Should a long-distance caregiver coordinate Hospice communications with multiple caregiving entities?
I seem to have been defaulted into a go-between position, passing communication from caregivers to their agencies to Hospice and back. I am Dad’s medical POA and DPOA, VA Custodian, etc.
For example, it took two weeks to get Hospice to state in writing that Dad’s head-of-bed should be raised 30 degrees at night. I had to find a graphic for the caregivers so they could understand what 30 degrees was. This struck me as very peculiar because I live over 150 miles away, and really can’t sign on for family boots-on-the-ground training duties. Today Hospice emailed me an attachment with one of the caregiving agency's letterhead, stating that “Daughter instructs there be a 30 degree bed angle,” and “Daughter instructs that his water should be thickened.” This seemed very wrong because “Daughter” has no training whatsoever in managing Dad’s issues.
Today I learned that there is a new active medication called Levsin in the refrigerator, but nobody besides our primary caregiver knows when, how and why to give it. The night agency manager said their staff was not authorized to give undispensed Levsin. I immediately asked Hospice why they couldn’t stop by and briefly explain proper procedure to the night caregiver, or perhaps make it “dispensed” so they could use it if required. Or for Hospice to dispense it themselves? No answer. Now it’s Friday night.
Have you had to be the authority? Is this normal for a Hospice to put the burden of instruction and communications on a distance caregiver? Shouldn’t Hospice be taking charge?
I also just read the Hospice emergency evacuation plan for the first time. It states that in the event of a natural disaster, they do not have to evacuate Dad until 48 hours after the disaster. I am awaiting their reply to my question – Does Hospice notify local disaster agencies that their patient is a bedridden, oxygen-needing 98-year-old who needs to be evacuated? It Is likely the caregivers would not be able to report to Dad’s house during a disaster. Or again, is that the distance caregiver’s responsibility? No answer yet.
Dad’s long-time home-visiting PCP is the director of this Hospice. He’s been a wonderful, communicative, compassionate doctor and their portal was great. But once Dad entered Hospice, the portal was no longer well maintained and I was instructed that the first line of communication should be the Hospice RN or Social Worker, neither of whom can keep up with their caseloads. Should I consider changing Hospice at this late stage? Dad’s MRI (Mortality Risk Index) is 80.
I can’t tell you the guilt I feel not being able to help my Dad more. But my own husband just had another stroke and … it’s impossible.
Maybe you're right and I should call the PCP. I am afraid of getting someone unnecessary into a difficulty .... or losing my top. That never works for me.
Is there no way you can take family leave?
Oh yes, Hospice and his primary care doctor assure me that his care at home is much better than it would be anywhere else. So I do have that to assuage guilt. I just sometimes feel I'm the linchpin that's close to breaking. I"ll set my timer for 15 minutes then move on from that.
I am sure they don't want to overstep or leave you out and that is creating a mess.
Talk to management and explain that time is being wasted because to many people are handling the communications, this also creates lots of room for errors.
I am sorry that you have your dad and husband in such bad shape together. Remember to breathe and take time for you. Hugs!