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.
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.
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.
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.