Dementia, hospice, a need for 2 caregivers and a nursing home. What do we do?

When your dad requested to die at home, he had no idea what he was asking. Neither did his family have any idea what goes on when a person wants to die at home. Sometimes it's impossible to honor a wish that shouldn't have been made in the first place, and explaining does no good with a dementia patient, so don't even try.

Your dad needs a lot of care. Affording it is a huge problem. He needs to be in a place where he can get help from trained health care professionals 24/7.

My dad wanted to die at home, and I did everything to make it possible. I've posted this before, but it's worth posting again for you and others who don't know what dying at home is like.

On dying at home: This is what my dad wanted to do, and he did. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.

So let's walk into his home, a beautiful South Florida villa. He'd been sick for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.

His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either. 

The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the space we needed between trash pickups). Always laundry to be done.

Dad crying that he wanted to die. Hospice doctors, nurses, a minister and PTs in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.

This is what dying at home looks like. I'm not doing that to my family

This is exactly why my FIL ended up in a nursing home. He weighed over 300 pounds (6'2") and was getting to the point of being completely bedridden when he was being cared for at home. If he fell we had to call for a lift assist from the fire department and they had to send TWO crews to get him up.

He wanted to stay home. We wanted to be able to provide that for him.

BUT...

There comes a time where you have weigh NEEDS with WANTS.

Your father WANTS to stay in his home. You WANT that for him. Pretty much everyone wants that.

But what does he NEED? What does your mother NEED?

While what you have right now is a misunderstanding and a suggestion of two CNAs to help lift him - it is a slippery slope.

It is very easy to go from "we'll jump off of that bridge when we come to it" to "OMG! We have to do something RIGHT NOW! WHAT ARE WE GOING TO DO?" (believe me....we found ourselves in that second scenario after dragging our heels too long and not making any plans)

My FIL's "wishes" were to die at home (they were demands actually). He was adamant in his refusal to go to a nursing home. It was taking FOUR of us to keep him in his home. My SIL now has had 2 surgeries. My BIL has an implant in his back for pain. My DH has had 1 surgery and another potential one. And I've got potential surgery in my future. Any guesses why? Physical strain, stress, pain from caregiving for a man who couldn't help himself and his home became a gauntlet for him. None of us had any issues with any of these things when we started caring for him.

He was a two-person assist EVERYWHERE he went - which after a while we just had to stop taking him anywhere that wasn't medically necessary. When he could no longer get himself out of the bed and to the bathroom - we knew it was over. There was no way we could keep him at home.

A fall took him to the hospital then to rehab. He was adamant he was going home. We finally had to put our collective foot down and tell him we couldn't do it anymore and that he would have to hire caregivers. He said he couldn't afford what was necessary to provide home care (it would have required 2 caregivers each on three 8 hour shifts in order to help him out of the bed).

He STILL demanded to go home. We told the rehab we weren't doing it anymore and he was an unsafe discharge if they sent him home. They helped us find a nursing home.

We were very lucky - he is a Veteran and the VA has helped us significantly in finding a place and in actually providing some monetary relief for his care.

But sometimes - you don't have a choice. You HAVE to choose to ensure that their needs are met over making sure they get what they want. If his care is more than can reasonably be taken care of in his home - you will have to consider other options. There is nothing wrong with that.

And it isn't dishonorable to him to ensure that he is taken care of safely. You aren't dishonoring his wishes if he isn't allowed to stay in his home. I don't mean to make light of it - but my diabetic FIL would love to eat candy all day long. We can't honor that wish because it isn't what is best for him. Sometimes what we want isn't what is in our best interest.

Start here- NO ONE who loves an older relative who is losing abilities to self care and maintain a good life “at home” EVER wants to consider residential placement, even when it may be the safest way to provide for care.

Whether “hospice” failed to communicate or not, hindsight isn’t helpful, because the fact is that you are learning from multiple sources that his circumstances REQUIRE more management and care.

If as you say he is “very lucid in the mornings” what specifically does that mean in terms of the rest of the day? “A little confused” sometimes can very quickly become “doesn’t know where he is” or “doesn’t recognize us” or “can’t tell us when or what he needs”.

Would it be kinder to conduct conversations about how to best manage his care without him present? Sometimes it’s more important to get the facts on the table without having to address how much is being understood by person being discussed.

Continue to remember that MANY people who “want to die at home”, simply cannot do that, based on their care needs and the legitimate needs of the loving family members who are trying to decide how to approach their care needs.

You may find that no “GOOD” decisions are accessible to him, so you, as the people who love him, will need to decide what will be the best of the hard “not great” decisions, and that all you can do then is to do your best.

Hard, HARD stuff, so remember, you are among people here who understand this. Hoping you are able to come to a decision that will bring you all some measure of peace.

In my opinion, Hospice can suggest all they want, but if the family can't afford an aide, they can't afford an aide. They do not have the authority to boss you around. Dad is their client and they are being paid to do his care. They cannot order an extra aid unless Hospice is paying for it. Thats assuming the family can afford it and the Nurse should not be making that assumption.

Your problem is that Dad is a big man. He is a 2 person assist. A woman I know husband was like your Dad and she had a male aide for him. The male aide told her he could no longer care for the man so she had to place him in a NH. If you Dad can't help, he is dead weight. 200lb is a lot of deadweight.

Thank you to everyone! Lots to think about and consider. I called the case manager for my dad and found out that it was just a misunderstanding. The nurse was “suggesting” to my mother that there be two CNA’s to help lift him onto a bedside toilet when he insists.
I let the case manager and the nurse both know that since I have a medical POA for him I would appreciate all “suggestions” in the future be presented to me first since my mom lost the little bit of sleep she gets worrying about it. Actually, we both did. They apologized and we have a mutual understanding now.

Hospice now is exactly what you were told, one RN visit for an hour a week, phone call from Social Worker and Clergy and an aid to do a bath only three times a week. For that medicare pays an enormous amount which is why they are all being bought up by hedgefunds. You can google articles on this yourself. As an old retired RN this has been a heartbreaker for me.

You need to consult an elder law attorney now about division of assets for Mom and Dad and I am afraid your Dad needs placement. I saw my friend out with two aids on 12 hour shifts end of last year, just about a year ago. It was ENORMOUSLY expensive even tho the aids were paid only 20 an hour by her under the table. And it was a mess, but she was certain to go in a two months time. For you there is no such guarantee I can see and I don't see this as financially sustainable without meaning ruin for your Mom.

Start with Hospice social worker and tell them that you NEED THEIR HELP (something they are no longer used to giving). Get options for him to be moved into hospice care. Call every hospice agency in your area to see if there are any that still do in facility care. Rare now, as hen's teeth.

I am so sorry. I see the awful mess you are smack dab in the middle of and it is awful. It will rob your Mom of her money she needs to go on for certain. See an attorney for protection options which vary state to state.

You have my absolute sympathy and I hope that you will update us.

There have been many reports on this forum about bungled Hospice care and it's not always because the family doesn't understand, some providers are better than others. I think your first course of action would be to meet with your hospice provider to go over your expectations and theirs to see if there is any common ground, if not you may want to interview some other hospice providers to see whether a different organization will suit you better.

When someone needs 24/7 care, a facility is always cheaper than home care. Our mom needed someone with her 24/7, and when home care fell apart and she had to go into AL, we immediately saved thousands each month. And not having to write endless checks was a nice bonus. Not to mention no more scrambling around for help during the holidays.

I am in a similar situation - was given a LOT of misinformation by the discharge planner at mom's rehab, the worst being that they told hospice that I LIVE with her. I don't even live in the same town, plus I have a family, house and job. I didn't find out until 48 hours before she was released that I had to hire 24 hour care.

Now mom is paying $10,000+ a month for home care, and the only reason it's that cheap is because family is providing 2+ days a week of care. Now we don't even know if mom is actually dying, but we do know for sure that if she lives she will be wiped out financially.

I'm sorry I don't have any advice. Just want you to know that you're not alone.

I want to add a couple of thoughts.
First do what CWillie suggested about calling the hospice company and then what Alva suggested re contacting a certified elder attorney as you need to KNOW upfront how to manage your parents finances in order to see them BOTH through the remainder of their lives.

Please don’t be telling yourself you will worry about mom later or planning to finance her care. it will give you enormous relief to simply know that you have a plan. There are programs available to them that are not available to you and may not be available to you when you are their age.
ABOUT communication:
I suspect your hospice “community educator” isn’t an employee of the hospice co you are using but a contractor for many hospice companies, paid by Medicare and it isn’t a Medicare rule so she didn’t cover it. Rather it is perhaps (you will need to check) unique to your hospice company and possibly is in an effort to protect the backs of their care workers. Just musing through here. What is common knowledge to some in the industry is not known to the patients family who have limited experience.

Due to staff shortages this nurse may be able to make such requirements and have the support of her company. Remember these are in many cases small private companies and can decide not to take certain clients. It could be the nurse is new to hospice care and in her background such requirements were standard. Don’t assume she knows all the rules. Unless she is the owner she may be mistaken. Also just occurred to me that the nurse may be suggesting this at the request of the agency providing the aides. Are they connected? Did the hospice company provide them as a resource?
Call the hospice company and call other hospice companies with your specific questions. Look on Medicare.gov for ratings on diff Hospice companies in your area. You can call NHs, hospitals, Acute care hospitals, home health companies and ask which hospice companies they are familiar with. Some won’t recommend. Mention a few and ask if they come into their facility. Or visit the facilities and talk to the admissions folks. Remember they are sales people and come and go but for a sale they will try to get you answers on how they manage large clients.
I have a hospice aide my DH aunt still uses. I remember back when she was aunts home health aide that she would sometimes have to meet up with another aide to bath an extremely obese patient. They had a lift they used to help.
Your dad is not the only large patient out there. And while I know I couldn’t put him on a commode, aunt has had aides that could have. Maybe not should have, but could have.
Sadly your dad will probably not be having such support in a NH as two aides on command to sit him on the commode. I would look for a small personal care home if forced to move him.
A couple of possible work arounds. One of our longtime posters had a disabled husband. She had someone come in each day to help her sit him on the commode.

Another idea is to see if one of the existing aides can either stay an hour over or come in an hour early so that there are two to sit him on the commode. This until he declines past this point and becomes totally incontinent and using the diapers. This would happen very soon in a NH.

Please let us know what you find out as this is a new issue with hospice on the forum. We learn from one another.