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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.



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You need to find a hospice that does that...seriously. I find all too often that people accept a hospice due to the doc said so etc... You have choices. It sounds like a ngihtmare. The hospice RN is the team leader and should be doing all that. IMO this is total chaos which is not what your father needs at this time...oh I hate when I hear these typs of situations going on. If the hospice is too busy; get I would file a complaint with as many agencies as possible and get another hospice...yes; you can change mid way. File a complaint and find someone else...call his PCP and tell him what's been going one...it's a disgrace and you need to lighten up a bit...way to anal (it's the guilt of not being there so you overcompensate with that). Situation unacceptable with overloaded hospice and stop being nice to those people who are robbing your father of a dignified passing with tact of course....good luck.
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50sChild May 13, 2019
Shar, thank you. I agree 100% I'm too anal, and yes, distance guilt goes way back in my family (1st generation suffering from relocation trauma, so it was unfathomable that offspring would flee when they could). The Hospice staff actually do treat my father, himself, with a great deal of dignity. The CNA who baths him and treats his bedsore is the best I've ever seen. I am probably way too brittle about how they "treat" me but then I'm not their assignment, am I? CMS requires hospice to provide a social worker for family support. But either "support" is not delineated in statute or reg, or perhaps each hospice has leave to their own internal procedures that dictate what "support" means. For all I know internal procedures may be a trade secret?
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.
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Boy, you do have a lot on your plate. All I can say is Good Luck.
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First, a CNA cannot give medications. So that is part of the agencies problem. I am thinking that homecare Hospice is not a good thing for you. Can Dad afford a LTC facility. Hospice can be continued there. Hospice is not there all the time when done in the home. The RN only a few days a week. It really is left up to family members to fill in the gaps. I would agree that the Hospice RN needs to leave instructions and make sure the agency gets a copy.

Is there no way you can take family leave?
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50sChild May 12, 2019
Thank you for answering JoAnn. No, we can't afford private pay LTC. Also Hospice states that because Dad does not require skilled nursing over night, he is not a candidate for Medicaid. Also, Dad still wants to die at his home. I have begun to dip into a HELOC (Home Equity Line of Credit) to get him through, but I know I can't keep him there that much longer. I agree, though, that homecare adds so many layers of coordination that it's quite a stressor. And I'm not even hands on. I am retired, but my 87-year-old husband just had a stroke and is not mobile. We have a lot on our plates here too. Looking forward, I suspect that something will happen with Dad medically that will qualify him for VA in-hospital hospice care. VA doesn't provide Hospice services but they do have palliative services, and Dad would qualify if he medically meets their criteria. So I suspect I'll just wait.
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.
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It's really helpful to read your response, Isthisrealyreal. I find myself getting confused and unable to think straight. Your suggestions are quite helpful, but I couldn't see that mutually working through logistics are a huge part of the problem. I think I should be able to work through this. Thank you for your very reasonable thinking!
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You would have to find out how to get them talking to each other, this could be a simple HIPPA form or a letter of request.

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!
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