Alzheimer's vs. Cancer

What would you do if?

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cnorman18

Alzheimer's vs. Cancer

Post #1

Post by cnorman18 »

As many here know, I make my living as a caregiver for the elderly. I am the alternative to the nursing home; I help my clients live out their last days with dignity, in cleanliness and comfort, in their homes. Since I began this work a few years ago, I have been present at the passing of five of my clients.

My current client is an elderly man with, at this point, moderate Alzheimer's disease. That is a one-way road, and it gets pretty dark toward the end. Patients in the last stages are often constantly terrified - every place is a strange and frightening place and everyone a stranger to be distrusted and feared. It's a very, very hard way to go.

That prognosis is difficult enough for his family to deal with; but he also has terminal cancer. It is "treatable, but not curable." Chemotherapy will extend his life to some degree, but at the expense of some discomfort, which may grow worse with time.

The dilemma should be obvious, but to spell it out: should he undergo treatment, or not?

Life extension, when one has Alzheimer's, is a mixed blessing; if it involves additional pain, it is even harder to contemplate. Would it be kinder to allow him more time with his family before the disease grows more debilitating, and risk possibly extending the suffering of that terrible disease? Or to allow the cancer to take him before he is living among strangers?

I am grateful that this decision is not mine to make, but as often happens, I have become an adjunct member of the family and am there for many of the discussions. It's hard to watch. The consensus thus far is to proceed with treatment as long as he tolerates it well; so far, the side effects have been mild and not painful or difficult for him. If it grows harder, they will stop the treatment and let nature take its course.

We are only at the beginning of this journey; he is beginning to come "unstuck" in time, occasionally unsure if he is at home and who his wife (of almost 50 years) is; but most of the time he's still pretty well connected. The cancer is not yet giving him discomfort. Both will gradually grow worse.

I just wonder how others would answer this question. I don't think that religious questions are particularly important here; the question just seems to me to be, what's the right thing to do? It seems to me that the family is making a good and reasonable choice.

Any thoughts?

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Post #11

Post by Jonah »

It sounds like folks are using a good gut sense to navigate these events. I guess I would describe it as striving to protect and further the most life possible in a meaningful qualitative sense.

My mother had a severe stroke and was in a nursing home for three years before she passed. Important questions came up.

Her brain was severely damaged and her cognitive level was kicked down to a child's. Except for repeated bouts of pneumonia, she achieved a certain physical/medical stability. Her personality was quite different. In essence, I had a new mother. I experienced her as a new person in my life.

My old mother had a living will drawn up, and had very certain ideas of what she expected her demise to be, and how it would all go. She was a smoker and expected cancer. She didn't think of a possible stroke, and certainly I didn't either.

It was weird. As soon as my mother had her stroke, I had people in my ear about what they would want...about what my mother wanted or would have wanted...the living will...yada yada yada. We were no where near any medical point of pulling plugs or yanking feeding tubes...yet, so many had this discourse, almost with themselves.

The thing I dealt with, as power of attorney and son, was that I had this new smiling person in a nursing home bed whom I did not know. But, she was full well alive and rather one of the nurses' favorites because she was so responsive to their care with laughs and smiles and attempts to communicate.

The thought came to me that I was in entirely uncharted waters. The thought came to me that whatever my mothers former "wants" were...about never wanting to go to a nursing home were completely moot. I had to deal with the person in front of me, not the one who went to a lawyer years before with certain ideas about how it would all go. I was accountable to the life before me, and personally, I found that a religious experience as a Jew.

Blessings to you cnorman in your work.

cnorman18

Alzheimer's vs. Cancer

Post #12

Post by cnorman18 »

Jonah wrote:It sounds like folks are using a good gut sense to navigate these events. I guess I would describe it as striving to protect and further the most life possible in a meaningful qualitative sense.

My mother had a severe stroke and was in a nursing home for three years before she passed. Important questions came up.

Her brain was severely damaged and her cognitive level was kicked down to a child's. Except for repeated bouts of pneumonia, she achieved a certain physical/medical stability. Her personality was quite different. In essence, I had a new mother. I experienced her as a new person in my life.

My old mother had a living will drawn up, and had very certain ideas of what she expected her demise to be, and how it would all go. She was a smoker and expected cancer. She didn't think of a possible stroke, and certainly I didn't either.

It was weird. As soon as my mother had her stroke, I had people in my ear about what they would want...about what my mother wanted or would have wanted...the living will...yada yada yada. We were no where near any medical point of pulling plugs or yanking feeding tubes...yet, so many had this discourse, almost with themselves.

The thing I dealt with, as power of attorney and son, was that I had this new smiling person in a nursing home bed whom I did not know. But, she was full well alive and rather one of the nurses' favorites because she was so responsive to their care with laughs and smiles and attempts to communicate.

The thought came to me that I was in entirely uncharted waters. The thought came to me that whatever my mothers former "wants" were...about never wanting to go to a nursing home were completely moot. I had to deal with the person in front of me, not the one who went to a lawyer years before with certain ideas about how it would all go. I was accountable to the life before me, and personally, I found that a religious experience as a Jew.

Blessings to you cnorman in your work.
Thank you so much for your kind words and thoughts, and my condolences of the loss of your mother. It sounds like the aftermath of her stroke was rather benign, as those things go. You and she were blessed. I have seen it go otherwise.

PM follows.

Charles

cnorman18

Update

Post #13

Post by cnorman18 »

My former client, Bill, continues to go downhill, but very slowly. He still has no symptoms from his cancer, is perfectly comfortable, and continues to slowly lose his cognitive abilities. He still knows everyone in his life, but he can get lost in his own home.

I keep in touch with Bill and his wife, though I am no longer in charge of their care. I went independent on September first. I was to care for an elderly couple, but she passed away last Friday night and now I care for her husband only.

cnorman18

Alzheimer's vs. Cancer

Post #14

Post by cnorman18 »

Update:

Bill passed away a few days ago. He was still Bill, and knew everyone in his life and remained lucid up to the end.

To my surprise and great honor, I was asked to give Bill's eulogy. I remain in contact with his widow and daughter; we have become friends, and in fact they have told me that they consider me family. Though I am largely estranged from my own family, I seem to have gained four new families in the past few years.

Anyway, cancer won the race, and in this case that was no bad thing. Thanks to all for your interest and support.

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Re: Alzheimer's vs. Cancer

Post #15

Post by Goat »

cnorman18 wrote:Update:

Bill passed away a few days ago. He was still Bill, and knew everyone in his life and remained lucid up to the end.

To my surprise and great honor, I was asked to give Bill's eulogy. I remain in contact with his widow and daughter; we have become friends, and in fact they have told me that they consider me family. Though I am largely estranged from my own family, I seem to have gained four new families in the past few years.

Anyway, cancer won the race, and in this case that was no bad thing. Thanks to all for your interest and support.
I am sorry for the loss. I will agree that passing away from cancer (if it is reasonably painless) is a lot less trauma to the family than having to see someone slip into dementia. I hope he died with a minimal amount of pain, and with keeping his dignity intact.
“What do you think science is? There is nothing magical about science. It is simply a systematic way for carefully and thoroughly observing nature and using consistent logic to evaluate results. So which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic?�

Steven Novella

cnorman18

Re: Alzheimer's vs. Cancer

Post #16

Post by cnorman18 »

goat wrote:
cnorman18 wrote:Update:

Bill passed away a few days ago. He was still Bill, and knew everyone in his life and remained lucid up to the end.

To my surprise and great honor, I was asked to give Bill's eulogy. I remain in contact with his widow and daughter; we have become friends, and in fact they have told me that they consider me family. Though I am largely estranged from my own family, I seem to have gained four new families in the past few years.

Anyway, cancer won the race, and in this case that was no bad thing. Thanks to all for your interest and support.
I am sorry for the loss. I will agree that passing away from cancer (if it is reasonably painless) is a lot less trauma to the family than having to see someone slip into dementia. I hope he died with a minimal amount of pain, and with keeping his dignity intact.
Bill's passing was relatively painless, according to the family. He remained the dour old sailor he had been all his life.

Thanks for the condolences. This comes with the job; I have lost six clients since I started this work about five years ago, four of them while I was at their sides.

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Post #17

Post by LiamOS »

I must commend you in being a carer for the elderly. I greatly respect that, as it is something I could not even comprehend doing; I have no faith in or time for humanity.

The idea of death does not at all worry me. I only wish that it not be prolonged or painful for anybody who is dying(Oh, the naivety.)
Should I have a hand in my death, I'd like to do something extravagant like wingsuit-base jumping with no parachute after taking some acid, or doing something in space if I live long enough for that to be feasible.

cnorman18

Alzheimer's vs. Cancer

Post #18

Post by cnorman18 »

AkiThePirate wrote:I must commend you in being a carer for the elderly. I greatly respect that, as it is something I could not even comprehend doing; I have no faith in or time for humanity.
Thanks very much. It's what I do, I like it, and I seem to be good at it. I get very close to my charges, and seem to be considered family by the time they pass on. My job is to help people live out the last of their days with dignity and in comfort, and I'm very dedicated to doing that. I find it very fulfilling.

The best thing about it is knowing that I make my living in an ethical and positive manner; I never go to bed wondering if I've done anyone any good that day.

The idea of death does not at all worry me. I only wish that it not be prolonged or painful for anybody who is dying(Oh, the naivety.)
Should I have a hand in my death, I'd like to do something extravagant like wingsuit-base jumping with no parachute after taking some acid, or doing something in space if I live long enough for that to be feasible.
I decided long ago that I want to die in the same manner that Groucho Marx wanted; I want to be shot in the back by a jealous husband at the age of 102.

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Post #19

Post by BwhoUR »

I too, have major problems with my family and am estranged from them. My mother has alzheimers and it kills me that I can't help her or be involved in her care (don't ask, it's ugly). My decision to protect myself and my family is a good one and I understand that things won't change until my dad dies.

My mom has trouble swallowing now, she doesn't remember my dad a lot of the time and always asks to go home. I wouldn't wish this disease on anyone and if there's a chance I too may develop alzheimers, let's just say I will make sure I never get to that point. My mom will no doubt slowly starve to death, maybe for years, and likely she will not understand what is happening and so she will be scared most of the time and suffering.

Anyhow, I am humbled and impressed by your chosen line of work. It sounds like you're a good guy to have around.

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Post #20

Post by Misty »

Better dead than senile, imo.

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