What sort of help does my Mom need?
November 3, 2018 12:32 AM   Subscribe

My mom is four months out recovering from knee replacement surgery and it is not going well. Her main issues is that she is still in a lot of pain and has not attained full extension.She is discouraged and losing hope and I don't know how to help her.

She is attending PT as ordered and performing the exercises as mandated. She cannot extend her leg without significant and painful manual intervention by her physical therapist. She has knee pain, back pain, and by her description is severely limited in mobility because of the pain--has to sit and rest after walking from the house to the car, can't stand, still needs to use her cane, feels unsteady on her feet. Recently she went to the doctor and he said if she doesn't improve soon she will spend the rest of her life in pain.

How can I help my mom? I live far away and (luckily, so luckily) this is the first health issue that has come up with either of my parents.

  • What are the limits on encouraging a person to advocate for themselves? I think my mom is doing the most she can with the spoons she has. Can I ask her to add me to her doctor's list of people to share information with, and can I advocate for her? I don't think her physical therapist is a good fit, but my mom is an eternal people-pleaser and doesn't want to make waves by asking for a different one. Is this something I can do?
  • Is this something that I could find 'a person' to help with? Like a personal health coach that will spend two hours a day with her, cooking nutritious food and encouraging her to go for walks, advocating for her with doctors and physical therapy? If so, what search words would I use to find someone like this?
  • Is there a specific type of movement specialist (and what are they called) that can help with what I believe are her kinetic chain imbalances that have not been accounted for in physical therapy (e.g., feet weakened by years of orthotics, undeveloped glutes from years of sitting, etc.)? I think adding this to physical therapy might help?
  • Or is this just something that I need to take a leave of absence from work and go help her with? I am willing to do that but wanted to see if there were other options that I might not have thought of as an intermediate step. I have a lot going on myself but of course I can't imagine just letting my mom live the rest of her life in pain :(

Any recommendations of things to try, things to read, people to see (she is in Cincinnati, OH), names of types of specialists or doctors I can research, any guidance at all--I am all ears. I want to help my mom but don't know what my/her limitations are.
posted by anonymous to Health & Fitness (10 answers total) 3 users marked this as a favorite
 
IANAD! I hesitate to suggest this, but is there a possibility of a "bad install"? Would getting a different doctor/clinic to take Xrays/CT scans/MRIs perhaps reveal a faulty placement? I have known many people who had similar surgeries but no one with your mom's result.
Consider a second opinion?
posted by Cranberry at 12:53 AM on November 3, 2018


This sounds like shitty PT. Is her PT suggesting swimming? Is she working on a stationary bike at PT? (My PT had to manually extend the pedal into the down position for me until I could do it myself, but those are the specific rang of motion exercises that made the most difference in my recovery.

Remind your mum that it doesn't matter how much she likes the PT, it matters if it's working.
posted by DarlingBri at 2:01 AM on November 3, 2018 [1 favorite]


"Is there a specific type of movement specialist "--you might try and find a Physiatrist. As an MD specializing in rehab they have significant credibility and probably can evaluate whether there is a surgical problem or a rehab issue. You might also try to find a kinesiologist if it turns out to be a rehab problem--I would suggest an MA/MS or Phd. They are frequently involved in sports medicine Hoping for the best for your mother. I would first search out a Physiatrist if there is one in her area
posted by rmhsinc at 2:52 AM on November 3, 2018


Hey,

there are many possibilities of what might have gone wrong with your moms knee replacement surgery.
A few have been already mentioned here ( e.g. inadequate PT). Maybe there was a mistake being made during surgery.
I believe it would be good to get a second look at your moms knee. Another orthopedic surgeon with CT Scan/MRI Scan facilities and in addition another physiotherapist. It might also help to add someone with a lot of expertise in pain management.
Please steer clear of people that tell you there is any kind of easy solution for problems like this. This belongs in the hands of trained professionals. Joint therapy needs a lot of patience and expertise (also from you mom)

Also you can always support her emotionally and encourage her to keep moving and to keep up physiotherapy and training.

I am pretty sure she will get better soon :)
posted by Pippo.z at 4:33 AM on November 3, 2018


I can't speak to the joint surgery but here are some basic tools/strategies:

* Call her doctor's office for general questions that aren't about your mom specifically, like "Are there resources available for helping post-surgical patients at home and coaching them on nutrition, and how can I get more info on them."
* Call a local home health agency to ask if they provide the kind of services you're looking for and if not, whether they know another agency that does. Kindred came up in google along with several others.
* Write her doctor a letter to go in her file to document any issues she's not bringing up with the doc.
* Call medical professionals to make sure they take her insurance
* Make appointments for her
* Is your mom a member of a religious community? Contact them to ask how what support they have available for her situation.
* Yes, you can ask your mom if she will add you to the list of people who can receive info.
* Does she have other relatives in the area? Can they help in some way? Even if it's coming by once a week or so.
* Before you take a leave of absence - if you are a reasonable plane ride away, consider taking some vacation time to go out and assess the situation on the ground, accompany her to appointments, etc. That might give you more clarity re what to do next.

When I'm trying to persuade my stubborn, forgetful parent to take an action I think about the smallest next step, tell them why I think it's a good idea, try to make it as easy as possible, and ask them to consider it. "I found this doc online who is a specialist on X and Y; they have really good ratings on whatever system, and it's close to your place. This woman who had the same health problem as you posted a review saying they really helped her. What do you think? Would you be okay with me making an appointment for you?"

It's okay to call her doc's office when you aren't really sure if they can give you an answer. Not obvious HIPPA violations, but "I'm Patient Y's kid and I'm trying to find a resource for X, is there any information you can give me."

If she's afraid of making waves by asking for another PT, I'd try to figure out why she thinks this is making waves and have a conversation about it. Maybe if she gets some reassurance that it's no big deal and won't be a black mark against the PT, she'll be more willing to switch.
posted by bunderful at 7:03 AM on November 3, 2018


Can I ask her to add me to her doctor's list of people to share information with, and can I advocate for her?

Yes, if she agrees to it. Maybe reassure her that you will be unfailingly polite when you discuss any concerns about her care with her doctor; ultimately, you are looking to better understand how to support your mom. The primary care doctor could be asked about referrals to specialists like a physiatrist, a new physical therapist, and perhaps a licensed social worker to assist with coordination of care.

Is this something that I could find 'a person' to help with?

It's possible there are local resources that can offer case management and/or advocacy services. The Administration for Community Living offers an overview of resources, including:
ACL's Eldercare Locator can connect you to your local ADRC or AAA and to a variety of other services. Visit www.eldercare.gov or call 800-677-1116.
posted by Little Dawn at 7:20 AM on November 3, 2018


A rocking chair will help exercise her knee while she sits, my mother-in-law found that to be good advice. I hope she's being honest with her doctors, so that they know exactly what is working and what isn't. Encourage her with that if you can.
posted by Enid Lareg at 6:32 PM on November 3, 2018


She needs to go back to the doctor and tell them how much pain she is still having. This much pain after four months is unusual and indicates that there's a bigger problem here that needs to be dealt with. This is where you can step in; go with her. Tell them in absolutely no uncertain terms what's happening and give specific details about how it's adversely affecting her life. Name specific things she cannot do. Give as much detail as possible. This shouldn't be happening and they need to look into it. Not a PT or nurse or any other advocate. A doctor.

From there, depending on what he says and what the imaging finds, you can focus on finding a new PT. Do not do this until you have seen the doctor. Ask the doctor about what they reccommend; if they reccommend a new place they can put in a referral. If not, again, you can step in here. Call the PT's office and very nicely explain that it's not working out with the new PT and you'll be needing a new one. Make sure you have the doctor to back you up on this and make sure they know that. If you tell the doctor the PT isn't working, chances are the won't give you much of a hard time about trying something else.

Good luck.
posted by Amy93 at 7:34 PM on November 3, 2018


Having had a knee replacement, the most important thing that you can do is Do. The. Physical. Therapy. Yes, it hurts. Yes, it sucks. But if you do the therapy, it will get better. At age 65, all of us horsewomen get together to discuss who has new knees, hips, etc. The people that seem to continue to have a great deal of ongoing pain are the types that want to avoid pain in the beginning, but it never gets better after that.

First, the doctors need to be in the loop and figure out if there is a physical reason for continued post-surgery pain. Then, she may need pain meds to do her therapy, or she may need anti-depressants, because continual pain will do a number on your head. Finally, talk to her therapist about how they feel your mom is doing, and what they think would help her get better. Depending on your take, you may find it's just not a good fit. My PT for my knee was like a drill sergeant, no sympathy whatsoever. I worked well with that challenge. My PT for my broken back was a very sympathetic lady that kept giving me little exercises like laying down and extending a wooden dowel up like barbells. It seemed pretty stupid to pay to do that in PT when I was going home afterwards and lifting sacks of grain and shoveling pens. (Dr. said it was OK if it didn't hurt and was done ergo-dynamically!) Some people need challenged and some need to be encouraged sympathetically.
I can understand her being uneasy if she is unsteady on her feet, but if she doesn't walk, it won't get better. Maybe she needs a walker for a month or two. Little walks to start with, but sitting will NOT help.
Good luck to your mum. Tell her I'm rootin' for her.
posted by BlueHorse at 7:45 PM on November 3, 2018


Post-knee replacement PT is pretty protocol-driven and not that complicated. Even if your mom has a sub-par PT, that is unlikely to be the cause of such debilitating pain. If she is having that much residual knee pain 4 months out from surgery, I would wonder if there is something going on with her new hardware - it's not unheard of for something like that to happen. But you really can't know if that's the case without imaging, probably an x-ray. If it were me or my mom, that would be my next step.
posted by sweetpotato at 10:48 PM on November 3, 2018 [2 favorites]


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