I guess my question is really about hospice, don't know if this is the right place to ask, but here goes...
My Grandmother had a heart attack last week, she is 92 years old. Her Doctor said she has a blockage, and there is nothing they can do. Her ejection fraction is about 20%, she has diabetes, and is in general poor health. Her Doctor said she could no longer live alone, and my parents decided to take her in. The Doctor advised hospice. Hospice workers came to my parents house, and told my parents that they should not call 911 if my Grandmother has another heart attack, that they should help my Grandmother die comfortably at home. My parents do not want to do this, they are not comfortable with that. When they voiced their concerns, they were overridden by the hospice worker.
Is this the way hospice works? Both my parents and my Grandmother are in agreement, if my Grandmother gets sick, she wants to go to the hospital. Although my Grandmother is very sick, she wants to fight for her life, and I suspect she will until her last breath.
My parents feel like they are being forced to by the hospice workers to abide by their philosophy. All my parents want to do is care for my Grandmother until it is physically impossible not to. We are just wondering if this is the way all hospice works.
No, that is NOT how hospice usually works. My Dad was on home hospice care - twice. Once when the doctors determined he was in end stage heart failure; the second time when he had cancer throughout his body. The first time the hospice workers would come by the house a couple times a week to monitor his general health and adjust his meds as needed and answer any questions/give support to him and my Mom. But he managed to stabilize enough that he lived beyond the 6 months that are allowed for hospice care. The second time, same routine but it only lasted a few weeks and he was gone.
His hospice people were honest with him about what was happening in his body. But the decisions concerning end of life care were his. Now it's true - you cannot be under active doctor's care and be on hospice at the same time. Hospice is for end-of-life care, not for surgical procedures and so forth. That's the first decision that has to be made.
As far as the last days, there is a form to be filled out before she's completely debilitated where she can choose whether to have IV's or feeding tubes. My Dad chose to let things go their natural course but then again, there was absolutely nothing they could do for his cancer. During his heart time, he did take his heart meds. That was all.
If the family wants to keep Grandma at home, that's fine. They can look into home nursing care. Not sure how much that costs but it's different than hospice. I'm sorry your hospice experience was negative. Out of all the hospice workers we met, they were all pretty compassionate and sensitive to everyone in the family. That is their job after all. But your family will have to decide whether they're willing to forgo active medical care for her before she's allowed to be in hospice. Check with the doctor (I don't think I'd ask hospice in your case) what the limitations are. I know surgical procedures and 9-1-1 are not permitted. If she stopped breathing while on hospice, you are not to call 9-1-1 but call hospice people first. That's the rule.
I hope this helps. We've just been through this recently and I know how hard it is.
Hi! I just read your note and it really opened my eyes to something I never thought about because other's made it for us, I suppose and we agreed, thinking this was what we "should" do.
My daughter age 18 now, is on Hospice. She has been on Hospice since around age 10-12 yrs old, hard to remember. She was given 4-5 yrs. to live at age 3yrs. told she had a terminal illness. So, she had her in's and out's of hospital's, there seemed to always' be a reason to "go." now, this was even when she was on hospice, I was and have witnessed this. I think once on hospice, and things get hard to cope at home, say an pneumoina, I called 911, and the ambulance comes, we have a DNR, but her comfort and My comfort was to take her, I belive YOU can CHANGE your mind at any moment, even about the DNR, we can stop these actions if we decide we can't live with the choice we made until we come face to face w/ the action that will/might occur.
I'm very upset because my child from age 5 to 18 yrs. has had me worried she would/could/will die at any moment, we were given the Heart Attack at any time, she is so sick speech, which was true. But it never happened.
Anyway, now she is so ill, coughing up phlegm and so blue, and the hospice she has been on for the last 2 yrs. is thinking of taking her off of it. I would've not worried long ago because she looked OK. Now, she doesn't, is on 10 L. O2, can't get out of bed, can't talk due to shortness of breath, and they want to take her off:? I am happy to see a nurse come in the door see her. I need the support. I can't imagine this happening now.
What makes me so upset is, since this was at first so new to us as parents. we should've held back on hospice, but it was told to have it. So we have moved 2 times, different states, and entered hospice each time. My child this time is very end of her life, I can see/feel it and I know she can too. I'm afraid they will not be there for us, because she has lived past the 6 month period after she started, over 2 yrs. But, no one can determine when someone will pass. She has a determined soul, and she is luving and luv's to be alive. It is so sad. I just don't know what to do abou this,and I will tell you that now I live in a small town, it is worrying me. The H team seems so slack/understaffed/underqualified, it is so scary. I am just writing what I'm thinking now, how could this have happened? I know, the medical people that new-- should've told the people that didn't know,like me all about the "what this" and "what if that", I am so worried. God be with us. and GOD Bless to all of you. thx for letting me vent....
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