Topic: Hospice care for dying patients

[landofoz]

This is something that I think is very important.  The article took me about an hour of off and on reading to get through but makes some valid points.  Has some good info about how to help someone you love make end of life decisions.

Hospice care for dying patients

[bayou girl]

that is thought provoking sarah loo.  way too much for me to read at bed time, but something i will be coming back to.  thank you for sharing.

hospice care is one of those things that is difficult in the best of situations and horribly difficult in the worst.

[Triss]

I could not stop reading the article.  It really makes me think more even about my own decisions about how I want things handled and how very unspecific they really are for those who would be making those decisions if i could not.

[Tina]

I also read the whole article.
I loved hospice for John. John loved hospice for himself.
The first hospice dumped him when he opted for chemo for the mylodisplastic syndrome and radiation for the bone cancer in his back. But both were really palliative treatments to lessen his pain. And they worked. The hospice intake nurse from his first hospice quit over that.
But his second hospice continued his care even with the chemo and radiation. And that same intake nurse also worked for them.
Hospice is the way to go.
When I told people John had hospice, they said they were so sorry. But we weren't.  They made a big difference and answered the questions and made life simpler. They made dying easier. Hospice is the way to go.
But I also need to discuss things with my kids in more detail. And ask them, too.

[landofoz]

I have known what hospice is and does for years, taking tours of their local facilities and talking with folks but I didn't realize the extent they went to. 

It has really made me think about what I do / don't want.  I definitely was not comfortable to how close my age was to some of those folks...

[bestofour]

That article makes you think about all the time wasted not being happy doesn't it.  I never thought I'd be 58 years old.  I'm way on the other side of middle aged unless I plan on living to be 116.

Make sure you know your wishes and that family members do too.  The first job in a hospital I ever had was on a cardiac unit in a tiny hospital in Anson County.  My patient was a 77 year old man with a history of heart disease.  His son was the hospital lawyer.  He had signed a do not resuscitate.  He turned gray that morning and coded.  The main doctor in that hospital, there weren't many, is from Iran and was on the floor and told me to start CPR.  I refused because of the DNR.  He started it himself and someone brought in the crash cart while I stood and watched.  The man was saved and he and his family were happy.  Nothing was said to me because legally I was correct but it really made me think about my choices.  It's easy to say I don't want to be brought back but if I happen to be brought back someday will I be sad or mad about it.

[Tina]

I do want to be 'brought back' as long as I will have some quality of life left. But not if I have no hope or pain free days left to me. So it really depends where in my disease I may be.

[bestofour]

Sometimes it's hard to know that answer at that time.

[sunsoaker]

I will read this after I get home.

[Tina]

Sometimes it's hard to know that answer at that time.

Yes, I do know that as well.
I am very glad my mother left me very clear instructions. And was able to participate in her decisions, too.
John and I had lots of opportunities to discuss and we did. But there were a couple of times he made the call to go into the hospital to see what was happening and get minor adjustments that helped him survive longer and be happy about it. Those times, I may have chosen differently for him.
It is all a matter of timing.

[bestofour]

I don't want to be left in charge of this for anyone.  My ex and his sister made this decision for their dad and Johnny's sisters made the decision for their dad.  Johnny didn't agree with them.  It was hard and sometimes he'll say he should have fought them a little harder.

Johnny says he wants to be plugged in, plugged up, turned on, hooked up, attached, tubed, cathed whatever it takes to keep him alive.  He's told this to everyone he knows because he thinks I'll pull his plug.  I want to go without all the attachments and I've told this to everyone because I know Johnny will want to plug me in.

[Tina]

That is sort of funny and sad too, Sheri. You need to have it in writing or Johnny trumps it all. Him too.
I really liked the way John died. It was just right for him. I want to fight the fight until I am too weak to fight. Then I want help to the next world with as little drama as possible.
.

[bayou girl]

i read it all the way through too.  and scott and i have talked about it in depth and the basic decision we have made is that if it won't "save me" then  just keep me comfortable.  and if i get too much pain meds and die from them, as long as i'm not in pain, i'm ok with that.  there is a fine line, but a line none the less between "this will take away the pain, but might kill you" and "this will kill you but since you are in pain anyway..."

it is just one of those things that doing all to save isn't always what is best, but only God knows if the choices are the right ones.

[landofoz]

Johnny says he wants to be plugged in, plugged up, turned on, hooked up, attached, tubed, cathed whatever it takes to keep him alive.  He's told this to everyone he knows because he thinks I'll pull his plug.

Maybe this is because he also thinks you are trying to poison him?  I mean, come on, Sheri, what did you do to make him think you want him dead asap?

[bestofour]

Well, he does have a nice insurance policy and I do like to shop.

[Tina]

 

[bayou girl]

Well, he does have a nice insurance policy and I do like to shop.

[Jessica]

[bestofour]

seriously, we're at opposite ends of this.  He's afraid to die and thinks that being hooked up is living.  If I thought I was going to die this minute I would probably be so scared I'd wet my pants but I don't  want to live not  knowing that I'm alive.  I started to say being bedridden, not being able to breath on my own but then I thought about Christopher Reeves and he was in that condition but enjoyed what life he had.

[bayou girl]

it is a difference sheri.  you can be bedridden and have a great life, or be mobile and have no life.  i see where you are at on it.  and johnny too.  i went through a stage when i wasn't sure living was worth the effort.  having to have help to do all but wipe my backside made me really think.  and i decided the pain and ability to have pleasant times were the deciding factors.  if pain is controllable enough that i can enjoy even  5 minutes of a day, it is worth it.  but if i ever reach the point that i can't, give me the pain meds, even if it kills me.

[Tina]

What it boils down to is talking. Communication is the key. Husbands and wives. Parents and children.
And that is what the hospice nurses and doctors offer that most others don't. Straight talk. The hospice nurses, you would think would be burned out quickly. But they don't. It is a very rewarding job in a lot of ways. They truly get to ease lives in a way few do. They can be sad in a death and be happy with their part in it in the end. It is a wonderful job that they do.

[Jessica]

I'm sure I will change my mind someday but right now I always say....if I have brain activity keep me alive.  If not, let me go.  I don't want to be a vegetable.