Medical update on my ex
A bit of clarification on yesterday’s post …
Yes, the rehab hospital has all sorts of equipment that would allow them to help a person walk safely without a walker under supervision. But they say they will not use it on him – and they meant they would not use it for the entire duration of his stay, however long he is there (which will supposedly be about ten days or so, but maybe more). I told them I thought that since he’s never used a walker before and until his health crisis a few days ago he was walking without one, that they would at least try while he was there to get him walking without one again. They said they will not try. I asked them why, and they said it was because of his stooped posture and (slightly) shuffling gait. I said that both are from the Parkinson’s he’s had for five years and neither has ever stopped him from walking unaided. But they insisted that at their hospital those things mean they will never let him walk without a walker, even with them holding onto belts strapped around him, and walking right beside him.
So yesterday when I was visiting the rehab hospital I spoke to his case manager about it, and she said she’d talk to the therapists to see if something can be arranged. I hope so, because the lack of independence is something he finds extremely frustrating. And it’s not just that he is not allowed to walk without a walker. It’s that he’s not allowed to do much of anything on his own. He’s not allowed to stand from a sitting position, or stand from lying down, and if he does either a big alarm gets sets off. And what seems to me to be worst of all – and which I just discovered yesterday for the very first time – is that they tether his wheelchair to the bed with what amounts to a short leash, which means that even when I am visiting he and the wheelchair cannot be moved more than a few inches, even by me. For example, I cannot wheel him a few feet to look out the window. I cannot take him for a spin in the wheelchair down the hallway, or take him outside where there is some sort of garden I’ve yet to see.
That seems to me to be way too restrictive. I plan to have a discussion about it today with the case manager, and I want an answer that makes sense. The whole thing is depressing him (and me) and he is getting very frustrated and angry as well, which cannot possibly be helpful to anyone, or to his health and recovery.
By the way, this is a very highly rated facility. Beautiful physical plant, pretty decent food. But something is not right with the degree to which they are limiting his independence – even when he’s sitting in a wheelchair and I’m there.
Be sure to ask the case manager what the discharge goal is. And then consider whether his current regime will meet that goal. If the goal is “to be able to walk around the house with a walker,” then I guess you have to accept the current regime – or lobby for a slightly more “aggressive” goal. If the goal is “to be able to walk to the bathroom at home without a walker”, then obviously the regime will not get him there. Anyway, they have to be working toward *something*, which apparently they’re keeping secret.
The lawyers have taken over medical care at that facility. I would find a different one if possible.
This is scary, as it is likely that some of us will end up in a similar situation at some point. My limited experience is that once you get stuck into the medical machine, you have to fight to get out. Your life is taken over and you are just another bit of baggage on the conveyor belt.
The good news is;
You are there every day.
He will be out within 2 weeks.
He will be familiar with a walker if he feels the need occasionally
You will help him adapt when he is released.
I know several who resisted a walker but are now happy to have it nearby for occasional use.
My aunt looked after her husband during his final illness (prostate cancer which hobbled him for nearly three years). After it was over, she tells me she’s figured out the priorities of the medical system (and she ticked them off on her fingers): (1) the privacy of the doctor, (2) the reputation of the doctor, and (3) seeing to it the hospital doesn’t get sued. “The welfare of the patient clocks in there around fourth”. This was in 1983.
I cannot understand this policy. I hope you get some answers. He’s caged.
Your updates are very informative, to say the least.
I’m sure pullin’ for your ex and for you. See ya . . .
M J R
When my dad got sick 18 years ago he had surgery and then went to a rehab facility to recover (which he never did) and we picked the best rated/recommended one we could find and it wasn’t that great they restrained him to the bed because he got confused and angry at one of the nurses and this was really not OK with us so we moved him to another facility after a month that was close to where my mom lived and it wasn’t rated all that highly but there really was no difference in care with the other place. This experience plus what we went through with my mom 15 years later led me to believe that these ratings don’t say much really.
As you and others have written, that seems odd to me also, neo. Especially when you are with him.
When I had loved ones in similar facilities the staff always seemed very happy when there were visitors and were more than happy to let the visitors take them on wheelchair pushes or walks. You know him better than they ever will, and time spent with you is good for his recovery. Also, it gives them a break.
Odd.
Liability they’re scared.
Put a set of wire cutters in your purse before the next time you visit.
Give them to him when you are alone in the room with him.
Tell him to wait until you leave before using them on the tether.
One problem solved.
No matter how highly rated a facility is sometimes it’s the wrong one for a loved one. Keep pushing. Otherwise, they’ll let the clock run until Medicare stops paying then they’ll send him home on a walker or in a wheelchair. If they’re not going to do more to help him get more active, build strength and balance you might as well get him discharged to home care and visiting PT. You’re 100% right about your concerns. Hope you can talk some sense into them.
Get him out of there as soon as you can.
He did NOT have a stroke, right? He likely does NOT need anything they are doing.
He needs to get home and start healing.
Bone broth, MCT oil, good sleep, sunshine. Thirty minutes of sunbaths every day.
Neo, once again, it appears you are misplacing WAY too much trust in these people–exactly as you did with the mRNA shots, for how many years?
These people are NOT looking to help him–they are looking to minimize their liability. Which completely explains hte walker crap. They do NOT look to care for an individual any more. They are looking to hit their metrics.
Lawyers are now in charge in the medical system. So, just like the legal system NOT being about justice–the medical system is NOT about health.
Trust me–I AM a doctor. “Elderly frontline” to be exact. (Had a Harvard Med School appointment, which I know means something to you.) (I have the standardized test scores too–and I AM smarter than a big hunk of them. This is way before DIE admissions.)
I know how totally, completely F’d up this all is.
And it is really, really bad.
When my father was placed in re-hab and, after seeing the way he was treated there, I referred to it as the “NON-CARE” center. It was an awful experience for him. He would have done much better at home.
Is it possible to get him out of there? My father had an atypical Parkinson’s and was in and out of several different rehabs during the last years of his life. There were extreme differences among them — one just an ugly awful place, while another was really excellent, with a cheerful, optimistic tone. (Unfortunately it’s in New York State, nowhere near Boston, or I’d send you the name!) The others were in between. The ratings weren’t necessarily related to the actual experiences of the place. We did take him out of the ugly awful one early, despite their warnings of disaster, and he improved seemingly as soon as we got him out the door.
I worry (and I know you do, too!) that even just ten days of this kind of physical immobility and emotional frustration could be very hard to recover from, for someone of his age and condition. He might be better off at home, if there’s any possibility of hiring aides for a little while. Or maybe there’s another facility, if you could find one that would assure you up front that he wouldn’t receive this “treatment.”
A lawyer myself, I concur with the other commenters who’ve opined that this facility’s main concern is its own exposure to liability, with the actual rehabilitation of its clients a far distant second. I’m so sorry this is happening to your ex, and to you. It must be a huge source of anxiety and energy drain for you, not to mention awful for him.
Very odd Neo.
During each of my hospital stays including one with a fairly severe leg problem, my PT daughter who specialized in neurological/spinal injuries, was there to get me moving almost immediately, with her monitoring at first, but not interfering. Soon, I could walk solo as I chose. The staff was a little protective at first; but they soon let me go on my way. (I was not in Rehab facilities.)
My daughter’s mantra is ‘movement is medicine’.
The point is, what you describe certainly does not fit the current thinking in rehab. Are there local or state regulations that govern what they do at the rehab you are involved with?
I will join the chorus of get him out of there. My brother in law was sent to a highly rated rehab. At the hospital before the rehab he was walking the halls with a nice gait, no problems. At the rehab hospital the doctor in charge didn’t bother to read the files, thought he was a heart patient, and kept him pretty much as you describe. He never walked again, they messed up his electrolytes in some way and until his physician son in law intervened he was treated as if he was dying. Totally not what should happen in rehab. He lived another two years but could not walk or really take care of himself. If at all possible get ex-husband away from those people.
It sounds like the antithesis of rehabilitation, doesn’t it? Is there a specific reason to keep him there? If not, I would be shopping for a place more aligned with his objectives, one that can discuss and pull together a treatment protocol that is a better fit. They sound like a Medicaid mill, or an insurance-run operation.
Based on studies it’s standard operating procedure to get patients moving, if possible, soon after whatever happened.
Though how that might apply in this case, I wouldn’t know.
However, it might be time to get stuff in writing from the nice folks running the facility.
Hopefully this isn’t SRH
I have a rare autoimmune-related neurological condition, that manifests itself as muscle weakness, although it is not actually a muscle problem. I have had several relapses, in which I get very weak. Twice, I had to be carried into the emergency room, because I could not even stand up.
Something I learned right away is that you lose muscle strength very quickly when you are inactive, and it can take weeks of concerted effort to get it back. Now, I go to a gym three days a week, and have a few exercises I do at home between trips to the gym. If I go even for a week on vacation, I can tell the difference at the gym when I get home, even though I feel like I am pretty active on the vacation.
They should be working all his muscles as much as possible, and not just the ones he uses for walking. Upper body muscles are important for using a walker, or even a cane. His Parkinsons won’t get better, but if he loses muscle mass at the same time, it is a double whammy that is hard to come back from. Conversely, if he can improve his muscle strength, it can help compensate for the Parkinsons, at least to some degree.
When my wife broke her hip, she was in a rehab facility for eight days, to learn how to walk steps again. I was disappointed in the amount of actual rehab they did. When I asked if I could work with her myself, they said, “Um, sure, I suppose.” So, every day we worked together on walking.
They must be terrified of being sued if he falls. That overwhelms any concern for his recovery.
It’s hard to comment knowledgeably with the little information we have, but I will give you my experience with my wife.
She had a spinal infarct (stroke) that left her unable to walk. They put her in rehab in Reno for three weeks, where the treatment was very good. They had her in a wheelchair and doing strengthening exercises from very early in the program. She had home PT after the rehab, and the home therapist took one look at her and said
“it’s time for a walker.” She’s been using the walker now for about 10 years. She can’t walk without something to hang onto (walker or counter) and has lots of other issues, but at least she is out of the wheel chair.
What you describe sounds antediluvian. Can you get a second opinion about the use of a walker?
It is a toughie, God bless you Neo you will be rewarded, though I doubt you do it for the reward, it’s because it’s right.