I've been caring for my mom for over a year. I bathe her-which happens in the bed. I also help her with the toilet. How do I set boundaries?

I am caring for mother and grandmother. My mom is in bad shape. It is difficult and depressing. I’ve given myself a deadline. If she hasn’t passed by a certain date then I have to move her to LTC. I will still have my grandmother with me but she is more self-sufficient and easy going. I feel awful preparing for her to move when I know she won’t last much longer but I am well aware of the physical and mental toll this is having on the other 4 of us.

It is hard when you feel "stuck" with responsibilities you didn't "sign up for." Of course, you're angry at the loss of your freedom and feeling "stuck" in this situation. What you are feeling is loss and it follows along Kubler-Ross's stages of loss (look it up and it may help you).

You can not force your elderly mother to do her exercises, but you can make "time for exercise" part of her usual daily routine and encourage her to do "just a little more." I would suggest picking a time in the morning or early afternoon when seniors tend to be a little more compliant.

I would also suggest that you enlist more helpers to lighten your load. Ask help from family members (even out of town ones can pay for housecleaning, grocery delivery, or yard maintenance), friends (especially women friends that might be willing to give you respite), members of your faith community and/or paid help (if mom's finances/insurance can pay for it).

If you can not get more help, it might be helpful to talk to her doctor. The doctor may be able to prescribe inpatient rehabilitation in a residential facility. Your mother would get more "pushes" to do her PT/OT several times a day as well as 24/7 help with tasks of life that are difficult for her. If she does not succeed with rehabilitation, you can discuss with the doctor and staff opportunities for "next steps." This may give you back some of your freedom and more control of the situation.

It sounds like mom has no dementia issues and you've let her make the call on how many hours that she(?) will agree to pay for. That indicates she has money to pay for more, but chooses not to. That's the scenario I'm going with.

You are on 24/7 call regardless of what else you need to be doing. You tell mom that YOU need more hours from the aide. She can afford it financially and you cannot afford to do without it to manage the other 20 hours in a day. Go ahead and order additional weekend hours - 4 hrs each day, or 8 hrs on one day so you can get out of the house, sleep late behind a closed door, or whatever.

During the 4 hrs a day where you have an aide present, you let mom know that the OT/PT will begin again. Use 15 to 20 minutes of the aide time to have them do what the previous people had her doing. After several weeks increase the time. Since she was agreeable to do it for previous PT folks, maybe she'd be more agreeable with the aides. Or, call the home health people and get them started again -- keep gloves, masks, hand sanitizer at the front door for all visitors. My parent's nurse continued to come throughout the covid thing and these home health people ALWAYS wore protective gear.

I would also arrange the 4 hrs a day to start in the morning so you don't wake up to caregiving role. Let someone else get it started, give you some quiet coffee time to get ready for the day. If mom has enough money to pay for 8 hrs a day during the week, then go for that. 4 hrs in the am and 4 hrs to get her ready for bed. Many of us who post here don't have the financial means to get in home health assistance - if you do, then use it to get yourself some help. Don't think of it as help for mom - it is to help you. Repeat that to mom

You desperately need help whether mom likes it or not. Be firm and tell her she can either accept help in home or move to a facility.
Sounds like she is not keeping her part of the deal by doing her exercises.
You need your own life while you still have one.
Good advice below about working on a list. Sister can help pay for aides.

Sit down, have a glass of wine and write a list of what you are both able and WILLING to do. Then sit down with Mum and explain that this is all your work, personal health, and other commitments allow and discuss with her how her additional needs are best met and how she will also meet increasing needs going forward. You just have to get into the necessary mindset and decide you are going to get on with it and force yourself to do it. The sooner the better, because the more you do the more she will think you can do and are willing to do whilst being blunt the older and less able to do everything YOU become. Like so many taboo or slightly taboo subjects we put off doing these things when the conversations are easier and then we feel guilty about doing them or it becomes impossible due to our LO's health and understanding.

If she is at a point where she doesn't want to help herself, then she needs to go to a facility where three shifts of folks are trained and paid to help her with the things she no longer can do.  It really is that simple.  Just tell her...mom I am still working full time and do not have the energy to be a full time care giver and you are not able to do the PT to improve, so we are going to find a place for you. 

You killing yourself isn't going to change her prognosis.  Many folks "give up" after a stroke and if she has never been one of those determined, self motivated people, I doubt she is going to suddenly acquire those personality traits.  She may not even be capable...I don't know. 

Life is too short.   Ask your sister to visit for a week to help you scout out some LTC facilities nearby.

Sadly, I think a LOT of patients quit their PT once the 'in home' PT ends.

My mother never did a single exercise after her 'cute' PT left her to her own devices. Never. We had to throw away the exercise bands as they rotted in the sun and were actually dangerous.

All us kids kind of rode her about doing the set of exercises, but she didn't WANT to do them, unless the PT was there, and he had X many appts and then he was done.

As a result, she 'aged' very, very quickly. She went downhill from walking with the occasional use of a cane to a full time walker in a couple of years. Now she can't even go up or down one step. She is completely stooped over, her face is in her plate when she eats. Not tall to start with, she isn't even 4'9" now, if you measure her from 'highest point' to the floor.

She complains of back pain all day, everyday, but there's no surgery that can be done (age 90) to help her stand up straighter.

And I don't think she's unusual in this.

You very likely ARE coming to the end of your rope and that is what your anger has been trying to tell you. You have bumped smack up against your human limitations. It is time to consider placement for Mom. Possibly hospice. It sounds she is tired and she isn't wishing to participate in the hope of some minimal improvement. It is not too tiring for her and it is her life; sounds she is "over it". Speak with her about these things instead of becoming angry at her. Ask her if she has still the strength to battle on with Physical Therapy, or if she prefers to be left alone, acknowledging that end of life may come more soon with the things that being bedridden leave her prey to. It is time now to talk openly with you Mom if that is what she wishes.
And in any case, it may be time to consider that you have reached theend of what you are able to do with inhome care.

I grew up in a home where my mother took in her mother & was extremely angry about it 24/7, to say the least. It ruined my childhood and both of THEIR lives as well, and led me to vow that I would NEVER take a parent in to live with me, nor would I take on their care in old age. And I haven't.

When my dad fell and broke his hip, I had both of my parents placed in Assisted Living; that was back in 2014. Dad passed in 2015. My mother is still alive at 94 and living in the Memory Care bldg of the same ALF these days. I'm very glad I stuck to my guns with my original decision to never do any hands-on care for her b/c I'm sure I would not be the same person I am had I been caring for her all this time. She and I are oil & water and that will never change. It's been stressful ENOUGH having to manage her entire life from 4 miles away, as an only child, but it's a lot easier than having to do hands on care.

There is nothing wrong with admitting your limitations here and crying Uncle when you've had enough. Nobody benefits from you being angry all the time. Stress is a killer and you can wind up dying before SHE does. Don't be a statistic. Do what YOU have to do to either place your mother or hire 24/7 in home care for her. It's no longer a matter of what she 'wants' but what she NEEDS for both of your sanity.

By the way, I am not making a 'judgement' on you here in any way, shape or form. Just responding to you saying your patience is thin & you're angry, which I myself would be as well, given the same set of circumstances. Some people are cut out to be caregivers and some are not. I fall into the second category and have no regrets saying it.

Best of luck.

If you are feeling this way after only a few months of caring for her, can you imagine what you will be like in another 3 months? Waking up angry is a sign that you are probably beyond burned out, and that's ok. Not everyone is cut out to be a caregiver. It's probably time to be looking for the appropriate facility to put mom in, where she will receive the care she needs 24/7, along with OT/PT, and you can get back to just being her daughter.
And if for some reason, you feel you must continue on with her care, then you must have mom hire some more daily help, and you must take time away just for yourself, to do the things you enjoy, regularly. Without doing that, you will not be able to continue on this journey with your mom, in a healthy manner. Please take care of yourself.

The caregiving arrangement only works if it works for both parties. It is not working for you, and you should not feel guilty about this since you have been assumed into this responsibility and didn't really know fully what it would involve and didn't really have the ability to say no to it at the time you committed. You did what seemed loving and logical. But caregiving for the infirmed and elderly requires so much more.

If I were in your position I would give my mom a choice: either accept more in-home help (the amount YOU need to make the arrangement work) or you will help her get transitioned into a care community where she will get all the help she needs, and have activities and more social interactions. You may need to do this eventually anyway, but sometimes the in-home assistance helps in the "gap". You and she will need to be realistic about the financial aspect of her care. Neither you nor your sister should pay for any of her care as it will bankrupt you. She may need Medicaid, as elders often do. It would be a wise investment to have a phone conference with an elder law attorney who does estate planning and knows Medicaid for your state. Hopefully your mom has you (or someone) as her DPoA and has a Living Will and Last Will legally created. If not, this needs to happen asap. I wish you peace in your heart as you figure out what you are and are not willing to do.

If you’re not available to help, your mom will be forced to find and accept other help. You’re burned out, no fault of yours, but it doesn’t make you a good caregiver, just a worn out person. Your mother won’t make a move or accept another plan for help as long as you’re providing what she needs. Back off, don’t defend or explain, just tell her it’s time for another plan because you’re not available. As for the exercises, it’s extremely common for our elders not to do them. Their bodies are worn and tired, they have a hard time seeing the point or gathering the motivation. We had to learn that this isn’t the hill to die on. The bigger issue is changing you being the help. I wish you well

Does your mom live with you?

Is she bedridden?

Does she have dementia?

More information might help posters to give some more specific advice.

Best wishes!