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...
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.
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.
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.
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.
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*
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.