Jenn, I’m so sorry to hear this. What a difficult time.
In the later part of my career I was a Hospice and Palliative Care physician. I did inpatient care and inpatient hospice, not Home Hospice, but transitioned many patients from acute care to outpatient or inpatient hospice with various agencies. Some were better than others, but also as mentioned above, sometimes a family would realize a team was not a good “ fit”, for whatever reason, so should feel free to make a change. But also, don’t be afraid to ask questions, so if it’s just an information gap, or something simple, can work through it. Sometimes if you have a family member who’s good at that, they can be there when hospice nurse visits & take the lead, be another “ listener “ and sometimes more assertive, as you may feel overwhelmed at times. You will be giving any medications, so don’t be shy about getting enough education on that. There is also pastoral support, usually pretty good at meeting people “wherever they are “ spiritually.
Home hospice does not “ stay” in the home, but makes visits , and not even every day , depending on the patient’s situation. There are nurse visits and usually personal care visits. They are able to make extra visits, but again you could have to request some of those or perhaps make more phone calls-you and family are still Kevin’s best advocates.
As you probably learned, DH is usually eligible for short period of “ respite care” in whatever inpatient facility the agency uses— families will use that for , respite, of course, but sometimes related to a family event ( wedding, reunion, a trip). There are agency limits and conditions and availability.
Some hospices have a big volunteer component that will help do things like groceries, dog-walking, yard work , maybe things you haven’t thought might help, so ask about that.
I’m glad to hear you may have family/ friends drawing near to help. It’s easy to say, but it’s important for you to get out, do some of your activities, care for your health. Plus visit and provide laughter over family experiences bSo let them help. Some will just know what to do, but other times, we don’t know where to start on our own, but desperately want someone to tell us what we could do to help, even the smallest thing.
I am wishing and praying for a good transition to home care.
