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Old 12-04-2011, 11:11 PM   #21
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For ten months of this year, it seemed like every time I stepped foot out of my house, I was going to a cancer medical center, a nursing home or hospitals. I've seen so much suffering...

Fortunately, the doctors DH and I dealt with were compassionate and straight forward.

End of life situations are not easy tasks...
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Old 12-04-2011, 11:59 PM   #22
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Thanks for fixing the OP, Don.
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Originally Posted by donheff View Post
DW and I have been dealing with the tendency to over respond with my FiL who is in late stage Alzheimers. We get calls about weekly from the night nurses that he has fallen and hit his head. On two occasions they were inclined to take him to a hospital even though we have clear instructions to the contrary. If he has a brain bleed, the last thing we want to do is treat it. But it is very hard to hear of accidents and the like and not overreact. He entered hospice on Friday (within the same facility) so it should be much easier for all parties to proceed rationally going forward.
They're calling because they're required to notify you, right? Otherwise they're following his treatment plan and his DNR, or at least putting themselves in a position to be reminded to follow them? Hopefully they're calling more for "full disclosure" and not to start a coercive argument. I worry about this when I get those types of calls.

Was the hospice decision coming from the falls or from the progress of Alzheimer's?

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Kind of my way of thinking as well. The title does give the potential readers an idea of the subject content.
It's posters with that way of thinking who are responsible for the rule. Otherwise we wouldn't need the rule...
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Old 12-05-2011, 06:01 AM   #23
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My XDW, an RN, pretty much expressed the same sentiments - that way too much invasive care goes on when realistically, all hope is lost. The trick is to have enough knowledge to know when you have reached that tipping point. It would take a very candid doctor to share that information.

I've been involved in two CPR attempts and both failed. At my last Red Cross class, I asked the instructor to share the statistics with the class, so that they knew in advance that it probably won't work. It is a heavy burden to wonder if you somehow screwed up the CPR and let someone die.
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Old 12-05-2011, 07:01 AM   #24
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They're calling because they're required to notify you, right? Otherwise they're following his treatment plan and his DNR, or at least putting themselves in a position to be reminded to follow them? Hopefully they're calling more for "full disclosure" and not to start a coercive argument. I worry about this when I get those types of calls.
The staff are quite good and are calling out of obligation. Lots of relatives would be bent out of shape if they were not notified of every hiccup. Unfortunately, when they call they will suggest a hospital if, as an example, he has a bad nose bleed from a fall that doesn't stop bleeding quickly. That one was hard to judge -- after a while it cleared up. We also had a hospital recommendation when he was somewhat unresponsive after a fall. That one seemed easier to react to -- we would not want a CAT scan to look for brain bleeds or other damage. We don't want FIL to experience pain or discomfort but we don't want to do anything to intentionally prolong the decline. You get caught up in a lot of doubt, uncertainty and guilt over this. You never know whether you are doing the right thing or the wrong thing.

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Was the hospice decision coming from the falls or from the progress of Alzheimer's?
The progression. They evaluated him for hospice a few months ago and decided to wait. This time they think he is ready. As you know from your research, this could be a long process and he could improve and come back out of hospice. Alzheimers isn't a fast disease.
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Old 12-05-2011, 10:07 AM   #25
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For ten months of this year, it seemed like every time I stepped foot out of my house, I was going to a cancer medical center, a nursing home or hospitals. I've seen so much suffering...
My belated condolences...

I went through the same thing several years ago, seeing my father in a steady decine in his renal failure. He was in and out of so many hospitals and convalescent homes that my memories of various events are now all mixed up of what was happening where.

It affected me greatly, as I was at a severe personal crisis of my own. As both start-ups I was intimately involved with were floundering, I was contemplating a couple of full-time job offers from megacorps that I was doing consulting work for. Do I go back into shackles in exchange for some job security, or do I hang tough doing iffy part-time jobs, while the market was tanking after the dotcom bust?

Watching my father's last years made me decide to stay free of megacorps. Life is just too short, particularly for a guy approaching middle age. I do not subscribe to the current notion that 70 is the new 50, the new middle age. Hell, who's to say I will live into my 70s?

And more than that, I started to spend more money, compared to previous years when I worked hard while telling myself that I would enjoy the fruit of my labor later in my golden years. No, no, baby... If not now, then when?

To borrow the lyrics from Santana,
"You've got to change your frugal way, baby...
Before your life is over, baby..."
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Old 12-05-2011, 11:47 AM   #26
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(snip)You get caught up in a lot of doubt, uncertainty and guilt over this. You never know whether you are doing the right thing or the wrong thing.
So true Don...

In the latter stages of Alz regarding my FIL, my MIL was unable to decide whether or not to put him in a nursing home. Her daughter, (my SIL) could not bear to think of him being sent to a nursing home. Even though I felt it was time, I would not voice my opinion as he was not my father.

He fell several times and had to be taken to the hospital. He was becoming aggressive and almost impossible to handle. Several meds were tried, but it seemed as if nothing worked. It finally got to the point where they placed him in the hospital to try another med (don't remember the name). After three days, he had a heart attack and passed away.

My daddy could no longer take care of my momma, so he had to put her in the nursing home. I agreed with him as I had seen just how bad the progression can get. She fell several times as well. They could not tether her to her wheelchair, so falling for her was a problem. She was in the 'wandering' mode...this meant they had to give her drugs to slow/calm her down. Well, they did slow her down, and before we knew it, she was bedridden and could no longer walk. Even though we didn't have to worry about her falling again, she developed other problems. One of which was pneumonia...which took her life.

My MIL had so many different things wrong with her, the family decided to stop the meds and just try to keep her comfortable. We were so concerned about her being in pain, but the pain specialists did their job well.

We did the best we could with our parents, but yes...there will always be 'what ifs'.
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The progression. They evaluated him for hospice a few months ago and decided to wait. This time they think he is ready. As you know from your research, this could be a long process and he could improve and come back out of hospice. Alzheimers isn't a fast disease.
My FIL was diagnosed with Alz in November of 2002...he passed away in September of 2008. My momma was diagnosed in May of 2005 and passed away a month ago.

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(snip)My belated condolences...

Watching my father's last years made me decide to stay free of megacorps. Life is just too short, particularly for a guy approaching middle age. I do not subscribe to the current notion that 70 is the new 50, the new middle age. Hell, who's to say I will live into my 70s?
Thank you...my condolences to you NW...

Yes, losing my momma was a wake up call for me as well. I don't fret quite as much over the budget. Losing her has changed my life in many ways.
Quote:
And more than that, I started to spend more money, compared to previous years when I worked hard while telling myself that I would enjoy the fruit of my labor later in my golden years. No, no, baby... If not now, then when?

To borrow the lyrics from Santana,
"You've got to change your frugal way, baby...
Before your life is over, baby..."
I like your style.
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Old 12-05-2011, 12:26 PM   #27
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The progression. They evaluated him for hospice a few months ago and decided to wait. This time they think he is ready. As you know from your research, this could be a long process and he could improve and come back out of hospice. Alzheimers isn't a fast disease.
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We did the best we could with our parents, but yes...there will always be 'what ifs'.
Thanks. I'm taking notes.

I get similar phone calls about my father, and it's tempting to second-guess the decision my brother would make "on the scene" if he'd gotten the call before I did. But then I call my brother, we talk about the options, and I support the decision he makes. I also try not to pester for updates. It's hard enough already.

Dad took care of his insurance and his finances well enough that I don't think he'll outlive them.

Due to my dad's address change to Hawaii and his Medicare status and his previous charitable donations, the local Alzheimer's organization has started pelting us with donation requests. I shouldn't judge a book by its cover, but it's difficult to have a positive impression of a support group when their marketing is so out of touch.

I'm beginning to realize that our Alzheimer's support group is right here.
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Old 12-05-2011, 12:28 PM   #28
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I do need to add one more thought about the end of life...

Momma was in the nursing home for almost a year. During that time, she never seemed to recognize me. But she was able to recognize daddy most of the time. As a matter of fact, two days before she died, she 'puckered up' and waited on a kiss from daddy.

So, even though it may seem your loved one can not hear/understand you...never say anything you would not want them to hear. ...we just never know.
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Old 12-05-2011, 06:46 PM   #29
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My XDW, an RN, pretty much expressed the same sentiments - that way too much invasive care goes on when realistically, all hope is lost. The trick is to have enough knowledge to know when you have reached that tipping point. It would take a very candid doctor to share that information.
[/B]
I've done that many times. Once, the mother of the baby yelled at me: "you murderess!". Three weeks later, she was ready to have her baby receive palliative care. Thank goodness! The staff and physicians had significant moral distress delivering intensive care to this unfortunate baby.

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I've been involved in two CPR attempts and both failed. At my last Red Cross class, I asked the instructor to share the statistics with the class, so that they knew in advance that it probably won't work. It is a heavy burden to wonder if you somehow screwed up the CPR and let someone die.
Knowing that the survivability of a cardiac arrest outside of a hospital is <2%, you should feel good that you tried, no matter what the outcome.
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Old 12-05-2011, 06:58 PM   #30
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I've done that many times. Once, the mother of the baby yelled at me: "you murderess!". Three weeks later, she was ready to have her baby receive palliative care. Thank goodness! The staff and physicians had significant moral distress delivering intensive care to this unfortunate baby.



The kindest thing you can do for a family is give them that wake -up call . When my late husband was in the ICU for several months I basically went into denial and I thank the kidney specialist who finally gave me the wake up call and the strength to make some hard decisions .
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Old 12-05-2011, 07:07 PM   #31
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The kindest thing you can do for a family is give them that wake -up call . When my late husband was in the ICU for several months I basically went into denial and I thank the kidney specialist who finally gave me the wake up call and the strength to make some hard decisions .
Wow, that must have been difficult. Even nurses can have denial, I guess!
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Old 12-05-2011, 10:20 PM   #32
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Wow, that must have been difficult. Even nurses can have denial, I guess!
There has probably never been a human being who didn't sometimes seek refuge in denial. Life is sometimes just too painful to look it straight in the eye.

Ha
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Old 12-05-2011, 11:21 PM   #33
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It is a heavy burden to wonder if you somehow screwed up the CPR and let someone die.

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Knowing that the survivability of a cardiac arrest outside of a hospital is <2%, you should feel good that you tried, no matter what the outcome.
You may also feel better to know that wondering about it is normal, too.
I still have "what ifs" pop into my head about CPRs I ran 5 or 10 years ago, and I know many coworkers who relive such codes as well.

R/
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Old 12-06-2011, 06:57 AM   #34
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Better spell it out if you do so they won't think the acronym stands for Department of Natural Resources...
thats funny
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Old 12-06-2011, 03:28 PM   #35
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Yes. A very interesting and thought provoking article.

Just went through this situation with my friend and her family. She was put on life support and eventually had to be taken off that. In her situation (and probably many others) is there was mixed information. One doctor/nurse might say, this looks very grim, where another might say, there still is a chance the patient might bounce back. As family and friends of the patient, we want to hear what we want to hear. Some hospitals aren't the best in giving updates on how the patient is doing. So as a result, the family has to speculate.

The balancing that a family needs to do, IMHO, is to know that the family tried their best to give their loved one a fighting chance, but also know when enough is enough. Easier said than done.
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Old 12-06-2011, 04:59 PM   #36
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" But, I have often thought that the best thing for an 80+ person passed out with a heart attack would be to sit quietly with them for an hour or two before calling it in.
.
That exact scenario (almost) happened with my mom. She had a DNR order but rescinded it after going to live with my sister - her quality of life had improved dramatically (retirement home horror story), her health was fairly stable although she was on oxygen 24/7. Right after New Year's she felt ill and was diagnosed with pneumonia. She came home after a couple of days in hospital. That night, my sister (who is a nurse) went into mom's room but couldn't wake her.

So there was the dilemma: if the DNR had been in place, there would have been no question. But my sister didn't want to be the one responsible for deciding whether mom lived or died. She was taken to hospital and put on a ventilator.

When she came to, she told the doctors that if she couldn't come off the vent, she wanted to pull the plug. They agreed.

The trach caused a massive ulceration in her throat which caused extreme pain. Mom was no wimp - she had dental extractions without benefit of novocaine or anesthesia. She suffered horrendous pain the whole time she was on the vent.

There was no way to win on this. If my sis had let her go, she would have felt guilty and, no doubt, other siblings would have blamed her. No doubt we would always have wondered if mom could have survived this - she survived a lot worse in her day.

In the end, though, mom was faced with the decision to basically commit suicide (albeit with medical help and the full support of all of her kids). The end result was that mom spent the last month of her life in both physical and mental agony - because she was never ready to die and kept postponing the decision. We finally begged her to stop worrying about it and learn to live with the vent andor let nature take its course.

She died a week after we all left to go home (we're scattered across the country)

The only good thing that came of it was that we got to say goodbye. But at what price? I wish we could turn back the clock and stop my sister from calling 911 - mom would have died peacefully in her sleep. Instead, she endured weeks of pain and terror. But - she got to say goodbye. I'm still not absolutely sure it was worth it.


Thanks for letting me vent.
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Old 12-06-2011, 05:40 PM   #37
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......... We finally begged her to stop worrying about it and learn to live with the vent andor let nature take its course.

She died a week after we all left to go home (we're scattered across the country)..........
MY XDW worked in a local hospital and was present at a lot of natural deaths. Frequently, death occurred right after the family gathered and gave the person permission to go. I comment because I think that it is important to know that loved ones need this permission.
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Old 12-06-2011, 06:05 PM   #38
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MY XDW worked in a local hospital and was present at a lot of natural deaths. Frequently, death occurred right after the family gathered and gave the person permission to go. I comment because I think that it is important to know that loved ones need this permission.
I think it was something like that. I felt really bad because she wanted me to stay. I delayed my return by a week, but I had been away on vacation for 3 weeks in Tahiti when she was first hospitalized, and had only been back to work a couple of days when we got the call to head home.

I just didn't want to jeopardize my job (although, to be fair, my bosses were more than understanding and supportive). It was a hard decision.
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Old 12-06-2011, 07:17 PM   #39
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Nuiloa,

The situation that happened to your sounds very simliar to what my friend and her family recently had to endure. One of her biggest fears (she voiced this to me several times) was having to wake up and being on intubation.

When the hospital she was in said to her after seeing her lungs had failed was you pretty much had two choices, first to go on a vent and may never come off it, or to think of pallitave care -- in other words, dying soon. What is a person/family to do in that situation? It's like..pick your posion, a slow vs fast death.

My fear that evening (while she was on a CPAP machine) was that my friend would be not be able to communicate soon (as that was pretty much how the next month would be). So, while she could talk through the CPAP, I said to her that if we get separated and can't communicate, this is what you meant to me.... and she said the same to me.
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Old 12-06-2011, 08:03 PM   #40
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Knowing that the survivability of a cardiac arrest outside of a hospital is <2%, you should feel good that you tried, no matter what the outcome.

In January, my DH suffered a sudden cardiac arrest at a client's office. Several employees performed hands-only CPR on him for 13 minutes until EMTs arrived and used an AED on him and transported him to the hospital. I am delighted to say that he survived, and with his implantable pacemaker/defibrillator, he is back...still working (his choice)... and beyond grateful to those wonderful strangers who wouldn't give up.

When he was in the hospital, it seemed like he was visited by just about every doctor in the place. I asked his attending M.D. about it and learned that DH was the talk of the staff...
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