Regarding my other cousin
I am posting to get an idea of how much I should push. This is regarding y
my 85 year old cousin who had knee replacement surgery eight days ago on the other side of the country. She has now been in a rehab hospital for two days. For two days, she has not had any physical therapy. They are still "evaluating" her. She was told to stay in bed. She was given a bed pan for voiding. No one answers her call button.
Nevertheless, she got herself out of bed and into a wheelchair to use the bathroom.
I am concerned that the compression hose that she wore in the acute hospital are not being continued in the rehab hospital. I am concerned about blood clots.
She complained to a "concierge" person and finally did get an aide to help her. I suggested that she ask to speak with an ombudsman. Is this a good idea? She says the staff appears apathetic. She was a high level professional but is now in a weakened state due to pain. She does not have dementia, she is very sharp.
My question: should she speak with the ombudsman, if they have one?
Iris
Comments
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I have no professional or particular qualifications to answer this question, other than having spent time with a LO in Hospital/AL/MC/Rehab the past few years and observing how the places run.
That said, I would encourage your cousin to speak with ombuds and/or management. If it was me, I would want to know what is "proper protocol" (i.e., if there's some reason a PT eval legitimately takes X days), and what is just short-staffing or some other reason/excuse.
For aguments sake, if all the facilities in the region are severely short staffed, then I'd be reluctant to push hard or be angry at anyone. Because what can they do? Whereas if they're just breaching protocol due to apathy or mis-management, that's different.
If I was your cousin or yourself, I'd be polite, but push firmly for clarity on what is "right", and why it isn't happening. A next step might be to call the state regulatory agency.
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Ask to speak with the Patient Representative. Evaluation for a post op knee should be fairly straightforward.
Polite but firm inquiry
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Hi Iris.
Why is your cousin in a SNF/rehab for care after TKR? This isn't typical unless the person has had double TKR or is self-pay. My one aunt went after, but she had a stroke complication in recovery and was temporarily in a SNF awaiting transfer to a MCF.
Because of Medicare changes, most folks don't even get post-op PT for a single knee right away. Surgeons often have a program of at-home/self-directed PT they offer and only prescribe in-person PT if goals aren't being met. Could this be a situation where she's getting nursing care only and is expected to do her PT on her own? IME with dad doing PT/OT rehab in a SNF (with a CMS 5-star rating), the therapists don't work on Saturday or Sunday so there wouldn't be any therapy done on those days.
The bedpan use is odd; as a TKR patient myself, I was "encouraged" to walk to the bathroom within hours of my surgery and was expected to do so going forward.
Playing Devil's advocate, I wonder if she isn't recognizing her PT exercises as such. In the first week, they were pretty lame-- heel slides, butt clenching and foot flexing 3 times a day. Medication could be driving this. IN the first couple weeks, I was taking so many medications (I was up to around a dozen for a time, plus my usual Synthroid and lisinopril) that I thought buying 12 Dooney handbags on QVC made sense and I would have done it, but I couldn't find my American Express card.
I might call, but it's hard to know what's going on without being a regular presence.
HB
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Thank you, everyone who responded. I left NYC for Los Angeles forty years ago because I was dissatisfied with how things operated there; apparently not much has changed. There is good news and not so good news. Overall, my cousin is in better spirits and not discouraged and unhappy the way she was yesterday. Between her two nieces, her goddaughter and her friend, someone was with her from 9 am until 7 pm, so they were able to go get a nurse or aide when she needed attention.
She is still confined to the bed and still using a bedpan. Apparently the toilet in her private room was clogged up, also the sink faucet did not work. A worker came in but I couldn't tell if the faucet was fixed. How was she or the staff supposed to wash their hands?
She said she could not do her physical therapy exercises because she was in too much pain. The attending doctor of the rehab hospital wrote an order for more pain meds. I don't know if she is getting injections or oral pain meds. She was able to perform exercises for her upper body and core. She has some exercises to perform in bed which she was able to perform. I am getting the impression that her overall condition is more frail than I was aware of. I am surprised, because she was ambulatory with a cane before surgery and able to get out to church on her own. Now she is bedridden, over one week after knee surgery. This doesn't look good.
She still is not wearing compression hose to avoid blood clots. I am concerned because her sister died a few days after elective surgery from post-operative complications just a few years ago. I know each patient's situation is different. But this is on my mind. Tomorrow, I will try to speak with one of the nieces to see what they think about this situation. My cousin does not have dementia but she appears to be old and frail to me now. She is in no condition to make a fuss. All older patients definitely need an advocate in hospitals! I am very unhappy with this "care" but I am 3000 miles away.
Iris
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Iris. Your cousin is lucky to have you looking out for her. It must be so frustrating to be so far away.
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Thanks for the update...hopefully thing will continue to improve.
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I learned from the members here how bad it is to be a long distance butt-in-ski, so I don't want to be a pest. I talked with my cousin and also to one of her nieces, who is strongly advocating. The situation was still bad into this morning. My cousin went from 8 am until noon before she could get someone to take her to the bathroom. She was able to use the bedpan to void, but still needed to use a toilet. After four hours, she finally was taken to the common bathroom that was used for showering in order to use that toilet. Then an aide was available to help her clean up. Hygiene mission finally accomplished.
When the niece arrived about noon, she was able to get maintenance to unclog the toilet in her room and to replace the faucet. So her own bathroom is now functional.
My cousin was able to participate in physical therapy exercises today and has exercises to do in her room, in bed.
She has an intravenous line for I V acetaminophen, nothing stronger. She says she is getting enough pain relief now.
The niece is well aware of the low standard of care, and has spoken with a nursing director and a patient representative. They had considered calling her surgeon and asking to be relocated to another facility, but the nursing director and patient representative asked them not to leave,and to give the staff another chance. But my cousin did ask me to ask my brother for his recommendation, because he works in health care and might know of a better facility. So I asked him, and also asked him to visit over the weekend.
I am still not satisfied with the care, but the nieces are aware and advocating and they are ready to complain to the surgeon. Perhaps when my brother gets involved, things will be better. He works in health care, and he will know how to make sure she gets the treatment that she needs.
This hospital has good online reviews. My cousin told me that she believes that the ambulatory patients have no complaints, because they are able to get their basic needs met. But she and the other bed-bound patients are helpless. That doesn't speak well for a rehabilitation hospital.
I appreciate everyone's input. Thanks for sharing your own experiences!
Iris
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As you flesh this out, the care she is getting is clearly substandard. I mean, if a patient's toilet is clogged a bedside commode is used for the 8 hours <maximum> until a plumber fixes it assuming rooms are all full.
Does she have someone close enough to stay with her at home and look after her? Being confined to bed is the worst thing right now- 8 days out I was managing my own PT, showers (with a shower chair), up and down stairs. My mom, 20 my senior and with a husband with dementia to care for, was fully ambulatory with in 72 hours of discharge after a 2 day hospitalization. I had my surgery out-patient and was kind of a hot mess from the pain meds but could walk, climb stairs and manage self-care 72 hours out. I don't recall compression socks once discharged but I do see your concern. My favorite auntie had a clot and stroke recovering from TKR and never walked on her new knee.
HB
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States govern nursing homes & rehab facilities. Is she in NY? If so, here is who you can contact. If not, just search for who governs nursing homes & rehab facilities in her state. https://apps.health.ny.gov/surveyd8/nursing-home-complaint-form#:~:text=The%20New%20York%20State%20Department,and%2For%20Federal%20regulatory%20violation.
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The care is clearly substandard but there seems to be an undercurrent of substandard care in NYC that has not stopped. Forty years ago I worked for the Health Department, our furnace did not work and the indoor temperature dropped to fifty degrees! I wore my coat indoors all day. I sent the newborns and infants home and did the best I could to examine the older children through their winter coats. After that and other issues, I decided to move to California, where there were none of those sorts of substandard care problems.
My cousin seems to be doing better today. Het toilet was operational and she was able to walk with the walker to her own bathroom. No more bedpan. She had a physical therapy session in her room. She had some pain but was able to perform the exercises.
She says the weekend staff has been attentive to her. My brother visited her for two hours this morning, and he was able to observe the PT session. My cousin did not mention to him that she wanted to move at this time. She feels that she is making progress and is looking forward to being able to return home.
HB and SDiane, thank you for your input. All of my family worked either in corporate or civil service, and they know how to make official complaints. But it will be up to them if they want to go further. My cousin is satisfied now.
On a side note, her two nieces and her nephew went to a birthday dinner last night; today the birthday woman tested positive for Covid. She was not coughing yesterday but felt sick today. The nieces and nephew will have to isolate and won't be able to visit for a few days. One niece lives upstairs from her, if she has Covid, my cousin won't have a caregiver and may have to hire an agency caregiver. But they will figure something out.
Everyone eased my mind, I really appreciate your interest and support!
Iris
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The bedpan is back! She walked on her own to the toilet twice, but then felt too weak, so used the bedpan. She is not using a walker. She said she was told that she didn't need a walker. I told her it didn't make sense for a frail person on bed rest for two-three days to all of a sudden be fully ambulatory without aides. Suppose she had fallen on her new knee? She needed inpatient rehabilitation because she wasn't healing properly. She understood my concern.
Tomorrow, she and her nephew will talk with her doctor by telephone and come up with a plan for this week. Now, she is not interested in moving to another facility, she wants to continue PT at this facility, which apparently has good reviews for PT. Another niece, who is not on Covid isolation, came to attend her yesterday and today.
I made my concerns known. I hope she will be able to be discharged by the end of this week.
Iris
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Update: My cousin is still in rehab on best-rest, nineteen days post-op. She uses the walker in the physical therapy area but does not have a walker for her room. She says the attention and care is better than when she first arrived. My cousin is caregiver for her 93 year old brother who has Alzheimer's Disease. He lives in a regular senior apartment with caregivers in the daytime, his grandson is available at night. He fell and was taken to ER and was admitted for observation. Another grandchild was with him last night. Now, all of the younger generation will have to get together to attend to his hospital care. Tomorrow my cousin will have a status meeting for herself to assess her progress.
Iris
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Update: The situation with my cousin has become puzzling for me. At the weekly assessment with the physical therapist and the social worker two days ago, she was told that she was not making progress. This after bring told she was making progress the prior week. The plan was for her to be transferred to the rehab hospital that her orthopedist was affiliated with. They had emailed a photo of her swollen knee, and the orthopedist was not satisfied.
All along she had been forbidden to leave her bed because there was not a walker for her to use. (What rehab hospital does not have a walker for a patient?) But that day, a new walker was found for her. My cousin sounded very depressed that day.
The next day, she was upbeat, saying she was walking well with her walker in her room. She is no longer interested in transferring to her orthopedist's rehab hospital. She wants to stay where she is for another week. I asked about being told she was not making progress, now she says she is making progress.
This is too conflicting for me to follow. I wanted to help her because she is my cousin and I do have some medical knowledge. But this is just too much.
Also, regarding her brother who has AD and had been hospitalized after a fall, the doctor wanted to give him a feeding tube because he didn't interact with the staff. She told him he doesn't interact with strangers, and that he can eat on his own. The aides that care for him at his home know how to coax him to eat, and he is supplemented with plenty of Ensure. There is a lot going on over there, it is too much for me, so I will let the younger generation handle things.
Iris
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You understand completely, Victoria. It is exhausting! My cousin actually sounded chipper yesterday. She complained about a few things but I just listened. Since a holiday is coming up, I remembered a tactic that I've read about here and suggested to her. I suggested that she get her nieces to bring some cookies or doughnuts to her room to pass out to the staff. Essentially to bribe them for better service. She shot down that idea, she says she has different workers niw and they are doing okay. Okay by me, too. I wasn't upset.
Her brother with AD was ready to be discharged from his hospital (after his fall) but his regular weekend caregiver was unavailable, so I don't know what his disposition was as of last night. Again, I just listened.
Iris
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My cousin had no complaints today. Instead she talked about how the staff is preparing festivities for the residents for tomorrow, Labor Day. She also reminisced about the block party she held last year with her neighbors for Labor Day. Since things are now going so well, I can cut back on my calls to normal.
Iris
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Iris, I think you have been a priceless lifeline for your cousin(s) and other family members through this process. As frustrating as it has been with the ever evolving reports, you were able to put things in proper perspective for the onsite advocates, and be a crucial sounding board for your bedbound cousin at a very isolated, lonely, and painful time in her recovery. I believe that is more helpful and honestly healing, than you may have felt being such a distance away.
What a resource! And your professional plus personal connection must have provided such assurances, even while you gave non-judgemental suggestions which your LO could take, or leave. What a blessing!
You are so right, that especially elders - even without dementia - need a special advocate cadre to avoid the substandard care, apathy, and downright neglect or abuse that this health system relegates older people to. I have a story for later, to share with you all -- that is another example of exactly what you are talking about. I found that the squeaky wheel did get the grease (and probably saved my DH's life) but also it generated backlash and that is wrong, for subtle or overt retaliation to be allowed against complaining patients or families. It all really makes my blood boil as it just seems SO wrong. Just take care of people. Treat them as humanely and compassionately as possible. That should not be too much to ask!
Again, what a blessing you were in this situation. What a comfort, and secret weapon helping figure out what to do for safety and best outcomes.
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Butterfly Wings, I look forward to reading about your story. Isn't is depressing that we have to share stories of neglect and abuse? My cousin's story has a downturn. She had an appointment with her orthopedist yesterday, four weeks after the knee replacement. Apparently her knee was so bad that he operated again this morning, to remove scar tissue that had formed due to the knee being mostly immobile. I kept telling her that she should have been up and about and walking, and not in bed all the time. Immediately after the new operation she was able to walk without pain. She still had no pain when I spoke with her in the evening. She will remain in the acute hospital for a few days until her doctor is satisfied with her progress. I also had told her she should have been followed by an orthopedist, not a rehab doctor. Anyway, now she is on the mend. I am disgusted with her care.
Iris
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I'm so sorry for your cousin @Iris L.
That is a very disappointing outcome as each revision is likely to lead to a lesser outcome. For you it must be like watching a slow-motion car wreck. I do hope this goes smoothly.
I wonder if a CPM (continuous passive motion) machine would be appropriate in her situation. My mom used one for her knee done in FL and swears by them for pain and stiffness. Our mutual surgeon in PA prefers active movement where possible. Mom would say her FL outcome was much better because of that. Her first knee was done before the Medicare changes that shortened stays to outpatient status and effectively ended PT overseen by a human. My dad was deeper into his dementia for the second procedure, so she was not as compliant in doing her PT as she had been when the handsome young man showed up to oversee her PT.
Being followed by the surgeon doesn't always happen. My surgeon has 2 physician extenders he uses to manage care in the post op period. He's up front about it saying patients are very unhappy in the immediate aftermath of the surgery and that he doesn't see them unless there's a complication until about 3 months after the surgery. His NPs are lovely; empathetic and there if needed.
@ButterflyWings Amen to the need for diplomatic advocacy. Especially for those of Medicare age.
HB
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HB, I am confused because I am getting different stories. Now my cousin tells me that her orthopedist offered her the option of going home after spending two days in the hospital. But at the time, she told me that she wasn't healing, and needed to be transferred to the rehabilitation hospital. She says the rehab doctor saw her only twice a week and said she was healing nicely. Now she tells me that the rehab doctor told her to walk, but that the physical therapist said there was no walker available for her to use in her hospital room. This just doesn't make sense to me. This is why I was so shocked that she had to use a bedpan for so many days. A bedpan is for someone completely immobile, such as someone in traction. She did mention using a machine while in bed, that must be the continuous passive motion machine. I really don't know how often she used it. I am confused because the information I was hearing did not sound like standard medical procedure to me. She was not in pain yesterday, I hope she can reduce her pain meds and keep ambulating.
Your mom had both knees done? Is she walking without aids now?
Iris
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My mom did have both done. She was about 78 for the first and 80 for the second. She did really well-- she had a lot less trouble than I did at 61. It was humbling.
My mom doesn't currently use a walker, rollator or cane.
The information you're getting just seems so odd and worrisome. Could your cousin have developed some sort of delirium? My friend's husband was hospitalized most of July and was fully out-of-his-mind until she got him home and he transformed back into his smart funny self.
It's weird there's no walker. Mom's doing rehab for balance currently and the PTs have boatloads of them in their workspace. When both mom and I were discharged, her from the big teaching hospital and me from the smaller specialty hospital, we were both "given" a walker as part of our swag.
HB
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Iris I'm so sorry that I hadn't seen this posting until today. I wonder why? Its odd, it just appeared today.
Anyway, I've had multiple knee surgeries, 11 in total and I've had 5 total knee replacements. So I do know my way around the knee, sadly. Before anyone asks the left knee is still the first replacement and is fine, the right knee was a replacement and I've then had 3 total revisions on it.
Several things come to mind immediately - did your cousin chose the facility she is at? Or was it an insurance driven decision? Has the surgeon been in daily to see her? To check on her overall wellbeing? Is the surgeon / surgeon's office even aware of all that she's gone through?
I frankly can't even imagine how she's coped with the situation. I'm glad other's are there now, but still the situation is totally unacceptable, as you well know. The tricky part is HIPPA and whom your cousin has said can represent her.
Do you think she could go home and have home health? It seems like she's too weak for that, at this time. But she's not going to get her strength back in the facility she's at. This is an awful situation and I'm certain your very concerned. Have her contact her insurance daily and share about this facility - it might not help get her out of there, but maybe on one else will have to be put through this.
I'm going to look for this thread every time I sign on. I just don't understand why I've not seen it until today - it has to be the new format.
eagle
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HB, it's great that your mom has had good results from her two surgeries. You too! I don't think my cousin has delirium, she was able to keep the doctors from giving her 93 year old brother with Alzheimer's Disease a feeding tube after he fell and she was able to tell me details about other conversations, also her niece that I spoke to told me the same things.
Eagle, I'm glad you have had good results after so many knee surgeries. My cousin is now back at the original hospital with the original orthopedist. He removed some scar tissue, I suppose that might be considered a revision. She chose to go to the rehab hospital because it was recommended by someone she knew, and it was closer to her home. She has two nieces and a nephew who are in daily contact with visits. I even got my brother, who works in healthcare, to visit and to see what was going on. I had expressed my dissatisfaction several times and twice I told them directly that what I was hearing didn't make sense to me. I even suggested making a complaint to an outside authority but they didn't want to go that far. I don't know why they were so passive and accepting of that treatment. Nevertheless, she is now in the hospital under her orthopedist's care. I hope she will heal now.
Iris
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My cousin is finally getting good rehabilitation. She has transferred to the rehab hospital that is affiliated with her surgical hospital and her orthopedist. Her orthopedist is supervising her care. She says the care between this rehab and the prior one is like night and day. She has advanced to walking with a cane, and she has only a little pain. She expects to be released in three more days.
I thank everyone for their input in advising me in this situation!
Iris
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Great news, Iris!
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That is fantastic new Iris. I'm so glad for her and you. You've got to feel so much better about the situation.
eagle
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She's making more progress, today she walked outside on the sidewalk of the hospital, accompanied by the physical therapist, using only a cane! Whoo-whoo!
Iris
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Excellent news. She has to be so pleased.
eagle
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Commonly Used Abbreviations
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