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I have several issues that I am trying to sort out, please bear with me and forgive anything that may not be clear...


My mother is in a wheelchair and unable to walk (very short distances only with the assistance of a walker) and we honestly don't know why. She had bad knees (bone on bone) and had total knee replacement on one knee. In the skilled nursing/rehab one day she wasn't able to move from the waist down. She didn't fall and said she wasn't mistreated (my mom is 63 now was 62 at the time and of sound mind). She had MRIs & CT scans and we were told she had spinal stenosis (compression and degenerative bone loss). She had back surgery and is able to walk but no where near before her surgery. She doesn't complain about pain in the other knee which is odd since the ortho said both knees were really bad. So I'm not sure if she needed the knee surgery in the first place or even the back surgery? This is one major concern.


Then the thing of dealing with nursing homes/rehabs, home health agencies, doctors, etc. They can be so cold and rude at times even to the family and it honestly scares me to get old. Filing complaints doesn't seem to make a difference and having heated confrontations exhaust me but to stand up for my mom I will have them with staff. Is there a way to hold these people accountable or should I just let it go?


Lastly, my mom only has two children, my older sister and I and we all definitely have our ups and downs. We don't have extended family, just friends to rely on. This makes caregiving stressful. My mom doesn't want too much outside help and wants my sister and I to move in with her but my mom can be very argumentative, mean, and just a lot to handle. She is sweet to the staff at facilities (maybe a little demanding at times and some things are valid) but will say things like my sister and I only care about our jobs and tell caregivers that we don't help her. This isn't true. She uses manipulation to make us feel bad. I feel bad for her but it opens up wounds from childhood (not that she was a bad mother) but her words hurt a lot especially when you are stressed. My sister isn't in town a lot and I ask her to make phone calls to help with mom's care but she feels like mom can handle it herself. I step in when places won't return calls but I also have demanding job and a single mom so trying to handle my mom's affairs is a little much and adds to my plate. Then my sister will turn around and say "yeah they better talk to you and not me" insinuating that I'm not handling things correctly or I'm too nice at times. And when I do get riled up then my mom says I take things too hard and I shouldn't be so upset. While she sits back and wants to eat cookies and candy tell people we're not helping her. I took 3 months off from work, came over everyday during the summer, make calls, clean her & the house, make grocery runs, cook, bring food and the list goes on.


At this point I feel like they are toxic to my wellbeing emotionally. And I've considered walking away but my heart won't let me. How can I preserve my health but still help?


If you got this far, thank you for reading.

And what, in your mother's doctors' opinion, is the cause of *her* disease?

You said yourself that you honestly don't know why she can't walk. Why do her doctors think she can't walk? What is their explanation?

You talk about degenerative disease common in aged people. Your mother is 63. She is not anything like old. You have not mentioned any identified disease that is at the root of her difficulties - arthritis, the spinal stenosis, loss of bone density, these are the results, not the cause.

And you yourself question whether the surgeries she has already had have been clinically justified. How can you tell, if you don't know what they were supposed to achieve or what rationale they were based on?

I am very sorry to have offended you, which I clearly have, unintentionally. What I'm driving at is the need for straight questions leading to straight answers. Some of the questions won't have answers, fair enough, not everything is knowable. But at least then you're looking for a care plan that's based on a coherent strategy.

Have you formed a good working relationship with anyone senior on your mother's various teams? Anyone you especially trust, or find easy to talk to?
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Love4ever Nov 15, 2018
Per Webmd...

"Spinal stenosis is a condition, mostly in adults 50 and older, in which your spinal canal starts to narrow. This can cause pain and other problems...

Causes
The leading reason for spinal stenosis is arthritis, a condition caused by the breakdown of cartilage -- the cushiony material between your bones -- and the growth of bone tissue."

It is the cause...

HOWEVER, I was unsure about the knee surgery because the other knee was bone on bone as well (she only had one knee replacement) and now she doesn't complain of any knee pain for either knee. And I've read of patients having back pain after TKR. I've done my homework. I put it out there because maybe someone has had a similar experience and has advice. Also with her having several doctors (ortho, neuro, and primary dr, etc.); realistically they won't come together to put the puzzle together. The ortho will only discuss the TKR, the neuro will only discuss her back, etc. They won't speculate what happened with other doctors. The primary dr unfortunately isn't much help. I feel as if her primary care physician should be able to help her manage this as well but I have no control over the doctor she has and I don't want that responsibility. Like others have stated...my mom has to do some things on her own.

But AGAIN, being on this forum is helpful because I can get feedback, gather my thoughts, and still help but in a way where everyone wins.
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"I am also very unclear...I asked would she ever walk again"

[thinks: goodness this is like pulling teeth..!]

Love4Ever.

When you ask the doctors "what prevents my mother from being able to walk?" what do they tell you?

Ask them to draw you a picture! Ask them to explain as if to their grandmothers! - I'm not being rude, it is a true saying that "if you cannot explain a concept to your grandmother you have not fully understood it." It will do the doctors no harm to lay out this information point by point.

Your mother is a woman in her middle age. She is not old. The spinal stenosis did not come from nowhere. Her physical condition did not come about by itself.

And if the reality is, should it prove to be, that the bulk of your mother's difficulty is psychological or temperamental in origin, then you need to consider stepping away for *her* benefit, not only for your own.

The reason I say this is that although there may be no organic disease to be identified as the original cause of her problems, she will by now be caught in a vicious circle of inactivity and decline. This most certainly will cause organic disease if it hasn't already. To reverse the vicious circle, its elements must be identified coldly and clinically so that they can be realistically addressed. And it is possible, don't you agree, that your presence is getting in the way of that?
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Love4ever Nov 15, 2018
Countrymouse,

I am being very clear in my responses. If it feels like pulling teeth perhaps you shouldn't respond. Try rereading what I wrote and infer. I said spinal stenosis can evolve from aging, arthritis, and degenerative disease of the bones. She had surgery and now she needs therapy. My presence would not interfere. If you've had experience with the healthcare system in the U.S. or even experienced a hospital stay there are many nurses and staff to deal with and that is difficult for a person on pain meds coming from two major surgeries to navigate. I am not interfering, that is advocating.
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I know you probably won't follow my advice, (I understand) but I'm going to say it anyway in hopes that maybe you just need to hear someone else say it. Walk away. Do it! Your priority needs to be taking care of yourself and your child (children). And no matter what you do, it will never be enough. I don't know your age, but if your Mom is only 63, you are too young to be giving up your life for your Mother. If you continue caregiver at the level you have been, everything else in your life will suffer. It will suffer to the degree that it will cause permanent, irreparable damage. Your job, your relationship with your children, and your children 's well being. Your mother doesn't need you like your children do. Walk away. If she needs help, there is help out there. She will find it If she needs it. There are people who will help her find it. Limit your time with your Mother to lighter things, like having lunch with her once a week and talking about what's going on in your children's lives, and other family things. Your mother should be more concerned about you and your children. She should not want to be a burden to you. She should want to share good times with you and want somebody else to help her handle her problems. This is your life. She already had hers. Walk away. (When I say walk away, I mean from the caregiver responsibility. Not from the personal relationship, obviously. Unless you want to, of course. In which case, that is entirely your decision, and wouldn't mean that you are a bad person.). Your children need you now. No one else can be their Mother, but there are a lot of people who can take care of your mother.
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H'm.

Love4Ever I am baffled.

Your mother's doctors, with whom with her consent you have discussed her condition, say that with therapy she should regain the ability to walk.

To return to the question of "we honestly don't know why" she cannot walk.

Do you not like to ask?
Do you not understand the answer?
Do you find the doctors' answer unacceptable for some reason?

For how long has she been in such poor health, if you go back to its beginning?

What other investigations have been suggested? How is your mother's physical and mental health, when you look beyond the mobility issue?
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Love4ever Nov 15, 2018
I am also very unclear...I asked would she ever walk again (more than 20 or 30 ft) in any capacity even with the aid of a walker without feeling weak or a fall risk and I was told yes, over time (maybe a year or so) she should be able to walk. They couldn't give me a definite answer because in reality no one can give answers with complete certainty. However, they emphasized the need for consistent therapy which sadly she is not getting due to insurance. But honestly I think my mom's lack of motivation, maybe a little learned helplessness, and pain may be the cause as well. I also don't understand why her knees give out and why it seems like she struggles to stand. Her health decline seemed so sudden and unexpected.
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If your YOUNG mom is willing to abdicate on herself and her own needs, it will not be kind or helpful for her if you and/or your sister are willing to knock yourself out doing what is HER JOB.

What she is telling people is NO REFLECTION on either of you, and your first job rehabbing YOURSELVES is to allow yourself to embrace the fact that if she’s OF SOUND MIND that means that she has to USE IT OR LOSE IT- HER life, HER condition, HER interactions with caregivers, therapists, etc.

This approach does not signify that you’re being mean-selfish-unkind-whatever she chooses to call you. It means she’s a GROWNUP with a job to do so that she can restore herself to her best potential.

If you and your sister are willing to fall for her manipulation you add to her problem and create another problem for yourself. If you are willing to perpetuate this failing cycle you have to assume your role in it. Hard? Sure is. Although my situation is different from yours, I work with a therapist who is directive and very helpful. She offers me tools and I use what I find helpful and discard what isn’t.

MY MOM was 89 with mild dementia when she broke a hip and rehabbed to walk well enough to get around with a walker.

HER SISTER had the same hip replaced TWICE in two months (first surgery failed) and was. O bile and outgoing u til her death at 90.

Don’t walk away- build fences, love her dearly, but don’t let her be your victim. However hard it is to force her into independence, it will be no favor to her to let her be less than the very best she can be on your own.
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Make a list and your own schedule of when you can help out.
Don't try to do it all.

Is there anything you enjoy doing with Mom? Lunch out, a short shopping trip?
Keep your visits short, then shorter.

Be kind to yourself. Then, be kind to Mom. Read about how to detach with love.
Is your Mom or sister a narcissist? Read up on that.

Get Mom caregivers, as you back away, if that is shat you decide to do to save your own sanity.

You will be fine if you can implement even some of the advice already written on this forum.
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Sorry you are left in the dark. Is there something about her diagnosis that your mother is not telling you?
Can you get a second opinion from a neurologist, go with her?

When she calls you to come over instead of calling the friend, you send the friend over. At first visit, you can meet there, and then leave Mom with the paid friend.
It is understandable wanting to save money by calling you. It is just not possible for you to do it all the time. Her care is more than you need to handle by yourself.
Practice answering Mom: "Mom, I cannot possibly do that".

Once, I read on this forum, a woman who could not walk, was in rehab and uncooperative, would not do the exercises. After months, it was determined she had a fractured pelvis. With osteoporosis, fractures can occur spontaneously.

Keep looking for the real reason/diagnosis the she can't walk.
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When you say you honestly don't know why your mother is unable to walk.

Is that as in, nobody knows, it is a medical mystery?

Or is it as in, your mother's not saying and she's entitled to her privacy?

I'm afraid this will sound like prejudice, but in your particular circumstances I think it might be only relevant - may I ask how much your mother weighs, approximately?
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Love4ever Nov 14, 2018
I've talked to my mom's doctors with her consent and they say with therapy over time she should be able to walk. But she seems to be weak at times and her knee joints do give out. Then, insurance will only pay for so much therapy and she can't safely exercise at home. She is reluctant to do outpatient therapy because she has to be assisted with personal tasks. My mom does has arthritis and may be in pain. Sometimes I think she is acting helpless but she actually may be in pain or weak. Also, my mom is overweight but I have seen people almost twice her weight (same age) with less mobility issues.
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No one can do the hard work of therapy but your mother.

But your comments and reactions seem over the top.
Three months off. Wrong surgeries. Throwing the hospital and rehab staff under the bus. Toxic family.

I’m so glad you are questioning your activities in caring for your mom and her request that you live with her.

You've already had a preview of how she will behave.

“the most likely predictor of future behavior is past behavior. “

I assure you that anyone that knows your mother has figured out that it wouldn’t be easy being you. I wouldn’t worry about what others think in regard to her comments. I assume she didn't make you and sister independently wealthy so you appear to be appropriately concerned for your work. What’s next...all my daughter cares about are her kids.....it will never be enough.

My advice is to find a therapist and commit to at least 10 sessions. Look for one with the same intensity for yourself as you would look for one for mom if she had given you that assignment.

You don’t have to abandon your mom and sister but you have to find balance. What you are doing isn’t working and isn’t appreciated.

Start over with your sister and make her your partner with all things mom. Your partner. Not your assistant.
Know that you are vulnerable to moms comments and put the brakes on when you see yourself ramping up your response with whatever perceived problem mom has.

Check to see if you do this same thing in other parts of your life.

By writing your post you are showing signs of already being on the right track. Sometimes we can see the problem but we dont have the tools to take more positive action.
Hopefully therapy can help you figure out how to temper your reaction, how to identify your goals and responsibilities and discern right action.
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Love4ever Nov 15, 2018
Hi 97yroldmom,

You said, "But your comments and reactions seem over the top. 
Three months off. Wrong surgeries. Throwing the hospital and rehab staff under the bus. Toxic family."

I am not quite sure how to take this statement so I'll just explain...I took 3 months off using FMLA. I am entitled to this time and it is to help your family.
I questioned the surgeries because my mom never complained of backpain and I read that knee surgery can have complications and lead to other problems in the body including the back.
Some staff in the hospitals and rehabs weren't doing their jobs and it was addressed. My family has our ups and downs, no family is perfect and I added that we have a very small family. I mentioned those things to get feedback and determine next steps. Your post was very helpful though and I thank you for your advice.
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You need to set boundries. You have your own family to care for. Take sister's attitude. Mom can care for herself and needs to. Tell her if she needs something call the friend. Just make sure Mom has the things needed to be independent. Shower chair, handheld shower head. The dollar stores have plastic soap holders and stuff that stick to walks. I did this for a friend. Bought a toothbrush holder. Held her shaver and bottle of shampoo. Another was a soap holder.

Tell Mom she is not going to improve if she doesn't do for herself. Like I said, Medicare will OK therapy in the home if dr. warrants it. There is a waiting period after time in rehab. Hopefully you have checked with her doctors on her recovery and what she should be doing to help it along. She is responsible for herself. Be there for her but don't be a doormat.
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Thank you to everyone who responded! Your input is very helpful. I wanted to add that my mom isn't in a facility at the moment. She is living at home alone. She has a home health aide that comes 5x a week for 3 hours a day and no one on the weekends. She has a medical bed, wheelchair, power chair, walkers, and various other medical supplies at home. Does this change anything? I've never dealt with anything like this before. I go over to help on the weekends and a friend that lives nearby is willing to help on weekends so I can get rest. She charges $10 an hour but my mom never calls her and wants me to come over but I'm tired :(
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Your mother is *63*.

She is not by any stretch old.

How does it come about that she is content to be so completely dependent on you and your sister not only for support but for managing her life and her care?
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Spinal stenosis is very common, especially in your mom's age group, and is sometimes referred to as "Baby Boomer Back". If it was causing paralysis, the operation was a very good idea and has a really high rate of success. Also, bone on bone is really painful so I bet the knee surgery was a good idea too.

Your mom's walking might improve if she stretches, walks and exercises. But that is up to her.

As long as she has no cognitive deficits, she should be making her own phone calls, arranging her own care, taking care of her own bills. Spend an hour or two on this website reading about other people's experiences with caregiving. I think your sister has the right idea. Don't do things for her she can do for herself.

If you are working, maybe the Employee Assistance Program at your job can get you a few sessions with a counselor who can help you decide where your responsibility for your mom's health and welfare begin and end.

Do not move in with her.
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Love 4 ever is not about coping with anything and everything forever. Your mother is too young to be acting so helpless. It is very possible that this is only too obvious to the staff in the facility, and this is making them less than sympathetic to what they see as a difficult resident and an over-indulgent family. For you to be ‘filing complaints’ with ‘heated confrontations’ can’t help the situation either. You and your sister have been working well together until recently, and you don’t want to jeopardise a relationship which matters - your family is quite limited. You need to consider what is best for three people, yourself, your mother and your sister. It’s hard for your heart to balance the pluses and minuses, and your head needs to take over for a while. Talk it through with your sister while you are still on reasonable terms. Look after your head! Let your heart take a back seat until it sees the results of a logical decision.
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I agree. Mom is not that old. She is in rehab, hopefully that will give her more mobility. I would not move in with her. Your children do not need to be around this kind of person daily. You need to tell Mom you will do as much as you can but your job and children come first. She might have to depend on sister a little more. I don't know why you fight with the staff but it seems Mom can take care of herself, let her.

Mom has to be independent as possible to recover movement. The more she does for herself, the better. Medicare allows therapy ever so often if dr. Finds she needs it.
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Dear Love4ever
I am sorry for your situation.
I understand burnout, it is life consuming and life changing!
Your mother is young, and if you don’t change something you could be doing this for a good part of your life! You need to take a step back and consider you and your children! That should come first. And by stepping back maybe your mother will notice all you HAVE done for her! She should understand you have a life and you are a mother that your family comes first!!
I am working on not being guilted into things or feeling bad by putting myself and family first. Try it!
she is NOT solely your responsibility
Good luck
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