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Hello All. My 79-year-old mother is in her 3rd nursing rehab stay since July this year. She is getting increasingly weaker as she started using a wheelchair since her bilateral knee replacement 5 years ago-doctors warned her, "Use it or lose it." "Walk." She lives alone. I set her up with PT and OT and a personal assistant after her first and second stay. She 'fired' PT and OT and only allowed the assistant in for 1-2 hours a week. She is non-compliant with her heart meds and diuretics. She lies in her bed all day except when PT comes at the center. She says the chair is uncomfortable. She won't go to any activities, doesn't want to go for a drive. Just watch TV in bed and eat. The first stay she left walking 20 feet with a walker, the 2nd stay 10 feet. She refuses to use the safe bathroom at home where her wheelchair/walker will fit and uses the unsafe bathroom where she must hold on to counter and towel bar (as wheelchair/walker won't fit and falls (refuses a cane). We are not close, she did not raise me, and my grandmother did. I want to help, but it's like she won't help herself. Today, as I said, she is back for a 3rd stay in rehab. I went to take her clothes and saw she refused assistance from the MA to get out of bed and use walker to get to toilet, instead she defecated in her Depends and told me the MA said it was okay, that it was her job to clean her. I told her if she can't walk, how she expects to live alone with no help 24/7. She was only home 2 days before she fell and then couldn't get herself up out of a chair and called 911. All doctors have said the same thing, her only issue is "deconditioning" from lack of exercise/walking/etc. But she won't listen. It is like she is content to lie in bed and have people wait on her at rehab or scoot around in her wheelchair at home. I'm at a loss. I am toying with idea of moving in with her, but I have to work 5 days a week, I have a tricky back and shoulder and new heart issue (palpitations, chest pain) from leaky valves. I'm scared I may be signing up for more than I can handle, especially if she is more and more non-compliant. I was the one taking her to get her knees done. I have been getting her groceries for about a year, taking her to doctor visits, helping with home repairs/cleaning/etc. I believe she has a fear of falling. I get it, but what to do?

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Hi Sibyl! “I'm scared I may be signing up for more than I can handle, especially if she is more and more non-compliant.” You are most correct. Please do not move in, especially with the health challenges that you are currently dealing with. It seems like your mom is waayyy past being able to live outside of a facility. She needs the help and monitoring that they can offer. Praying for you as you make these decisions for her care.
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Sibyl7 Nov 25, 2023
Thank you for your input, "It seems like your mom is waayyy past being able to live outside of a facility. She needs the help and monitoring that they can offer." These are the answers to questions running in my mind-like how to tell when a parent needs facility care. How much is too much expectation, etc. Prayers are always appreciated.
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You already have a heart condition.
While we must each make our own choices, and each be responsible for those choices, this would be very bad decision making on your part.
Your mother is determined now to be waited on the rest of her life.
Nothing on earth will ever change that at all, and frankly, at almost 80 and not participating in rehab for 5 years it is way too late.
Your Mom needs to enter care, and you need to stop enabling her not doing that.
You need to sit down for an honest talk that you have a job and will not be taking care of her. That she will never live with you and you will never live with her.

Or, make the choice to live with her. Likely you will pre-deceed her. She will THEN go into care. If you do live through it your health, both mental and physical will be in ruins.

You need to embrace your limitations. As an RN for my job I knew full well I could never to 24/7 care. And no one WANTED me to. When this is expected of you by parents that SAYS IT ALL right there.

That's my advice. As I said, you will be responsible for making your own decision. We are all grown ups. You know the picture, because you just painted it for us quite beautifully.

I hope for you to make the right decision here. You have my very best wishes no matter what you choose.
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Sibyl7 Nov 25, 2023
Thank you. Your bluntness really jolted me into some clarity.
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Moving in with her or moving her in with you would be the worst decision of your life.

She is the one whose condition has deteriorated, and it's because she wouldn't help herself. Why should you take on her care, inconvenience yourself, and destroy your own health when she didn't think enough of herself (or you) to prevent this situation?

She is the one who needs to make the change. Hi ho, hi ho, to managed care she goes. She will have the 24/7 care she needs, and you'll be able to recover from the burden she has heaped upon you. It doesn't matter if she wants to do it. She does it.

I wish you luck in dealing with this sad situation.
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Sibyl7 Nov 25, 2023
Thank you for taking the time to reply and point out things that I was truthfully feeling ashamed for feeling. Lots of difficult emotions flying around.
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Like they say " You have to Put on Your Oxygen mask first On Order to help someone else because you dont want to go down with the Plane or sinking ship . "
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AlvaDeer Nov 25, 2023
Sibyl, You didn't cause this for your Mom and you can't fix this. Guilt is out of the question. Grief is the more appropriate G-word. Not everything can be fixed. You are not a Saint. If you were we would fill you full of arrows, and pray to you for eternity to fix everything. Throwing yourself and your own life on your mom's funeral pyre helps no one.
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Thank you for the perspective. I don't know why I would think she would improve if I started this journey.
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AlvaDeer Nov 25, 2023
I can guarantee you that you are right there. It will get worse and worse and you will be stuck in it, having painted yourself right into the proverbial corner.
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You are new here, Sibyl, and won't understand how rare it is that we all agree with one another. Often I am off giving out my lashings of tough love while others are full of sympathy. Again, it is rare we all agree.
Please don't do this to yourself. As bad as you can begin to imagine it to be, it will be ever so much worse. Stick around here a while and read up. You will see.
My best out to you.
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Sibyl7 Nov 26, 2023
Yes, it is a strange phenomenon how I started to feel extreme pressure that I needed to do this. Almost like reverting to a child and doing what was told, being the 'good, obedient girl'. I am SO thankful of finding this site-I am overwhelmed and you all have come in and helped me get some footing, not feel so alone, offer valuable advice in so many areas. Thank you all!
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I am not passed threatening. "Mom if you don't improve you will have to be transferred to the Long-term care. You can no longer care for yourself and you can't expect me to do it. I have a full-time job."

While she is in rehab have her evaluated for 24/7 care. Make sure you tell Rehab that there is no one in her home to care for her. You must work so you can't be there. If you don't hold POA tell them. If its found she is 24/7 care then she has no choice but to go to an AL or LTC depending what she can afford. Medicaid will help pay for LTC if she fits the criteria. Once its determined she is 24/7 Rehab can not release her home unless 24/7 care is put in place at home which will be very expensive. Its called can unsafe discharge.
Do not give up ur life for a woman who did not raise you. The State can always take over her care. She is making her own problems by not doing what she needs to do.

Do not allow Social Workers talk u into caring for her saying there is help out there. Once you walk out the door with Mom, they will not be available to help u find that help.
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Sibyl7 Nov 26, 2023
Thank you for this info. I am trying hard to learn the system. She has Medicare and Medicaid and we finally got her Medicaid switched to LTC type, if needed. It has been a cluster due to dropped balls an the timing of her admissions falling around time of her annual renewal and Medicaid being back logged and late, on and on it went since August. I do not hold a POA. Some social workers have said I should get one, but I fear what it may further obligate me to, so I have an appointment with an Elder Law attorney. I did not know this: "Once its determined she is 24/7 Rehab can not release her home unless 24/7 care is put in place at home which will be very expensive. Its called can unsafe discharge." And I did not know the State would/could take over if needed.
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The fact that you say you’re a new caregiver is frightening. You are not, and cannot, be her caregiver. Don’t call yourself a caregiver.

As JoAnn said… lay down the law. She probably assumes you’ll do for her. Make it clear that it’s up to HER if she wants to improve. You can’t do it for her and you cannot take her in.

Don’t even think about living in the same house with her!

You can’t help her since she refuses to help herself. You’d be the one cleaning poop diapers and waiting on her hand and foot. 79 is old but not ancient. She could live another 10-15 years. Once you’re in the same house, she won’t be out of there until she’s taken to the funeral home.

She didn’t care about raising you and she is not going to care about you now. If you’re hoping for an apology or reconciliation, it’s not going to happen. I’m sorry she is so selfish and uncaring.

Social workers (God love them; it’s a rough job) will try to convince you to bring her to your house. Do not budge!
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Sibyl7 Nov 26, 2023
Thank you! Yes, the social workers, physicians all make this assumption. One starts to feel like a really awful person and second guess what one should do.
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Sibyl,

Your mom hasn’t cooperated with her physical and occupational therapists or perhaps she doesn’t have the ability to do so.

Schedule a meeting with the facility staff, ask them for their opinion on your mother’s capabilities. Make sure that you tell them that you will not be caring for your mom once she is discharged from rehab.

Your mom will need around the clock care. I can tell you firsthand that this is a very difficult task. You will most certainly regret it if you become her primary caregiver.

Please speak to your mother about entering a facility. Do not allow her to believe that you are available for her as her primary caregiver.

This will allow her to receive the care that she needs and you can remain her daughter, while being an important advocate for her in a facility.

Best wishes to you and your mom.
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Sibyl7 Nov 26, 2023
Thank you. Exactly what I am doing this week, scheduling that meeting. I have spoken with 2 of them informally during prior admissions, but I agree I need to have an official meeting for an honest picture and plan of care.
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Sibyl, do not, DO NOT under any circumstances volunteer your life away to become your mother's caregiver.

Your job is to take care of your health and earn what you need to towards retirement.

Your mother needs something very different than one untrained, not very strong caregiver. She needs three shifts of CNAs and therapists.

If your mother had normal cognitive function and was afraid of falling, she'd tell you that. Something else is going on, maybe dementia.

Talk to the social worker at the facility about how to get the psychiatrist who assessed their patients to see her. She needs a medical opinion about whether she's just stubborn or if something else is going on.

She needs Long term care. Not for you to move in and try to force compliance. That will end disastrously.
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Sibyl7 Nov 26, 2023
Thank you. I will speak with the social worker about this. I can't help but feel there is something mental that is being missed. I see from all the replies from members here that I have had expectations so out of perspective to what this could mean if I moved in with her. I do indeed NEED to work until my full retirement or more so I can financially take care of myself and have good supplemental insurance for myself as I age. It is just me after all.
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"toying with idea of moving in with her".

Please think that though.

You, providing all physical & emotional care for your Mother.

Her, bedbound, watching TV.

To me sounds like mood & cognitve function should also be evaluated. Depression? History of mental illness? Stroke, diabetes, kidney function, heart issues - any plus more could be effecting her will/ability.
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Sibyl7 Nov 26, 2023
Thank you. Her cognitive work-up is within normal range. I have spoken to NP about depression/anxiety disorder possibility. She will see her next.
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[I accidentally drafted this before seeing the other replies. Sorry! A few additions before I post what I drafted...
* I agree 100% with NeedHelpWithMom that you should schedule a meeting with staff rather than trying to puzzle through this all on your own.
* JoAnn29 is right that you should at least spell out the implications of not trying. (e.g., Mom, if you cannot walk you will live out the remainder of your life in a nursing facility. ). And if mom isn't otherwise ill, remind her that many people dwindle over *decades*. Sometimes the elderly engage in wishful thinking that they will be dying soon.
*AlvaDeer's read of the situation as one where mom *wants* to be waited on sounds right based on what you've shared.
*Finally, yes, once you walk out the door with her, you're "it."]

The original draft...

Is it possible she's just not able to think several steps out the way you are? This needn't even be cognitive decline; it could just instead be a psychological block given all of the challenges.

Is it possible that the chair really *is* uncomfortable? When she sits in it do her feet touch the ground or dangle? How does it feel when you sit in it? If the seat is hard, maybe a cushion? Is there a wheelchair with locking brakes she could sit in rather than the chair?

You're right that she really does need to at minimum be sitting up for part of each day before she loses all of those muscles. It may be necessary to slowly increase time in the chair. Maybe just for meals to make it a regular thing? If the staff aren't willing to do that (no shade; I know everyone is busy), maybe the doctor could be persuaded to make it part of the official orders?

At home [if it comes to that], can the towel bar be replaced with a grab bar? She could still hang a towel on it. (It needs to be installed into studs of course--but generally this is also true of towel bars, so the placement should be the same.)

Others will probably tell you not to take her home. Sorry I'm not able to offer any advice in this area (I have experience only with SNFs, not NHs.) 

It is perhaps a blessing that she is content in the facility, and able to move her bowels while lying down (versus succumbing to horrific constipation).

But if you can get her into a wheelchair and stroll through the nursing-home wing of the facility, that might be a helpful wake-up call. 

Might she be willing to move more if she felt safer? If yes, you could get her one of those super wide gait belts with handles all the way around. Maybe also a comfortable padded helmet. Use a sharpie pen to write your name and phone number on everything.

Good luck to you.
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Sibyl7 Nov 26, 2023
Thank for all these observations and suggestions. A few have been pondered and addressed, like making comfortable seating and encouraging her to sit in her wheelchair-at least for a meal or two, a 'tour' of the nursing home wing. Not successful with these. You have given other things I can check into and try.
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Sibyl, two of the hardest things I ever faced were placing a parent in long term care because I could not be subjected to him crapping in a depends when he was fully capable of using a toilet. I couldn't live like that and I wouldn't ask that of my husband and finding out that I could NOT care more about his well-being then he did.

So you know, that was the deal, "Dad you can live with us if you can toilet and shower yourself. " then the argument in rehab about an OBVIOUS loaded depends. I knew right then it would be a living he'll if he ever moved in. I mean he was arguing with me about the deal breaker before he had moved in. Waving red flags that I paid attention to, you have them in this situation, please heed them, for your sake.

I think it is a natural response to want to help our parents but, we can NOT help them when we care more then they do. You can not forgo the rest of your life because of her choices. She will be taken care of in a facility and you can be her advocate and daughter, saving you much heartache.

This is never easy, breathe and don't make any quick decisions. You will be happy that you took the time to really analyze the situation and choices available. Mom may not like them but they are not her choices to make; crapping in her diaper and thinking anyone is okay dealing with it is her choice, think about that.

You will be okay and she will get over being mad about permanent placement, just stay strong.
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Sibyl7 Nov 26, 2023
Thank you so much. Coming to this forum was the best thing for helping me begin to sort through this. Having people who understand and yet are objective and pointing out things that have gotten lost to me in my sea of emotions and self-judgement.
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Sibyl, when you say "cognitive workup"...

1. A quick "who is the President, what day is today, where are you"?

or

2. A brief formal assessment like SLUMS or MoCA?

or

3. 3 hours of neuropsych testing.

The last is the gold standard for assessing cognitive function. My mother scored well on the other 2, it was on the neuropsych that revealed her lack of planning ability and executive functioning.
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Sibyl7 Nov 26, 2023
Oh wow!! Great info! Thank you! I think they mentioned this MoCA. I will find out.
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Aside from all else I said in cautioning you not to take on care of Mom at home, do know that this "being afraid to fall" is likely a good diagnosis of yours; with all ELSE that is going on your mom is almost certainly afraid to fall. This results in looking downward while walking, taking tiny steps, and etc. The loss of balance happens even when there is nothing else medically wrong for us elders; I guarantee that at age 81 as I have it! I weigh more than ever in my life at 145 pounds, and at 5'7" I am an active person who walks daily. I do balance exercises daily as well. Nevertheless that lower brain is quite changed, and I feel like a feather in the wind on a moving bus. It happens. And it does tend to strike fear. I have had two falls in the last few years, both in stepping backward, once over a rake in garden and once over a mop in the house. You tend to be cognizant, and at worst you become AFRAID, which hinders movement.
The physical therapists are almost ALL very aware of this. It is what they deal with daily in our jobs. You cannot change that lower brain and elders WILL fall no matter WHAT they and the medical system do to try to prevent it. It's a given. You can try to understand this, but you can't much change it.
Wish you luck.
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Sibyl7 Nov 26, 2023
Thank you for sharing your experience and this medical physiology. "You cannot change that lower brain and elders WILL fall no matter WHAT they and the medical system do to try to prevent it. It's a given. You can try to understand this, but you can't much change it."...more perspective. This is what I need, honest perspective on expectations. I am having that official meeting with PT at the facility. Witnessing my mother's decline has made me realize the importance to start now with balance and mobility geared exercises for myself, as well as the financial planning of a good LTC insurance policy. A new life phase I am entering. Seems surreal but it is here. I wish you the best.
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As I replied to AlvaDeer, it is a strange phenomenon how I started to feel extreme pressure that I needed to do this. Almost like reverting to a child and doing what was told, being the 'good, obedient girl'. I am SO thankful of finding this site-I am overwhelmed and you all have come in and helped me get some footing, not feel so alone, offer valuable advice in so many areas. Thank you all! For the first time in a while I can exhale for a moment. Tears of gratitude.
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AlvaDeer Nov 26, 2023
You are so very welcome.
Do stick around, and read, and help others.
Thank YOU for being so responsive. Some write us questions and we never hear a peep, so it is a pleasure for us to have someone responsive.
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Sibyl, great big warm hug!!!

We have ALL faced the challenge of an aging parent and it truly is a learning experience in finding out how little we know about it.

I recommend that you contact your local area on aging, aka county counsel on aging, and start looking into the resources available for your specific situation. Discharge will come suddenly and it helps to know what options are available.

I placed my dad in a board and care home, it was thousands of dollars less per month, didn't have amenities that he would not use and had a better caregiver to patient ratio 2 to 10. Bed bound to full blown dementia and everything in-between. My dad had good housemates and did find contentment living there. Unfortunately, I think seniors are not really ever happy with their changed circumstances and the best we can hope for is they adjust and accept. Usually when we are not present, when we are present it is usually a whirlwind of how dreadful everything in their life is, it's a prerequisite I think. Make your kids feel guilty because you got so old that everything changed, must have something to do with control.

You got this and you will be just fine on this journey. These forum members are a lifeline in these situations, so happy for you that you found us BEFORE the move.
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Sibyl7 Nov 27, 2023
Yes, it is a huge learning curve. Will check out these board and care homes, not familiar with this concept. Thank you! Yes, this forum has already proven a lifeline indeed.
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It sounds like mom should not be living alone.
I would stress that to send her home would be an "unsafe discharge" and that the search begins for an AL facility that will meet her needs.
This would relieve you of the pressures to get groceries for her and if she is cognizant most facilities will transport residents to doctor appointments. (obviously if she needs help and does not understand what the doctor is saying you would have to meet her there.)
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Sibyl7 Nov 27, 2023
Thank you. Agree, she must have help at home more than a couple hours a week. Looking into that and the other option of LTC.
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Sounds like she needs permanent placement and not with you. A tricky back {got a damaged one myself} will not hold up . Let the facility know you can not care for her and see what they offer. We did that with my mom. Good Luck
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Your mother's problem is mental, not physical. Do not move in with her or cater to her.
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DO NOT, I repeat, DO NOT take on this enormous responsibility. Oh, how I wish I had someone to impart that wisdom to me! I am now a trapped rat in my own home with my 94 yo mother (thankfully I am single and childless). She REFUSES to walk, exercise or use her Rollator as it is intended. She sits in a wheeled dining room chair and pushes the Rollator to get around; thus, trying to maneuver TWO apparatuses at the same time. Makes no sense, but her OBSESSIVE fear of falling will not give her brain permission to stand erect (unless no one is watching, of course - the minute she sees you seeing her standing she immediately goes into her herky-jerky routine of being helpless. LOL). I had no idea how needy and demanding this otherwise totally independent woman would end up becoming. We were never close; I left home at 17 and had not been around her for more than a weekend visit here and there for the next 30 yrs; but for some reason she chose ME to take care of her - I guess she knew I would do the right thing because I am a reliable, dependable, honorable middle child a/k/a invisible lap dog. My brothers happily let me bear the burden of all of this because, well, they're males and that's what they do. If not for my therapist I would have murdered her years ago. I finally hired people to come in and "entertain" her a few days a week so I can reclaim what is left of my sanity. Frankly I did not expect her to live this long. She's been with me for over 7 years now; my hair is grey; I am old and have no life!
SORRY, I did not mean to make this about ME. I urge you to think long and hard about how this will affect your LIFE, your PATIENCE, and your SANITY. Once the Genie is out of the bottle, you can't put it back.
Good Luck and God Bless you.
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Dupedwife Nov 30, 2023
Oh my, LadyDi, I feel your pain and your anguish. You definitely sound like you’re burnt out. It’s time for you to seek alternative housing for your mother before you end up dying from a heart attack. Perhaps you should try to put your mother in a SNF so you can have some sanity and peace in your life.

If you continue along this path, your mother might outlive you. Don’t let this happen to you as you are still young and you have many years ahead of you.

Good luck.
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As you say: " I am toying with idea of moving in with her, but I have to work 5 days a week, I have a tricky back and shoulder and new heart issue (palpitations, chest pain) from leaky valves. I'm scared I may be signing up for more than I can handle, especially if she is more and more non-compliant."

[I see I mis-read, thinking she is / lives in a nursing home now.
It sounds like she needs to be permanently placed in a nursing home.
Have a social worker make these arrangements; you involve yourself as minimally as possible. All else I said below applies.]

* Do not move in with her.
* Yes, you would be signing up for more than you can handle.
* DO ask yourself why you are responding / behaving as you are ?
You are allowing old thoughts / old belief patterns 'run you' - realize this and then you will be able to realize you have a choice on how to proceed.

* At some point, we need to realize that we cannot do for another if they do not want / do for themselves. She has the support / assistance she could use. If she doesn't want to, that is up to her.

* Stop being a doormat / pushover.
* Learn to value yourself. As you do, you will assert yourself and learn that you not only can, you need, to set boundaries with your mom of what you can and will do. Be clear on what you REALLY want and can do. Write it down and present to her (if this helps).
- It will help you to write it down.

* If you think your back is tricky now - see how it might get if you do not set limits with your time (and emotions).

"This" is what you do. You stop and assess and learn to love yourself and set boundaries. Then, much more will fall into place, as needed. Basically, you take care of yourself, your health, your well-being, and let the care aides at the nursing home do what they do. You LEARN that your mother makes her decisions and then 'suffers' or otherwise, is left with the consequences of her decisions. The same applies to you.

If you are guilt ridden or doing out of the "I shoulds." STOP.
You need to become more aware of how you think, behave - AND WHY.
Give yourself a week off to meditate, get into therapy, something so you can reset. Your mom will do what she does, anyway.

Stop allowing her to run circles around you.
Likely this behavior / relationship has been in place for decades.
It is time for you to re-assess, after understanding what is running you.
If you do not do some inner 'soul searching' (and/or therapy), you will continue to do as you do. Likely, NONE of us here want to see that happen.

Gena / Touch
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MaryKathleen Dec 1, 2023
You are right on target. I just got home from my daughter's house where I see my Son-In-Law killing himself catering to his mother who lives with them, He has serious health problems himself and she doesn't care.
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A Geriatric Psychiatrist can prescribe medications that could fight mental illnesses.
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It seems like your mother is depressed. Speak to your mother’s PCP about her lack of motivation.
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It sounds like your mom may be depressed as others have mentioned.
However if she refuses to do anything for herself even with medications for depression I doubt much will change. Other than her continued decline.
If her fear is falling then she would probably do more with the help of OT and PT being there but she "fired" them.
Mom should not be living alone. Mom probably should be in a Skilled Nursing facility where there is staff that can help her (that she can't "fire")
In a SNF you will no longer have to do her grocery shopping and home repairs, cleaning and other things that I am sure you would rather do at your home.
DO NOT move in with her. You must maintain your life.
Her fall may be akin to the domino's that you set up and once one topples they all eventually topple. The speed of the toppling depends on her.
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Noooooooooo do not move in with her!
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Sibyl7: Do not move in with her as you're not well yourself.
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Stop trying to help her. She doesn't want to get better for whatever reason. I know what I am talking about. I am 89 and on my own, I got physical therapy on my own, and there are YouTube videos galore on exercises for seniors. My daughter's Mother-in-law is only 83 and she is like your mom. She will not help her self unless she is pushed, that gets tiresome. Remember the old saying "You can lead a horse to water, but you can't make it drink". For God's sake do not move in with her. You will just beat your head against the wall like my Son-in-law is doing.

Don't shop for groceries, use Instacart and have them delivered. Stop cleaning and repairing, hire it done. keep the doctor's visits on YOUR schedule. Oh, she needs to pay for those services. If she has no money call your Office on Aging. IHSS (In Home Support Services)is in many areas for people of limited means, If she does not want strangers in her home, my attitude is Suck it up Buttercup.

If I seem harsh, I see my 60 year old Son-In-Law who has his own serious health problems killing himself over an ungrateful bi*ch. I was just there tonight
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Don’t toy with the idea. Simply state you are not capable to give her the care she obviously needs. This is beyond your wheelhouse.
Mom, you have shown me signs that you think you can move forward and heal yourself without the help of the experts in physical therapy, etc…I sincerely have not seen much progress.., you and I need to tour facilities nearest us to see the programs and care they provide. The care you need is way. Beyond my expertise…
I am so sorry mom, I csnnot imagine listening to me, when you don’t hear a word from your daughter. Think about it. Let’s tour some plascs and have lunch and do a tour.!!!🥰🙏
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