My 92-year-old dad was kicked out of rehab because he was not progressing fast enough for the insurance company to continue paying. We decided the next step would be hospice at his own house. He is very heavy to lift and has lost strength throughout his body. Gets tired alot. Appetite is bad. Wondering how we are going to get through this difficult time and how long he will survive this?
Hospice will have a nurse to come visit him once a week to start to check his vitals and such, and they're usually there about 45 minutes to an hour tops. They will also send aides to come bathe him about twice a week and that's about it.
They may have a volunteer that can come sit with him a few hours a week, but they're not allowed to do any care.
The upside is that they will supply any and all needed equipment like hospital bed, and Hoyer lift(since your dad is "very heavy")along with all supplies(diapers, pads, creams, etc.)and any needed medications all covered 100% under dads Medicare.
But still you guys will be doing all the hands on care. Are you prepared to do that? It may be best instead to have your dad brought to a long term care facility, where he will receive the 24/7 care he needs, and you can still have hospice involved while he's there.
I cared for my husband for the last 22 months of his life in our home and he was under hospice care the entire time, so I know what I'm talking about. I had to hire an aide to come in the mornings to put him on the bedside commode so he could poop. My husband had a permanent catheter so that made things easier from that perspective, but it was still A LOT of work for me.
I wish you the very best in getting this all figured out.
Not much. I speak from a long experience dealing with jospice at home.
They will be an aide who will help him bathe or shower a few hours a week. Or give him a bed bath. Insurance will start paying for diapers and supplies that he uses while on hospice. A nurse will come in a few times a week, take his vitals and order supplies. They pretty much do all of nothing. They will also send a social worker to stop in once or twice a week who willbe completely useless to everyone.
This is what hospice at home will do for you. You'll pretty much be responsible for everything else.
You might want to look into a hospice facility for your father.
Hospice is end-of-life care (as in medical care). They send a nurse and an aide to give a bath once or twice a week, but the hands-on caregiving is still the responsibility of the family.
Hospice is a godsend, because the medical professionals come to you so you don't have to go to them. They also support the entire family through the dying process of the loved one. Ignore those here who have said they kill people -- they do not -- nor are they a hindrance. Hospice is an on-call 24/7 service designed to help people in the last months of life when going back and forth to the doctor and hospitals is no longer useful.
The most important thing to know about hospice is that it now becomes about the QUALITY of life, not the quantity. Their goal is not to keep someone alive at all costs, but neither are they there to hasten one's death.
Have you contacted any hospice agencies yet? They are definitely not "one size fits all".
What usually happens first is the hospice agency sends an intake nurse to evaluate the patient. I *strongly* suggest that there are several family members there when this evaluation takes place, especially the ones who will be primarily responsible for dad's care while he is in hospice. Because if dad remains at home, then 95% of the caregiving responsibility for dad will rest with family members. Listen to the intake nurse; ask as many questions as you need to; take and keep notes. It's a lot of information to take in in one sitting; hospice will also likely leave you an informational packet. Read through it, and if you have any questions after, reach out to hospice and ask. If the first hospice agency you interview doesn't appeal to you - for whatever reason - then interview another and another until you find one that you and dad are comfortable with. If you "hire an agency and they aren't fulfilling their obligations - a.k.a. not communicating with you or answering your calls/questions, then you are within your rights to "fire" them and bring a different agency on board.
No one is going to be able to give you an exact time frame on how long dad has, not even hospice. But they will recognize signs that a layperson can easily miss - they did with me when my mom was in hospice. But they will send a nurse to check on dad, provide him with incontinent supplies and prescriptions, will send an aide several times a week for bathing, and give you access to a social worker and a member of the clergy if you/dad so desires. They can also provide volunteers who can sit with dad for a while should you need to run out briefly; I'm not sure how those volunteer programs are doing with Covid still lurking around. Hospice also provides support to the family who are caregiving for the patient. And hospice will provide your dad with a "comfort pack" - end of life medications for if/when the time comes that he needs them. While dad is on at-home hospice, a family member will be primarily responsible for administering those then the time comes, so whoever is taking care of dad will need to be able to give those medications.
Again, I'm sorry your family has to go through this. (((hugs)))
Hospice is for people who have a prognosis of 6 months or less. The patient (or family members, if the patient is unable) has decided not to seek a cure for their illness.
Hospice is fully covered by Medicare. It includes:
a doctor's evaluation
a nurse assigned to the patient
social worker if desired
chaplain if desired
CNA care if desired
medical equipment if needed
volunteer support if desired
24/7 help and availability
The goal of hospice is to make the patient's last months, weeks or days (and sometimes YEARS) as comfortable as possible. Most people's quality of life improves on hospice, and the #1 comment from patients and family is "I wish we'd done this sooner."
It sounds like your dad is already withdrawing from this world by sleeping more and eating less. His body is probably starting to shut down. This can last months, or days.
I think hospice is a great resource. My grandfather and aunt were on it, and it made their last months more comfortable and made the rest of us feel more supported and less alone. That's why I became a volunteer, and I would advocate for it for myself, my husband, etc.
It is a sad time, but it can be a beautiful and rewarding time, too, facing this inevitability head-on and honestly. Take good care.
Hospice treatment can be given a nursing home and often is. The same support is offered to the patient and the family.
hospice doesn’t have to come every day, however they bill Medicare daily. Our experience was horrible. The nurse immediately began dosing my Father with morphine. She upped the dose on a regular basis…she told us it was to soothe him so he wouldn’t become anxious. It didn’t. He laid in the bed for 11 days, developing hideous bed sores…Hospice didn’t want to do anything about the bedsores…I ended up calling everyone on the Leadership Team at the hospital…the Medical Director actually came to our house..in 15 minutes he was being prepped to go back to the hospital for in-house Hospice and treatment of the necrotizing wounds.
I learned (do your research), that oxygen isn’t necessarily helpful to the dying person..however Hospice brings it in because it makes the family feel better. And be careful of DNR-a hospital WILL pull oxygen and all other services they deem ‘treatment’ and not ‘comfort’. Again, awful experience…let your family member pass in the hospital. It was the worst experience.
I've worked many private care clients who then went on hospice care. I find they don't even provide support to a family. Mostly they were an inconvenience and in the way.
* You will need a MD authorization for Hospice. Did you ask his dad's medical provider about getting him into Hospice? This would be the first step / along with contacting your local Hospice organization.
- it is important to know their philosophy re medication. Their purpose is to provide COMFORT CARE; not staying alive with medical intervention. Although they will provide meds for pain (= comfort). Be clear on what they do and do not do.
* The main fact I learned working with others availing themselves to Hospice is that a person DOESN'T have to be diagnosed having a terminal illness to qualify.
* From my experience, two different Hospice organizations provide different levels of skills and support. First one was 100% there for me (for my client); the more current one is less than desirable - which started with the coordinator who set up everything ... said she'd do xxx and didn't ... and didn't even let me know ... when I am managing / handling / coordinating everything. Unfortunately, unless you have references from others, you may not know this until you are in it.
The 'best' response to getting through these difficult times is:
* stay in the moment / return to the moment when you start to future trip
* give yourself time-outs / breaks / have others in place to support you.
TAKE CARE OF YOURSELF; Get the respites you need.
* No one knows how long your dad will survive. I believe you are speaking of your grief and sadness, and your overwhelm in this situation and your responsibilities. It is huge.
Gena Galenski
Touch Matters
You can also check with the insurance to see if the offer any in home care as well. They sometimes will allow a nurse or in home therapy to visit.
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