So she's in her second week of rehab. Every time I visit she just wants to "lie down". Plus she has a completely unbelievable fear of falling, I mean she's comfortably in bed and gripping the railings like she's on a boat being tossed at sea. She says there's no vertigo or dizziness there either. Today I merely tried to raise the bed a little so she could eat properly and see me and she starts carrying on like it's the worst torture imaginable.
So I was talking to the therapist and she tells me that on Friday they had to change the mattress so there was no other option but to get her in the wheelchair for a while. This has been a goal since day one. She tells me that after a brief struggle she did get in the chair and remained there for a few hours with no issues. I was astonished as Mom never mentioned it.
So today I'm there and we figure let's go for it again. They sit her up and immediately the death grip begins. This little old lady who's always too weak to move was fighting off three people and resisting with everything she had. There was no risk whatsoever of falling. Eventually the therapist had to give up and i could see the annoyance there, as I felt it too.
I'm wondering if maybe it's me. When I'm there she never stops with the hapless routine and the fear of falling, then I hear that while I wasn't she's actually doing something. Perhaps i should skip a few days and see if it helps?
In a young fit patient, you notice a symptom, you immediately get busy with diagnostics and treatment. But if you do that when you're dealing with a 1920s or 1930s model you risk doing more harm than good, and an experienced doctor will proceed with caution. Many patients of this vintage will have complex co-morbidities - correct one thing and you knock four others out of kilter. It's rarely straightforward.
The terrible communication skills and communication processes that are, sadly, the norm don't help. But sometimes (I don't know if this is true for your mother, DMB) when what we see happening is Nix, what is actually happening is more like "we're thinking."
I for one would prefer it if they thought aloud, so that at least you can see their workings. How do you know if the young physician at the end of your mother's bed is standing and staring or standing and thinking if he doesn't speak? - and all the more so if instead he's sitting his office and going over her charts so that you can't even observe the process.
So ask lots of questions, but do be careful to make them constructive ones or you'll send them all into hiding. And bear in mind that they may not have any attractive or obvious treatment options. I know how frustrating and stressful it is, I really feel for you.
I'm going to give it a shot nevertheless, as I feel we were put through suffering that wasn't necessary, but whether there's a case there I don't know. I really should have studied harder and become some sort of super-lawyer/doctor :)
That said, so far this week I've dealt with FOUR different social workers. The first one insisted I had to take Mom home at the end of the week which would have been a ruinous move at best. The second one was somberly discussing "discharge day" and what I'd do if the tests (which hadn't even been done at that point) came back negative (which they did not). Today the third one was pressing about nursing homes while I was anxiously waiting (for three hours) to speak to my mother's doctors about her care and prognosis. And the fourth one wants me to come in asap regarding the Medicaid process but doesn't have an appointment available until Thursday (and she's located at the opposite end of the county from Mom's current hospital). They could stand to be a bit more tactful is what I suppose I'm saying here (eyeroll). Perhaps I'm just seeing things through stress-colored lenses here but come on, let me digest breakfast before you force-feed me brunch, lunch and dinner, you know?
Dman, I'm glad your mom is finally being looked after and is comfortable, way to go advocating for her!
As far as the back injury is concerned, I have no idea as to the wheres and whens. She may have been injured for a while and finally broke down, I did not see her fall nor did she complain about or mention one. Not to say it didn't happen but again, I don't have any evidence that suggests it did.
The factor that peturbs me the most is that IMO her loss of leg function could have been addressed during one of her first two hospital stays and/or during her stint in rehab. I kept stressing that it was a recent development and again, IMO it wasn't addressed as a priority. Perhaps it could have been identified sooner, which would have saved her (and I) a lot of anguish. I think the folks at the rehab could have been more proactive about requesting further tests as it was an unusual and debilitating situation and IMO they focused a bit too much on the mental aspect of it before eliminating other possibilities. They didn't recommend these recent tests until after they decided to discharge her and I made a stink about it. Then the tests revealed the injury, an injury that could have been detected weeks ago which could have prevented three weeks of wasted time and misery. I can't say whether any of this was "negligent" in the legal sense of the word but it does bother me that they considered discharging her based on criteria that didn't make her well being a priority. If I had brought her home today who knows how much more damage might have been done?
Not going to get all "political" about it but it certainly is eye-opening when you see firsthand how everything constantly revolves around issues that do not place the patient's needs above everything else, that's for sure. Just today I explained to the social worker that yes, the insurance end of it is very important and can't be minimized but right now I am focused on alleviating Mom's pain and suffering and perhaps if she hadn't been given the "bum's rush" so quickly the first three times around we might not be in the position we are right now.
1. Given the symptoms, presentation, etc., what SHOULD the hospital staff have done? Order an MRI? X-ray of the lumbar spine? Is there anything else that could have been done to diagnose the fractured vertebrae and tumor?
2. What then SHOULD have been the next course of action?
3. Is there any way to tell whether the fracture was in existence at either hospital stay? (i.e., it could have occurred at the rehab facility).
4. What is the standard of care in similar circumstances for your area?
Spoke to a few people at the rehab while I was there today, didn't say a lot as I don't want to make any statements I could regret later. But I certainly wish they'd have been more aggressive re: further tests, it's sad that it took my complaints about discharging her for them to take action. It all feels like a big missed opportunity now in retrospect. It's unfortunate how so much of the medical business is centered around insurance issues and "assets", you know?
I'll certainly keep you posted, hopefully we can get her to a point where she's at least comfortable again. Thanks again all!
You have been a real trooper, dmanbro.
Trust yourself, and find better care for Mom, she is immediately transferred to Inpatient Hospital, acute care, right. Hopeful that you are aggressive enough to get her admitted to a better hospital. Have you explored the larger teaching
hospitals? Would it help to call Medicare and ask to be referred to a better place?
Be brave, be proactive, do not doubt that this experience has been malpractice on the part of rehab and the treating PT's. So sorry that this diagnosis is so distressing. You are not medical personnel so there is no way you would have known. You tried your best.
You might want to consider getting a second opinion on treatment and/or surgery from a spinal specialist at one of the big, well respected hospitals.
Sometimes I read the publications the local big hospital chains publish; there are recently developed techniques for dealing with spinal issues that might be available.
Don't feel badly about not knowing - it can happen to anyone. It happened to us, but like you, we pressed for answers and got them. Just be thankful that you had the foresight and perseverance to force the issue and find out what's really going on.
Mid-course correction time now - move forward and don't look back.
And not even two hours after getting this news ANOTHER social worker is in my ear re: Medicaid and LT care. Plus I had to visit the rehab to find her stuff (they misplaced it but I found it) and resolve a billing issue. I'll keep you all posted, thanks for the well wishes!
About the guilt. I know. Tried to get my mom to do PT on a broken hip for a week before the PT said "we need a new xray". You're not a doctor and you don't have xray vision. And folks with dementia can't localize pain (at least my mom can't ). Not your fault.
Something to think about. Ask for a psychiatric consult while she's there if they haven't ordered one already. Insist. Jump up and down. The behavioral stuff that you described you should show to her doctors so they get a sense of what her mental state has been like.
And yes, you have to repeat this story to EVERYONE! Oy vey, I remember the feeling.
One thing that's REALLY annoying is how I have to run down Mom's recent medical adventures over and over again, even thought this hospital is part of the same organization as the one she visited in June and July! Don't they write this stuff down?
Spoke to the latest social worker today, she's nice and all but she's ALREADY banging the "if we don't find anything we have to discharge her" drum. I (tactfully and politely) informed her uh-uh, no, Mom isn't coming home until I have an answer of some kind...period. Not being able to move your legs, being bent over in an "L" shape and crying out in panicky pain every time a person sits up is not "part of the normal aging process". I want a diagnosis, a pain management plan, a long-term rehab/care plan, a plan period aside from "oh well, bring her home and figure it out".
Then there's her rehab center. Today THAT social worker was supposed to call me and let me know regarding the hospital bed they're sending just in case Mom does end up home anytime soon. I waited all day, tried him in the afternoon, left a VM and nada. It's supposed to be delivered tomorrow "between 9-5" aka cable company hours. Aside from the, she's paid through the seventh and she isn't there today and probably won't be tomorrow and possibly Friday, so they either owe her cash or days and I suspect they won't want to part with the cash.