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Rmn216 Asked May 2022

What happens between now and the initial hospice visit still 1 week away?

My grandmother lives with my family and I. She is 88 with severe end stage copd, afib, chf and stage 3-b kidney failure. She has been on palliative since last October, but they have been no help at all. We went to see the case manager on May 6th. She suggested we start thinking about hospice, and said "It won't be long". (I don't know what that means). Made a follow up appt. for July. She is on 4 ltr oxygen 24/7, still moves about with a walker, but looks like she'll pass out at any moment. The cough has changed, the wheezing is loud and constant. Breo not helping as of 3 days ago, now nebulizer not helping. She says she's dying. I did call hospice today but they cannot come out til next Tues. She is already DNR, and has a refusal for intubation. I don't know what I'm supposed to do to help her feel more comfortable. She doesn't want to go to the hospital, but I can't just watch her die :/ Can anyone offer advice?

JoAnn29 May 2022
Just have to say. I come from a small town. We have one Hospice in our town that the last I heard had to stop taking clients because they have reached the limit they can service. There is only one backup from another town who also must have reached their limit because the Hospice serving us now is from out of state. So in my area, Hospice providers are not plentiful. Same with Hospice facilities, none in my town or surrounding area.

Rmn216 May 2022
Well, I guess it doesn't matter because yesterday she told me she doesn't want it! Says she doesn't need it yet. (2 days ago she was "dying") Says just wait til she needs to go to the ER and hopefully she'll die there :/ I've tried explaining that hospice can help keep her OUT of the hospital. She doesn't want to hear it. She's been "ready to go" for a long time. We spoke about discontinuing medications, and I told her hospice probably will do so. She asked, "wouldn't that be suicide"??? I spoke to her about the possible trajectory of her illness and explained she may end up bed-ridden and when that happens I will need her to move to a facility. (This is not news, I've been telling her all along.) She just keeps praying she'll die in her sleep (as do I) and it won't come to that. She said last night she would kill herself before going to a nursing home. So, that said, I moved the hospice appt to next Friday, and on Wednesday I have a hospice counselor coming to speak with her.
AlvaDeer May 2022
The appt with hospice should remain.She doesn't need to accept it but she does need to HEAR it. She will then be told that SOME meds will be discontinued (not the ones needed for her comfort, to help with her airway) and that hospice has the single BEST MEDICATION for breathing that there is, which is Morphine. She will be kept comfortable with this medication.
If, after interview with HOSPICE (instead of you telling her this or that) SHE (and she alone) can make her own decision.
Yes, she can keep going to ER but eventually no one will do anything but discharge her home, where apparently her meds aren't working.
Tell her hospice will keep her comfortable. They are not there to kill her. They are there recognizing that she is dying. As to what "it won't be long" means tell the person saying it you don't understand their meaning. Do they mean an hour, a day, a week, a month, a year? It is a ridiculous thing to say.
Basically a doctor needs to explain to her that medical has done what they can. That hospice can administer morphine, but that she cannot stay in hospital on morphine. It isn't acute care. It is care given for comfort and to ease the breathing.
I think you are left now with awaiting hospice. If they aren't there in time, then send grandma to ER. They can do what they will, but they MAY get hospice visit bumped up.
If your Grandmother doesn't want any hospice care she needn't accept it. But she should maintain that appointment. Otherwise it is on you to say, when she is distressed, that there is nothing else you can do but call the ambulance. And of course that you can do. No one can stop you. Eventually the doctor will speak to your grandmother about Hospice, that they ARE visiting, and that she needn't accept them, but that they have the good meds and he has done what he can.
I am so sorry. I can only imagine how distressing this is for you all. I have seen death come in all sort of ways, as a nurse. For me, that death that comes when hospice is there to help us be below the level of comprehension, is the one I would fight to get.

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MargaretMcKen May 2022
RMN, there is a huge difference between the situation you explained on your profile, and this last question. No wonder ITRR’s answer seemed a bit odd! So the first question is whether you think this current situation is genuine or not?

If it’s genuine, and she’s really close to death, it would be a good idea to find a hospice that will come quickly. They will talk you through how to make her more comfortable.

You say “I can't just watch her die”. If she won’t go to hospital and is going to die at home with you, that is more or less what will happen. Just go out of the room at the end if you feel the need.

BarbBrooklyn May 2022
We called hospice at 2 PM on a Wednesday afternoon and they were there before 3PM.

Call other providers.

Rmn216 May 2022
That’s a good idea. I’ll get on the phone 1st thing tomorrow.

Isthisrealyreal May 2022
Rmn, you should do whatever you want and let her go hungry or thirsty while you are out doing it. She is being manipulative to her own detriment. Maybe telling her that she will end up in the hospital if she gets sick from punishing herself to control you.

My mom actually threatened suicide if I didn't take her to Target with me. I didn't take her and she was still alive and b!itching when I got back.

You are now in a bigger city, interview other hospice providers. Call around until you get one that can show up sooner.

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