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Thu Feb 11, 2016, 08:53 PM

Officially signed up for hospice today

Have conflicting feelings. It's nice to put some arrangements in place, but it also seems to be admitting I'm entering a new phase. I'm not entirely comfortable with it.

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Arrow 33 replies Author Time Post
Reply Officially signed up for hospice today (Original post)
Tab Feb 2016 OP
uppityperson Feb 2016 #1
PoliticAverse Feb 2016 #2
CaliforniaPeggy Feb 2016 #3
Hoyt Feb 2016 #4
Downwinder Feb 2016 #5
Tab Feb 2016 #6
Downwinder Feb 2016 #7
Tab Feb 2016 #9
Downwinder Feb 2016 #10
Tab Feb 2016 #11
Downwinder Feb 2016 #13
wordpix Feb 2016 #15
Downwinder Feb 2016 #16
Solly Mack Feb 2016 #8
Tab Feb 2016 #12
wordpix Feb 2016 #14
dmr Feb 2016 #17
Tab Feb 2016 #19
wordpix Feb 2016 #23
Tab Feb 2016 #24
cate94 Feb 2016 #18
Tab Feb 2016 #20
cate94 Feb 2016 #21
slipslidingaway Feb 2016 #22
alfredo Feb 2016 #25
DarthDem Feb 2016 #26
nolabels Feb 2016 #27
Tab Feb 2016 #28
nolabels Feb 2016 #29
wordpix Feb 2016 #30
alfredo Mar 2016 #31
Tab Mar 2016 #32
moonscape Apr 2016 #33

Response to Tab (Original post)

Thu Feb 11, 2016, 08:55 PM

1. <3. (It's a heart)

Last edited Thu Feb 11, 2016, 09:36 PM - Edit history (1)

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Response to Tab (Original post)

Thu Feb 11, 2016, 08:58 PM

2. Best wishes to you! n/t

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Response to Tab (Original post)

Thu Feb 11, 2016, 08:58 PM

3. This is always a difficult step, my dear Tab...

But you're wise to take care of it.

They will help.

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Response to Tab (Original post)

Thu Feb 11, 2016, 09:00 PM

4. Glad you posted. Wish you weren't faced with that decision. I know it's a tough.

Will be thinking about you.

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Response to Tab (Original post)

Thu Feb 11, 2016, 10:02 PM

5. They were very good with my mother. Wish I qualified,

but all of mine is chronic.

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Response to Downwinder (Reply #5)

Thu Feb 11, 2016, 10:04 PM

6. Would not chronic qualify you?

I don't know your diagnosis, but hospice is for chronic and terminal, so I hope you would qualify.

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Response to Tab (Reply #6)

Thu Feb 11, 2016, 10:10 PM

7. I have been told NO.

MS, Kidney disease, and back. Mostly age.

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Response to Downwinder (Reply #7)

Fri Feb 12, 2016, 03:28 AM

9. Hmmm....

Sorry to hear that. It would, of course, need to be a terminal diagnosis. Maybe it varies by state. I got into mine through my hospital, but I don't know if that's state-specific or at a federal level.

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Response to Tab (Reply #9)

Fri Feb 12, 2016, 03:49 AM

10. Enough of this cheerful talk.

Congratulations on getting into hospice. Residential or home hospice?

Either should reduce the stress level and make things easier.

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Response to Downwinder (Reply #10)

Fri Feb 12, 2016, 03:59 AM

11. It's home

Not so much that I need it desperately now, but I am definitely degrading, so we're trying to put various things in place rather than hassle with them later when there might not be any time to do so.

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Response to Tab (Reply #11)

Fri Feb 12, 2016, 04:24 AM

13. That will give your caregiver some respite, time for shopping etc.

It is also much easier to get any equipment necessary through them than to do it yourself.

Medicare would only allow a walker or a wheelchair for my mother. Hospice got both.

Having a nurse on call is invaluable for the effects or reactions to medications.

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Response to Downwinder (Reply #7)

Sat Feb 13, 2016, 04:25 PM

15. age is terminal, too (attempt at levity)

Good luck to you, too, Downwinder, from a St. 4 survivor 2 yrs.

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Response to wordpix (Reply #15)

Sat Feb 13, 2016, 04:54 PM

16. Congratulations. My niece is over 10 yrs. now.

:Actually I can't quit until I get something covered under the Downwinders Act. That is the only way I will be able to leave tuition money for my granddaughter.

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Response to Tab (Original post)

Fri Feb 12, 2016, 01:29 AM

8. (((Tab)))

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Response to Solly Mack (Reply #8)

Fri Feb 12, 2016, 04:00 AM

12. Thanks, Solly

Same to you

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Response to Tab (Original post)

Sat Feb 13, 2016, 04:23 PM

14. so sorry, Tab and thinking of you

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Response to Tab (Original post)

Sat Feb 13, 2016, 11:25 PM

17. I understand the conflicting feelings.

None of this is easy.

I'm in my 4th year of stage IV breast cancer. I got unnerving news a few months ago that my treatment had stopped working, and now it's in so many bones ....

I'm on twice daily oral chemo now, and I'm hoping it works cuz I sure am not enjoying the side effects.

Around Christmas, my pulmonologist rattled my hope by asking if I had my affairs in order. That truly crushed me.

Oh, I didn't mean to dump in your thread.

Hospice is wonderful. They were there for my mother. Warm, gentle, helpful, effective, caring, and available at any hour.

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Response to dmr (Reply #17)

Tue Feb 16, 2016, 12:23 AM

19. You're not dumping in my thread.

For goodness sakes. These are conversations, not just lectures or statements.

I'm also in my 4th or 5th year of stage IV. I did try oral chemo at the end, but stopped my particular kind (Stivarga, which was new to the market and FDA-fast tracked. I got almost every single side effect listed, and was sleeping up to 20 hours a day. It was ridiculous so I stopped. I don't know if your condition is fast moving or slow moving, but this is one of those things you need to keep in mind, as I'm sure you know. Personally I was told I was basically over the "good drugs" (meaning ones with minimal or tolerable side effects) and it was mainly just nastier stuff ahead of me. I eventually just stopped treatment.

Yah, I think my doctor asking if my affairs are in order (whether they were or not) would kind of catch my attention. "Umm, Doc, can I ask why you thought you needed to bring that issue up?". Asking if you've set up a living will or DNR is valid to what they do, but asking if your affairs are in order? Either you're in bad shape or you need a new doctor.

I'm only a few days into this hospice thing (just got oxygen tanks today ) but the hospice team seems to be far more helpful than I expected. I was reluctant at first but now am starting to find it's a really nice resource and lifts the burden for most people involved (not just the patients). Still in the getting used to it phase.

I guess the direction we are going in can't easily be changed (just talking medically) but how conduct ourselves on what is a terminal hike is what defines us as a person.

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Response to Tab (Reply #19)

Wed Feb 17, 2016, 03:55 AM

23. have you tried any of the super dose med marijuana?

I'm a legal mmj patient and since the dispensaries opened in my state, the providers (!) are coming up with higher concentrations of THC. I can only handle about 15-20 mg. per dose, tops, but some of the capsules and other products are 200 mg./hit. Have you tried any? I'm pretty sure that amount would either make me sick or out of my mind so just wondering if you've tried.

Hoping for the best for you.

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Response to wordpix (Reply #23)

Wed Feb 17, 2016, 12:56 PM

24. Unofficially

but the stuff certainly helps with my appetite but leaves me stoned for a long time, and I can't do it every day, maybe once a week at best.

We do have licenses, but no dispensaries (!) so it's slow going in that department.

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Response to Tab (Original post)

Mon Feb 15, 2016, 11:59 PM

18. Hospice is really helpful in so many ways

But I do wish that you didn't need them.

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Response to cate94 (Reply #18)

Tue Feb 16, 2016, 12:32 AM

20. I wish we didn''t need child cancer centers either.

But sadly, we do.

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Response to Tab (Reply #20)

Tue Feb 16, 2016, 08:29 AM

21. Too true.

And btw, I love how you think.

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Response to Tab (Original post)

Wed Feb 17, 2016, 12:16 AM

22. Sorry to hear this Tab, but I know from your posts that it has not been ...

an easy road and people can certainly understand the mixed feelings.



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Response to Tab (Original post)

Thu Feb 18, 2016, 01:42 PM

25. It sucks to be in your place, but it is good you are making the decisions.

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Response to Tab (Original post)

Thu Feb 18, 2016, 02:54 PM

26. All my best wishes and hopes for you

I'm glad there are people there to help you. Thanks for posting and stay strong.

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Response to Tab (Original post)

Mon Feb 29, 2016, 06:13 AM

27. I'm ambivalent with the question of even thinking about it.

Our late room mate recently went through with a hospice. He has passed about three weeks ago. I didn't know him as much as my other room mate but still find myself thinking about it and being reminded of it. About a year ago, he was at first, only ill with acid re-flux, per family practitioners diagnosis. The family practitioner sent him to some kind of stomach doctor (don't know proper name of it) and then a few other specialist along the way and what seemed to be eight to ten months later he got much worse. They then did a CAT scan on him and found out that he terminal cancer of the liver, stomach and lungs, along with enlargement of the heart and the heart starting to fail.

I think it was an oncologist that said he was too far along for any treatment and gave orders for hospice treatment. Anyway the oncologist told Roger he had only a few months left and he should get his things in order. The oncologist also had private conversation with Louie, Rogers much closer friend, and told him that Roger probably only had weeks to live. Well it was about only three weeks and Roger then did pass.

Anyway Rogers hospice, those people who maybe were supposed to help, were really not that much of help at the end. Really all they seemed to have done is supply some drugs (morphine and other nerve calming medications) and tell Louie to give them to him when the time got near. After few days of what seemed normal, Roger had a turn for the worse. He woke up coughing up blood one day, and Louie called the hospice. They sent a nurse, she messed around a little bit and then told Louie to start giving him the morphine and some other small sized nerve pill. Roger was hard breathing and not looking like he was doing too well.


Then the next day I got a little more anxious and thought to call my sister again on what was happening. She is a retired convalescent nurse, and figured she might know what was happening and what to do. The first time i called her a day earlier about the blood she warned me that he might go into some kind of death rattle with his breathing. She seemed to kind of know a lot about it to some degree (probably because have being there before) and also told us that those who worked for the hospice were probably somewhat desensitized to such things.

Roger fought to the end, never believed he was going be gone, and left thing accordingly. Louie or i didn't have a problem with him doing it this way and did what we could to help.

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Response to nolabels (Reply #27)

Mon Feb 29, 2016, 07:59 AM

28. First, I'm sorry for your loss.

It sounds like a terrible situation.

It also sounds like your friend was pretty far down the line by the time they figured it out (some cancers are slow, some are extremely aggressive - that's just the way it is, sometimes).

As far as hospice itself, I first suspect it varies state by state. So my hospice in my state (NH) is likely different (good or bad) from your hospice in your state.

That said, hospice is not "curative", it's "palliative". It's expected you will die within the next 6 to 12 months. They don't really try to fix things, just make everything more comfortable. So yeah, it's visitation, and also a nice little packet of at-the-end drugs.

FYI, upon joining, I've had visits from nurses (we decided on two days a week), a social worker (once a week for a few weeks to start), a PT to make sure I was safe (I am) and a volunteer "friend" who is actually pretty smart, so I don't mind seeing again. Also, we've had deliveries of oxygenators, oxygen tanks, shower chairs (not needed yet), a cane (probably, sometimes), even an offer of a hospital bed (we're not that far yet, thank goodness) and also offers for more extensive care if I simply can't take care of my basic needs myself.

- Tab

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Response to Tab (Reply #28)

Mon Feb 29, 2016, 09:16 AM

29. I was trying to help convey from what i saw from my experience with the hospice

It seems to me you have a good grasp on the situation, it sounds (i hope )

Roger was 78 and had a bout with throat cancer fourteen years ago we had found out. He never had told to either of us about it but somehow Louie found out through his medical history. Yet this whole time after the first time with cancer Roger smoked and seemed to get drunk a lot with the other two. Roger, Louie and Linda, (Louie's part time girl friend) ran around and did everything together for the last six years it seems Roger was laughing and carrying on with Louie just a couple of days before the end. So i guess it wasn't terrible the whole time even at the end.

Only thing i can figure out, is when it's time to go, it's time to go. My Pops, twenty years late, at 67, just kicked over doing what he liked to do, working, outside, mowing someones lawn, without too much warning. He had a small heart attack a couple years earlier and was told by the doctors to take it easy a little bit. He did some but then also kind went back to what he liked, going outside and working around the yard and other peoples yards. Really it seams we don't really get too much of a choice sometimes.

Lastly my older brother took almost two years before he finally past. At 36 and about 30 years ago was in an auto accident, went through the windshield and basically was brain dead there anyway. Yet it took that long in a county hospital before the rest of his body gave out.

I don't really know what to say to you about any of what you are going through and even struggling to convey the next thought in closing.

I would say Peace be with you, but that isn't something i have say, because sometimes others want to hear the truth (at least it seems that way to me). It seems one could be more comfortable with some truth, rather than a pander.

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Response to Tab (Reply #28)

Mon Feb 29, 2016, 12:53 PM

30. sounds like you're doing OK, glad to hear it

My mom was on hospice for about 6 months, they were good to her.

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Response to Tab (Original post)

Wed Mar 2, 2016, 06:32 PM

31. Damn, I didn't know your condition was that advanced.

I remember hearing or reading that we can only teach two lessons: how to live, and how to die.

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Response to alfredo (Reply #31)

Wed Mar 2, 2016, 06:51 PM

32. The problem is we're barely learning how to die

I think older civilizations understood it better. Americans don't seem to know how.

I'm reminded of a New Yorker cartoon of a woman giving birth, and instead of the placenta, someone says "wait, here come's the owner's manual!"

But there's few manuals on dying.

I'm not intending to whine, but I do want to open up conversations about this stage of life which few of us understand.

- Tab

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Response to Tab (Reply #32)

Mon Apr 4, 2016, 10:17 PM

33. My parents were European,

and as my father's friends began dying, he always commented that Americans are particularly unable to discuss the reality that death is occurring.

He would visit friends who were dying and open the conversation, one he claimed they seemed very glad to have. It must be surreal, to be dying, and unable to discuss the most profound passage of our lives with those closest to us. We need to make each other comfortable: the dying and their loved ones equally.

My cancer is a relatively recent event. Although it's not a curable one, I expect to have some years with various chemo agents. Still, things do take on a different hue - not all bad by any means - and it's an important conversation to have.

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