The medical issues my mom has/taking medicine for: osteoarthritis, depression, type 2 diabetes, neuropathy, and also takes medication to treat Parkinson's symptoms (hasn't been diagnosed) as well as having past schizophrenic episodes.
I've been taking care of my mom for years now. 3 months ago all this required was being a son at home, spending a couple of hours a day talking with her, making her food and watching her eat and administering her medications. She could stand up, go to the washroom, go to the kitchen or walk to my room to ask me something while I am working from home. But start of July came around and my mom went from being able to move around the apartment on her own, showering, dressing and eating food unassisted to being unable to get to a sitting position after sleeping in bed, scooting her body to the edge of a seat, standing up on her own, walking or doing anything other than breathing and sleeping on her own. I was so confused because it showed itself so fast and progressively came worse, so I will start there and work my way to present.
It started in July when in one single day, she fell 3 times trying to stand up from her chair. The chair we bought her is a lift chair with a remote right next to her to help her stand up anytime she wants but she never uses it. They weren't bad falls but falls nonetheless. A couple of days later and it gets to her not even being able to stand up to be able to fall. She told me it was her right knee and it made sense because it was the right leg that would never move properly and eventually give out whenever I tried to help her walk (she would be walking or standing for more than 60 seconds and her right knee begin to bend and cause a domino effect to her whole body curling up, looking like she is trying to sit down on a chair that is not there until a backwards fall happens). Right knee replacement surgery occurred on August 4.
It was a total right knee replacement and she already had her left knee replaced about 8 years ago. The difference between the 2 experiences are night and day. While the first one had her in some pretty bad pain and gave her difficulty moving, it only took a few weeks before she could move around with a walker and be independent. With this right knee, for a month at the rehab center where she stayed, it took 2 therapists to bring her from being in bed into a sitting position and then lifting her up to stand. Even when she stands and holds the 2 wheeled walker, there would need to be 2 people to keep her body upright while pushing the walker. Going to the washroom required a gait lift even though the commode was about 10 feet away. Sadly, it’s not a long term care place and only a month was allocated for post operation therapy but she made almost no progress in ability to move her own body. She is now at home and we have her in a home car bed we rented. It is placed in the living room. There is a urinary catheter to make peeing easy and I help her move to the commode close by whenever she needs it (she also poos maybe twice a week at this point).
Long story short, I don't think it’s simply a knee problem. The falling before the surgery, the lack of balance and inability to control her own body and what I didn't even mention which was the constant stopping halfway through sentences, inability to drink from a cup (she closes her eyes while trying to drink or eat anything from her hand and a cup will touch her cheek instead of reaching her lips). I am supposed to book physiotherapy but I don't think she is in any condition to listen to commands for those kinds of exercises. I feel like this is dementia rapidly progressed from one of those previous falls? What should I do? I am planning on taking her to the family doctor after the weekend, hopefully him seeing and talking with her for 20 minutes will at least prove I am not crazy and that there is something undiagnosed going on.
The first thought I had was did she even need the knee surgery? I guess most people of a certain age would have age related wear and the fact one has been replaced already might make it seem feasible.
If she has dementia she may not be able to identify that she can’t feel her right foot from the neuropathy?? The lift chair was difficult for my DH aunt to operate but she was about 95 when she was trying to use it. Your mom is so young. I’m so sorry this is happening to her and no, you are not crazy.
Neuropathy can be debilitating and very painful but your mom might not be able to identify or articulate the pain due to her dementia. Has she seen a neurologist at all? How long has she been on the Parkinson’s meds?
She could be even more addled by the anesthesia. That can take awhile to recover from and the catheter can cause UTI’s. Doubtful that’s causing all these symptoms you mentioned but be sure to have the doctor check for a UTI while you have her there.
Have you discussed her meds with a pharmacist?
Your mom has a lot going on. Diabetes, neuropathy, dementia, Parkinson’s meds, recent surgery.
My parents lived in a rural community where the medical care was sketchy. I found the best care for them was driving them to a medical center ER three hours away. There they got the best care as they had specialists for the various issues and these specialist were more experienced than the small hospital near my parents home.
These days a lot is dictated by insurance so your mom may have to go through her primary to be referred to a specialist. My parents had original Medicare and I could take them to any doctor. I realize there are many considerations. My parents wanted to go where they could get the best care, so that was what we did when things couldn’t be handled by a doctors visit. (I’m not advocating here that people go to ER’s for their regular medical care).
This is a lot to manage. Your mom is lucky to have you. I hope you are able to get some answers for her soon.
Your mom is awful young to have so many health issues. I hope you're taking much better care of yourself so that you don't end up with the same issues she has down the road.
I wish you well in getting the answers you need and your mom deserves.
If your Mom isn't making progress in PT, it will most likely stop being ordered for her. If she doesn't regain at least some mobility, this will be a very profound change in her daily care needs.
Do you have the option to take her to a neurologist (based on the weird spatial symptoms she was displaying pre-op)? Is it possible she had a TIA or stroke?
Also, is she administering her meds to herself, or are you doing that? I'm only asking to make sure she isn't over-medicating herself, which would account for some of the symptoms. Especially the post-op opioids.
Is she on any meds for her schizophrenia? Is it possible these meds are interacting with anything else she's taking?
IMO yes, there was something going on before her surgery. I hope you can get to the bottom of it soon!
I still give her all her medications because a couple of years ago I noticed she would both forget to take some medication (mostly the morning ones) and also overtake the opioids she got prescribed for the daily pain. I have been handling her medication for the last 2 years, but I show her everything I give her, remind her why she is taking them just so she can still be aware and have some involvement in that aspect. The schizophrenia medicine she takes is Invega and she takes Benztropine at night at the same time to both treat the side effects of Invega and treat the the tremor symptoms she has. I think these medications still work well because its been 3 years since her last schizophrenic episode.
Seeing a neurologist is definitely something I was thinking about. When she first got admitted to the rehab center after the surgery, I was speaking with the medical team during the introductions and their assessment of her for the care plan. They came in one after another and from the doctor to the physiotherapist and the occupational therapist, they all asked if she ever had a stroke. She was never diagnosed with one during any of the numerous hospital trips in the last year but it does look like she has stroke like symptoms. They are present one day and then the next day they are not really there.
I guess the first thing is to reach out to the Family doctor because there needs to be a diagnosis and a re-haul of here current care plan and medication. My dad thinks it may partially heal with rest but she was very rested and cared for super well at the rehab center, so if it was that simple it would have happened by now. So I also need to get my dad on board. What we had working for the past few years doesn't seem to be working anymore.
I also want to say thank you for your kind words here, you all are really nice.
As I said, she needs a head to toe mental and physical now and best way to get her is get her there, admitted, and they need to be told in ER that she needs placement is there is no assessment and no cure for this condition. That is quickest way to get social services in on this to help, and you need a case manager on her case to be certain she now gets the physical and mental assessments she needs.
I am so sorry. This is very sudden, and seems to be worsening by the second. I hope you will let us know what is going on with updates.
Good luck!
"I am supposed to book physiotherapy" I would make this appt. I would explain what is going on and let them decide if Mom needs them. And sorry, your Mom needs more than her GP unless you need a referral from the GP to make an appt with the Neurologist who she should be seeing. Parkinsons is a Neurological problem. The falling backwards and other things u have discribed are signs of Parkinsons. So is the Dementia. With her Dementia, I would not have done the knee replacement. First because of the anethesia and second, seems it did not solve her problems which ur Mom has a lot of.
I stayed with her in the emergency the entire day and slept over at the hospital and it wasn't until 3 AM in the morning that the specialist came by to check her out and look over her charts and medications. I brought up everything I have noticed from her pre knee surgery and after and his initial assessment is that her symptoms are related to the schizophrenia history and the Invega prescription she takes. They checked her head and heart and there was no signs of a stroke or dementia but the specialist wants her to see a psychiatrist while she is admitted to the hospital, while also reassessing all the medications she takes. I requested to also get her to see a neurologist for a second opinion and he assured that we can do that at some point while she is admitted but first is to watch how the antibiotics for the bladder infection work for her physical effects, then get her to see a psychiatrist and evaluate her mind and medications. My mom has only been at the hospital for a 24 hours but her physical condition is already better than when she was at home. For some reason, she is so much more responsive and agreeable with the nurses and the doctors. It would take me, my brother and my dad negotiating with her for 20-30 minutes just to get her to sit up and try to stand for exercises and at-home physical therapy, but with the nurses she does not argue, she gets up from the bed and her upper body control is so much better.
For some of the questions here I did not get to, I am not from the US or Europe. I live in Canada and I know this forum is US specific, but the resources and the community here aren't really there for other sites where I can get people from Canada. So sorry if anything I mentioned was confusing or clearly un-American or something.
My hope is that she does not get discharged to go home without a clear identification of the problem(s), a plan of attack and some restoration to her personal independency. Taking a break tonight from being at the hospital for so long and I have my cousin and my uncle with her tonight. Thank you all for the kind words and good points
I'm certainly no expert but I recall when talking to the surgeon for my husband's knee replacement that diligently following the prescription for physical therapy is very important to recovery. He told us that too often, patients want to "rest" and take it easy after surgery and that often results in the surgery doing very little good - they are in just as much pain when moving after as they were before. Yes it does HURT to do those exercises at first.
I hope they can get her on a better path while she's in the hospital.
and to do them anyway. I am due for a hip replacement (at 84) - now I know that I will not be harming myself further by painful exercising but in fact HELPING
myself by so doing. IMPORTANT INFORMATION for which I am grateful.
I would suspect neuro from your initial post. Or maybe the medication mix?
I see your update where many things have been ruled out & a med review planned. Your health service seems very thorough. Good.
I met someone years ago dx with both later onset schizophrenia (Sz) & PD. I had wondered at the time how the Psychiatrist differentiated between psychosis (Sz or other) & hallucinations (PD). I also wondered which came first: the Sz, then PD (is there a higher risk of medication induced PD from the Sz meds?) Or was PD first & the schizophrenic-like symptoms actually Lewy Body Dementia (LBD)? (PD is a known risk factor for LBD). It effects dopamine, which plays an important role in behavior, cognition, movement, motivation, sleep, and mood.
A work college had something very neurologically wrong with her MIL. LBD was one suspect. Tests, scans, bloods could not diagnose yet family knew she was not right. That lady passed away much quicker than a diagnosis could be found. This was initially upsetting but the family made peace that nothing could have been done & she was not in pain.
I really hope your Mom's medical team can find some answers for you & you have a good outcome.
After hip surgery in her late 80's, the decline began. That is when I became her full-time caregiver. I made it a point to be very active in her care, communicating with medical staff frequently and asking questions non-stop. Each day was a new adventure, and I learned the importance of empathy, compassion, listening, and patience. I was proud she was able to remain in the family home, and that I was with her as she completed the journey to the sunset of her life at age 93.
You are clearly engaged in your mother's care, and that is to be commended. Keep being her advocate. She needs you. You will never regret the role you are playing for the lady who means so much to you.
Always look forward to your posts.
1) bladder infections can send one into la la land, mental disorientation, confusion, etc. Especially w/a person on psych meds, hard to tell how much the infection could be affecting her. Many people don't know but as we age, we can lose the severe pain associated with UTI's. I was only 70 when it happened to me. So you don't realize the infection is there. Hospital said she had start of one; what if it had been ongoing at low level for some time?
2). Being immobalized in hospital a few days, like for knee surgery and rehab can destroy an older person's mobility. My sis was 82, hospitalized 4 days, by the eve of her discharge, she was dead weight. It's as if her leg muscles disappeared. She went into a home. Ins stopped paying for PT. Her husband got a person coming in to work with her. She went home, walking with a walker after 8 months, just from 4 days in hospital. Had he not found that person (trainer from a gym that only took people over 50) she would stayed the rest of her life bedridden.
If other said what I've said, I missed it, sorry.
Good luck to you and your family.
Have her assessed for a UTI (those can be unbelievably nasty) and just a general check up. Ask the Dr for a geri-psych eval also.
How old is mom? Some of this may simply be due to aging.
Each new surgery is looked at like a NEW surgery. I know plenty of people who had a joint replaced and did great--went in for the 2nd one and never really recovered. It's a sad thing, for sure.
This does sound more 'mental' than 'physical'.
Ruling out a UTI, then taking a look at her mental state would be in order. She may have had a mini stroke during the surgery--this is why anesthesiologists are so careful about passing someone off for surgery when they really don't need it. There are side effects to any anesthesiology that we really don't understand.
You seem very organized and aware of your mom's deficits-that's sure better than being in denial.
I hope the Dr visit gives you some answers. Ones you can work with to make her life as independent as possible. Good Luck!!
Thank you for giving us such a great update yesterday.
I hope mom is feeling much better since getting the antibiotics and that you got some rest.
Let us know how she is doing when you get a chance.
As of now, my mom is back home after being discharged on Monday. She was stable mentally, antibiotics for the infection ran its course and worked, her energy more or less returned and the swelling on the operated right knee went down. It was only a week she was admitted to the hospital but the care she got for the infection and the occupational/physio therapy helped her a lot. Her mobility is still not the best but she is in much less pain and can walk and turn completely on her own when using a 4 wheeled walker. The only struggle is Sit-to-Stand which I'm working on with her at home daily, doing hip extensions in bed and practicing just standing up and squeezing the glutes.
At the moment, the main challenge to work through is trying to treat her pain. She is still taking small doses of hydromorphone (0.5 mg as needed, prescription allows 3 a day max but I'm keeping it steady at 2 a day for now) and scheduled tylenol extra strength. The hydromorphone I only give her prior to doing exercise. Like I mentioned in the previous update, the hospital got tons of tests and there doesn't seem to be anything wrong other than the pain of the operated knee that inhibits some of her movement and balance. Not quite sure how I'm going to tackle it but we have some homephysio set up starting next week (it takes a long time to get someone in the house, I could go for outside physio but right now I think its better to not travel as much as possible). Taking her tomorrow to the hospital where she got the surgery for her knee and the cystoscopy clinic there will remove the catheter and see how her water retention is for a certain amount of time, which is good because I don't feel comfortable treating her catheter at home (I'm always afraid of doing something wrong). Past that, getting a meeting with the family doctor and then a followup appointment with the orthopedic surgeon, but I have optimism that as long as I make sure she doesn't fall and hurt herself, keep working with her for exercise and walking at home, that things will not come crashing down again. Its a lot of work and I need to be around her basically 80% of the day, but I think I can do it.
Thanks so much for the update! So few return to let us know what is happening. I am so happy your Mom is back home.
Geaton, who regularly posts on AC, recently had replacement surgery and she posited on how difficult recovery can be, said she was of a mind that the younger you get this done, perhaps the better for being able to go through the grueling necessities involved in recovering from it. I have a FB friend who is recovering from knee replacement and she said that from talking to others she had thought this was 1-2-3 and done. And it is much more involved and so much more limiting for her in her life as she pushes slowly to recover.
I wish you the best, and again thanks for the update.
My goal is to return to playing tennis (league play, year-round). I am 64.5 but have been athletic and don't have the health issues your Mom has, so she won't have the same rehab goals as me. For her, it's hopefully to be pain-free, independently mobile and able to do her ADLs.
I got myself off the opioids almost immediate because they made me so loopy that I didn't want to do my PT. This would be a disaster for anyone. Also the constipation was not helping. I would try giving her the Tylenol in advance of her exercises, then icing and hydromorphone, in that order. Does she need to take any of the pain meds at night in order to sleep? I tried to avoid that so that I could "bank" my Tylenol 24-hour maximum to be instead used during my waking hours to get all my PT done. Also pls remember that opioids are addictive and no one plans to become addicted to them. If you can cut her dosages down without telling, do it and see if she notices. Better to increase the Tylenol and decrease the opioid, IMO.
I didn't hear you mention the GameReady Ice machine: this is an essential therapy for post-surgery. If her medical team hasn't mentioned this, ask about it -- it helps with the pain and swelling SO much and is easy to use. She needs to prop up her leg during icing so that her heel (with leg straight) is above her heart. I think you can rent it from a medical supply store without a prescription.
She should be working closely with a PT at this point. There is no way to know what real progress is being made without this. I was told to go 3x a week immediately after my surgery for 2 weeks, then reduced to 2x a week and now I'm only going once a week. Every session they measured my range of motion and adjusted exercises accordingly. Mostly now they've "cut me loose" to go back to my fitness club to use their equipment and swimming pool, plus she gave me in-home exercises. I only go back to check progress and see how I can move toward my return-to-tennis goal. If you are able to get your Mom into a swim class, that would be very good for her. She can do it once her incision is completely healed. There should be no day that goes by where does misses doing her PT exercises. I was doing mine 2x every day religiously.
Also, she (or you) should be massaging her incision, assuming it is entirely closed up and not infected. Massage 2 to 3x a day using a lubricant.
My knee is still somewhat swollen, with some fluid below to my ankle, but not painful. My knee right now still feels stiff and mechanical: this is normal. It will feel even more stiff after standing for a long time or doing exercises.
I have 2 full flights of stairs in my home that I cannot avoid. Your Mom needs to practice going up and down steps (they start you at 4", then 6" then 8"). She needs to strengthen her quads in particular.
It wouldn't be uncommon for someone in her situation to never return to 100% pre-op self. With your Mom's pre-existing issues I would have very tempered expectations. If she doesn't make progress in PT (or doesn't cooperate) they will stop ordering it for her so do what it takes to help her progress. If she doesn't, then please have peace in your heart that you've done everything possible given her situation. I wish you both all the best during rehab!