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Knee replacements and Alzheimer’s

I know this is probably a long shot  but here it goes. My mom (79) has Alzheimer’s and she’s to the point where she can’t follow directions, can’t remember her address, time, date, day, can’t remember taking medication, etc.  she lives alone.  she’s having a knee replacement next week and they make it sound like no big deal. The plan is she’s having surgery on Wednesday and they keep you one night and then send you home. Now, for someone who is younger and doesn’t have ALZ, I’m sure it probably does go easier. However, she can’t remember moment to moment and can’t follow conversation, etc. She’s going to need physical therapy. My assumption from the beginning was that people who had a surgery of this caliber would go to a rehab facility. Am I wrong? The doctor said they would send PT to her house the first week, but  then she has to go after that on her own to PT. I have two kids at home and 2 jobs. I can’t take her to therapy and be there at her place 24/7. Also, I’ve heard some things about general anesthesia and people with Alzheimer’s. So I’m just curious as to other peoples’ experience with a major surgery/general anesthesia outcome for someone with Alzheimer’s stage 5.
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Comments

  • jmlarue
    jmlarue Member Posts: 511
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    Wow! Honestly, I think it's the ultimate in irresponsible and unethical medical advice to put a woman with that level of cognitive loss through joint replacement surgery. She is not capable of cooperating with the physical therapy she will need. She certainly cannot engage in the exercises she will need to do AFTER physical therapy is finished. Moreover, full 100% recovery from knee replacement is far more uncertain than hip replacements. If this was my mother, I'd put the kibosh on that idea pronto and I'd be tempted to report that doctor to the medical ethics board. Your mother is not competent to give her informed consent to surgery. She must be able to do a great "showtiming" job to make that doctor think there's nothing wrong with her brain.
  • [Deleted User]
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  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    MonicaG wrote:
    I know this is probably a long shot  but here it goes.

    Not a long shot at all.

    My mom (79) has Alzheimer’s and she’s to the point where she can’t follow directions, can’t remember her address, time, date, day, can’t remember taking medication, etc.  she lives alone.

    If she's progressed to the point where she is no longer oriented to time or place, she should be living alone. If she does not have a LTC policy or assets to hire 24/7 caregivers, that another care strategy needs to be put in place. I would even question is she has the cognition to give informed consent for surgery.

    Do you have the necessary legal paperwork in place to act on her behalf because it sounds as though you, or another family member, are on the cusp of needing to take over. Who is making sure bills are paid if she doesn't know the date? If she's on meds, who is supervising that? Is she a person at risk of being scammed over the phone or by questionable charities? 


      she’s having a knee replacement next week and they make it sound like no big deal.

    IMO, you need to cancel the surgery. At least for now. I would question her ability to make the decision and should you decide to go forward you need a robust aftercare plan.


    The plan is she’s having surgery on Wednesday and they keep you one night and then send you home. Now, for someone who is younger and doesn’t have ALZ, I’m sure it probably does go easier.

    It's hard to say. My mom and I both had TKR 2 years apart with the same surgeon. She was 79 and I was 61. She has a lot of health issues and I do not. She sailed through the recovery while acting as dad's caregiver in stage 5. I struggled with pain for over 6 months (I was opiates for almost 6 weeks) and sleep for nearly a year. I will say that I did my rehab religiously (I'd done 6 months of PT to avoid surgery and have done it daily since as it is key to how much you get out of the procedure) and have had the better outcome-- I'm back to walking, yoga and Pilates. I can even kneel. We both enjoy better function and less pain. 

    My auntie had her knee replaced at about the stage your mom is in. It was right after my aunt obtained guardianship after being deemed incompetent to handle her own affairs. Auntie's surgery went well, but she had a stroke in recovery which advanced her dementia and paralyzed her on one side which meant she never walked on her new knee. Her pain and swelling were improved, so it wasn't completely for nothing. 

    Same-day surgery for TKR is the norm. I wasn't even officially admitted although I did spend the night there. They did keep mom 2 nights but she developed a little hospital psychosis so she was kept until she could reach certain PT goals needed for discharge. This short stay means there is no automatic qualifying for rehab via Medicare, so you would need to make other arrangements for payment. 


    However, she can’t remember moment to moment and can’t follow conversation, etc. She’s going to need physical therapy. My assumption from the beginning was that people who had a surgery of this caliber would go to a rehab facility. Am I wrong?

    Many people do elect to got to rehab after. I am not sure of the financial particulars, but I suspect the portion the patient pays for care is greater than after a qualifying hospitalization. But it is still probably the only way this should happen. 

    You're focused on the PT piece which is critical to her outcome, but I am thinking about the meds and breaking out in a cold sweat. When I was discharged, I stopped at CVS to pick up my meds- I was given 2 opiates to use as needed (alone, together, or alternating- my choice), a muscle relaxer, gabapentin, a prescription NSAID, Tylenol ER, Colace (because opiates), baby aspirin, Later they added Zofran for nausea and prednisone for the rash I developed from something I was taking. TBH, I asked my poor DH to take over tracking the meds for the first few weeks as I was not capable of doing so safely. She could accidently OD and kill herself or end up in serious pain or trouble if she isn't proactively managing her meds. 

    The doctor said they would send PT to her house the first week, but  then she has to go after that on her own to PT.

    My mom's first knee surgeon did this- a couple of weeks of in-home PT 3x week. I'm told there were changes to Medicare which impacted payment for this surgery and have made it so surgeons lose a larger portion of their fee if the patient sees a IRL PT beyond a certain level. I'm not sure that true, but it makes sense that all of a sudden nobody seemed to be getting long term PT for TKR unless there was a problem. My surgeon has his own PT protocol which is a 12-week program of exercises done 3-5x/day. 



    I have two kids at home and 2 jobs. I can’t take her to therapy and be there at her place 24/7.

    Can she hire caregivers? I used mom's 2nd TKR to introduce a few hours of HHA into their house when it was clear dad would need someone so mom could get a break. My DH took care of me- maintaining my ice packs 24/7 and monitoring my meds. LOL, I slept on the sofa downstairs and he stayed on the floor next to me for almost 3 weeks in case I needed ice, meds or help standing to get to the bathroom. 

     Also, I’ve heard some things about general anesthesia and people with Alzheimer’s.

    This surgery is typically done with a spinal and sedation. But there are risks associated with blood loss, infection and stroke after. 

    So I’m just curious as to other peoples’ experience with a major surgery/general anesthesia outcome for someone with Alzheimer’s stage 5.

    I probably would hit the pause button on this and make a plan to get her in a safer living situation first. Tam Cummings would put the age equivalent for stage 5 somewhere between 4 and 12. So maybe younger than those kids you have who are "still at home". If you can't leave them to their own devices for a few weeks to care for mom, you probably can't safely leave her to do it alone either. 


    HB
  • M1
    M1 Member Posts: 6,788
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    Monica, I'm saying this with my medical hat on:  I agree with HB, I would cancel the surgical appointment for next week and reconsider whether to do it at all.

    A knee replacement is a big deal, a very big deal:  I've had both knees done, one at a time; by far the most painful surgeries I have ever had.  Unfortunately Medicare rules have changed and do not allow reimbursement for rehab for a single knee, they will only cover if you have both knees done at once.  Crazy, for sure, but true.

    You have the option of paying for private rehab if you can afford it.  But:  even then, at stage 5, it would be a very iffy proposition.  Outcomes with knees very much depend on ability to cooperate with and participate in therapy, and it doesn't sound like she has it.

    So sorry for your dilemma, but I would not put her through it.  Chronic pain medication may be a better bet, for all the troubles that entails.

  • MN Chickadee
    MN Chickadee Member Posts: 888
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    Orthopedic surgeons can have an odd relationship with the finances of healthcare in my opinion. Many receive royalties from the implant manufacturers and  many are actually paid per procedure. Not saying this surgeon is bad or anything, but there is definitely a culture of encouraging them to roll through those procedures. Joint replacement surgeries are big money makers for all involved. And not all doctors understand dementia and the limitations it brings to such a situation. I would echo what the others have said and cancel the replacement to figure out next steps. Your mother would definitely need way more oversight for recovery, managing just the meds would be a non-starter in her state, and it doesn't sound like you can provide that level of care in your home and it doesn't sound like Medicare would cover rehab. You may need to get her moved to a memory care facility for the long haul and then decide if the surgery makes sense. What kind of shape is she in right now, what kind of pain and mobility does she have? 

    Everyone follows a different trajectory, but the average person in stage 5 doesn't have too long in the highly mobile phase anyway. Most would progress to stage 6 within a year or two and falls are quite likely then even with perfectly normal/stable knees. A stage 6 person usually starts to require help getting up out of a chair and walking, they become unstable in their gate and balance. By the middle of stage 6 they are often using a wheelchair some or all of the time. I do wonder how many good years she would get out of the knee replacement even if recovery went smoothly. 

  • dayn2nite2
    dayn2nite2 Member Posts: 1,135
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    An emphatic NO to this surgery.
  • JJ401
    JJ401 Member Posts: 317
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    They keep you one night and then sent you home.

    Alone? My friend, not as old as your mom and no dementia, had a knee replacement and they wouldn’t schedule her unless she had someone stay with her the first few days. 

    Personally, I’d cancel — either permanently or until she can have supervision after surgery. Her inability to follow directions means she is not safe alone after the procedure. 

  • terei
    terei Member Posts: 580
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    IMO the idea of having knee replacement at stage 5 Alz is ludicrous.  This surgeon either has absolutely no knowledge of dementia or he is doing the surgery for the money.  I would never put my mother through a surgery like this when she had moderate AD.  She could not follow directions for PT…she might be worse off than before the operation, let alone the impact on her of the anetheisia.

    If her knee pain can be managed + I’m sure it can, there is no reason to put her through this.  Again, IMO and the experience I have had

  • MonicaG
    MonicaG Member Posts: 21
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    Thank you for all the responses. Now I’m really sweating over here.  I have POA. I do her shopping and pay her bills for her and do all administrative stuff. I have tried to put her in assisted living and she refused and it was a gigantic family fight. I talked to the doctors about how to get someone in AL. they told me you can’t force someone to live where they don’t want to live unless court ordered and with letters from 2 doctors. I even asked the neurologist should she live alone, and the neurologist said it’s up to the family.  I had a place and she refused. The internist said you can’t force her to live someplace she doesn’t want to live. As for her knee, she has been in sooooooo much pain since December and has gone through all conservative therapy there is.  Her knee is fractured and has been drained on several occasions and keeps swelling up.  The steroid injection and gel shot did nothing.  She is bone on bone and in tremendous pain and has a fracture Every doctor we’ve seen knows she has ALZ. Right now all she can do is lay in bed. So what’s the alternative? Please be kind, I’m trying so hard to do what is best and keep my mom’s dignity also.  But please believe me that I know she should be in AL. I had a room for her and she refused. My hands were tied. So I guess the question is do I seek guardianship then? Just know that I can barely sleep at night as it is.
  • May flowers
    May flowers Member Posts: 758
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    Monica, hugs first of all! And breathe … phew, this is SO hard, I get it!

    We chose to do surgery for my FIL as a pain measure for a broken hip in January. He was late stage 6. So, yes, it’s can be done for comfort. As long as you realize PT probably won’t “take”, and she may not walk, but being pain free was worth it for us. My FIL is not mobile but isn’t hurting and can stand and pivot now with help (his surgery was in January).

    The surgeon prescribed a month of in home PT, but we knew after the third week it wasn’t working. Now he’s on hospice but he was further along than your mom. If you believe it will help her pain, then you may want to consider and come to terms with the risks - that PT may not work and she may have some cognitive decline from surgery especially early on. My FIL had some cognitive decline from surgery, he went from stage mid 6 to early 7. The PT nurse said that in her experience with dementia, about half get to their pre-surgery level and it can take as long as 6 months.  My FIL was walking unassisted before he broke his hip. He would have been bedridden, but he is able to be transferred to a chair. It is not like walking but he can push himself around and he’s gotten used to it.

    We chose not to do a rehab facility because the ones near us were not too great with dementia patients and wouldn’t remind to eat or do ADLs. So we opted to bring him here (we are sharing a bedroom with him - interesting times for sure!). We don’t have young children at home so that is a big difference.  

    I don’t know what to tell you about getting into a facility - we never asked the doctors, DH has POA so we just did it with a fiblet. He did well there. But after his surgery, we were told we would have to have 24/7 caregiver there on top of the MC fee, so we opted to do in home caregiving instead.

  • Iris L.
    Iris L. Member Posts: 4,418
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    MonicaG wrote:
    . I talked to the doctors about how to get someone in AL. they told me you can’t force someone to live where they don’t want to live unless court ordered and with letters from 2 doctors. I even asked the neurologist should she live alone, and the neurologist said it’s up to the family.  I had a place and she refused. The internist said you can’t force her to live someplace she doesn’t want to live. 

    This is true for a cognitively competent person.  A person who is unsafe living alone needs a safe living environment.  Assisted living is more like a hotel, residents come and go of their own accord.  In a memory care facility, residents are protected from eloping and wandering.  The attendants know how to respond to the requests "I want to go home".  My 90 yo relative always asks me to come get her to take her to her home, and she tells me the address of her childhood home, meanwhile she already is in her own home.  If she is bedridden, how is she taking care of herself?  Eating, dressing,  toileting??

    Doctors are not good at the social aspects of care.  They do most often leave it up to the family, frequently with poor results stemming from lack of being proactive.

    Iris

  • towhee
    towhee Member Posts: 472
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    I am sorry you got blindsided by changes in Medicare coverage. I have no opinion on whether the surgery is the best option, but if you proceed you absolutely must have adequate aftercare. Otherwise, you risk making things worse. Surgeons are good at surgery, but they don't often realize that the aftercare is just as important to the patients' outcome. Your mothers' doctors may know she has Alz, that does not mean they understand, and they will can and will just pass the responsibility to family. 

    So aftercare is up to you. It is going to take time and it is going to take money. So whether you decide to pay for extra time in the hospital, private rehab facility, private caregivers, arrange for time off work and child care for yourself, get help from other family members, some combination, as POA it unfortunately is up to you. Even if you go the rehab route, your mom will probably need extra care for a couple of days at least.

    So why is aftercare so important for someone with dementia? Any medication that makes a person sleepy will affect their mental ablility. It might take a day or so to clear whatever sedation or anesthesia was used. Any strong pain med will affect mental ability. If a person is sleepy they might not drink enough, then they are dehydrated. They might try to eat or drink in a supine position and get pneumonia. They might forget they cannot walk well, fall and break a hip. Get constipated from pain meds, etc.

    You cannot set up aftercare quickly. Please consider postponing this surgery. When you are talking to doctors in the future, the advice I was given was to be blunt, and somewhat detailed about your LOs capabilities, out of your LOs hearing if possible, but if not it was important that doctors understand in the beginning, and also to be blunt about your care capabilities.

    Take it one step at time, take some deep breaths, wish you well.

  • JJ401
    JJ401 Member Posts: 317
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    It seems you are going to have to fiblet her into care. I’d look to rescheduling the surgery until you find her a memory care place. Do the surgery. Bring her to your home for a week or so to get her as mobile as she is going to be, and then — there’s a problem that has to be fixed at the house and it’s going to take a while. You found her this great place to stay in the interim. It’s not forever, it’s just till the problem is fixed. Then the parts are coming from China, they discovered another problem, etc.
  • Jo C.
    Jo C. Member Posts: 2,940
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    Hello Monica, I am sorry for what is happening and can well understand the problems this is bringing. After reading the description of your mother's medical issues with the knee which are severe, I understand the need for such a surgery.  You will want to read the input you get from us Members and then decide whether or not to cancel this surgery date so you can put together a post discharge care plan that is workable and sustainable since rehab does not seem an option.  The surgery can be rescheduled if you decide you wish to cancel it to put care planning together; it will be your decision based on post-surgical care needs.

    NOTE:  I have not heard or read anywhere that Medicare no longer covers rehab for just one knee replacement.  I Googled it and did not find that to be so; but you will want to check. That being said, there are criteria to be met to gain rehab covered by Medicare.

    HOWEVER:   In order to be admitted to rehab, a Medicare patient MUST be in the ACUTE medical center for three 24 hour INPATIENT days.  Your mother is going to be in the hospital for one 24 hour day and she may possibly be admitted on an "outpatient" status.  One day does not qualify her for inpatient rehab and if an outpatient, this also does not count toward that three day critieria should she stay longer for one reason or another.

    There may be an issue with anesthesia causing some changes; and the really big thing to look out for after the admission and surgery that most doctors and nurses miss, is the issue of Hospital Induced Delirium.  That is a really important point - an elderly patient, especially one with dementia, can go into delirium and it makes the dementia seem far, far worse.   So; please do keep this in mind and make it part of the doctor and nurse assessments.

    NOTE::  To complicate matters even more, Medicare now permits hospitals to admit patients as OUTPATIENTS even if they stay a long time over multiple days  - I have seen this happen with 10 days of hospitalization.  Problem with that, is the patient owes a ton of money as only Part B Medicare is covering and Part A does not.  When this happens, the patient also does not meet criteria for rehab which entails being an inpatient for three 24 hour days.  It is important to always ask the doctor to admit the patient as an INPATIENT and to keep her that way.  The hospital at any point can call the doctor and get the patient changed to outpatient status; so do call the hospital admissions or business office on a daily basis to ensure your LO is still being coded as an inpatient. 

    Your mother may have complications or severe changes in behaviors secondary to delirium which may make her hospital stay a big longer; just be certain that each day in the hospital is an inpatient day and not outpatient.  If she is in for three 24 hour inpatient days, then rehab becomes an option IF she is able to perform and follow with PT as required.

    Only exception to the three 24 hour days is if a patient belongs to an HMO or Advantage Plan and doing away with the three day qualification period is on their list of benefits as it is cheaper to care for a patient in subacute rehab than it is in the acute hospital.

    If you cannot gain inpatient rehab, then she is not safe to return home. In fact, she does not sound safe to be alone in her home as it is.   If she cannot return home, what will you do?  She will need home rehab IF she can follow and cooperate with directions; but it will be in a home setting.  Can she stay at your home for a couple of weeks?  If not, does she have funds to pay for a 24 hour caregiver in her own home?  She will need 24 hour care. If she cannot function with PT in a home setting and is not healing well, how will you then handle her care?  Will she need Memory Care or NH care?  If so, does she have funds to pay for such care?  If not, will she qualify for Medicaid for Long Term Care?  These are questions it would be good to have answers to or plans for prior to a  surgery when one does not know what the outcome will be.

    This is not an easy situation and you will be flying without a crystal ball to tell you what will happen; so one should prepare for the worst eventualities and hope for the best.

    I am truly sorry for this dilemma; please do let us know how things are and how all is going, we sure will be thinking of you and hope all goes well.

     
     J.

  • MN Chickadee
    MN Chickadee Member Posts: 888
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    Regarding getting her moved to a safe living environment - couple thoughts. The first is that the AL ship has probably sailed, unless it is a dementia specific one. Regular AL tends to not be a locked unit so people come and go, and far less supports in place. There are some nuances in how the term AL is used. Sometimes it is more like memory care, but you want to be sure it is ready to handle dementia and has a higher staffing ratio than typical AL where people are only getting meds once a day and housekeeping weekly kind of thing. A Memory care will have more staff so more time to spend with each resident and also better training on dementia care and activities a PWD can keep up with and will find enriching. 
    You need two things to get her moved. The first is advice from an elder law attorney. You need to find out exactly what needs to happen to spring the POA. The doctors won't know any of this, you need a lawyer who practices in elder law and estate planning. POAs can be written differently. Some may need a letter from a doctor saying she isn't competent to handle her affairs, some do not. If for some reason the POA is no longer valid (which seems unlikely, you just need to figure out what it needs to spring) the attorney can advise on next steps. They would determine if she is competent to sign a new one or if not then what the steps would be for guardianship. But once you work out the legalities, then yes you can make her move against her wishes. Which leads me to my second point. We usually have to use therapeutic fibs at this stage to get our LO the care they need. From getting them to take their meds, go to appointments, change underwear, move to a facility. It's all about fibs and workarounds. We don't tell them they have dementia and can't live alone, we don't tell them they are moving, we don't tell them it's permanent. Some say there is a problem at the house. You can stay here at this senior hotel until the pipe is fixed or the heat is back on. Sometimes they come to visit us and we keep extending it, finding excuses such as the car needs a repair before I can take you home. Many blame the doctor. The doctor wants you to stay here at this "rehab" facility until that xyz is better (to help your memory, to monitor blood pressure, heal that knee, or whatever might fly.) We almost always call it temporary.  Their minds are too compromised to process logic and reasoning so there comes a point where it's just cruel to tell them the truth. We only say whatever will bring them the most comfort. Personally I got the room set up ahead of time, took mom out for a drive, then said we were stopping at this center for lunch. Afterwards I told her the doctor wanted her to stay a few days and quietly slipped out and the staff took over. It feels wrong but these are the kinds of workarounds we usually have to find to get them care. If you have POA the facility will not bat an eye at this. A memory care facility is very used to people who don't want to be there and staff should be trained in redirection and helping them get through those early difficult days until they adjust. Using a hospitalization is often good timing for a move, because it gives plausible reason for the stay in a strange place. Call it "rehab." Is it possible to postpone the surgery until you consult an attorney and make a plan for her long term care? It does sound like no matter what the outcome she is going to need to live in a care home afterwards/soon, unless there are finances to hire round the clock care in the home. 
  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    MonicaG wrote:
    Thank you for all the responses. Now I’m really sweating over here.

    There are a lot of moving pieces to this. In your shoes, I would cancel the surgery and sort out a plan to go forward.

     I have POA. I do her shopping and pay her bills for her and do all administrative stuff. I have tried to put her in assisted living and she refused and it was a gigantic family fight. I talked to the doctors about how to get someone in AL. they told me you can’t force someone to live where they don’t want to live unless court ordered and with letters from 2 doctors. I even asked the neurologist should she live alone, and the neurologist said it’s up to the family.  I had a place and she refused. The internist said you can’t force her to live someplace she doesn’t want to live.

    I would be cautious about taking legal advice from a doctor. Have you discussed the parameters of the POA with the attorney who drew it up? There are different kinds-- some do require a physician (or 2 or 3) to state that the PWD is no longer competent to manage their affairs, others are voided if the person becomes incapacitated. Do you hold the POA for health care decisions as well as the financial stuff? 

    The worse case scenario would be that you need to seek guardianship which is more time consuming and expensive (if you prevail, mom would pay the costs). 

    FWIW, a lot of folks here have placed a LO without consent or over their objections. I certainly did. 

    It's generally best to decide on a facility and create some sort of therapeutic lie, aka "fiblet", to explain why the PWD is there. Some folks tell their LO that there's a problem with the sewer lines or termites and they need to move to a senior hotel while work is done. What worked for me was telling dad his doctor ordered rehab to get him stronger and that we found a great up-scale, private rehab instead of the one he went to last time. We never told him it was permanent, only that he needed to stay until the doctor felt he was doing well enough to come home. Something like this could work for you. 


    As for her knee, she has been in sooooooo much pain since December and has gone through all conservative therapy there is.  Her knee is fractured and has been drained on several occasions and keeps swelling up.  The steroid injection and gel shot did nothing.  She is bone on bone and in tremendous pain and has a fracture

    Yikes. I did all the conservative stuff with no benefit either.

    A couple of thoughts. I found with my dad as his dementia progressed his ability to deal with discomfort and pain really tanked. Minor things he would have ignored previously became big hairy deals. I only mention that because if she does go through with TKR, the level of pain in the recovery period was considerably more than I expected and even now a couple years out my replaced knee can get achy with weather changes and if I am on my feet a lot. TBH, sometimes it feels worse than my other knee which is bone-on-bone in the medial compartment. 

    That said, even if she can't follow through on PT, it should lessen the pain a great deal as it did for my aunt.


    Every doctor we’ve seen knows she has ALZ. Right now all she can do is lay in bed.So what’s the alternative?

    You could create a more comprehensive plan around the surgery if you feel you need to go forward with it. Jo C. made some excellent posts about the nitty gritty aspects of Medicare and hospitalizations. FWIW, my surgery was considered "outpatient" although I did stay overnight. My mom stayed 2 days, in part, because she suffered a meltdown during PT-- the hospital formulary did not give her 2 of her medications and their bi-pap wasn't working properly so she was truly not herself. I was staying with my dad (in stage 5 dementia) so I couldn't stay with her as I would suggest you plan on doing. 

    She could go to a rehab as self-pay using medical transport for a recovery period. It's expensive, but if you're looking towards a MCF in the future (she already sounds too impaired for a hospitality-model AL) it could be an easier transition for the both of you emotionally. She could stay 2-6 weeks and then transition to MC from there. Maybe you could find a place that offers both in the same building or campus and create a fiblet about the doctor wanting her to have more rehab or stay there until she's fully healed-- rinse and repeat. 

    Please be kind, I’m trying so hard to do what is best and keep my mom’s dignity also.  But please believe me that I know she should be in AL. I had a room for her and she refused. My hands were tied. So I guess the question is do I seek guardianship then? Just know that I can barely sleep at night as it is.

    Good luck.

  • Rescue mom
    Rescue mom Member Posts: 988
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    Everyone else has already said it, and I’ll add my second, especially on a couple things.

    You really cannot reason or discuss something rationally, or convince like you would others, a person in this condition. They have a brain disease. Their brain is broken. You have to take charge, and it’s really, really hard. It’s not fair, it’s life-threatening to your own life. But that’s what it is. If a toddler refuses to get in bed, or not play in the road, or wants to eat nothing but cake, do you allow that? That’s basically what’s happening here with her refusal for further care. Her best interests may not be what she wants, but her brain no longer functions right.

    Several people n my immediate family had knee replacements. They all say continual care and exercise and PT —all that—is critically important. It doesn’t sound like she can handle that.

    Most doctors, unless they are dementia specialists, are disappointingly unaware of what dementia and Alzheimer’s entails. A surgeon, or a bone specialists, etc., may well be less than focused on the impacts with her dementia.

  • Paris20
    Paris20 Member Posts: 502
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    I cannot imagine a person with AD going through the recovery involved in knee replacement. I had total knee replacement a few years ago. I was in my early 70s, extremely fit, and of sound mind. I had no complications. However, those first couple of days post surgery were the most painful ever…and I was given morphine. I was allowed to stay in the hospital for three days, required to walk steps before release. Nevertheless, the pain for the first week or two was intense. The PT was too. My husband has AD. He is obsessed with the tiniest cut, the smallest ache. There is no way on earth that he could go through the surgery, the PT, and the exercises at home that recovery requires. An elderly person with AD cannot do this. The setback in the disease would be irreversible. This orthopedic surgeon is thinking about a knee, not a person with Alzheimer’s.
  • MonicaG
    MonicaG Member Posts: 21
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    Thank you so much for this very useful information. My sister and I don’t feel she is safe to live alone. My mom refused AL two years ago. surgery is tomorrow. I heard about the inpatient status and will be all over that. I believe she would benefit from rehab and going to do my best to get her into one. I talked to the pre surgical nurse and after surgery, we’re going to get a case worker to help us place her in a rehab. Thank you again.
  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    Good luck with all of this.

    I will be thinking of your in the coming days.
  • May flowers
    May flowers Member Posts: 758
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    Good luck tomorrow and prayers for a good result and quick recovery. Something to keep in mind about rehab, from what I have heard, they may not have the staff needed to stay with her/remind her to make sure she is eating and drinking. I recommend you or someone in your family try to be there at mealtimes, especially in the beginning to see how that is being handled. The same is true of the hospital, DH told me if he hadn’t been there, his dad would have had very little to eat, because he was too groggy to feed himself.
  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    Cobbling onto what May Flowers mentioned about meals.

    In the recovery period, it is important she eats a protein-rich diet that also contains a fair amount of iron in order to maximize healing and help her body recover from the significant blood loss associated with TKR. Many PWD prefer easy to eat junkier options and sweet treats, so this may be a challenge you didn't anticipate.
  • Pam14
    Pam14 Member Posts: 4
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    Monica - I haven't posted in eons because my sister died 5 years ago from Alzheimer's.  However, when I saw this, it hit home.  My MIL had "mild dementia" in July of 2021.  My FIL was hell bent on her getting her knee replaced.  She got it done, ended up with a compression fracture in her spine, too, one thing led to another, and her mind was mush.  She passed away in April of this year.  I wouldn't even consider getting a knee replacement for someone at her state.  The anesthesia will do her in.  They only gave my MIL a spinal block with deep sedation & it did her in.  Good luck to you.
  • easy23
    easy23 Member Posts: 212
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    Pam14 - the surgery was last week. Let's hope we hear a positive outcome!
  • MonicaG
    MonicaG Member Posts: 21
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    So my mom had the knee replacement on 7/6. She had spinal and nerve block. The surgery went great. She was in the hospital for 5 nights. I picked out a rehab and they transported her there. I had to go out of town but my sister and my husband were here in town to handle things. My sister went to the rehab and said it was disgusting. My mom slept in her clothes, there was no one around, etc. My sister took my mom to my mom’s home and then took care of her. My husband also helped out as well. While I was out of town, of course I was handling phone calls from my sister and my husband regarding the situation. My sister had to take off work to take care of my mom. My husband stepped in so she could go to work at times. About a year and a half ago, we tried to get my mom into MC. Of course she refused. Since then, me and my sister have been doing all the shopping, appointments, bills. My mom can do ADLs but that’s it. She can’t do her medication or the ice machine or exercises on her own. Post surgery, she’s doing fine physically. Mentally, she has declined from the first time we tried to put her in MC. I called the MC and to make a long story short, we plan on moving her there next Tuesday. We are going to take her there and tell her it’s for PT. I’m so torn because my husband is like, your mom is doing so great and she’s going to be 100 percent in a week. Me and my sister are exhausted from doing everything. I guess I’m still torn and feeling guilty about these fiblets. But on the other hand, I can’t live like this anymore. I have 2 jobs, 2 teens, I’m always running around chasing my tail with appointments for everybody. Tomorrow I have to go there, get her up, meal, medication, and take her for booster (4th) for MC and then go to work. Bottom line is I feel guilty and  sad about lying. I’m completely overwhelmed.
  • JDancer
    JDancer Member Posts: 463
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    Congratulations to all of you for a job well done. Reducing your mother's pain is a huge win which will do wonders for her quality of life. 

    Sounds like a perfect way to transition to MC, the situation didn't seem sustainable for any of you.

    Your mother is fortunate to have such a loving, supportive, and hardworking family.

  • May flowers
    May flowers Member Posts: 758
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    I am glad to hear the surgery went well, but sorry for the issues with rehab. Unfortunately, I have heard this is a problem for dementia patients as they just do not have the staff to give them the attention they need. We also opted to bring my FIL home after his surgery in January. We were going to just have him here for rehab and return him to MC, but it didn’t work out that way, so he is on hospice now instead. My LO could not walk unassisted, but was trying to walk constantly, so the MC said to bring him back we would have to also hire a 24/7 caregiver on top of his MC fee. We could not swing that, which is why he ended up here. We would have done it again to ease the pain though.

    You are making the right call with MC because it is a full time job and it is exhausting even with paid help - I could not be doing this with a job or with younger children. Will PT be going to the MC? I hope that goes well. Something to be aware of, a PT who worked with my LO said that sometimes the staff at the facilities will not follow up on the exercises that they need to do. So, someone will need to check in with the MC to make sure it’s happening if you are hoping for her to regain mobility. Is she able to walk unassisted?

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    Monica-

    Thank you so much for taking the time to update. I have been thinking about you and your mom the last week or so and am glad to hear it's gone as well as it has.

    Cobbling onto what May Flowers suggested, it may be difficult for mom to stay on top of her PT. On one hand it could be useful for her to do PT with someone who works in MC (we had better luck with MCF's PT than the one in a general rehab or the one we hired privately to come to the home), on the other I doubt she will self-initiate or remember she needs to do this and it's not a routine aide responsibility. It might make sense for a family member to visit daily to make sure she gets at least once session in each day. Maybe your DH or teenaged children could step in here. 

    Let go of the guilt around fiblets. You are at a point where kindness is more important than honesty. Tell her whatever it takes to get her well cared-for. 

    HB
  • sandwichone123
    sandwichone123 Member Posts: 770
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    It would be a good idea to have PT train the family members to do the exercises with her. If family could come work with her a couple of times a day until it's clear that PT is working with her it would be good. Another idea is for family to demo the exercises with the staff so they can (if they're not too short-staffed) help her with them.

    I mean, it's possible she'll get the PT she needs there, but it would be wise to have solid Plans B and C.

  • MonicaG
    MonicaG Member Posts: 21
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    Thank you all for the support. I’m so grateful for this ALZ connect and its members. I appreciate all the words of wisdom and experiences. The MC does offer PT. I realize that us family members will have to stay on top of that. She has to use the walker.  It’s a must. I know it’s doing the right thing to get her proper care, but I know she’s not going to see it that way.  The reality is we can’t be her 24 caretaker. but I feel guilty lying. My plan is to tell her she’s going to physical therapy and bring her in.  Because if I say she’s staying over night or suggest she’ll be there for a few weeks, that’s not going to fly with her. I’m just wondering about people who got their LO’s in MC by saying something like, oh, your apartment flooded or what have you, did they then ask for how long they would be out of their apartment or did they inquire when could they go home? What do you say to them when they ask for how long they have to be at this new place for?

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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