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Dad is 66, survived stage 4 colon cancer including liver resection but unfortunately had a stroke in September due to chemotherapy and afib. He now has moderate to severe vascular dementia, anxiety, and neuropathy from a shingles bout in April that will periodically and rapidly take his pain to a whole
new level. His oncologist referred us to hospice in mid-October, which we started the following week and coinciding with a sudden increase of pain symptoms that he can’t detail because he’s mostly non-verbal.


On the other hand, the stroke has created care needs that are beyond my
and my sister’s ability to assist. He was living independently before the stroke. He is currently in the nursing home that accepted him as a Medicare rehab patient, but is now a full time resident with the hospice care. The hope was that the nursing home could provide “base-level 24 hour care” and hospice could be an additional layer, creating a network of care that would work together to manage Dad’s health needs, pain, and anxiety.


In reality, hospice is fighting the nursing home’s inability to recognize verbal cues (moaning/yelling) as a request for as-requested medications, and we are constantly behind the pain and anxiety. Family will visit and find a man who is obviously in pain and/or anguish. We think the nursing home is simply under-staffed and unable to spend the time required to care for Dad. Hospice agrees and we’re working with that team to maximize scheduled meds and minimize requested meds to ensure we keep in front of the pain/anxiety. I find myself having to be at the nursing home every day, and sometimes multiple times a day, to ensure he’s comfortable and to request meds as necessary on his behalf. I am POA.


Dad is not eating on his own as of 3 days ago. If you ask him if he’s interested in a meal, he typically says no...although he may still show occasional interest in an Almond Joy or a root beer float. While on the phone with my sister earlier today, hospice said that their goal is to reduce Dad’s pain/anxiety to increase the probability that Dad will want to eat, and that the nursing home hasn’t “taken the time” to make sure Dad is eating (to get him to eat, you have to feed him yourself, bite by bite). Sister says this, along with the inability to get in front of the pain/anxiety, is neglect by the NH. I, however, think that Dad is ready to go and I generally disapprove of the NH trying to go above and beyond to try to feed him.


Anybody been in the same situation? I’m thinking a meeting of the minds between the NH nursing mgr and hospice
may be in order to determine a concise care plan (or determine that the NH is unwilling to carry out hospice’s care plan, in
which case I’d expect we’d have to move Dad) and make sure everybody’s on the same page.


Thanks in advance, and thanks to all the people who have been through this and still take the time to help the inexperienced.

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Pipeguy; in my experience, there is lots of miscommunication between families and NH. Most families seem to be concerned about over-medicating. I learned that here; and learned that exonerating NH about that made a BIG difference!

We were fortunate that we were able to investigate hospice long before we signed up, so we knew which organization the NH worked well with. There were already established lines of communication between this Hospice Organization and the NH staff so stuff went smoothly.

I'm sure some folks would say that we "killed" my mother; she was in terrible distress and close to death when we called in Hospice. As she had always made me promise "no pain", I had very little guilt over what course we took.
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pipeguy07 Nov 12, 2019
Just left the NH; the staff nurse made a point to let me know my message was received by staff. Dad was calm and resting for the first time today. Thanks again.
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Yes, I would suggest you have a meeting with the Nursing Home
Nursing Director and Hospice and yourself. I put my Mom on Hospice and she was in the nursing home. Luckily, the nursing home seemed to follow Hospice's directions regarding medication
for pain. We did visit on a regular basis and if we noticed she may
be in pain, we would notify Hospice and they would contact the nurse to administer more. Good luck. Overseeing a loved one's
care is very stressful and can be overwhelming at times. Just dealing with the nursing home prior to putting her on Hospice was a challenge. They all seem to be short staffed and not very good at informing any care changes to their CNAs.
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pipeguy07 Nov 12, 2019
CGH - Thanks for your experience. I hate that NH’s seem to be short-staffed, since it’s obvious that so many staff have real passion for helping others but are stretched so thin. Communication back to hospice is being a challenge, which is why I continuously find myself back at the facility, checking in with Dad. I’m realizing that it’s difficult to be a son while trying to be an advocate at the same time. One role takes empathy and one takes logic. After chasing meds all day, I feel like we are both too tired to have the ideal hospice experience.
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Oy, I feel your pain! And your dad is SO young (he's the same age as I, so by definition, young).

So, my mom, much older, with vascular dementia, could not localize pain, said "no" when asked if she was in pain, but would indicate to us that she was writhing in pain. Not a good situation.

We had a care meeting with the NH team; I told them that I would NEVER accuse them of overmedicating my mom (which is a real fear in NHs). I convinced them to increase her pain meds and keep the PRNs as well. I found that telling them that I had promised my mom that I would NEVER let her be in pain, either physical or psychic and that I wouldn't accuse them of over-medicating, got them to my side of the page.

I hope this helps. Does the Hospice team have a NH they prefer?
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pipeguy07 Nov 12, 2019
Barb - I agree, he is still young. Must have been his (and my) genes though, his parents also passed in their 60’s.

I had previously left a voicemail with the nursing director, and although I didn’t get a call back your message reminded me to have that very conversation and when I succeeded at getting in touch this evening she was relieved to hear it. Thanks so much.

I still need to talk to hospice about NHs they’ve worked well with in the past in case we need to make a move. Why don’t hospices have more nursing care locations? Seems like there’s a need there.
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