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I’ve been the full time caregiver for my mom a little over 2 years. She’s been in palliative care for the last 6 months. She has severe & crippling arthritis, dementia, COPD & we’re fairly certain she’s experiencing heart failure. Her palliative nurse has referred us to hospice. She said we were looking at a few weeks to a few months and it was time. This has always been the plan but now that we’re on this precipice I’m anxious and conflicted never mind exhausted and quite frankly a little scared. I was hoping someone here could give me a caregiver’s perspective on what to expect and perhaps some suggestions on what I should ask at this meeting. We have had everything in order legally for some time now. I’m medical POA and my sister is POA for property. We have a fully executed DNR in place as well. The meeting is Thursday afternoon. Any guidance would be much appreciated. Thanks.

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I’m so sorry. I know that anxious feeling all to well. my MIL was on hospice at home and that is where she passed. With home hospice, someone has to be with her all the time. Hospice won’t be there 24/7, they usually send a caregiver to help bathe and clean-how often will be determined by you. We started with once a week and then progressed to 3 times a week as MIL declined. The nurse came once a week and mostly just checked her vital signs and asked questions, made sure we were all doing ok and answered our questions. The social worker came a few times but I never saw her. I got the impression that the nurse would come as often as we or MIL needed her. Once a week was sufficient for the entire 3 month period.

What I would ask at the meeting is what their care plan is. How often will someone visit and WHO will visit. Find out if she will have the same nurse and caregiver, you might end up with someone different every week. We preferred to have the same people but MILs nurse was changed a few times because one had quit. She really liked one caregiver in particular so we requested she be the only to come and they accommodated that. If you will be sharing the decision making with anyone or if anyone will be helping to take care of your mom, have them attend the meeting so that everyone is on the same page. We did not do that, hospice met with my MIL and her boyfriend and we knew nothing other than what they told us which wasn’t much. I can’t stress how important it is for everyone to know exactly what is going on and what the plan is. It really makes the process easier. Also hospice only came during the day. I think you can probably request specific days and times though. We were able to do that. They provided everything MIL needed-a hospital bed, a bedside commode, a hospital style bedside table, cleaning supplies, pads for the bed, diapers. At this point, you and hospice will keeping her as comfortable
as possible. Again, I am so sorry.
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Reply to worriedinCali
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My Dad was in Hospice care the last two weeks of his life. They kept him comfortable, that was their primary goal. He had Mersa and pneumonia. I stayed with him that last two weeks of his life. That was the best two weeks I ever had with him. He would wake up at 2:00am and we would have tea and talk. His night nurse would come to check on him. She was surprised to see how alert he was. He was alert clear up to the end. He just fell asleep. I was so glad I was their. I didn't want a call telling me he passed.
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CoffeeCat Jan 22, 2019
Thank you! I had a similar situation to yours with my dad. We had a hospice room for him in the hospital though. I stayed there for a week and was with him when he passed. It was hard but I wouldn’t trade that time for anything. My mom is in a different situation though and it’s been just a slow decline to her current condition. I’m not sure how hospice here at home will work.
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I'm sorry to hear of your mother's decline. My situation may be different, in that my LO is in Memory Care. I'm not sure where your LO is receiving care. I was there to meet with the Hospice rep who explained the services and gave me paperwork. I also was there when the nurse came and took her vitals, ask questions about her likes, dislikes, medical history, needed equipment, medication needs, etc. They got her a new bed and deluxe wheelchair within hours. Then, I met with the Hospice social worker, who gathered info about our family, explained how they would help me, met with my LO, played some of her favorite music and made sure I had all their contact information. I meet with the social worker regularly. Other aides and nurses see my LO several times per week. I feel so much better with them being on board. Now, there are multiple sets of eyes on my LO and I think he's really helping her feel more comfortable.

One thing that I would ask about is what Medicare covers once on Hospice. Maybe, someone here can explain it, but, it's my understanding that you need to contact their nurse or doctor, before you take someone to an ER for a condition that they already have.
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CoffeeCat Jan 22, 2019
Thanks for the information. I take care of my mom at home. She’s been home bound for quite some time so all her care has been here except for when she’s been hospitalized then convalesced at a facility. She has a Medicare advantage plan that co era hospice but yes, I think it’s a good idea to check how it works with them should we need to take her to the ER for an injury or acute situation. It’s my understanding that we will be forgoing hospitalizations and keeping her comfortable here. Her palliative nurse did say we’d have the option to flip her out of the no hospitalization agreement if necessary. I am a little confused about when that would apply but I suppose we’ll cross that bridge when we come to it.

Im glad you’re happy with the level of care your LO is receiving. I’m hoping this is the right decision for us as well.
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