Please share experience with hospice

[Mrs Tiggywinkle]

12 minutes ago, TexasProud said:

Why is it so common????  I get this. I do.  And if the hospice director had been HONEST, but no, she talked about how they had a nurse that would come 2 - 3 days a week at first, but then every day and at the end she would be there 24/7.  They would have aids that could come in and help with bathing or dressing.  With hospice, you no longer have a doctor, hospice is the doctor, so the nurse was great, she helped me simplify her meds.  She agreed to checking. If she wasn't going to check, she should have told me. Then I could have made other arrangements. I thought it was taken care of.  Don't tell me that she will have 24/7 care at the end if she won't.  Believe me, I will be spreading the word far and wide.  But why are they misleading possible??  There is something wrong if this is so common. It is just wrong.

I know they were up front with my aunt a few years ago because she was able to call extended family and get round the clock help when my uncle was dying, but they knew it would only be about two weeks. here I am pretty sure the problem is most people go on hospice after a hospital stay, and the stupid hospital talks it up like people will be getting hospital level care at home which is not true, and then hospice nurses are so busy they don’t get a chance to explain.   At the height of Covid here people were waiting two weeks to get signed onto hospice and dying in the meantime. It is honestly not much better now and is all due to no staff.
 

I don’t know if your agency tries to do the 24/7 and just doesn’t have staff or what the deal would be and why they’d tell you that if they can’t do it. It varies so much from community to community and agency to agency.  We’ve never had 24/7 hospice, or even aides, at least as far back as 1996 when my grandfather was dying.  Even then the expectation was family would do all patient care and the RN would come out only to help fill medication prescriptions(it was a horrible situation because he lived so much longer than they were expectating, but continued to need round the clock personal care.  My uncle used up all his vacation time and then some and my dad almost got fired because they spent weeks and weeks caring for him at home). But I also have talked to people who moved here from other places who are shocked because they did have hospice aides and volunteers there. So I know it exists.

[TexasProud]

26 minutes ago, Mrs Tiggywinkle said:

 

I don’t know if your agency tries to do the 24/7 and just doesn’t have staff or what the deal would be and why they’d tell you that if they can’t do it. It varies so much from community to community and agency to agency.  We’ve never had 24/7 hospice, or even aides, at least as far back as 1996 when my grandfather was dying.  Even then the expectation was family would do all patient care and the RN would come out only to help fill medication prescriptions(it was a horrible situation because he lived so much longer than they were expectating, but continued to need round the clock personal care.  My uncle used up all his vacation time and then some and my dad almost got fired because they spent weeks and weeks caring for him at home). But I also have talked to people who moved here from other places who are shocked because they did have hospice aides and volunteers there. So I know it exists.

Thank you everyone.  

Edited September 8, 2022 by TexasProud

[Frances]

I’m so sorry for your loss.

[Melissa in Australia]

I am so sad to hear of your loss. Very sorry

Huge hugs

[Ausmumof3]

I’m so sorry for you loss 😞

[Laura Corin]

I'm sorry for your loss @TexasProud

Edited September 8, 2022 by Laura Corin

[Starr]

I'm so sorry for your loss and that the whole situation was so difficult.