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Lorilassick Asked April 2017

Is it time for hospice?

My Grandmother has suffered a series of falls, starting in Nov 2016. She has a broken C1 vertebra (this will never heal, she will remain in a C collar for the remainder of her life), a broken L7 vertebra in her back (same situation, back brace) and has had 2 significant brain bleeds (most recent one on March 28 2017). She was living at home after a 5 week stay in between a hospital and rehab stay discharged Dec 30 2016. But, has been progressing on a down hill slide. This most recent fall hospitalized her for 4 days (comatose) and she is now in a skilled facility to receive rehab once more. She continues to decline, will not eat, drinks very little and is refusing rehab treatments. She in her words not mine "Is tired and weary, and just wish She would have died the last time she fell". She was found after being unconscious for approx 6 to 8 hours. Believe me, no one is in her corner more then I am to fight for her. But, at this point I am more concerned with her comfort then her rehab. She has zero quality of life. She is bed or wheelchair bound and can only get up or move with assistance. She will never make it back home. She has bone cancer (2001) that has been held at bay by monthly infusions. My question is a few parts
When is it the right time to consider Hospice?
Can she go under hospice and if she does start to get better, go back into a rehab facility?
Do people "give up" once they get into hospice?
Let me state again, I do not want anything but the best for her, but at the point she is at I am most concerned with her comfort not getting her better. I would love nothing more for her to gain some will back and recover, but her attitude and her health just don't seem to be cooperating with her at this point. I don't want to give up on her, but I am also not going to stand by and watch her suffer anymore. My uncle lives in another state, and while he does not prevent me from.exploring options for her care, I truly don't believe we are on the same page as far as her condition. I see her continually sliding down the hill, he only sees her for a few days every few months so he doesn't see the day to day decline. I, in my heart, feel she is not going to pull out of this one, and want to make sure that everything is being done to keep her as happy and comfortable as we can until the end, whether it be weeks or months from now. Am I wrong to think like this? And who do I ask for more information on Hospice? Her Dr? Her social worker?

jeannegibbs Apr 2017
Ask her doctor for a hospice evaluation now.

My husband was on hospice care 5 weeks before he died.
My mother was on hospice care 3 months at which point she had improved so much she was no longer eligible. She lived another 2 years.

Your Gram is going to die on her own schedule. Hospice neither prolongs her life nor shortens it. It only makes the final days more comfortable. And if the final days are not really final, it makes the period of healing more comfortable.

If Gram is mentally competent and she decides she wants hospice care, I think that overrides anyone else's opinion.

Lorilassick Apr 2017
Thank you Shane. Yes, unfortunately this is indeed his mother. My Grandmother has made it very clear...legally and in person that she's wants absolutely nothing done to extend her life. No feeding tubes, no life support of any kind. I am at peace with that, as are the other two. It's the "grey" areas that have us split. I no longer feel that she should have a IV anymore , she does not have one now, but if she does not soon start to eat or drink she is on the brink of being hospitalized again. I see Hospice the way that you described. Something to focus on her well being mentally and emotionally. I have told her the past few days after hearing her complain about them taking her to rehab, she's to tired and weak and doesn't care. I said, Gram, don't do it then. It's your body and your life. No one can make you do anything. You only do what YOU feel comfortable doing. Just say no. I will be going down to the home this morning to see who I need to speak with about these next steps. It is indeed a very difficult position to be in, but hearing from others is really helping me wade through it.

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Shane1124 Apr 2017
I am sorry to hear this.
I myself recommend you discuss Hospice with her providers. She may be in a great deal of pain and not feel like giving rehab another shot. Either hospice or palliative care. In making your decision her quality of life should be a priority in your decision. You have said she doesn't have much right now.
Yes people can transition out of hospice if they improve. My mother was in hospice twice; the first time she rallied and improved enough to be discharged from hospice; the second time she began to have a series of strokes and I saw a huge decline and brought them back. It was a year between hospice episodes. During the first episode she received spiritual care, they sat with her and played soothing music or big band music according to her mood and she benefited enough to be discharged from hospice.
I feel for you regarding your uncle - is this his mom? Every family member seems to want to put their two cents in, while you are on the frontline fighting for her daily. You are the one who hears her say "she wishes she had died" after the last fall.
Does she have a DNR or Living Will? That makes it easier. My mother did not. Unfortunately she never wanted to discuss end of life issues with me EVER, so my brother and I worked together as she left no guidance.
She needs rest now and needs to be comfortable emotionally as well as physically. She may dread another course of rehab but is going along with it because her family wants her to.
I hope things get more clear for you in the next few days, and for your uncle too.

Lorilassick Apr 2017
Gladimhere, she does have a AD. Absolutely no exceptional efforts to keep her alive. Every hospital stay she has had a IV, which I question is even the right thing to do anymore. Her AD says no to the IV if it is extending the suffering, but we never know how she is going to come out of it anymore. I hate to tell them not to give her one and have her "starve" to death. I am not her PAP, my uncle is. All that's left is myself, my brother and him. My mother passed away at a very young age. I'm only 38 but have been responsible to taking care of grandma for the past years that she's been declining. My brother helps when he can. I have 3 teenage boys a husband and a full time job. I do not mind doing it at all, I love my grandmother dearly, but my uncle is not here often enough to understand her decline. I see her everyday and know what she is and is not capable of. He still has it in his head that she will "bounce back again". I believe different. We do openly communicate as a family and he has always given me the go ahead with whatever I feel needs done. Again, with this he showed just a slight resistance, but gave me his blessing to look into it. I want him to take on more responsibility, but it never appears he will. This last fall, she went to hospital on tues at 1230pm. He didn't show up until weds night around 9. Despite my calls to him to tell him how critical she was. He stayed until sat morning. He is retired and if financially able to drive the 5 hours and take some time for her, but never seems to want to. My great aunts try to help me , emotionally wise, but it is not their responsibility either. I shouldn't have to be put in this position. I just want her to be as comfortable as possible one way or the other. He feels that when I mentioned hospice it immediately seems like I want her to pass. Nothing could be further from the truth. I just don't know where to turn to.

gladimhere Apr 2017
Ask her doctor to have her evaluated for hospice care. It sounds like it is time to consider it. Hospice with their evaluation will either accept her or not. And, yes, people are discharged from hospice to other care when they no longer meet the hospice criteria.

Are you her POA? Or is uncle? Does she have a DNR or medical directive?

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