posted 09-13-2000 07:36 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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posted 09-13-2000 07:50 PM         

quote:

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Originally posted by Carol T:
How often does caring for a slowly dying parent also cause the death of a family?

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?

[This message has been edited by Carol T (edited 09-11-2000).]

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Dear Carol

I took care of my sick mother for over four years. She passed away 6 months ago and I went through almost the same thing as you. When you become a full time care taker you have taken on another full time job. Throughout the course of caring for your mother there will be no right or wrong decisions just the best one at the time. No one will ever appreciate what you are doing until they go through it themselves. My sister did not do anything to help throughout the four years my mother was sick. The only way you can know that you are doing the right thing is by the look on your mother's face. If she is able to communicate with you I am sure that she does appreciate all that you do. My mother did not realize how ill she was and was not able to tell me if she liked what I was doing for her. The only way I could tell was by the look on her face. There would sometimes be just a glimmer of a smile that made what I was going through justified. I also felt guilty when I would enjoy something during this difficult time. When I knew I had done the right thing was after my mother passed on. I knew that all of my efforts were not in vain because I made the last years of her life have some quality and not just and existance. It is not easy and people don't understand, but you will feel the effects of what you have done after your mother is gone and you know that you did everything possible for her. It is tuff going through it but it's even tuffer to live with the guilt of not doing anything, for the rest of your life. Take it one day at a time one hour at a time and you will get through this.

God Bless

posted 09-13-2000 10:36 PM         

quote:

---

Originally posted by Carol T:
How often does caring for a slowly dying parent also cause the death of a family?

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?

[This message has been edited by Carol T (edited 09-11-2000).]

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posted 09-13-2000 11:19 PM         

As my mother's illness progressed, she seemed to lose touch with her illness, going from reluctant acceptance early on to denial later on - which made it increasingly difficult for us to let go emotionally, since she was so reluctant to.

I commented only this evening to friends watching the show with me that dying at home is really not always the best solution when everything is added into the mix - especially as I, too, got very little in the way of respite help inspite of wellmeaning people telling me to "just call anytime you need help." After several instances, where I called only to find out that this particular time was just not convenient, I, too, as some of you have said, just went it alone (family members living further away did provide some respite help - it was little things like being able to go and sit outside for a few minutes that became impossible.)

My mother entered the hospital for a period of time before we brought her home to die. And yes, I confess, it was really wonderful to be able to spend time with her in the hospital and then come home to a quiet house and good night's sleep, something that is impossible when you are on 24 hour duty.

I cherish the time I spent with my mother in her final days and would do it again although this time I would feel less guilty about my need to get away from time to time. The dream that so many people are saying they have of dying at home is one that I do not entertain for myself now that I know the price that others would pay. Now that hospitals have created wonderful "birthing" experiences, why can't hospitals/nursing homes, etc. create at least decent dying experiences - the same lovely rooms, soft music, whirlpool baths, special menus and the like that are now routine in so many maternity wards. The money that is now used for respirators, expensive drugs and the like could be redirected.

posted 09-13-2000 11:29 PM         

Of course, I thought I knew how difficult just having her live with us was going to be on my life and marriage, but no matter how hard I thought it would be, I was completely unprepared for the reality of the situation, especially after she became so sick. Toward the end, before she died I thought I simply couldn't go on anymore. I was exhausted. I had no time for myself or my husband, and I had no help. As she became sicker, she got more and more confused and wanted me with her all the time, so that even when she was in the hospital I was there almost 24 hours a day. I didn't know what I was going to do. Fortunately, I was able to take an unpaid leave of absence from my job to stay with her for the last 3 months of her life, but it was an incredibly difficult and stressful time.

Now she's gone and I have grieved and still grieve for her but I'm at peace with what happened because I know that I did the right things for her. I promised her I would never leave her or put her in a nursing home and I fulfilled those promises to her. There is no guilt, no feelings of "if only I had done such & such" and this is what gives me peace. I couldn't save her, I couldn't make her better, but I did my duty as her daughter and I will always be proud of that. These are the last and greatest things you will ever be able to do for your mother, and doing them well will allow you to go on with your life after her death without the horrible guilt that can destroy people. Try to hang to that. I don't think you'll ever be sorry that you were there for your mother. I wish I could tell you that there is a better solution out there, but I'm not sure that there is.

I am glad that this program as focused some attention on this subject. Perhaps because of that you'll be able to find other resources which can help with your mother. Hang in there.

quote:

---

Originally posted by Carol T:
How often does caring for a slowly dying parent also cause the death of a family?

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?

[This message has been edited by Carol T (edited 09-11-2000).]

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posted 09-14-2000 07:26 AM         

quote:

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Originally posted by Geri:
We have been told, this summer that my 86 Year old 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.

[This message has been edited by Geri (edited 09-12-2000).]

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posted 09-14-2000 01:00 PM         

quote:

---

Originally posted by Geri:
We have been told, this summer that my 86 Year old 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.

[This message has been edited by Geri (edited 09-12-2000).]

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posted 09-14-2000 07:04 PM         

quote:

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Originally posted by Roz:
I took care of my Father in my home for a year, he passed on 8/4. I wish Bill Moyers series had been on during the time I was caregiving. He had emphysema and dementia, I promised him I wouldn't put him in a nursing home and I didn't, but I was totally unprepared for the experience. You must put your life on hold and unless you've been a caregiver you can't possibly understand the
amount of physical and emotional energy that it takes. Now that he's gone I question if maybe I should have put him in a nursing home as my friends and family thought I should, maybe he would have lived longer. I find myself walking in circles, so to speak, not knowing what to do with myself. I feel like my Fathers dead for heavens sake how can I go on with my life? What happens to the caregiver when the caregiving ends? When I was going thru it I thought that it would never end and now that it has I don't know how to feel!

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Dear Roz,

I have had the same experience as you. I was the sole care taker of my mother for four years. I did everything for her to try and make her comfortable. In my case she did end up in a Nursing Home but only for three months until she died on 2-29-00. Since she lived with me, I too felt a sense of relief after she passed, but also a loss because there was nothing for me to do or worry about. During her final days I had to make decisions I never thought I could make, until a nurse at the extended care facility told me that there are no wrong or right decisions just the best one. There will always be that doubt and second guessing as to the decisions you made, I still do it six months after my mom's death. The only consolation I can tell you is that you did the best you could at the time with the information you had available. Remember there are no right or wrong decisions just the best one at the time. I found that a little bit of help came from the bereavement group that I attend through my local hospice organization. Try and find one near you and start attending. I doesn't make the feelings go away but it does give you a forum to express yourself with others that have gone through it. Talking about it does help. You have my deepest sympathies.

God Bless
RTV

posted 09-14-2000 10:30 PM         

1. The "Cultural Alternative" message is under Final Days, Afterwards, Death: Cultural Traditions, but it didn't work when I just tried it. It is well worth it. The message is strong: Our entire way of handling death is culturally conditioned, and Bill Moyers comes from a specific tradtion, and most PBS viewers share it. I have lived in many cultures, Hindu, Muslim, Orthodox, which do NOT share our views or his. But that was not the point of the series.

2. Family caregivers: These people have the following main issues:
A. Lack of Support and Appreciation: This is by far the most difficult to handle if the patient is difficult. Being on guard to always say and do the right thing. Realizing that when the patient gets violent, it is usually NOT a personally directed attack, but rather utter, hopeless, helpless RAGE of a kind we do not comprehend against an ugly disease that will claim them soon, and for which the cures, the chemotherapy, the morphine, the radiation, have horrible side effects (in the shows?) that again, we don't experience. The utter lack of energy. Food tastes awful. Sunrise means another day of pain. TV is awfully boring. The lack of a will to be sociable--why bother? The caregiver (that's us) will ALWAYS come back for another day of caring, regardless. So we put up with everything, the old stoic virtures put to the test. Some support groups have retreat houses. Do it.
B. Friends: They mean well, are deeply concerened, feel as helpless as we do. It sure would be nice to hear them say, How are you coping?
C. Spiritual Resources: Absolutely vital. If you have a religious faith, ride it for all you can, talk it out with clergy, with your parishoners, your mosque friends, but DO NOT TIRE them with your stories. They have their limits as well, and may or may not care or be interested. Choose your confidants with care--they are priceless.

God always listens and never grows weary of your cries for help. Read those texts, especially JOB--the famous sufferer--why Me, O God? You feel like he did. What about the patient--why me?

D. Counseling: My counselor was wise and counseled BOTH of us for 30 months. She saved me and my wife about once every six months from letting things get too wild. Tom Eagleton and Betty Ford and Pat Nixon all went public with the idea, so YOU do it too. It is NOT a weakness to say, "I am beat all to hell and need help."

E. Friends: Do not be afraid when they say, how can I help? to tell them...Yes, you can help, and it would mean a lot....Do NOT TIRE THEM....

F. Family: The toughest part is telling the kids that Mommy is not in her right mind and needs our understanding. Adults have the potential maturity to grasp it, and the kids might have insights we lack. It is vital not to include them in your gripe sessions. They have enough trials.

If you have different cultural traditions, family values, it can be truly monumnetal to deal with them, the kids, the job, the docs, the patient. Rewards are deferred but in sight.

G. Resources: Meager. I looked through hundreds of books in stores, libraries, counseling offices, at the hospice, doctor's office, websites, you name it. Two or three said caregiving was a tough job and the patient may not like what everybody tries to do for them and may get violent. Talk to the doctor about the combative nature. Zoloft may or may not help, or even enter the equation. Most printed resources, unfortunately, were useless. I won't name names here, but I can advise which were most worthwhile. The "Good, spiritually uplifitng" death counseling tomes predominate. Even the theological seminary "expert" on death and dying, teaching clergy about the field, had little to offer on this point. "You had better go learn to deal with your anger before you talk about death." Not helpful.

Most of it boils down to:
Trust your instincts.
The end is in sight, but you do not know when.
You can and will recover, the patient will not.
God is not punishing you or anybody in this whole mess.
When people offer help, take it. If they don't offer, ask.
Get hospice involved if you can, especialy the nurses who deal with it every day. They are not doctors or salespeople or fundraisers. They KNOW and sympathize.
Keep it in perspective.
Stay HEALTHY--if you get sick, who is your backup?

You are NOT guilty of abuse, no matter what the suffer says.

Any more questions, fire away. Good therapy to do this.

posted 09-14-2000 11:54 PM         

quote:

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Originally posted by alberta74:

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posted 09-15-2000 12:48 AM         

quote:

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Originally posted by DLRoberts:
My 47 ear old brother passed away April 30th of this year due to Glioblastoma Multiforme (brain cancer). He was diagnozed in May 1999 and at that time I willingly stepped up to the plate to do anything and everything I could for him.

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posted 09-15-2000 01:28 PM         

Many of things you wrote resonated with me: the sometimes paralyzing belief that I must say and do the RIGHT thing at all times, the complete rage--yes, rage (not anger)is the right word--which my sister feels at the disease, a rage which I cannot truly understand (and, god help me, I do not want to understand what it is like to be inside that rage), and your statement "sunrise means another day of pain"--yes, that's the thing that sometimes cuts the most.

I am glad you found value in spirituality. As someone who grew up without a religious tradition, my twin sister's illness is the thing which has led me on a spiritual quest of sorts. I don't find solace in the traditional belief systems, but I sometimes envy those who do. How wonderful it must be to have an institution, a book of scripture, a memorized prayer to turn to. I continue to stumble along, finding what seems right and true to me.

I've just read a wonderful book: "An Interrupted Life: The Diaries of Etty Hillesum, 1941-1943." Etty Hillesum was a Jew living in Amsterdam during WWII and her journal is a fascinating and inspiring "spiritual transformation" as the blurbs say. She talks a great deal about prayer (her diary is one form of it), something which is foreign to her at first, and she also wrestles with faith and hope in spite of the suffering her people are experiencing. I recommend it to anyone, but especially to anyone who is "homeless" as far as religion goes.

And thank you for the "most of it boils down to...." Your simple, straightforward, but insightful statements are a help to me.

You mention that there are very few books that offer valuable insight and realistic advice and support that caregivers need. Perhaps you should consider writing the book you were hoping to find. I think you have some experience, wisdom, and authenticity to share on the subject of being a caregiver for a dying person. One of your greatest gifts appears to be telling-it-like-it-is, but telling it with compassion. More of that is needed and less of the patronizing psychobabble that most books for caregivers are steeped in. You could write a wonderful, and succinct book (almost a book of meditations? After all, people in crisis can often absorb only so much information at a time) based on the kinds of things you have shared here that would be much more useful and readable. I hope you will seriously consider this.

Thank you again, and best wishes.

quote:

---

Originally posted by Bill Lathrop:
Fellow Caregivers:

1. The "Cultural Alternative" message is under Final Days, Afterwards, Death: Cultural Traditions, but it didn't work when I just tried it. It is well worth it. The message is strong: Our entire way of handling death is culturally conditioned, and Bill Moyers comes from a specific tradtion, and most PBS viewers share it. I have lived in many cultures, Hindu, Muslim, Orthodox, which do NOT share our views or his. But that was not the point of the series.

2. Family caregivers: These people have the following main issues:
A. Lack of Support and Appreciation: This is by far the most difficult to handle if the patient is difficult. Being on guard to always say and do the right thing. Realizing that when the patient gets violent, it is usually NOT a personally directed attack, but rather utter, hopeless, helpless RAGE of a kind we do not comprehend against an ugly disease that will claim them soon, and for which the cures, the chemotherapy, the morphine, the radiation, have horrible side effects (in the shows?) that again, we don't experience. The utter lack of energy. Food tastes awful. Sunrise means another day of pain. TV is awfully boring. The lack of a will to be sociable--why bother? The caregiver (that's us) will ALWAYS come back for another day of caring, regardless. So we put up with everything, the old stoic virtures put to the test. Some support groups have retreat houses. Do it.
B. Friends: They mean well, are deeply concerened, feel as helpless as we do. It sure would be nice to hear them say, How are you coping?
C. Spiritual Resources: Absolutely vital. If you have a religious faith, ride it for all you can, talk it out with clergy, with your parishoners, your mosque friends, but DO NOT TIRE them with your stories. They have their limits as well, and may or may not care or be interested. Choose your confidants with care--they are priceless.

God always listens and never grows weary of your cries for help. Read those texts, especially JOB--the famous sufferer--why Me, O God? You feel like he did. What about the patient--why me?

D. Counseling: My counselor was wise and counseled BOTH of us for 30 months. She saved me and my wife about once every six months from letting things get too wild. Tom Eagleton and Betty Ford and Pat Nixon all went public with the idea, so YOU do it too. It is NOT a weakness to say, "I am beat all to hell and need help."

E. Friends: Do not be afraid when they say, how can I help? to tell them...Yes, you can help, and it would mean a lot....Do NOT TIRE THEM....

F. Family: The toughest part is telling the kids that Mommy is not in her right mind and needs our understanding. Adults have the potential maturity to grasp it, and the kids might have insights we lack. It is vital not to include them in your gripe sessions. They have enough trials.

If you have different cultural traditions, family values, it can be truly monumnetal to deal with them, the kids, the job, the docs, the patient. Rewards are deferred but in sight.

G. Resources: Meager. I looked through hundreds of books in stores, libraries, counseling offices, at the hospice, doctor's office, websites, you name it. Two or three said caregiving was a tough job and the patient may not like what everybody tries to do for them and may get violent. Talk to the doctor about the combative nature. Zoloft may or may not help, or even enter the equation. Most printed resources, unfortunately, were useless. I won't name names here, but I can advise which were most worthwhile. The "Good, spiritually uplifitng" death counseling tomes predominate. Even the theological seminary "expert" on death and dying, teaching clergy about the field, had little to offer on this point. "You had better go learn to deal with your anger before you talk about death." Not helpful.

Most of it boils down to:
Trust your instincts.
The end is in sight, but you do not know when.
You can and will recover, the patient will not.
God is not punishing you or anybody in this whole mess.
When people offer help, take it. If they don't offer, ask.
Get hospice involved if you can, especialy the nurses who deal with it every day. They are not doctors or salespeople or fundraisers. They KNOW and sympathize.
Keep it in perspective.
Stay HEALTHY--if you get sick, who is your backup?

You are NOT guilty of abuse, no matter what the suffer says.

Any more questions, fire away. Good therapy to do this.

Your questions help me a lot. That's what this is for.

---

posted 09-15-2000 10:02 PM         

I had to put mom in a locked dementia ALF in mid-1998 due to her wandering driven by agitation. Her rare early-onset dementia disproportionally affects the frontal lobes, which caused severe psychiatric problems.

I thought she was having trouble adjusting to the facility at first, but she rapidly became verbally and physically aggressive. I would literally spend several hours multiple times/day trying to calm her down (even with outpatient psych treatment). Upshot was that this continued for _over 18 months_ (only respite I got was when mom was involuntarily committed on the geripsych ward at the state mental hospital- multiple times in 1999)

I literally in those last 18 months did not know if she would be able to stay out of a long-term psych facility (and if you think nursing homes are bad wait until you see your loved on on a psych ward...yes I know they do the best they can).

Now she's OK on a behavioral Alzheimer's ward at a local nursing home (with the latest of the late stage demtentia patients), but the reason is not a magic drug combination but that she has simply declined in the course of the disease to where she is incontinent and can't walk, talk, or feed herself. She is not cognitively aware enough of her surroundings to get psychotic much anymore (though she still gets agitated sometimes).

posted 09-15-2000 10:04 PM         

I had to put mom in a locked dementia ALF in mid-1998 due to her wandering driven by agitation. Her rare early-onset dementia disproportionally affects the frontal lobes, which caused severe psychiatric problems.

I thought she was having trouble adjusting to the facility at first, but she rapidly became verbally and physically aggressive. I would literally spend several hours multiple times/day trying to calm her down (even with outpatient psych treatment). Upshot was that this continued for _over 18 months_ (only respite I got was when mom was involuntarily committed on the geripsych ward at the state mental hospital- multiple times in 1999)

I literally in those last 18 months did not know if she would be able to stay out of a long-term psych facility (and if you think nursing homes are bad wait until you see your loved on on a psych ward...yes I know they do the best they can).

Now she's OK on a behavioral Alzheimer's ward at a local nursing home (with the latest of the late stage demtentia patients), but the reason is not a magic drug combination but that she has simply declined in the course of the disease to where she is incontinent and can't walk, talk, or feed herself. She is not cognitively aware enough of her surroundings to get psychotic much anymore (though she still gets agitated sometimes).

posted 09-15-2000 11:14 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?

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posted 09-15-2000 11:15 PM         

quote:

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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?

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posted 09-15-2000 11:42 PM         

quote:

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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?

---

posted 09-15-2000 11:43 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?

---

posted 09-15-2000 11:45 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?

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posted 09-16-2000 04:26 AM         

For those fighting the issue you might keep in mind one person can not take care of all phases of needs when so dead tired!

quote:

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Originally posted by Balice:
Geri -- My heart goes out to you. Please get some help for you and your husband. My parents were very resistant to any help from "strangers" for a long time, until they had enough crises that they realized they needed help. While resistant to the idea, they love their caregivers, and it wasn't the awful experience they had imagined. Mom even accepts being bathed by her caregiver. It is impossible to continue to give excellent, compassionate care for someone you love if you are totally worn out. God bless you!

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posted 09-17-2000 07:12 PM         

quote:

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Originally posted by Carol T:
How often does caring for a slowly dying parent also cause the death of a family?

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?

[This message has been edited by Carol T (edited 09-11-2000).]

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