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 Saving their lives 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Saving their lives
Not sure what forum this should go in, but here it is. I have no answer to this. I hope no one thinks I am wrong to even discuss the question at all. If any are offended by it, I can understand and do apologize.

The other day, on my morning off, I was having coffee with a neighbor whose husband has FTD [he's in an AFH] and I had mentioned some of the live-saving measures I had taken while my husband was in facilities and at home that, had I not intervened, would have resulted in death. Being an RN I have perhaps a little more insight into these issues than maybe a layperson would and that makes it more reflexive on my part. Many people would probably never have known there was a serious issue. My neighbor said she has done the same thing but has taken a more 'laissez-faire' approach since her husband has been in a facility, not being as fully involved in his condition as in the past.

We then discussed the fact that:
1. It is a natural and instinctive response to do this.
2. Maybe it shouldn't be done.

I know what I have saved him from, but what have I saved him for? Am I doing the wrong thing? Sure, he has a Living Will and an DNR, but the crises that precipitated the interventions were treatable conditions and I couldn't help jumping in. When we are still short of Hospice, do we continue to go to the limit?

Do any of you think this way? I doubt that I will ever change the way I deal with these things, but I do often doubt the wisdom. --Pat


Tue Mar 09, 2010 6:50 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post the right thing
Life is precious and you are a professional. Yes, there comes a time when we give up but you could not stand by and not lend a helping hand.

DrP


Tue Mar 09, 2010 7:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I know one family where the father had PSP and the son is an MD. The father was not on hospice. The son discussed with the father (and later with the mother) what he wanted to have done if he were choking, needed CPR, might be suffering a heart attack, or might have a stroke. The father clearly said "let me go."

There's also a woman in our local support group with PSP who has instructed her family to never call 911. She's only willing to go to the ER if a bone is broken or if she's bleeding.

I also have presumably healthy people in my family who have given the same orders: "let me go."

Of course this is all much easier if the person has made the decision for himself/herself, and told all parties concerned. It's much harder if the healthcare POA is making the decision about what they think the person would want.


Tue Mar 09, 2010 7:36 pm
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Location: Acton, MA
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I would never watch while Frank suffered, I'd do whatever was necessary for him to be comfortable. He is alive, but in no way is he living with any quality of life. We just had our 48th anniversary and it makes me sad that this is what our life has come to. I don't think we control the end of life, you can't second guess our maker.

Gerry


Tue Mar 09, 2010 7:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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This has been discussed in several places on the forum before, and it is not an easy question to answer, unless, as several people have just said, the person has made it very clear what their wishes are.
One of the things I find very perplexing in discussing this complex topic is that we often don't think about the fact that modern medicine has "kept people alive" when they would have died without intervention, and we often don't question that. But, letting a person die seems to bring up more moral dilemmas about "playing God", etc. Why isn't giving someone lifesaving meds or procedures considered "playing God"?
I am 59, have been extremely healthy all my life, but since I developed a stress-related heart problem in Dec. I keep thinking, what will I do if the dr. tells me I need to have surgery? I'm not ready to die, but do I want to have a procedure that could prolong my life so someday I have LBD like my dad? Absolutely not. If I can live a pretty healthy life till I'm in my 70's or more, that would be great. I don't want to be falling apart physically and mentally just to be able to say I lived till I was "old", whatever that may be for me.
Thank goodness my dad has a pretty detailed DNR and advanced directive. My sister and I have made it very clear to the ALF and the hospital where he is that if he falls and breaks something, get it fixed. But if he's having a heart attack or stroke, please let him go like he wanted. Do not call an ambulance. I had to ask the drs. to stop giving my comatose mother meds to increase heart rate, decrease heart rate, etc. after 4 days of being comatose and having them speed up and slow down her heart. I had to beg for an EEG, and wait 2 days till someone was back on duty to do it. It was heartbreaking seeing her hooked up to all these machines that she had made it clear SHE NEVER WANTED TO BE HOOKED UP TO. My sister and I felt very guilty that she was on advanced life support but my dad had POA and he could not honor her wishes nor even deal with the fact she'd been without O2 for more than 20 min.
Personally, I feel very passionate that quality of life is way more important than quantity. I do not see that these life prolonging meds my dad is on are doing anything other than prolonging his torturous life. I do not want to live like that. As my 83 year old aunt says "there are a lot worse things than dying." Her friend, whose husband was on dialysis for years, was asked by the husband's physician "are you keeping him alive for you or for him? He is almost unconscious most of the time." She finally was able to stop the dialysis and let him move on.


Tue Mar 09, 2010 9:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Good question to ask ourselves, Lynn. Are we keeping them alive for them or for us? I love my husband so much and he has been--and still is--the center of my worldly existence. In the winter of 2008-2009 alone, he almost died from:
1. Pseudomembranous colitis
2. Renal failure
3. Reaction to Risperdal
4. Septic shock

In the last three of these occasions, he was in care facilities when the problem occurred. In three of the cases he was hospitalized for at least two weeks. In case #4, I just happened to arrive for a visit and found him going into shock from urosepsis. I called 911 and he was transferred to the hospital and was in the ICU for a week. On several other occasions, before and since, I took him to the ER or took other measures that may possibly have saved his life and I felt so grateful that he recovered! But, looking at his life over this past year, I wonder if I did him any favors. :(


Tue Mar 09, 2010 10:04 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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When professionals are personally involved with the care of a loved one it is very different than thier previous charges in the field, as mentioned here I believe a time comes when we say "Enough" and we often keep them alive for our own selfish reasons, This disease is cruel and it takes our LO's a little at a time. I would never want them to suffer and I am sure I would do what I could to help them but I would also think about their quailty of life. I miss my husband every single day but not once have I wishes for him to be back, not the way he was , sure I wished numerous times that he didn't have LBD but he did and it was very touturous the last year of his life, one infection after another and each time the body responded a little less to treatments, I did get to a point where I just had to let him go, sure I panicked when we were well aware that he was in the dying process and even considered doing a feeding tube against his wishes, but my daughter brought me back to my senses reminding me of my husbands wishes and when I looked back on that final year, I knew I had to let him go .
Earlier on in the disease yes we did everything the doctors told us to do but at that point there was still quailty of life.We were still able to find good in each day!

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Tue Mar 09, 2010 10:12 pm
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Oh Pat - you guys have truly been through the mill. Do you have a counselor you talk with about this? I think I'd need to be talking regularly with someone (maybe several people) to try to answer that question. You don't need to answer this for me, but what do you think he'd want you to do if he were of sound mind? Did he ever talk about what he'd want if..... ? I need to get my own husband to verbalize more. He has a living will and all that stuff but we really need to go over it and update it when we get home. He certainly knows what I want, but I can't say he's clear, and this is a discussion we should all have with our LOs before it is too late. My children are probably sick of hearing me talk about this but I don't want there to be any question if I become very ill or am in a horrible accident.
My aunt and I talk about this a lot, and I keep telling her I will help her children accept and respect her wishes, just like I tried to have my mother's wishes carried out.
Have a good night Pat and everyone. Lynn


Tue Mar 09, 2010 10:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Thanks, everyone. Yes, the time to get the details down is when you are both healthy and before you need them. I have filled out a wonderful document in booklet form, called 'Five Wishes', which is a legal health care POA and a lot more, and goes into every detail of care, intervention, end of life and after death procedures so my kids won't have any question about my wishes.


Tue Mar 09, 2010 10:43 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post My two cents
First, I should say that my LO is a parent, not my husband. There is the age difference (she is 87) and that may be important. My mother is probably in the late middle part of this disease. She is quite clear, and has been for years, that she wants to die. We are not a religious family. Early on, when she was in her 40's, she had a beloved elderly friend who calmly took her life when she started to become a burden to her family. My LO took that as her model if and when she was in the same position. What she didn't count on was the dementia taking her ability to end her life.

I provide this background because I have come to the realization that my job with my LO is to help her to die. Not in an active or illegal way. However, I will follow my mother's wishes to not have tests done, to not send her to the emergency room unless she has broken a bone or is in a lot of pain, to not prolong her life. This attitude is different than the one that I have had for years. Earlier, I found that it was impossible for me to both care for her and to help her die. Now I have seen enough of her suffering to know that allowing an end to the suffering is caring for her.

So, I am finding out how to care for her if she should need pain management outside of the hospital setting. I am finding out more about hospice. I am talking to my family about whether we want a body or brain autopsy (I've been told that brain donation is not an option). The green POLST form was filled out years ago and is at the ready. The PCP is as committed as I am. I hope that I can remain committed when we are in the midst of the next crisis.


Tue Mar 09, 2010 11:04 pm
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The very proximity of my husband being at home with me allows me to be both 'on top of things' and very aware of his heartbreaking decline. I don't think very many advanced directives are worded in such a way as to consider dementia and it's not something we ever discussed or considered in that context.


Tue Mar 09, 2010 11:30 pm
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This discussion has been enormously helpful to me today because tomorrow I am having a talk with our PCP about whether to put my husband in the hospital for tests, or not.
In the past two weeks his body has become swollen with excess fluids, and his blood pressure has risen dramatically. He feels quite fatigued but is not in any pain. A VNA nurse has seen him two times this week and believes he is at risk for a stroke, but I am more inclined to think he has a kidney deficiency. In any case, what is the point of pinpointing his ailment -- both heart and kidney are affected -- if my concern is not prolonging his life. I do not wish to have him undergo the tests that the doctor may consider necessary for a diagnosis. I just want him to remain as comfortable as possible as his body declines. Our daily routine keeps him warm and fairly calm, and he does his best to cooperate with feeding, transfers, bathing, etc. It may be selfish on my part that I want him here with me to the end, without intrusive interventions. But I know he is safe here and getting all the care he needs. I am hoping to convey all of this to his doctor and to ask for her help in reaching for comfort and palliative care, hospice in effect, rather than seeking remedies or cures. This discussion could not be more timely for me. Thank you all. Doris

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Wed Mar 10, 2010 2:05 am
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Doris,
Just a note here and food for thought! You mention that your husband is not in any pain,This is what we all want for our lo's but for many they don't feel pain or is it they can't display it, My huhsband 8 months before he passed had what I always call the beginning of the end. I put him in the bathroom on the tiolet of course told him to call me which was not good on my part because he could not follow any commands at that point, he tried to get up and fell back so hard he cracked the toilet and fractured his T-12 in his spine, never said he had pain, he was taken to the ER and thats how the fracture was found but because of his advanced condition the Orthopedic decided against any kind of repair or fix for him, and couldn't believe he felt no pain ,now I fractured my back 2 years ago in a different place in the spine and I could barely walk and was in a great deal of pain so from this experience of my own I wonder what they really do feel in terms of pain.
I only tell you this because

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Irene Selak


Wed Mar 10, 2010 8:31 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Some very important points brought up - the difference in age between our LOs, and our relationship. Like AnnieN, my parent is in his late 80's. Until a year ago he led a very happy, healthy life. Life now has no quality at all and it's like he's being "warehoused". Not because the facility, his friends and family don't try to make his life better, but he refuses to do anything that would make him a little more cheerful, like go on the bus trips that the ALF takes people on, or participate in activities at the ALF. Since he can only be transported by a vehicle with a lift, we cannot take him anywhere, even out for a ride. When it is warmer I will insist that I at least take him outside and push him around in his wheelchair, despite his protests.
The point about advanced directives and such not really addressing dementia, that is a very good point. I'm thinking about how I can word this in my own documents so there is no question of my wishes. I talk with my own dr. about this at least once a year so she knows what I want.
If my dad were in his 40s or 50s I might feel differently, hoping for a cure or something. Who knows, it is what it is, and although I will miss him I hope for a peaceful and sudden end to what has become a horrible existence for him. Lynn


Wed Mar 10, 2010 9:01 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Doris - if you get a chance to read the posting "Slow Medicine" and watch the video that has a link there before the dr. appt. that could be most helpful to you too, I think.


Wed Mar 10, 2010 9:11 am
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