.S. today that there is so little help for people like you & your husband. It is one of the reasons I am pursuing a career in Public Health and government service so I can affect public policy and healthcare reform to help citizens like yourself. I hope this info can help you in some way. Good Luck and God Bless You!

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Lauren, Thanks for the ideas. He is 86 and physically/mentally abusive to me when I tell him "no" in anything. He tells me he will go into a home then tells the people that come for that reason he won't go. I have two ribs (one on either side) "out" along with 3 bulging disks in the lower back. My shoulders and knees hurt (Arthritis?), my left hip and thigh hurts and my left foot hurts where injured earlier. With the pain and little rest I have about reached the knot in the end of the rope. So, whether he wants a stranger in the house or not I might check the Jr. College nearby and see if there is someone that would trade a room for helping me. Thanks!

posted 09-12-2000 12:00 AM         

quote:

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Originally posted by Alana:
[QUOTE]Originally posted by Geri:
[b] We have been told, this summer that my husband has "Classic Advanced Stages of Alzheimer's disease." We have been floundering and fighting the medical profession for 2 years. In watching the program "On Our Own Terms" it occurs to me that Alzheimer's disease is a death sentence (along with other diseases one has no control over). Because no one can say these people have only 6 months to live we are denied hospice care and other care that could be of much help. These people are slowly dying and need the help while they are aware of what is going on, not so much when they are no longer aware. Just this year I was lucky enough to get 20 hours respite time. Up to now I have been sole caregiver to my husband. We know what we have been through and we know what is ahead. He wants to die at home and I support that BUT my mental and physical bodies are broken and we are now having to consider a nursing home because we have no support other than the 20 hours respite. Of that 20 hours respite I use 8-10 hours a month for someone to bathe him as I can no longer take a chance with my back. I have to save it for when he falls or absolutely cannot get out of or into bed on his own. He wears me out trying to get him comfortable. I am awake at night administering to him and during the day to answer the phone, doorbell, daily home chores, etc. This has taken its toll on both of us. I really wish people in this situation had more support and help. We don't have family willing to help and I am sure there are others in similar positions.
We have had the same situation as DGCusack and only one friend stops by fairly regularly but is not available to give respite.

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[/B][/QUOTE]
Alana, Thanks for your words of encouragement. I choose to be here and really don't want to give up but my health is breaking down and I do need help. Hubby is 86 and a 32nd degree Mason but no help there. (See response to Lauren Jean's msg. to me.)

posted 09-12-2000 11:26 AM         

The weariness of it all is so hard when there is really no one else to help or even to listen. Good luck to you. Just know there are probably a good number of folks out there who are in the same boat with us... and company is good.
Carol
This is a well-produced, thoughtful TV series tht we expect from Bill Moyers and PBS. As the reviewers said, the participants are all articulate, reflective, and doing their best against long odds to come to terms with the ilness and make life as best they can for themselves and their families and caregivers.

Unfortunately, it bears little resemblance to my experience. Dr. Secondy's article was the only one that spoke to me--the rest of the world, outside the Moyers version, is NOT like it at all. As one poster said, the "combative stage" may be reached. Why no discussion of the negative, destructive aspects of the dying process and the immense toll it takes on caregivers and their families? Zen is fine, but what if the dying person wants nothing to do with it?
What of the enormous class and ethnic differences in approaching life AND death?

I found the online quizzes superficial and sketchy, simplistic.

But if the purpose of the TV shows and these discussions is to introduce PBS viewers to this specific world, all to the good. But the overall impression is quite sugar-coated and focuses only on the positive aspects of the experience. Not all the dying are like the doctor analyzing himself and being insightful. Try having food thrown at you and your personal belongings tossed around by an angry dying person full of hate at the disease and displacing it on the spouse. I truly wish Mr. Moyers had covered some of this. What if the dying person doesn't fit the paradigm?

My wife was a lifelong, professional cargiver, the tops in her profession, admired and loved by all her colleagues and patients. All that changed when she had to endure 30 months of chemotherapy, CAT scans, and utter misery. She became angry, belligerent, impossible to deal with, combative, destructive, and hostile to her caregivers. Only the hospice professionals could handle her, because she respected them as medical professionals. They knew exactly what was going on and how to handle her outbursts and outrageous behavior. The doctor was an excellent specialist, tops in his field, but the nurses from the hospice dealt with many, many patients of this kind and were of immense help to us in coping with the daily realities. My counselor was wise beyond measure in help us cope.

Has anyone else had a similar experience? [/QUOTE]

posted 09-12-2000 07:22 PM         

quote:

---

Originally posted by Bill Lathrop:

...Unfortunately, it bears little resemblance to my experience. Dr. Secondy's article was the only one that spoke to me--the rest of the world, outside the Moyers version, is NOT like it at all. As one poster said, the "combative stage" may be reached. Why no discussion of the negative, destructive aspects of the dying process and the immense toll it takes on caregivers and their families? Zen is fine, but what if the dying person wants nothing to do with it?

But if the purpose of the TV shows and these discussions is to introduce PBS viewers to this specific world, all to the good. But the overall impression is quite sugar-coated and focuses only on the positive aspects of the experience. Not all the dying are like the doctor analyzing himself and being insightful. Try having food thrown at you and your personal belongings tossed around by an angry dying person full of hate at the disease and displacing it on the spouse. I truly wish Mr. Moyers had covered some of this. What if the dying person doesn't fit the paradigm?

My wife was a lifelong, professional cargiver, the tops in her profession, admired and loved by all her colleagues and patients. All that changed when she had to endure 30 months of chemotherapy, CAT scans, and utter misery. She became angry, belligerent, impossible to deal with, combative, destructive, and hostile to her caregivers. Only the hospice professionals could handle her, because she respected them as medical professionals. They knew exactly what was going on and how to handle her outbursts and outrageous behavior. The doctor was an excellent specialist, tops in his field, but the nurses from the hospice dealt with many, many patients of this kind and were of immense help to us in coping with the daily realities. My counselor was wise beyond measure in help us cope.

Has anyone else had a similar experience? [/B]

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posted 09-12-2000 10:01 PM         

quote:

---

Originally posted by Bill Lathrop:
This is a well-produced, thoughtful TV series tht we expect from Bill Moyers and PBS. As the reviewers said, the participants are all articulate, reflective, and doing their best against long odds to come to terms with the ilness and make life as best they can for themselves and their families and caregivers.

Unfortunately, it bears little resemblance to my experience. Dr. Secondy's article was the only one that spoke to me--the rest of the world, outside the Moyers version, is NOT like it at all. As one poster said, the "combative stage" may be reached. Why no discussion of the negative, destructive aspects of the dying process and the immense toll it takes on caregivers and their families? Zen is fine, but what if the dying person wants nothing to do with it?
What of the enormous class and ethnic differences in approaching life AND death?

I found the online quizzes superficial and sketchy, simplistic.

But if the purpose of the TV shows and these discussions is to introduce PBS viewers to this specific world, all to the good. But the overall impression is quite sugar-coated and focuses only on the positive aspects of the experience. Not all the dying are like the doctor analyzing himself and being insightful. Try having food thrown at you and your personal belongings tossed around by an angry dying person full of hate at the disease and displacing it on the spouse. I truly wish Mr. Moyers had covered some of this. What if the dying person doesn't fit the paradigm?

My wife was a lifelong, professional cargiver, the tops in her profession, admired and loved by all her colleagues and patients. All that changed when she had to endure 30 months of chemotherapy, CAT scans, and utter misery. She became angry, belligerent, impossible to deal with, combative, destructive, and hostile to her caregivers. Only the hospice professionals could handle her, because she respected them as medical professionals. They knew exactly what was going on and how to handle her outbursts and outrageous behavior. The doctor was an excellent specialist, tops in his field, but the nurses from the hospice dealt with many, many patients of this kind and were of immense help to us in coping with the daily realities. My counselor was wise beyond measure in help us cope.

Has anyone else had a similar experience?

---

Overall, I found the experience the hardest thing I have ever done, and yet the most rewarding.

posted 09-12-2000 10:55 PM         

I worked during the day, so got him a pager (cell phones were not clear to me then). My boss was very understanding also.

It was frustrating having people say "take care of yourself" and yet they weren't willing to help, and could turn away and go out to their own kind of life. So I never say that to people now - I think it's more helpful to do something for a person who's caregiving than to give patronizing advice - bring food, do laundry, clean kitchen, whatever.

Between him and me, it was a close relationship grew in love and is such a wonderful landmark in my life. And an amazing experience of very little support from others.

quote:

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Originally posted by DGCusack:
My husband just died 3 weeks ago after an 8 month battle with advanced colon and liver cancer. He was only 45 yrs old..His 78 yr old mother came to our home each day so I could at least go to work, but outside of that, my 17 yr old son and I were the only ones who were here with him day and night. Other family and friends were quick to say, oh call me if you need me, but after one bad experience asking someone to come spend the day, and listening to their whining about how it cramped their plans, I never asked again....

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posted 09-12-2000 11:43 PM         

My mother was extremely agitated--almost psychotic--for the last two weeks of her life, and, despite the willingness of the hospice nurse to provide her with morphine, haldol, etc., in huge amounts, leaving the dosage up to me, she sat up in bed, banging on the rail, pulling out her catheter, signalling how badly she wanted to get out of bed, yet she was unable to stand or bathe or use the toilet on her own and had lost all capacity for communication, and she was too heavy for me to move safely.

I would spend an hour getting her to take medication every four hours, two hours trying to calm her down, and one hour getting ready to do it again. After two sleepless weeks of begging the hospice to provide her with round-the-clock care (to which she supposedly was entitled under her plan), I realized that my mother would get the care that she needed only if the hospice didn't have me to do all of the work!

Exhausted and angry, I told them that I had to go home to New York, and they immediately made arrangements for round-the-clock care for my mother. I reluctantly left on the morning of July 13, and my mother died just after midnight, on July 14--less than 24 hours after my departure.

I feel that the hospice dumped all of the work and responsibility on the one family member who stepped up to care for her with no regard for my mother's safety. They had an expectation of how her death would go, and wouldn't listen to any problems or complications that didn't fit into their picture of how it would be.

Worst of all, they ruined my final days with my mother. The thing that is most touching to me about the Moyers program is seeing these families experience love and clarity at the end. I wish it had been so for us.

posted 09-13-2000 06:31 AM         

quote:

---

Originally posted by Stamm44:
This is a forum for family caregivers to share their experiences caring for dying loved ones. What are some ways families can share responsibilities? How can family caregivers deal with the stress involved in looking after a dying family member?

[This message has been edited by Stamm44 (edited 07-30-2000).]

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posted 09-13-2000 06:45 AM         

quote:

---

Originally posted by Stamm44:
This is a forum for family caregivers to share their experiences caring for dying loved ones. What are some ways families can share responsibilities? How can family caregivers deal with the stress involved in looking after a dying family member?

[This message has been edited by Stamm44 (edited 07-30-2000).]

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posted 09-13-2000 03:15 PM         

quote:

---

Originally posted by Bev Huff:
[QUOTE]Originally posted by Bill Lathrop:
[b]This is a well-produced, thoughtful TV series tht we expect from Bill Moyers and PBS. As the reviewers said, the participants are all articulate, reflective, and doing their best against long odds to come to terms with the ilness and make life as best they can for themselves and their families and caregivers.

Unfortunately, it bears little resemblance to my experience. Dr. Secondy's article was the only one that spoke to me--the rest of the world, outside the Moyers version, is NOT like it at all. As one poster said, the "combative stage" may be reached. Why no discussion of the negative, destructive aspects of the dying process and the immense toll it takes on caregivers and their families? Zen is fine, but what if the dying person wants nothing to do with it?
What of the enormous class and ethnic differences in approaching life AND death?

I found the online quizzes superficial and sketchy, simplistic.

But if the purpose of the TV shows and these discussions is to introduce PBS viewers to this specific world, all to the good. But the overall impression is quite sugar-coated and focuses only on the positive aspects of the experience. Not all the dying are like the doctor analyzing himself and being insightful. Try having food thrown at you and your personal belongings tossed around by an angry dying person full of hate at the disease and displacing it on the spouse. I truly wish Mr. Moyers had covered some of this. What if the dying person doesn't fit the paradigm?

My wife was a lifelong, professional cargiver, the tops in her profession, admired and loved by all her colleagues and patients. All that changed when she had to endure 30 months of chemotherapy, CAT scans, and utter misery. She became angry, belligerent, impossible to deal with, combative, destructive, and hostile to her caregivers. Only the hospice professionals could handle her, because she respected them as medical professionals. They knew exactly what was going on and how to handle her outbursts and outrageous behavior. The doctor was an excellent specialist, tops in his field, but the nurses from the hospice dealt with many, many patients of this kind and were of immense help to us in coping with the daily realities. My counselor was wise beyond measure in help us cope.

Has anyone else had a similar experience?

---

Overall, I found the experience the hardest thing I have ever done, and yet the most rewarding.

Hope that helps.[/B][/QUOTE]

I am going through a similar situation with a cousin now. We were both only children and even though we were seperated by 1000 miles most of our life, we've been like brother and sister and became ectremely close over the last 10 years. She spent Christmas with us last year and it was the most wonderful one I have ever had. Upon returning home, she learned she had lung cancer. I when up and helped her after surgery and we had a big misunderstanding during that time that has seemed to snowball since. We've gone from spending a hour or two on the phone with each other every week to the point she no longer wants to see or speak to me.

She's all alone and I know she needs help, but refuses to talk or answer my calls. I love her so very much but she refuses to tear down this wall she has built. I can relate to what you went through. The rejection of someone you love and care deeply for is as hard to deal with as the other issues that surround this situation. It's dang tuff!!!

posted 09-13-2000 07:23 PM         

quote:

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Originally posted by msscott120:
My mother died of lung cancer in July of 1999: I spent a month with her at the end. As her primary caregiver, I was constantly disappointed by the hospice workers, who worked at the behest of one of the largest HMOs in California.

My mother was extremely agitated--almost psychotic--for the last two weeks of her life, and, despite the willingness of the hospice nurse to provide her with morphine, haldol, etc., in huge amounts, leaving the dosage up to me, she sat up in bed, banging on the rail, pulling out her catheter, signalling how badly she wanted to get out of bed, yet she was unable to stand or bathe or use the toilet on her own and had lost all capacity for communication, and she was too heavy for me to move safely.

I would spend an hour getting her to take medication every four hours, two hours trying to calm her down, and one hour getting ready to do it again. After two sleepless weeks of begging the hospice to provide her with round-the-clock care (to which she supposedly was entitled under her plan), I realized that my mother would get the care that she needed only if the hospice didn't have me to do all of the work!

Exhausted and angry, I told them that I had to go home to New York, and they immediately made arrangements for round-the-clock care for my mother. I reluctantly left on the morning of July 13, and my mother died just after midnight, on July 14--less than 24 hours after my departure.

I feel that the hospice dumped all of the work and responsibility on the one family member who stepped up to care for her with no regard for my mother's safety. They had an expectation of how her death would go, and wouldn't listen to any problems or complications that didn't fit into their picture of how it would be.

Worst of all, they ruined my final days with my mother. The thing that is most touching to me about the Moyers program is seeing these families experience love and clarity at the end. I wish it had been so for us.

[This message has been edited by msscott120 (edited 09-13-2000).]

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