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My dad is at home and needs 24/7 hospice care. He has end-state dementia and severe dysphasia. He also is in terrible pain. He is in New York City and I live in California. I have two sisters, one sis resides close by and the other in the suburbs.


He has caregivers through a home care agency around the clock now - they do 12 hour shifts throughout the week. This is the same agency that we have used for caregivers over the past several years for day shifts. Caregivers are not supposed to go shopping or do errands - I do all the online ordering for food and household items.


I am especially worried that he has had two falls just in the last week on their watch. In the last fall (yesterday), he actually hit his head, was bleeding, and the aide called EMS (though she is supposed to call the hospice number). She was present when it happened; I do admit my dad is a jumper and seems to get up quickly - I still feel that these falls shouldn't be happening on their watch.


Also concerning to us is that the aides cannot administer hospice medication on an on needed basis to alleviate his pain. Only family or hospice nurse on duty, if available to come over, can give him the pain meds. Sometimes this also makes me wonder if he is better off in a facility.


What is the best and fastest way to find private care in these circumstances? I think an agency that screens and recommends caregivers might help streamline the process. Thanks!

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Some patients are indeed better in facility, so mention this to the sisters giving the care. I would not come on too strong. The pain medications likely will make him more a fall risk. I hope that the pain is in good control, and that the sisters are liberal with the medications. Pain control is the main thing at this point. So sorry. Imagine difficult to see from afar and unable to help hands on. It would be best if one family member could now be present at all time, or in facility care.
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Well first off, nowhere does Hospice offer 24/7 care when in a home setting. You're lucky to have a Hospice nurse come once a week for 30 minutes and an aide twice a week to bathe, so if your fathers caregivers are the only ones there with him, there should be no reason why they couldn't give him his medications.(just don't tell hospice who's giving them) If they are oral medications, they can get them ready for your father to take and watch him take them. If they are given through a midline or picc line, they still should be able to administer them to him. I am not a nurse or a CNA, yet while my husband was under Hospice care in our home, I was the one who had to give him his medications, at first orally and towards the end through his picc line. There was no nurse here to do that for me ever. If you fathers pain is not being controlled by his normal pain medications you might need to see about having your father put on a pain pump. Hospice will have to start him on that in their facility, so they can monitor, but then once regulated, he could return home. There are no easy answers here and I know it's hard with you being so far away. Hopefully between you and your family that are closer, you can get things figured out soon. Best wishes.
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Why is your father in pain? Is it possible that he has broken a bone and needs an xray and treatment outside of hospice?

I would consult with the hospice nurse and SW about the level of care he needs right now.
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sorryselma Oct 3, 2020
Thanks, BarbBrooklyn. I spoke with his hospice nurse yesterday. His chronic back pain is likely from spinal stenosis. He just got back a couple of weeks ago from the hospital and they did a lot of testing/x-rays there. He was admitted for serious blood infection/sepsis and had bladder/kidney stones removed back in June after a UTI, and has been in and out of the hospital for the last three months.

Dad definitely needs 24/7, but hospice is suggesting private care as supposed to a home care agency because of pain medication administration. Caregivers provided through an agency are not authorized to give him any meds, not even Tylenol, that are not in his pillbox. He is currently taking a small dosage of oxycodone but also has morphine in the emergency box. His pain hasn't increased since his hospitalization a couple of weeks ago - he has only been on hospice care for a week. His pain is worse at night, and we are trying to manage that with hospice.
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