My 93 year uncle died a painful death two plus years ago

[malaise]

as a result of breathing problems linked to Parkinson's disease.
There is no recovering from breathing problems associated with this disease just a long, slow painful end.

Please ignore M$Greedia re their myths about GHWBush. They will make him as comfortable as they can but any crap about recovery is just that -crap.

[Erich Bloodaxe BSN]

1. Ugh.

My Dad has Parkinson's. Not something I like to think about.

[malaise]

4. For real

watching the beloved Muhammad Ali approaching the worst part of this disease is just a reminder for us.

[panader0]

2. I'm sorry that your uncle had pain.

But 93 is one hell of a run!

[malaise]

3. And he had an absolutely fabulous life

he traveled the world, loved his family and friends, and lived life to the full.
Still it was not a nice end.

[840high]

5. Why wasn't he in hospice care

at the end?

[Erich Bloodaxe BSN]

6. A LOT of people misjudge exactly when to start hospice.

I did a hospice rotation as part of my BSN, and most of the people I helped care for fell into two categories - either folks who had been recertified for several periods of six months, or people who died within a week or two of being entered into hospice care. It was less usual for someone to be in hospice for 2-6 months. Guessing when somebody is going to die is a tough thing to do, and most folks are simply more hopeful that their loved ones are going to live far longer than they do, and only look for hospice when things have seriously deteriorated.

[csziggy]

16. Also people don't realize that hospice care can be for a long time

My uncle had a stroke and gradually became less and less able to function, probably due to dementia or Alzheimers. When he got so bad that my aunt and cousin (who lived in the other part of the multi unit house) could not care for him, they arranged for hospice at home. It lasted over two years - far longer than anyone thought he would last and than my aunt expected hospice care to continue.

When my Dad was in hospice, my aunt told us not to worry about how long he lasted, that hospice would take care of him however long it was needed.

The other part is the cost - though when Dad was transferred from hospital palliative care to hospice, the hospice people told us that while under hospice care Medicare covers everything but while under the hospital care, there is a 20% co-pay. Dad was in the same unit, with the same doctors and nurses, but changing from hospital to hospice saved Mom a lot of money.

[malaise]

8. He wanted to die at home n/t

[840high]

23. Thank you for

replying. My Dad did, too. The time came when we couldn't manage his needs without hospice.

[hollysmom]

7. my father died a while ago, he was just entering the paralyzed state

spent most of the days in front of the TV in a wheel chair, could hardly talk, yet somehow he teleported to his dresser (I say this facetiously he could move very slowly) and took all the medicine he could find and asked us not to take him to the hospital, let him die. And so we did. His last stint in the hospital was a night mare, they tied him in his bed so he could not turn at all because he could very slowly get out of bed and they did not want to be responsible if he fell. They wold not loosen them even when he had visitors, but I always took it off anyway, and would help him walk a little bit, leaning on me. He just found very little to live for at that point.

[malaise]

9. Good children let their parents

die in peace rather than live for no good reason

[hollysmom]

10. good of you to say, still have guilt

I let my mother die as well. she had multiple strokes and would have lived as a vegetable, . I told them to pull the plug.
Makes it easier for other family members, but not so easy for me, being the only decider here.

[malaise]

11. Our mom had a living will

and we honored it. Your mom died when nature superseded machines. You have no reason to feel guilt.

[hollysmom]

15. My mom had one too but

The hospital ignored it more than once.

[mnhtnbb]

12. My 91 yo father was confined to a wheel chair,

could hardly feed himself, couldn't change channels on TV, could no longer read a newspaper,
and was living in a nursing home. He had dementia. This was 2002. On Friday when I was helping him eat his lunch, I told him my husband and I were going to Chicago for the weekend. On Saturday morning in Chicago I got a phone call from the nursing home saying that
my dad was refusing to eat and they wanted to put in a feeding tube. I told them, "no".
My dad had an advanced care directive. I figured it was his way of deciding he'd had enough.
He lapsed into a coma and when I returned on Sunday evening I went to see him. I went
to see him--and read to him on Monday--and told him it was ok to let go. I had kids
at home, went home to fix them dinner, planning to go back to see him after I picked up
my husband at the airport (he'd stayed in Chicago for meetings). At 8 PM I got a phone call
and by the time I got to the nursing home 20 minutes later he'd died. He had regained consciousness--briefly--
before he passed.

I've berated myself ever since for not going back there immediately after dinner. I do not
regret letting him make the decision not to eat, but I do regret not being there when he died.

[panader0]

14. My dad had dementia too.

He was in a facility in my town toward the end. I had just become a single dad with four kids, three of them three or less.
I had taken care of him for about two years, driving, shopping etc. I visited him regularly. One day, I got a call that he was suffering pulmonary distress. I didn't hurry like I should have. A half an hour later, when I got there, he was dead. I kick myself too. I sat on the edge of his bed, stroking his hair and weeping softly. I still feel guilt.

[malaise]

20. Why do you feel guilt?

You took care of him when it mattered.

[panader0]

21. If I had left immediately, I might have seen him still alive.

My mom had lung cancer. Chemotherapy gave her a remission. During that time I went out of state to a friend's wedding. (At her insistence) When I returned home, a few days later, she was bad. I said "We're going to the hospital." She said "No, I want to die in my own bed." I insisted, even prying her hands from the bedpost. The next morning she was gone. Guilt there too.

[malaise]

22. Think about what you did for them that was right and get over the guilt

I have absolutely no guilt re my parents deaths. I knew dad was declining and I booked my ticket to head home on the 24th March that year and he died on the 21st. I reached in time for his funeral and I delivered the remembrance from the siblings.
When mom told me she wasn't feeling well that Mothers' Day 21 years ago this year, I took the money I had saved for my new car and headed to Denmark and spent three weeks with mom, big sis and her family. When I hugged her at the airport, I just knew - but I held in the tears until the flight took off and I wept like a little girl.
I spoke with her often and she told me that she'd never forget that I dropped everything and visited her. That delighted her. When she fell and then died in New York the next year, I listened to siblings saying what they wish they had done. I had no such problem. She moved up and down to visit all of us and she was never alone.

[840high]

25. Let the guilt go . .. hugs

[renate]

18. I'm sure you've heard this, but just in case...

Ask any hospice nurse--they'll tell you that very often their patients will deliberately choose to die when loved ones aren't around. (For example, somebody will be at the bedside for 24 hours, leave for two minutes to go to the bathroom, and when they come back the person has died.)

I believe it's very possible that your father chose to die while you were gone. to spare you the pain of seeing it. I think it's actually quite common among people who have sort of a caretaking personality. And if that were his reasoning, he wouldn't want you to feel regret about not being there. I'm not breezily saying you shouldn't feel regret, because that's only human, but it may very well have been his choice for things to happen the way they did.

[mnhtnbb]

19. I've long believed it wasn't a coincidence when he chose to stop eating.

[840high]

24. Yes. We knew Dad's time

was near. I slept on the floor by his bed. I left to have a cig break - when I returned he was dead.

[PasadenaTrudy]

13. They need us

to make these decisions. I had to do the same with my mom. I know it was the right thing to do.

[hollysmom]

17. yes

we don't want them to suffer. I wish I had been better attentive with the doctor, I could have extended my mother
s life if I had understood what she was saying. she had aphasia from the strokes, so was not easy to understand. I could have tried harder rather than thinking about all I had to do at home.

And with my father, I could have stayed with my mother while we waited for him to die. Instead I went home with my ex. MY ex always thought I spent too much time with my parents, but my sister lived hundreds of miles away and my brothers are idiots so someone had to help them. although I admit I was tired of driving round trip for an hour to fix their TV when they lost the channels - at least twice a week. This is not anti male, jsut anti the boys in my family

OH, and I gave my mother in law permission to die when she was in my arms and trying so hard to breaths. She was very religious and even though I am an atheist, I told her she was a good mother and she would meet her children again in heaven. She was in pain and would never get better. She stopped fighting it and just died.