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This has been such a long almost 5 years. My Dad 100 - 101 end of March is on hospice but they only tried morphine once 1/2 dose for some difficult breathing - he has CHF - did not help that much only made him cough more and spit up blood tinged mucus. His own inhaler helps him best. This week he is very weak on his legs - still toileting on his own while hospice nurse was here. She doesn’t do much. She said oh he is very independent. He planned to have dinner this PM but by evening he only wanted to go to bed so that’s what he did.My father admits he is tired and weak. More confused, coughing more with mucus accumulation in throat, can’t see (complaining about poor lighting for which it is not) wants lights on during day and thermostat at 90 which I can only tolerate 75 and even that’s a bit much, hard of hearing dispute hearing aids and he thinks he will be able to make it to spinal clinic appt for injection referred back as he had gotten them there before - as recommended by orthopedic appt last week at which he told doc he had two buttocks on one side and the other side was blank (boy I had a hard time keeping my composure on that one!). . If he falls my only option would be to call 911 and then the hospital could send to rehab. I know hospice says no 911 calls - wants me to call them. But I can’t take this anymore and am feeling anxious about all of this and the potential of whether or not he will pass soon.PS - So glad Brother visited today and agreed too - we talked while Dad was in bathroom.

I cared for my dad during his home hospice time. He had CHF. No. one with hospice ever gave him meds, I did after receiving guidance on their use. Morphine eased his breathing difficulties and Ativan was a gift in helping him be calm. His last five days he did not get out of bed at all. Our hospice agency had a list of people, not employees, that they knew to be good workers, mostly CNA’s looking for extra jobs. I hired a couple of them to help me, they were excellent and true godsends. Consider getting help in, hospice is great for supplies and guidance, not so much for hands on care. In your shoes, I’d put a space heater in dad’s room and not roast myself keeping the whole house hot. We were told three things would point to the end being near, stopping eating, stopping communicating, and sleeping a deeper than normal sleep. These proved true with my dad. It’s an emotionally and physically exhausting time for a caregiver. I think I was an a haze much of the time. I’m sorry you’re both going through this. Rest is as important for you as it is for dad, do so at every opportunity. Don’t worry about being present for the moment he dies, it’s highly overrated, death is truly a solo journey. Reassure dad, lie if needed to give him comfort and peace, and know you matter too.
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Reply to Daughterof1930
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Call the hospice provider —say you need to speak to either nurse coordinator or social worker. Describe what you are going through.

Many hospices have facilities for respite care. You should qualify for a certain number of respite care days. I think my dad qualified for 5 days out of every 60 or something like that.

Hospice helps the caregiver as much as the person.

If he falls, the hospice should send someone to do the lift assist. They will also call 911 if justified, such as if he gets cuts and is bleeding or hit his head.

I Agree that it is an overwhelming situation. Hard to think about anything else when dealing with this. Best wishes for peace to you all.
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Because the entire situation IS overwhelming!
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It sounds like his CHF is pretty acute if he is coughing up pink. Morphine is commonly given for acute CHF. You mention it is not helping but a half dose is not considered helpful. to combat the spinal pain since his other issue is more acute, can you ask the hospice doctor to bump up narcotics? It may knock him out but the goal here is to aleviate suffering which is what is happening
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Reply to MACinCT
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lealonnie1 3 hours ago
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Hospice does not really do much. The family is still responsible for care if done in the home. A nurse only comes out to do vitals. An aide should be coming out to bathe him at least 2x a week. Some Hospices will give a few hours so you can run errands or just get out.
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Reply to JoAnn29
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January 2025 I was with my 105-yr old Aunt (I was her out-of-state PoA), living in her own home, also very independent. She started having CHF symptoms in fall 2024. Eventually got back enough that her other niece (her local caregiver) took her to the ER because she wouldn't go to the doctor. My Aunt didn't have any other health issues and still had all her mind. They sent her home with meds and within a week she had a massive stroke, was paralyzed on her right side (couldn't talk, blink, swallow) so I agreed to give her morphine + Ativan and then she was on hospice for 5 days and passed.

All this to say your Dad could also have a stroke and still not pass so please come to peace with hospice doing what hospice does best. Don't hesitate to authorize the meds for pain and comfort. My Aunt would never have made it through rehab and was going to require a feeding tube, which is very undesireable for many reasons.

I would not take him out to any more medical appointments. You can tell him a therapeutic fib, that the appointment got cancelled and you'll need to reschedule it. I wish you peace in your heart as the journey with him concludes.
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Reply to Geaton777
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Whew, this is hard. Your father is 100? This has been a loooong road.

Quick thoughts:

If he falls and needs picking up, can you call your non-emergency police/fire dispatch line? In my county the fire department will come get someone off the floor. Whatever you do DO NOT try lifting him yourself and risk injuring yourself!

Could you keep the thermostat at a more sensible temperature and bump up the heat in the room he’s in with a space heater?

Congrats on keeping a straight face regarding dad’s very unique buttock situation! 😉
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Reply to SnoopyLove
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