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.
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
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.
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.
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.
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.
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.
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?
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.
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?
[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?
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.