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?
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.
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!
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.
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.
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!
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?
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.
Dman, I'm glad your mom is finally being looked after and is comfortable, way to go advocating for her!
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?
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 :)
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.
So I need to retract any statements I made earlier about recommending estate planning and elder law attorneys. The issue has shifted now if you're considering actionable events.
As to the social workers, I'd say they're not "all on the same page" to rely on an overworked expression.
I write this not in defense of anyone, but just to clarify the issues surrounding potential negligence.
1. I don't recall the original reason for the hospitalization, but if one was for anemia, I'm not sure it would have been medically justified to check for spinal fractures. In other words, Medicare likely wouldn't have reimbursed for the x-ray or and MRI to check for spinal fractures if nothing was mentioned or discussed of possible leg or spinal pain during that hospitalization.
2. Same issue would apply to the rehab facility. Absent indication of a spinal or fracture issue, there might not have been reason (i.e., medical reimbursement) to justify x-rays.
However, I won't deny that light bulbs and big question marks should have been raised when your mother expressed so much resistance to therapy.
A possible suggestion could have been to take her to one of the hospitals for out-patient x-rays, or to take her to an orthopedic physician for examination.
CM offers some good suggestions into this process. Unfortunately, hindsight is better than foresight.
An aside: you know what I hate the most? When you're at a hospital and the doctor finally comes in to speak to you and he/she arrives with an entire team of other doctors who just stand there in the background. It's intimidating and it causes unneeded tension, not to mention it's rude IMO.
And yet another social worker to deal with today, as the Medicaid screener person finally called me back at 11:45am on a Saturday, while I was driving in heavy traffic, natch. Do they have a knack for terrible timing or what? Must be a qualification for the job.
Many patients don't want to know the details of their illnesses, nor do their families. They just want to feel better. Not all patients and/or their families are willing to be diligent and/or do research to communicate on the medical level with the physician team.
It does take awhile for them to realize that you want to be informed of major issues, plans, etc. For the last several years, doctors turn directly to me to speak of Dad's medical issues, but I've also done my homework so I can communicate as much as possible on their level.
I think in my case working for attorneys predisposed me to be almost obsessive about gathering data, and it worked out to my benefit even though I can look back at some notes and not be able to make sense of what I wrote at the time.
Sometimes a way to establish a higher level of communication is to speak in medical terms. Medical people don't know immediately what level of medical knowledge you have or how much you're involved with your mother's care.
But it can quickly be established if you ask questions to get more details on everything, and if you take copious notes, do your research and then follow up.
And keep a notebook with you and do take those copious notes.
That was one reason why I gravitated out of any kind of law that dealt directly with injured people. They don't understand the legal issues, nor are they willing to learn. They wanted to talk about their pain, their discomfort, their anger. Sure, they're legitimate concerns. But I needed to know specific details about their accident - the issues that address liability. Attorneys can have the same problems with clients.
As to the team of doctors, don't be intimidated; generally they're residents. It's part of making rounds and it's not rude. It's one of the ways they learn to interact with patients from experienced doctors. I always saw it as a means to help them help me by addressing medical issues on as much of a level as possible as they did.
Why would you feel intimidated, tense and/or rudeness? They're not there to interrogate you but rather to get updates so see this as an opportunity to further your care of your mother by speaking with more people who are in a position to help.
Remember, they don't know you're driving in heavy traffic; if you don't want calls, turn your cell phone off. And actually for safety purposes you shouldn't be on your phone while driving anyway.
On a more positive note, the treatment Mom has received so far (a steroid treatment to reduce swelling in the affected area) seems to have done a bit of good as she was able to move her legs upon request today for the first time in at least three-plus weeks. Not a lot of movement, but movement nonetheless. She was a bit sharper than usual today as well, which was nice to see too. So far I'm pleased with her current doctors and her overall care, although I still feel so bad about all the time that was wasted prior to this. She still has further tests and consultation scheduled but right now any progress at all is a positive IMO. The best days are the ones with hope as opposed to the endless drudgery, bad news and constant mazes of red tape. While it was a small thing and not a reason for celebration or anything, it was really heartening to see. That lady still has some fight in her, it made my whole day!
What a long, long week. Visiting tomorrow early in the day then concentrating on completing household tasks to free up time during the week, time I'll undoubtedly need. A normal day at home doing normal everyday things will do me some good IMO. The more stressed I get, the more angry I get and before you know it I'm griping about everything. I will most definitely keep you awesome people posted, thanks to everyone following my lengthy thread, you've all been a real "port in a storm" through these trying days!
If it is blood at the fracture site, maybe that will resolve with the steroid tx. or on it's own. Have a better night.
It's normal I think to be suspicious, and dare I say, frustrated? I'm guessing that probably most of those here have gone through the intense, or rather "acute" episodes inbetween more calm and less traumatic periods.
It is and perhaps should be a learning experience, which you can leverage later to act as a guideline if other unusual events occur.
I wouldn't necessarily suggest that your concern is "natural cynicism", but if you think it is, ask yourself (at some calm moment like a Sunday morning) how it can work FOR you, by thinking like the medical people do, putting yourself in their place, and trying to envision handling many patients a day with multiple problems. But more importantly, how can you make it work for your mother?
But it is wonderful to read that your mother and you both had a better day and that the steroids are helping alleviate the pain - WONDERFUL!! - Going forward now, not quite full speed ahead but pointed in the right direction!
And do spend today working or just "putzing" around the house and relaxing, preparing for a possibly challenging but also rewarding week as your mother recovers and returns to her previous levels of stability.
Visiting later, then back to the Medicaid paper chase. Almost there, but still need a few documents. I really want to resolve that too so I can maybe get back to some semblance of a "normal" life again. The toughest jobs I've ever held were cakewalks next to this, I can tell you that. Thanks to all for the well-wishes!!!
Make sure that the discharge folks are working on identifying a facility that will take mom as "Medicaid Pending".
I can't speak intelligently to the specific procedures or details, but I recall reading about various new techniques, including one using a type of medical cement to encase and stabilize the fractures. Again, I didn't pay much attention to the details as the whole issue unsettled me, so don't rely on my "interpretation", but do check on the availability of alternate options.