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
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!
Get another opinion.
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!
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.
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
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.
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.
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.
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!
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.