Elderly stepfather not ready to come home from Rehab Facility. Mom thinks she can care for him. Advice?

Thanks for your help. It went down exactly how everyone described. First 48hrs were fine then straight downhill. My mother is realizing this isn't best way to care for him and she is not equipped. His legs are locked and she can't move him. It took the transport driver and 3 other people just to move him for transport to dialysis. Her or My Stepfather can't keep track of his medicine. I told her please finally listen and get him on Medicaid and start looking for a SNH. She said no one would have taken him before because he has c.diff. I said because you were asking about AL not a SNH. AL doesn't have the level of care he needs. I told her the case worker knew that and it was her job to find you a place to take him with c.diff and explained you took him home and now it is your problem to find a facility that will take him with c.diff. It is hard because you know exactly what is coming, but you cant stop it and my mom and my SD just will not listen.

Whether the facility has a "trial by care" Beatty mentioned or not, two suggestions:

1) go spend a day with mom at the facility and have mom attempt all the care - transfer from bed to potty, etc. Men are generally bigger and heavier and in his case will likely be mostly dead weight. That alone should do it! Our mother outweighs me, I'm not as old as your mom, but now that she won't stand without help or walk, I have had to pass the baton for appointments to YB. There is no way I can do it, esp with a bad lower back plus 3 cervical disc removals/fusions. No Way.

2) as others suggested, have a meeting with this case worker and explain all the issues noted - stairs, bath, etc. Would a power wheelchair (or ANY wheelchair) fit through the doors? Is the bathroom handicap accessible? If there's only a tub, this won't work! Are there steps to get into the house - if so these will be an issue. SD is on dialysis and will have to be able to get out, into a vehicle, into the facility and back again. Who is going to do that?

We haven't gotten mom a wheelchair yet, only a transport chair and even lifting that into my car is a struggle!

Mom needs a REAL taste of what it will take to provide care for him. She's looking at this through rose-colored glasses. While he is in rehab, she might be assisting a little here and there, but hasn't experienced the whole situation yet. She NEEDS to at the least attempt to get him off the bed and into a wheelchair alone. If she can't do that, everything else is MOOT!

Agree with Tothill: "your Mum is in denial about how hard, if not impossible it would be for her to provide 24/7 care".

But she loves him & wants to bring him home.

My Dad was in a similar position. Mum had the big stroke, now in wheelchair requiring 24/7 care. No rehab gains being made - so family meeting time. But before NH was recommended, rehab offered a *trial of care*. Partner must come & stay 48 hours in rehab (sleep on stacked mattress on floor). Nurse does meds, partner does everything else: lifting machine, shower, dress, feed, BM cleanups - all of it. Staff told me many many partners are in tears within 2 hours. They then start looking for a NH & although broken hearted they know, really KNOW it was just NOT possible to come home.

Have you been able to have a family meeting? If not, insist on one. You & Mum sit down with staff, get an update from Physio, Doctor, Nurse etc. Raise your concerns about the house/stairs. Find out EXACTLY how much help there will be (ie 3 X 1 hr aide visits/week?)

Staff said to us: Going home is Plan A. Sometimes you have to go Plan B - Plan B can work out ok... Find a local place. Visit every afternoon.

(My Dad did pass his *trial of care* & once he paved the garden to build a wheelchair ramp, he did take her home - one level house. He is stressed, thin, she is demanding from sun up to sun down & beyond).

Our Plan B will happen eventully, just a matter of when. When health declines for either.

She will find out the hard way. So you will need to possible get an acorn lift for him if you want him to go onto all levels. Best to make the level closest to the front door exit his main entrance and exit to go out,so when the fire department has to come and check on him, if anything happens, like falling, like my MIL did, it will be easier for them to get the gurny in and wheel him out to ER.

Porta potty next to his medical bed. wheel chair, maybe perhaps a hoyer lift, and while she is at it, have the doctor determine if he qualifies for hospice and or palliative care.

It is not easy, and your mom abvioulsy loves this guy, and wants to prove to him her love. They could look for a senior living place or a assisted living for couples.
sell their townhome

Maybe someone needs to pay a visit to caseworker with mom. If there's no bedroom downstairs - is there any room to even set up a bedroom down there. Is there a bathtub or shower that he can even get into with a wheelchair downstairs? She may be getting a fluff story when she is talking with caseworker - Yes I think you can do it, we'll get you some help, it will be hard - but not impossible, etc.

She will not be able to take care of him. Perhaps seek out an elder law attorney. Start the Medicaid process/application.

Derek, it is easier for the case worker to send your step father home & set up home care. So that is one reason why she is giving your mother all that information. It is harder to get the Medicaid applications started & find a facility that is will take him while his Medicaid is pending. She’s likely facing pressure from the facility to get him out of there when his time is up. But also if your mother wants to bring him home then it’s the caseworkers job to help her make that happen. Been there done that with my FIL except his caseworker made sure to point out the reality of caregiving to my SIL when she wanted to bring FIL to her house. Instead of just saying yes we can set up home care and get this and that equipment, she told her there would still be 16 hours left in the day where SIL would be doing all hands on care for someone who could not take care of himself. I think you are right to try to advocate for your mom and get her to see that bringing her husband home may not be what’s best for either of them.

Can you take some photos on your phone or tablet of the townhouse's entrance, bathrooms, doorways and various stairways? I would use these photos as exhibit A when talking with any caseworker, etc., about how feasible it is for your stepfather to be cared for at home by another elderly person, even if help is brought in.

Before my father was allowed to leave spinal cord injury rehab there were lots of discussions with OT's and the social worker, etc. about getting our house ready for his power wheelchair. The rehab asked for photos and some measurements.

I'm not sure if I have any advice to offer. However, I can relate to what you're going through, and what you're 75 year old mother will likely experience caring for someone at home.

My mother was much younger when my father became ill and totally bedridden, connected to a ventilator to help him breathe--through his throat; a feeding tube, tube in his stomach to collect waste and another tube inserted to collect urine. Other siblings were pressuring my mother to bring him home (they would later basically disappear). She came to me while he was still in the hospital and told me she didn't think she could do it. I told her, "Mom, you need to be honest and tell the doctors." The siblings pressuring her would win in the end.

Before my father came home, we had a crash course in how to care for him at home. Stuff that took nurses years to learn, we had to learn in a matter of weeks (2 weeks I think). How to change out the tubing. How to suction to keep mucus from clogging up the ventilator to prevent suffocation. Glycerin mouth swabs to keep his mouth moist and from drying out and creating sores. Changing out the IV, hooking up the feeding tube, emptying the waste bag, measuring his urine outtake. Rotating him to prevent bedsores (A&D is a godsend in helping to prevent bedsores/so is Sweene cream).

My father was brought home. And as I said prior, other siblings who convinced mom to bring dad home slowly drifted away. Oh, they'd stop by to sit and talk for a minute or two, but not to lift a hand to help. I attempted to get Hospice involved. The lady even came to the house, but a sibling was there at the time and talked mama out of it. Every effort attempted to get extra help to give mom, my sister and me some relief was blocked by other siblings. My sister and I weren't living with mom, and we had small school aged children at home at the time, spouse etc. My sister, a single mom, was working at the time. I, married and between jobs, was able to come over and help more often. However, the bulk of the care fell upon my mother's shoulders. I begin to see my mother fracturing from the burden of all the care. Losing weight.....not sleeping, eating.
But still any suggestions attempted were met with hostility from other siblings, and at times even my mother. So I just began to remain silent and do whatever I could and be there as often as I could.

The company that handled the ventilator, the nurse who brought the equipment out and set everything up warned my mother that my father would likely die at home, but she would not realize he was gone, because the machine would keep doing what it was designed to do. Pump air into his lungs. Overtime, my father would come to appear mostly unconscious.
That's exactly what happened. I'll never forget it. It was Dec. 1988, close to Christmas on a Saturday, when my sister and I came over to help mama bathe, suction, change IV if needed, feeding, empty waste, oil him down with A&D ointment or Sweene Cream, dress him and turn him. When I noticed his eyes were slightly open and his pupils only moved like marbles whenever we turned him, but the ventilator kept pumping air into his lungs. I told mama, "Mama, I think dad is dead."

Dad had obviously died during the night at some point. Just like the nurse who brought the ventilator equipment out had predicted.
Ask your mom if she prepared to, or can handled your stepfather possibly dying at home? In addition to being able to handle all the other needs he will most likely require from her, even if there is some home healthcare services that will be involved? At night, when they're gone, unless there's 24/7 care, the bulk of care will fall on her, even with help.
That's my story. Over 30 years later, I still have the memory of seeing my dad's slightly opened pupils rolling around like loose marbles, and the moment I realized he'd died.

You don't. You don't understand so you also don't "talk some sense into her."

I can't tell you how many people thought I should place my DH into a NH but I said, "No, I will manage." Taking him home with me added years to his life! The NH would have cost him his life; not because they are bad but because he would have given up and died if he'd been separated from me.

Allow your mother to at least try or she will never forgive herself if he passes in the NH.

I am in Canada and cannot comment on how the rehab works in the US. I do know that here it is not limited to 21 days, Dad was in rehab after his stroke for several months.

But I can comment on the pressure put on a spouse and it seems to be greater if it is a husband needing care and the wife expected to provide it. If a wife needs care there is a tendancy to find a placement in a nursing home.

When Step Dad (SD) was hospitalized last fall, once it was determined that he had metastasized cancer and he needed Palliative Care, Mum was pressured to bring him home. Home to a 2 level, bedrooms upstairs, bathtub upstairs, house with Mum providing care 24/7 with 12 hours of home support per week. Mum who was 84 at the time, physically and mentally fit but not a homebody, not a natural care giver.

Thankfully this site provided information on the reality of 24/7 care giving and I was able to help Mum stand firm on not being able to provide the care. Mum also has a few friends who had provided 24/7 care and they also told Mum not to allow SD to come home. It was not easy for Mum to say no and she dithered back and forth.

Luckily the hospitalist took it upon himself to delay SD release twice, knowing he would not live very long. SD had a peaceful death in hospital.

Your Mum is in denial about how hard, if not impossible it would be for her to provide 24/7 care, just as my Mum was in the beginning. Mum went to the hospital 2x a day to visit and feed SD. She was able to go home, continue to volunteer, exercise, walk the dog etc when she was not at the hospital.

Trouble is, Medicare will oNLY pay 21 DAYS of Skilled Nursing and by then they will JUDGE and make aReport, Even Discuss Long Term Care in a Facility with You and your Doctor, Once he or she is let in on it. Not sure what you can do atthis point, Except involve the Social worker of this Facility. I agree with you.

It could be that she believes he doesn’t have much time left & wants to be with him when he dies at home.

I’m heartbroken for you. You clearly see the train wreck that’s ahead for your mom and stepdad even if she refuses to see it. I have a couple of suggestions. First, the therapy department should be working with both of them so they can make a thorough assessment of her ability to help him transfer and such. They have a duty to make sure he’s going into a situation that is safe. Do not be shy reminding them of a potential liability. If all else fails and they discharge him, please know that by law, you have 10 days to contact them and they have to take him back or find him placement in another facility. Therefore if he goes home and it’s a complete disaster, you’ve got an alternative. Call the administrator and tell them the facility placed him in an unsafe situation and that you are aware that you have a 10 day window. They don’t want trouble with the federal government. It may be ideal because it will prove to your mom that she is really not capable of handling him and then she’ll have some time to file for Medicaid and long term care. No matter what happens, I wish you all well. It’s sad but the medical community is not much help.

I think that you need to be involved in the discussions with the social/case worker. You can then help your mom by filtering out the BS. Reality of what they are saying. Bring a rough drawing of the house and how it is set up. May change their tune and open your mom's eyes. Sometimes a picture is worth a thousand words. They may be singing the Hospice at Home song.

I'm not sure about your state's policies, but, I recall recently when my dad was in Rehab and there was a man who was wheelchair bound down the hall. He could not walk and his wife wanted to take him home. However, the facility or the county social workers, (I'm not sure which.) would not allow his release. I don't know the details, but, they told her that the home was not accommodating to him. They had provided her with details on what was needed, around the clock care, etc There were apparently issues with care of this immobile man by senior lady, ramp problem, handicap accessibility, etc. This was over a month ago and I think he's still there!

You're right... she doesn't realize how hard caretaking will be on her or how hard the job will be. People in these situations tend to think they can "love their way" through the job. That since you love someone so much, you can handle the job no matter what. Like when people have newborns... you're tired, you're stressed and overwhelmed, but you love the baby so stinkin' much that you do it all, and probably will do it again in a few years!

I've found that when people insist on taking care of their LO at home despite the facts, they are seeing it as an all-or-nothing situation. Either take the LO home and nearly kill yourself caretaking, or put them in a facility, which in their mind is the same as throwing them away, giving up on them, or pushing them closer to death. It also may be a reminder of her own aging, and that's a scary feeling.

Maybe you can explain to mom that the truly loving thing she can do is making sure he gets the best care possible. It's more than she is physically able, so ultimately it's hurting them both rather than helping.

Another situation we ran into with a relative and getting a hospital bed and all, it was either her insurance or Medicare that required her to be at her house in order for it to be delivered! So they would NOT deliver it while she was in the hospital. Then we ran into the situation of her being released on a Friday evening, after the medical equip rental place had stopped deliveries, so they would not deliver the hospital bed until Monday. Crap like that. So relative had to sleep in her recliner because she could not get in and out of a regular bed.

Thank you Caseworkers!

"She thinks if she couldn't then why would the CASE WORKER be giving her information on how to obtain a power wheel chair and medical bed."

Because Case Workers pull this crap DAILY!
Their goal is send the patient HOME, HOME, HOME no matter what!
OMG. This is infuriating.

I wonder if the CW has been informed of the layout of their home.
I'd love for you to get on a 3-way call with your mom and CW and in a very naive and innocent-sounding tone ask, "What type of power wheelchair do we need to order that climbs stairs? Or should we get a regular wheelchair for going up and down the stairs? Should my mom lift the wheelchair from the front and drag it up the stairs or lean him back and pull him up the stairs?"

Wow, not a good scenario at ALL. If he is not making progress in rehab with PT, what makes your mom think SHE is going to be able to handle him at home, alone, with 3 flights of stairs and him being immobile? It makes no sense at all. I'm afraid she's going to have to actually take him home and see how unmanageable it truly IS before she can make the decision to place him in long term care. Some things have to be FELT before they can be understood, you know?

Best of luck!!