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My dad has made the decision to leave rehab and go home on hospice. He has end stage congestive heart failure, for a very long time now, and so many times has done the hospital trip to pull fluid off, sometimes going back home, and sometimes going to rehab. The difference this time is that it’s been over 3 weeks and his already fragile, rollator dependent walking isn’t coming back. Add to it that his O2 levels rapidly decline with any efforts, his shortness of breath is worse than ever, and his overall weakness is just pitiful. His cardiologist told us the kind thing to do was end the rehab attempt and let him come home, the doc thinks it will be a matter of weeks. Dad still has a very sound mind and made this tough decision himself, he comes home tomorrow.
So what does it look like? We know what’s being basically provided and we know there won’t be help all the time. What happens to a man who’s very aware when he’s slowly dying? Or does it remain slow? He loves his recliner, will a power one be provided if he can’t use his anymore? His helper wants to stay employed, how do we best use her help around the hospice help? Do we automatically need to be there around the clock, or will we just know when that’s needed? I know the obvious answer is the hospice staff will answer our questions, but any insight from those who’ve walked this path is appreciated. My dad is very tired of the struggle, and my heart is breaking more than just a bit...

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Both my grandparents were in my house to the end with hospice care. Nothing major wrong, just old and winding down. The aides that came for personal care were well trained to look for declines, prompting a nurse visit. Grandpa was more sudden, he had pneumonia and died in his sleep. We said our good byes every night. I had already spoken to the local funeral home when my GPs moved in. They had the plan and counselled me that death was natural and nothing to be afraid of. Both passings were calm. The nurse came right away and then the funeral home.....
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Reply to bowgirl
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Thank you all for the input on my dad's new and ever evolving normal. We’re less than a week into this and have already learned so much. While doing so poorly in rehab, my dad constantly told everyone how ready he was to die. Since being home, a switch has flipped and he’s positive and in denial about what hospice means, though it’s been made very clear to him. We know this won’t last and are trying to enjoy his good mood. The hospice nurse has been wonderful and the hospice company has happily taken my calls without fail. My dad adores the aide that comes for showering help. The only Covid change with hospice is not having their normal volunteers. Finding people to stay with him around the clock will be the biggest challenge. I can’t do it alone other than for brief periods when he’s resting because I can’t lift him if he falls. And he’s a big fall risk. But so far so good. Trying hard to make him feel valued and loved and not like a chore or burden
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Reply to Daughterof1930
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Playadelcarmen2 Jul 2, 2020
I am very happy for you! Enjoy each and every moment that you can. Sometimes, denial is the best medicine. If it makes it easier for now, take it. Will be watching your threads and praying for peace for you and your family.
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Imho, having gone through similar care (Palliative) with my late mother, I send you prayers, Daughterof1930.
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Reply to Llamalover47
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All good advice. You might want to rent an electric recliner with a hand control. You can get them thru hospital equipment rentals I think. Maybe someone here knows. If possible get one that reclines really far, almost into a bed. Even if hospice provides a hospital bed, the recliner will help as he can sleep in it with head elevated. I know you are scared but share your feelings with hospice staff and they can help you too.
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Reply to dogparkmomma
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Notgoodenough, Hospice had ppl come in and shut it off. They explained, that it wouldn't save his life any longer. It would only traumatize the person who found him. It would continue to go off until someone showed up, to shut it off. They give everyone the choice and not one person has left it on. I thought my dad was gonna be there first, but he finally realized it was only gonna harm someone now. It was a hard pill to swallow, for him and my Mother. I had already looked it up, so I knew eventually it was gonna happen. Pacemaker stays on tho. Feel free to ask me anything, if I can help I will, I am trying to gain as much knowledge as I can too. My Mother is an 84 year old narcissist with dementia. She makes helping my Dad very hard. I need all the help I can get. Lol Good luck to you, in these hard times.
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Reply to Playadelcarmen2
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notgoodenough Jul 1, 2020
Thank you so much for your response, I will talk to hospice when the time comes.
I'm sorry for what you're going through. It makes it easier, for me, to have empathetic people who have "been there, done that", so to speak.
Peace to you and your parents on this next journey.
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I am in the same place as you. My father has chf and has been on hospice for three weeks. The second day, they shut his defibrillator off. That played mental games with him and he seemed to get very depressed. I kept telling him, nothing had changed. Still on his same medication and I try to control the water weight by forcing the daily weigh in. It took two full weeks for him to pep up a bit. I think with all the things hospice brings in, it's a reality check. I still haven't figured out who to call when we have issues or what is and isn't treated anymore. My dad seemes to have alot of life mentally but like yours, the heart doesn't. I am very sorry for you, and all of us. This is not a fun ride at all, but necessary. My dad says he isn't afraid to die, just wants to go in his sleep. It cannot be easy, knowing the count down has started. Your father is very lucky to have you and your help. You're a good daughter.
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notgoodenough Jun 30, 2020
I hope I'm not intruding on your situation, but if you don't mind my asking, who shut off the defibrillator and why? I only ask because my mom has one, too, and we are getting toward the time when we will be calling hospice, and I have been wondering about her defibrillator.
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He will get comfort care, some equipment, bed, Oxygen generator, medications for pain and anxiety. The hospice assists, but doesn't necessarily replace, the caregiver, or helper, as you call it. Will it remain a slow process? I don’t know, wasn't for my mom, who declined for over a year, but then rapidly in the last 3-4 weeks before death. Also at home.
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Reply to amoeba
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I am so sorry about your father. When it comes to hospice, use them. They're amazing people. When my mom was on hospice they helped me more than how they helped Mom--and they were amazing with her!

Ask questions. Ask what you might expect for your dad. Ask how for advise on making life easy for your dad--and for you. If they have a counselor for your dad then ask if you can speak with the counselor for advice.

Mom's hospice provided a LOT of helpful items like the hospital bed and "stuff" like the Chux. They did not provide a power recliner. My sisters and I bought a very nice used one for $200. After Mom passed, we donated it to the hospice to use for others.

I'm relieved your father has his mental faculties. I'm sure all his papers such as his finances, will, and living trust are in order, though be sure of that.

You know a lot of us on this forum and many of use have been in your shoes. It's hard. As you escort your father on his final journey I wish you all peace. *hug*
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Reply to MountainMoose
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In our area the Hospice is nurse is back to coming in weekly. During the worse part of covid she came every 2 weeks. She said by law they had to come in by at least day 14. I guess some areas allowed televisits to meet this. Volunteers are on hold. I let all my moms help go and the Hospice CNA for bed baths during this Covid time. I am now ready to bring the CNA back for showers but not the paid helpers, Hospice provided a Hoyer lift, and diapers (I only use at night) plus very small disposable chuxs. I find the small hoyer lift they provided a God Send. We passed on the hospital bed because we were able to get one from the Lions club. This way if mom is released from hospice down the road we will not have to scramble for a bed ( Yes people do get graduate from Hospice, its rare but does happen / my cousin graduated after being on Hospice for 18 months)
My first hospice experience with my MIL was not a good one. This second experience has been great. I pray all goes well for you and your family.
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Reply to KaleyBug
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I am in a similar situation, having tough decisions but although my dad is of sound mind - sort of- I've been making decisions, English second language. Have to make a decision on home hospice with my 85 year old mom - and she's quite complicated - or hospital hospice. He was diagnosed with cholangiocarcinoma in December and was gung ho about surgery at 87 - the dr was not advising it - in the mean time while we were meeting with the cancer specialist and about to start chemo, he got hit with a lumbar infection during the first week of Covid lockdown- its been down hill since then - 3 hospitalizations and we are at the decision stage on how to go forward. terribly difficult decisions all around, really hard to nagvigate everything and its only me making decisions - when I call him he say hello and hang up the phone - not a phone guy. And my mom is in her own world and overwhelmed herself.
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Reply to Cascia
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Hospice in this time of Covid-19 is very different than before Covid. Before Covid my husband would have an aide come twice a week to bathe him in the bed as he is bedridden, and now Hospice won't allow their aides to come at all, leaving my son and I to bathe him once a week (my son can only come on Sundays). Before Covid, the nurses came once a week (more if needed), now they only come once every 21 days, with making televisits on the other weeks. They've also discontinued their massage therapist and volunteers coming. So just beware that things are not "normal" with Hospice right now.

As far as the helper you have coming, please let them continue coming as they will do way more than Hospice does now.

I'm sorry that you are facing this difficult time right now, but it sounds like your dad knows what he wants, and that he is ready to go when it's his time. Be grateful that he was the one making his final plans, and not you, as sometimes that can lead to people second guessing their decisions. God bless you.
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Reply to funkygrandma59
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Grandma1954 Jul 1, 2020
I think this depends on the Hospice. The one I volunteer for still has CNA's going into homes, they are doing bed baths not showers. And they still have the Nurses checking on the patients.
It is in the facilities where they have been reduced as the Facilities are using their own staff to minimize contact. And some facilities are allowing Hospice staff in. So it depends on the Hospice what their current protocol is and it depends on individual facilities.
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First, let me say your dad is a wise man.
The Hospice team will be in several times. The Nurse will come 1 time a week, more if necessary.
The CNA will come in at least 2 times a week to bathe and dress your dad and change bedding if necessary. (The Hospice I volunteer at has discontinued showering people due to COVID19 but a bed bath will still be given. I do not know if it is the same with all Hospice)
Volunteers are also not doing in home visits at this time.
So the helper that he has had will probably still be needed on the days that Hospice is not there or even if they are there they will not be at the house all day. So if he is comfortable having them, and you are then why stop.
Hospice will not provide a recliner but they will provide a Hospital bed. Make sure the mattress is one that will relieve pressure since he will be in bed most of the day. My Husband had an Alternating Pressure Mattress and while it was a bit loud he never had a problem with pressure sores. This was provided by Hospice.
You will get a lot of support from the Hospice staff.
I am sure you will get a pamphlet on what to expect but there is a real good one you can read on line (I think it explained in better terms than the one I got) the title is "Crossing the Creek"
You do not need to be there around the clock. There will be signs when he is at EOL (end of life) BUT do not be surprised if he chooses to die when no one is there. The Hospice nurse told me that that is not uncommon and death is private and many wait until the room is empty to die.
There are medications that you or the caregiver can give to make sure he is in no pain. (or he can self administer if he is able) the medication Morphine will relax him, he may sleep easier but in the dose prescribed will not, let me repeat that will NOT kill him. (I read so many stories that say Hospice will kill someone when they are given Morphine..this is so far from the truth..ok off my soapbox now)
Power recliners by the way are getting fairly inexpensive and with a doctors note might be able to be written off as a medical expense on his taxes, it is at least worth a shot.
All I can say is I would not have been able to care for my Husband the way I did if it were not for the WONDERFUL help (education and support) I got from Hospice.
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mamabair5 Jul 1, 2020
Thank you for the reminder about the morphine. I still have nightmares about it with my Dad’s death two years ago. I wake up saying, “I’m sorry, Dad, I’m sorry!” I know logically the morphine was FINALLY relieving the pain he was in for so long and helped him rest comfortably, but I think because he went so quickly (hospice for three weeks when we thought he’d graduate off of it) it’s emotionally painful.
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