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My mother has hip dislocation that cannot be repaired in surgery - they don't know if she would survive it. Before this she was walking with a walker, and we are getting conflicting info from health care people about whether to get her a lift and get her into a chair or not. Anyone else with this situation? I don't want to make the situation worse, but she has been in bed for over a month and is too weak to sit up by herself, but hates having to lie there all day. Hospitalist told us that she has conditions that she doesn't even have (according to Hospice) - so we are getting a bit distrustful with medical establishment. She doesn't seem to be in much pain - just don't want to make it worse. Thanks

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I'm sure she feels she is just lying in bed waiting to die, and that's no way to be. I think I would ask whether she needs a x-ray to see how well the fracture has mended and armed with that information ask for an OT and PT evaluation to see how they recommend getting her out of that bed and into a wheelchair.
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Well the problem we're having is that Hospice is against any physical therapy and won't get an X-ray done. It's like they are just waiting for her to pass away from heart attack or stroke.
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Takincare Oct 2019
🤬🤯😤
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😠 Hospice is supposed to be about improving quality of life, I think they need a stern reminder of that! If they won't even attempt to do anything to get her up then you may have to think hard about dismissing them temporarily.
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I had a similar issue re my father. Even got the hospital consultant to say it was better for him to be sat in a chair, psychologically as well as physically. The nurses in the home lied - got him to take medication then wouldn’t follow through with moving him. I could write a book on the terrible issues in just that one day - Christmas Day 2017.
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Takincare Oct 2019
Too much like work don't you know
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Did the doctors physically manipulate the joint back into place or is it still dislocated? I understand not being a candidate for surgery because of not surviving anesthesia, same issue here with MIL. They could give her a mild sedative and anesthetic in the area to be manipulated avoiding anesthesia due to heart and get hip back into place. Problem is that after a month damage may have been done to her actual joint, eg deterioration, nerve damage, she may need to wear a hip brace for support afterwards. Going thru broken upper arm with MIL where arm meets ball of shoulder joint. She fell in store when with older SIL, normally this would involve surgery to correct it. Have to let it heal as is, immobilize arm, finally seeing some healing. Hospice sent PT to my home for balance/ walking with cane issues and now receiving OT for passive therapy for her arm to get arm muscles in shape for when she will be able to do more intensive weight bearing exercises. I have never been turned down by them when seeking therapy but then again she has an awesome nurse who advocates for her and when I asked for help it was explained eg, fall risk, shuffling instead of picking feet up, range of motion, quality of life type of arguments. They also know that I have busted my rear to get MIL to the point she is now, no more fluid in lungs or extremities, healthy meals with cheat days (gotta have pizza), medication management, physician visits (give them a copy of all blood work results for their files too), and walks to keep her moving. Your situation is much worse due to hip injury. Is there a teaching hospital nearby that their head of ortho may have a suggestion for this situation? They are usually the first ones to know of new procedures and techniques that is not available or common knowledge to the rest of the medical community. Just an idea.
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cwillie Oct 2019
Good points about the possibility of repair without general anesthesia, I knew a man who had his artificial hip repaired using nothing more than an epidural.
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What happened to her is that she apparently slipped in her bedroom the first time and I took her to the ER and they were able to get it back in. Told her that she had just dodged a bullet that time. Well about 14 days later, she slid off her low bed and in the process of trying to wiggle around and pull herself up, she dislocated the same hip. The leg is shorter and they said the hip replacement done years ago has failed, due to bone loss I guess. This time they took her back to the operating room and put her under - got it back in, but the hospice nurse said, when she was admitted to their facility ( for respite) that she thought it was back out. It has been a mess - the hospitalist said that she had double pneumonia ( hospice says lungs clear) and he also told us that she had a bowel blockage ( she messed her diaper very next day, so nurse said ' obviously not!')
Her physical therapist that she liked said - 'well with hospice, they will kick me out.' They do not have physical therapists working with them, but if Medicare will pay, why not call someone in? My mother did try to do all the exercises they told her before the last hospital visit.
We're just confused about everything. Guessing one reason for hospice is to get help with bathing, nurse care etc. The doctors knew I was trying to do everything by myself. She is now so weak that she cannot sit up in bed, so we were told that a lift could be brought in so she could at least sit up. Can't they bring x ray machines to your home that are portable? Thought I saw an ad on internet about it.
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People on hospice care do use lifts (I think that hospice provides them), perhaps the only way to determine whether she could tolerate it would be to try... the problem there may be that you don't have anything appropriate to transfer her in to, if she can't even sit up in bed she needs a specialized chair that would hold her upright as well as not put pressure on that hip. Perhaps a better solution is to work with what you have, can you at least crank the bed into a sitting position? Can you move the bed into a different room so she doesn't feel shut away? Her weakness is a real barrier, if you feel she could recover some strength with exercise and she would be willing to put in the effort you don't need a physical therapist, all the information you need is on the web at your fingertips.
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cetude Oct 2019
Hoyer lifts would be very painful for a person with a dislocated hip--unless she tolerates being turned.
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If you look up Medicare guidelines for hospice and dementia, it doesn’t sound like she qualifies. They are quite strict and one of them being the loss of communication. From what you’ve written, I suspect this hospice may not be on the up and up. They have to justify to Medicare reason for admitting and keeping her in hospice. If it were me, I’d discharge hospice you're using. Get her to an orthopedist and get a second opinion. Her primary doctor can order a mobile hip X-ray. This is done all the time in nursing homes. I used to be an X-ray tech and taking portable films is not difficult. It’s done all the time in the hospital and surgical setting. And yes, they can do an epidural with sedation for hip surgery, even for a hip replacement. So a general anesthetic is not necessary.
Your mom has been in bed so long she is deconditioned and I’m surprised she doesn’t have pneumonia. Which you say she does by the doctor but not by hospice. So did she have a chest X-ray to confirm it? Was it treated? Missing information on this.
she needs a medical evaluation!
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Medical personnel have a very non-nonchalant attitude toward those words "Hospice" and "DNR" which may be a reason why they did not opt for surgery. I wonder what they would have said if she were full code and not on hospice--her survival would be much higher.

There are risks with ALL surgery--but how long do you think she can survive without the surgery? You need to get with your family and discuss a plan of care. Consider this: It must be a special kind of horror getting her to move her bowels or clean her. If she is sitting on her bum all day you know she will get bed sores that can grow so large the bone will be exposed. If she has a urinary catheter those are very high risk for UTIs. Stool often gets into the vaginal area and that tube will introduce fecal material directly in her bladder. Advanced stages of bedsores can get infected with fecal material and cause blood infection and death.

Revoking hospice is as easy as signing a piece of paper. You can reinstate her anytime without a doctor's order IF she was on hospice prior; in other words, you can change your mind again and simply put her back on it. I fired two hospices before I found a good one when mom was alive. I could not be happier with the 3rd one. Nothing but the best for MY mom!

Hospice does NOT mean withholding medical treatment. DO NOT EVER let hospice dictate your mum's care. YOU are in control. Not them. If your mom can still answer questions, ASK HER what she wants! Even people with very advanced Alzheimer's has their moments of clarity! Now Hospice won't pay for PEG tubes. I revoked hospice when I had mom's peg tube put in and her regular Medicare paid for it. Once discharged I got her put BACK on hospice so they supplied all the feedings including pump. The hospital social worker organized all of that. It was so easy. The hospice you choose also has social workers to help you. Mom did very well after the PEG tube; her Alzheimer's was so advanced she was not even aware she had a PEG tube; she never attempted to pull it out. She did great with it. I will always feel good mom did not have to die of dehydration which can take weeks. That PEG tube gave her considerable comfort. An irony mom did not die of her Alzheimer's disease. She did great with the PEG tube. What killed mom was liver cancer. I had no idea she had that. So even if she were alert and oriented, walkie-talkie she would have died of the same thing!

Overall I would avoid hospice like the plague unless she were truly actively dying. Please remember do NOT allow hospice dictate your mom's care. That should be up to the family and/or patient when able.
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I have had this myself. After 8 months in bed and major depression Inwent to an OSTEOPATHIC MANIPULATION doctor. She manually corrected my hip. In just a few minutes I could walk again! After so much time had passed my hip kept going out so I returned once a week, then twice a month and eventually from once a month to being 80%repaired.
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Ask for an orthopedic referral. She shouldn't have to suffer even with hospice or dementia.
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I have read through your responses here and I’m unclear, is your mom living at home with you and on home hospice or is she in a Hospice facility? Was she living alone before the initial dislocation or in an assisted living or nursing home? I’m trying to figure out where the Hospitalist came into play, it doesn’t sound like they are part of the Hospice team given they aren’t in agreement. Part of the difficulty here in giving advice is that the system works a bit differently depending on where you are, the Hospice provider you work with and whether it’s home hospice, home hospice in a nursing home or an actual Hospice facility I think. I agree with others that you can’t be afraid to advocate for your mom, don’t take every medical providers response as correct and final, just like any other field there are those that will do the bear minimum and those that will go way out of their way, those that are so overworked they can nearly keep their heads above water and those who manage their time and stress better.

my point is there are all sorts of reasons a provider might be good or bad even on a given day but just because they say they are right doesn’t mean they are for this specific situation. It must be hard day after day to work with a patient population who isn’t getting better and a special kind of person who can take the most discouraging job in health care and make it rewarding they don’t loose their patients to life, they get close to patients and families knowing they will watch them pass. I’m not excusing poor care by Hospice workers, just the opposite in fact. In your case it sounds like you are either in an area or a situation where Hospice is a bad word in the medical community rather than a welcome specialty and both sides have probably contributed to that problem so you may need to work even harder as her advocate to get what you and she need from each, be the bridge. I would first read what you can and talk to as many different people as you can about how hospice works in your area, it may be as simple as changing hospice providers. It does really baffle and concern me though that her regular primary provider doesn’t seem to want to continue her care.

A hospitalist generally acts as the “primary” in the hospital, rehab or NH and they can be very hit or miss but continuing with her regular primary is often doable and they should know how to set this up, advise you in what the different paths of care require and provide so you can make a decision as to what is best. How long was she this PC’s patient and was it a good relationship? Does this provider have a large geriatric patient base or do they usually pass their patients off to a geriatric specialist as they have more age related problems? it just doesn’t sound to me like your moms passing is so imminent that getting her out of bed isn’t part of making her comfortable and improving her quality of life nor does it sound like anyone has exhausted the possibilities for making that happen so if I were you I would start making that clear to every provider while being open to hearing the reasons for their opinion you may find forcing everyone into the same page will help a lot.

Hips in my experience aren’t easy especially in the elderly. A dislocated hip is typically very painful and it can get a little tricky with a dementia/Alzheimer patient because they often express pain differently, experience pain differently making it easy to attribute the signs as part of the dementia rather than pain. The other problem is the longer (and more often) any joint is left out of socket the more the muscles, tendons and ligaments that hold them in place get stretched out and the less it hurts so I’m really not clear as to why they wouldn’t do an X-ray to see if the hip is out of joint or not, how can they know wether or not there is something they can do to help her if they don’t know what the problem is? Maybe she needs to go back to ER with possible dislocation to get it done.
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LivingSouth Oct 2019
She was in the hospital first with the dislocated hip and they got it back in and sent her home the next day. I had been concerned that when she was eating, not long after the procedure, that she had gotten aspiration pneumonia. She was readmitted with seizures ( she had them off and on for about two years) and she was having trouble sitting up. The hospitalist - not the orthopedic doctor - said that the hip was already out of joint. We never saw her primary care doc - just this hospitalist. He said - 'oh my mother was the same. She has double pneumonia, bowel obstruction, dementia, and now the hip problem. She won't be around much longer.' Said put her in Hospice. Honestly everyone in the family upset because we thought she might pass away in a few days by the way he was acting. So they sent her straight to hospice - but her condition not only didn't get worse - she seemed to be doing better. She says she has no pain - only on Tylenol 2 times a day. Doesn't hurt her to press on her hip. Dementia is about the same. They say lungs sound clear. They set up home hospice care ( Medicare won't pay for home aides and hospice will provide them) Nurse says, 'all I can tell you about her hip is from the notes I have from Hospice when she was admitted.' Her rear on that side has a large dent in the muscle, so I would say it probably is out of place. My dad thinks she should have had surgery.
If this is what you get when you sign DNR, I and other family members say we might want to reconsider it for ourselves when it's brought up! Don't want to be unrealistic, but not willing to just roll over and die either.
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The situation is certainly complicated; and you do seem to be getting conflicting advice from medical personnel who are more concerned with themselves than with your mother and you.

Check out the possibility of having a physiotherapist or masseur exercise her legs and arms. My wife is eight years into Alzheimer's and has been confined to bed at home for the past year. However, regular massages are helping her; and she is moving her legs and exercising on her own as well. You would need to find out what exercises are good in principle or should be avoided because of the hip dislocation.

Take care
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LivingSouth Oct 2019
I know that some hospice program will cover massage so this is a good idea - will check with them about it. I can tell that the muscle tone is her legs is getting thinner.
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Call around to find an orthopedic doctor to get another opinion or options for her. If you have to pay for the medical transport, do it, so you can get more information. When you make appointment, be sure to let them know she is bed ridden and requires medical transport, get all xrays/mri/etc tests already done sent to doctor well in advance of the appointment, and request if they need additional images it will need to be done earlier/same day as appointment in order to keep transport and movement to a minimum. It is very possible the tests already completed could be reviewed by an ortho doctor to get second opinion or referral to the best doctor for the job.

Have you talked to her own doctor about conditions being noted that do not exist? Or to the person who said she has these conditions? -- My mom's doctor noted she probably had small stroke in her chart one time based on repeated trips to ER for slurred speech, anxiety, strange behavior. I figured out the problem myself being a double dose of diabetes meds being prescribed after a short hospital stay. I had even called them to ask why it was doubled and told dr changed the order based on sugar levels at hospital...so I let her take the meds as ordered. I had no idea what low levels did to a person and not one time did the dr or the ER staff identify the problem. It took me nearly a year to figure it out. To this day, her doctor still has ischemic stroke on her list of problems (without any testing, only based on her complaints). I tell them at each visit it never happened and make them type it in the office visit notes.
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LivingSouth Oct 2019
Yes they put on my mother's record that she has AFib. She kept taking OTC sleeping pills, expecting them to work immediately, and when they didn't she would pop another one in. She ended up in ER with irregular heartbeat. After having her on blood thinners for a while, they finally agreed to take her off and see what happened. Nothing. No missed beats, so doctor said ' well it is in remission.' Sure! I'm still trying to get some response from her primary care doctor - it's like when hospice takes over, everyone runs scared and refuses to comment - and I thought you could keep your primary doctor. Apparently the doctors don't want to offend the hospitalists ( which I have a low opinion of, so far) The orthopedic doc who put her hip back in never returned phone calls at all.
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I agree get another doctor. In meantime I would get a invacare get -you-up- lift. It’s easier than a hoyer with a sling to go around the back of the patient. It is great to transfer the patient and stand them up. Medicare covers it.
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It is so individual- but yes, get an orthopedic surgeon to assess. My Mom fractured her hip last year at 99 1/2 yrs old. She is DNR and was then. First surgeon said no. Second said "if she doesn't have surgery, she will never walk. Then she might die from pneumonia from being bedridden." I opted for surgery, he operated, she survived it all. She is only 85 lbs though which also made a difference in rehab.- not so much weight to carry. Wishing you the best with whatever happens. I know it is a TOUGH decision!
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If she’s on Hospice, then they’re not going to repair/replace anything. If you want to fix it, then temporarily get her off Hospice. Go to hip surgeon & get opine . She can rehab in SNF after. They can build her up before any procedure. Otherwise, if nothing’s done, wherever she is ..they need to get hoyer lift to go from bed to wheelchair & commode. Good luck...hugs 🤗
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Sounds like torture. But there are many people in wheelchairs who lead productive, interesting lives. Are there any videos you can play for her of such people? Look on YouTube. Try to get her to do upper-body exercises. Post photos of people in wheelchairs who are smiling and active. Ask her what advice she would give to paraplegics and children who have had amputations. She can still have a life, even if it is not the one she would have chosen.
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ShenaD Oct 2019
I know when my hip was dislocated I couldn't sit. I could crawl while dragging legs behind me or lay in bed. That was it
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Ok, she needs PT...1st to rebuild upper body strength to help support herself,...2nd standard post hip replacement exercises to tighten and strengthen muscles that hold hip in place. Unlike the knee, even if she had surgery, it is muscle and ligaments that hold joint together.
Maybe a sports medicine doctor can manipulate it into place. Any Orthopedic Dept of online ( Mayo Clinic) has booklet or video of exercises for after hip replacement.

They Need to pop it back in place. She Now needs to overcome a month of atrophy to get her able to stand.

NOTE: DO NOT let her lean forward so angle of body to thigh is over 90 degrees..a right angle. So chair need to be high enough that her knees are not above her butt.
She Must Not Lean forward, past 90 degrees, to be lifted or moved. She needs to shift to edge of the chair so back is straight, keep the 90 degrees!

At that point you can look at walking using a walker.. staying inside the walker. That builds those muscles.

She may never get strong enough to move like she did before, but lack of movement is major risk for a clot. Also poor circulation... including oxygen to the brain! No wonder she is depressed!

Work on strength. Upper body and slide leg & foot to edge of bed and back. Pumping her feet to improve blood flow & prevent clots!

All will improve her quality of life. Make sure she gets her pain meds 1 hour before exercises/PT!
You are right! Make it happen!
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LivingSouth Oct 2019
Tried the other day to see if she could sit up in bed and she claimed she could, but never did. Hospice is again saying it is out of place, but I can press hard on the joint and she says she feels no pain - don't understand that, as I would be jumping out of the bed with dislocation! She has an air mattress, so I guess that helps some with blood clots. They did tell us that we can take her out of hospice if we want to do an xray - I'm just afraid I won't get home help because I'm having a terrible time just getting her turned ( and on the GOOD hip) but she will turn over on the bad hip. ?? The orthopedist who put hip back in does not know if she could survive surgery, so the office will not even return phone calls. I feel like I'm just caught in the middle here....I supposed if the cost was not sky high, we could pay out of pocket for a portable xray, just running out of ideas.
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If I were you, I would contact the orthopedist involved if there is one. He/she would be the best person to advise you on thr use of lifts as well as transfer status. If there isn't one involved, then start with her primary care physician. If she is allowed to transfer, maybe some sort of recliner would be in order.
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My mother has been taking CBD oil tincture every day religiously for several months now. Her inflammation has disappeared, and her blood pressure has dropped from 175, 180, 200 over 100...(we were in and out of hospitals for months because of her blood pressure)...to now being 120/80 almost consistently since she started the CBD oil. She does still take her BP medicine, which she was taking 4 times a day prior to CBD, but NOW only needs to take her meds ONCE every 12 hours. She also use to have to take Nitro often as her BP would stay too high for too long! The CBD has not only dropped her BP to normal, it has also nearly cured her constant inflammation - swollen legs, and arthritis in her hands! I think CBD would help your mother with her hip discomfort and would greatly improve help her overall health! I've done the research - researched for months actually - for the best place, organic, non-gmo, and affordable place to buy CBD. I found this place which has been a godsend. We buy the 1000mg FULL SPECTRUM CBD oil. The best part is too is that they offer reward cash back on future purchases, so the price is extremely affordable! She told me she cannot believe the improvement in her body and ailments since she's been taking it. She actually worries when she runs low because her BP rises dangerously when she doesn't take it and her legs swell up almost immediately, so I always make sure now to have another new bottle for her when she runs out. It's truly changed her life!
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LivingSouth Oct 2019
I have been starting her on the CBD oil - seems like every street corner here has it now, so hard to know which brand is good, but yours sounds legitimate. Thanks
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Sounds like you're not getting a straight answer. Try to set up a meeting with the Hospitalist.
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Is she in Hospice? That would affect the plan of care, greatly.
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I’m so sorry your mom is experiencing this situation. I hope she finds relief soon. Blessings to your family. Hugs.

Get another opinion.
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LivingSouth Oct 2019
Thank you :)
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As others said, if hospice was ordered for the hip issue, that will get in the way. You can sign off on the hospice. You could try another hospice service, and see what they think. Since you get no answer from the primary and ortho, I would look for another of each - find one who will do appropriate assessments, not just read what others wrote and not consider the whole person.

You mentioned, I think, hospice was for the hip and dementia, but it doesn't sound like your mother is that far (certainly not advanced!) along in dementia. Personally I don't see how dementia would qualify someone for hospice unless they were unable to eat, sit, stand, or communicate.

I would think surgery is probably not the right solution, but that depends on a number of things, such as age and actual level of dementia (I don't see mention of age.) Unfortunately surgery/anesthesia can do a number on someone with dementia (even just older people can exhibit some dementia-like symptoms after surgery.) Sometimes the regression gets better, maybe back to how they were before the surgery, but I think in most cases there is generally some residual decline, but there are cases where they have significant decline. Redoing the hip replacement is some serious major surgery!

I also agree that her being stuck in a bed is not doing her any good. Her muscles will atrophy from disuse, probably contributes to why she can't sit up. She needs to get moving, even if she starts with in bed exercises! In-home PT could probably help (ditch the hospice!), but you would need a doc to order that. Start searching for new docs and meanwhile, if you can find some exercise routines online for dislocated hip and upper body strengthening, you could try working with her yourself, if she is willing. If she has the grit and her goal is to get out of the bed again, she might be willing to do the work to get there!
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LivingSouth Nov 2019
Well I brought up the physical therapy with them - I checked with medicare and they said that it could be covered with hospice. The problem is that this one does not have therapists on staff, so they are balking at providing physical therapy. Said it would be 'irregular' to have it for hospice patient. She is mainly in hospice because of the falls she had. She is getting so stiff in her hip that I cannot turn her. Don't know how they expect me to change diapers, and reposition her when she is as stiff as a board!. The other hospice would be a trade off - they DO have physical therapists, but no home care workers ( and no respite care)
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