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My mom was recently in the hospital and rehab, after we checked on her and found out she had been in bed for a few days, and had not eaten or taken her meds. She was very dehydrated and couldn’t walk. However, she kept calling me to pick her up and bring her home almost the entire time. She also refused to eat or cooperate with the physical therapy in rehab, so ended up back in the hospital, where she told the doctors she refused to go back to rehab and wanted to go home. So they released her! I requested they prescribe her a walker. My son picked it up from the pharmacy, then got her things from rehab, and picked her up from the hospital and brought her home. I spoke to the hospital staff and her regular doctor’s office, and they both said she refused to have a home health aide service set up. She just expects us to do everything for her, and we can’t. We work, and have our own lives. I get that she wants to be independent, but something has got to give here. Yet, I can’t force her to do anything, even if it in her best interest. I was told that it would stay that way until she shows signs of memory loss or dementia. I don’t know what to do at this point, and now have my own crisis to deal with. I guess all I can do now is wait.

Imho, many elders, though not all, remain stubborn when they require help the most. It's so frustrating. You're going to have set boundaries. If she chooses to remain independent, then you must not be at her beck and call since you already have a full time job, she is refusing care and you CANNOT accept another full time job.
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BurntCaregiver Mar 17, 2021
Unfortunately some seniors have to learn the hard way to get over being stubborn. They need some tough love from their families and that means not allowing yourself to be pushed around and bullied by them. Learning the hard way is sometimes the only way so do nothing for them until they've sufficiently recovered from being stubborn.
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There isn't much you can do while she is competent. I read in your profile that she is in a snf but write above that your son took her home. Does someone in the family have POA for her, if not pursue it now while she is competent. At the least she should make sure all the medical provider can talk to a family so there is an exchange of important information.

All you can do is tell her that you and your adult children have jobs and can't drop everything to come over and care for her. Tell her that having in home care would help her and you. Tell her you're worried about her safety at home and having someone there would be one less worry for you. It probably won't work.

Before my MIL went to A/L one SIL did most of MIL's care - but after she went on strike, the brothers split up time to care for their mother. My SIL eventually came off strike but the sons still had their turn. We took turns doing grocery shopping, laundry and such. I don't know if you have any other family around who can split up time with you and your adult children to take the burden off you. My husband usually ran his mother to her dr appts. Splitting duties spreads the burden around. I do know, however that care for a parent/s usually falls to one child.

Good luck and hopefully your mother will agree with and aide and it won't take a fall or some other emergency to get her to change her mind.
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We put my 92 and 96 year old parents in Assisted living 2 weeks ago and they are not happy campers. I'm an only child who lives out of state and have been running back and forth at the drop of a hat to care for them for the last 5 years and I am worn out. They both have dementia and need care, especially my dad. After my mom had a pacemaker put in a month ago, she has been more confused than ever. Either the anesthesia has accelerated her dementia or it's just taking forever to get out of her system, but that was our "sign" that they needed more care than just Home Health coming in 3 times a week. After both have had several falls and 911 calls have been made to help get them up, it was time. My mom and dad both complain constantly now that they are in AL that they want to go home and that don't need to be there. All family members and friends agree they need to be there so not sure how they will get out unless they hitchhike! :)
This has been the hardest thing I have ever had to do, but I do know that they are in a safe place that is lovely and the people are very caring and I can finally get a good night's sleep knowing they are well taken care of!
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cweissp Mar 10, 2021
Bless you and your family.
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We started out slow with my mom, and we went with a private group that my dad found at their retirement community. First it was someone to come in and do the heavier housework, then someone to do all the housework and cook, then someone to do the housework and cook and help my father who eventually died of COPD. After my father passed away, the caregiver stayed to help my mom. There were a few months when I was encouraging my mom to have 24-7 care, but she didn't want anyone there at night. There were a couple of falls after which the retirement community security team picked her up off the floor ( a regular duty for them) and she agreed to someone at night, then she decided she didn't need anyone again. After another fall in which she got her head wedged between the bed and the nightstand, she agreed to 24-7 and it has stayed there ever since. (My mom tends to crumple when she falls, so most of the falls didn't even result in bruising.)
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I had a very stubborn Mom too. So I waited it out praying everyday that she was OK. Mom was in her late 70's when my Father passed away unexpectedly and that was what advanced her into senile dementia and 5 years later Alzheimers. It was then that we were able to get outside help for a few hours and adult day care.

Yes, there is fear of losing ones independence and having to depend on family to care in later years. Mom never wanted to talk about her care until one day she called me telling me something was wrong with her and I needed to leave my job and care for her full time in another country.

However, the reverse happened. Hurricane Maria destroyed PR and I was able to bring my Mom to live with me. I now have full guardianship and I care for her full time at my home especially now during the pandemic.

I tell you my story so you know that time will pass and things will change. Hopefully your Mom will accept care and be able to live in her home for as long as possible.

In the meantime, I suggest that you begin communication with an Elder care lawyer for your Mom and also for yourself. I was fortunate to have a good lawyer that helped me with many aspects of elder care, financial and healthcare security for my Mom. I myself will be taking the steps this year to protect my finances and health wishes with an Elder care lawyer so that when my time comes I will be secure.

I do hope all this will be resolved for your Mom and your family.
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Let her know you won't be doing anything at all fir her unless she signs up with Home Health Care which Ins pays and they only send our a Nurse. Couome times a month and an Aide a couple times a week to help with baths if needed. They also will send a Therapist out a few times a week.

If she still won't Sign Up,
next time don't pick her up from the Hospital until she signs for Home Health.
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Oh the age old story of the stubborn elderly!! As hard as it is, you decide what you are willing to do within your current constraints and obligations. You both work. You don’t need another full time job. Tell your mother what you will do and then let the chips fall. She wants to refuse care and be "pseudo independent " then she will have to accept it. You need boundaries and not let her infringe on them. As Dr. Phil says, "you teach people how to treat you". Stop pandering now before it gets harder. Boundaries, boundaries, boundaries!
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BurntCaregiver Mar 10, 2021
You are right, Harpcat.
When children are being stubborn they're seen as unruly brats. They're bad behavior comes with consequences and punishments.
Same thing with the elderly. The stubbornness and bad behavior has to come with consequences. Those consequences have to be that either they work with the help that's made available to them, or go into a care facility.
The only way caregiving for an elderly person can work is if it's done on the caregiver's terms. Not the one getting the care. More times than not an elderly parent or even grandparent moves into their adult child's or grandchild's home and take over. They demand that everyone in the home is now their servants and they can behave any way they like. There has to be boundaries that are enforced. When there aren't any there is no respect either.
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My mother has a paid army at her disposal as well as my little sister. What they do is treat the caregivers so badly they quit within hours then say well I guess you’ll have to do it and they get what they want, family to take care of them. It’s very manipulative, controlling and a bit selfish as it runs our family members into the ground.
The extremes they’ll go to, to make sure they are in dire straits just bc their preference is to be cared for by family.

It’s obvious what they’re doing and they don’t care that we are burned out after 45 years of this. My empathy has been put to the test.
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BurntCaregiver Mar 17, 2021
MJustice98, I say it all the time that in order for caregiving to work, it must be done on the caregiver's terms. Not the care recipient.
My elderly parent like many expected to be waited on hand and foot and for me to become a slave that lived only to do their bidding. Nope.
Sometimes our beloved seniors need to experience a little tough love and learn the hard way. That means the family that gets pushed around refuses to lift a finger to help them in any way until they learn to keep their manipulating and nasty behavior in check.
Often it has to come down to either learn to cooperate with the help provided, or they get nothing and go to a nursing home where they will have zero control over their life and no choice about any part of it. This usually helps get an elder on board with the care their family arranges and provides for them.
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Rovana, I get your point. But haven’t we come a long way from a mental facility being a hellhole as you put it?

If we can put a LO in memory care or a nursing home or assisted living, then why can’t we place a LO in a mental facility? Aren’t there any nice ones in 2021? Or are we still living in the dark ages?

If I could send you pictures of my mothers house you would gasp. No she didn’t have any animals or feces or spoiled food but she hoarded everything else.

I had a hard time helping her because she would start getting nasty to me and then didn’t want my help. All I was trying to do was get someone to help her. That’s all I was trying to do.

My mother got kicked out of stores and OTB (off track betting) for her bad behavior. She would yell and scream at the workers and say that they gipped her out of 35 cents. Does that sound like a mentally stable person?

I could go on and on but you get my drift. I just thought in this day in age there would be more help for mentally ill people.
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NYDaughternlaw, I agree with you about her calling 911 for her mother when she needs to go to the hospital.

I also told the hospital that I can’t pick up mom and it is a unsafe discharge and that I won’t pick her up from the hospital. So they sent her home in a cab all by herself.
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rovana Mar 8, 2021
But what else could they do? They can't hold her prisoner and if she wants to go to her own home, what else could they do but let her go?
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It’s a crazy world we live in and the laws need to be changed. Doctors start need to listen to family members and not just the patient. But we have laws, so until the laws are changed we have to change the way we respond.

My 96 year old mother lived in her hoarded house alone refusing any outside help except for me and my son. She wouldn’t bathe or wash her hair or change her clothes. But since she was competent we couldn’t have her placed in a facility.

My son and I stopped being at her beck and call. We went to her house when it was convenient for US, not her.

I went over every Sunday and my son went over twice a week to bring her the mail and take out her garbage.

You need to limit the times you and your son go over to her house.

I understand you don’t want to go no contact but at the very least limit the times you go over there and do it when it’s convenient for YOU.
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rovana Mar 8, 2021
Please keep in mind the reality of treatment of mentally ill patients in the past. Often railroaded. The family just wants them gone but is not willing to face the guilt of just dumping. So they insist that the mentally ill person be locked away in a hellhole. Sounds nicer I guess. Inadequate treatment or none at all. But you ought to research the history here before condemning the patient's rights. Danger to self or others make sense as a legal test - but dirty old slob does not. People really differ a LOT in their tolerances and preferences. What is crucial to one person may mean little or nothing to others. Vermin, rotten food, fire danger - that is one thing, but hoarding could also mean just a lot of untidy clutter.
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You learn to say "I couldn't possibly do that but I will call a home care agency for you." If she says no then you say "Mother, you either agree to home health care or I cannot help you." If she throws a fit then you say "Mother, I will talk to you when you're feeling better." If she's well enough to be uncooperative then she's well enough to accept the consequences of not cooperating.

Do not send your son to help her. Do not drop everything that you have going on in your life to help her. Stand firm and be the broken record: "Mom, I can only help you if you agree to home health."

When inevitably she needs to go to the hospital again, call 911 and have her taken by ambulance. Picking her up from the hospital and bringing her home was a big mistake and one that should not be repeated. As long as you continue to rescue her she will continue to expect you to dance to her tune. Change the music!
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Ask her why she doesn’t want home health aids coming into her house? Ask her what the reason is. In my mother’s case, she was of sound mind but had mental illness. She had OCD and was a severe hoarder. Is your mother a hoarder too?
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Clearly your mother doesn't expect you to do anything for her. Otherwise, how do you explain that she was bedbound for several days - to the point of dehydration requiring hospital admission - without your getting to hear about it?

Has anyone succeeded in getting your mother to talk about why she is refusing rehabilitation or support at home? She has been assessed and found to be of sound mind: when a rational person is making these decisions, somebody needs to ask her why.

And not just out of curiosity, or for the sake of arguing with her. It could be that her reasons include beliefs which are false, or fears that can be allayed.
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Call her doctor and ask if he can order home health for her. Nurse will evaluate her needs and you need to be present for that interview. Ahead of time you tell mom that YOU need help and she needs to agree to whatever help nurse will send or she will have to move to a facility where she can get 24/7 care. Make it all about YOU. You need help. You need to keep her moving. You You You. Nothing about her.

Home health can arrange such things as nurse visits, Occ and Phys therapies to get her stronger, bathing assistance. Dr orders it and agency sends someone to set up schedule. Use it. Not much time with the patient, but it is a help
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I think the next time she goes to the hospital and the hospital discharge people call, you need to tell them that she has no help at home, that you found her in bed without food, non-compliant with her medications, and discharging her home is not safe. Tell them you are not her POA. And you need to tell your mother that you are not going to put up with her bad decision making. Tell her she needs to figure out a plan because you are not available. If she’s competent, as the hospital discharge planners seem to think she is, she should be able to manage on her own. If she goes to rehab you need to tell them the same thing. That you are not POA, she’s supposedly competent, and so on.

I KNEW my mother was experiencing dementia and poor decision making yet it seemed to be invisible to everyone around her. I contacted adult protective services several times to report my concerns, and they found her to be making good decisions. I tried multiple interventions all which ended in disaster costing me money and time and a trip to the ER for myself after having a panic attack (there’s a history of abuse)! I was accused of all kinds of treachery for merely making reasonable suggestions. I completely backed off.

Sometimes all we can do is stand back and wait for the crisis to happen. It’s not easy because we feel like “bad” children. And we want our parents, even if they were bad parents, to not suffer. My mother was cycled through the hospital for various serious health issues multiple times with short rehab stays before she was found in a complete state of filth and confusion.

Stand your ground and don’t let yourself be run ragged.
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Reply to Mepowers
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"She also refused to eat or cooperate with the physical therapy in rehab..."

THIS will result in discharge on its own. Medicare will not continue to pay if someone isn't making "progress." Since she refuses to work with PT and/or cooperate, rehab isn't going to be where she ends up.

"I spoke to the hospital staff and her regular doctor’s office, and they both said she refused to have a home health aide service set up."

If she is considered competent, she can refuse. Whoever "WE" is needs to stand firm and all together tell her we have to work and CAN'T be here to assist you every day. You can determine before this discussion what you all will be willing to do for her, such as picking up groceries or medications if she can't drive, set up a pill minder (preferably a locked one), take her to appts and the like, maybe once/week help with laundry or cleaning, but NOT daily care.

She either has to work on improving herself, accept in-home help or she will have an emergency and likely end up in a NH. It might be good to have this discussion IN the doctor's office, so doc can hear and understand, and perhaps provide his input. Rather than ultimatum, perhaps you can all coax her into giving it a try, but with the caveat that if she refuses or it doesn't work out because she won't cooperate, she will end up in the hospital or a NH.

The more you do for her, the less she will be inclined to do for herself and will become more needy and demanding. The alert buttons are okay, but only if the person wears it and/or uses it. Too many refuse to wear it or forget to use it. Any chance of installing some cameras, so you can keep an eye on her?

Set her up with some easy ways to manage by herself initially - some frozen dinners and maybe some paper plates, etc, so she doesn't have to wash dishes. My mother refused it, but Meals on Wheels, so she would have at least one decent meal? Ease her back into "normal" life. Meanwhile, stand firm and keep suggesting aides. Perhaps bring one on the days you are there to do something you are willing to help with, such as cleaning. Ease the person in, perhaps she might like the company. Find excuses to step out while the aide is there.
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Reply to disgustedtoo
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You may need to have a conference with your mom and her doctor together. Explain that you can not take care of her at home without help - home health aides - since you work. Explain to mom that she either needs to cooperate with rehab, allow home health aides and home physical therapy or find another place to live since you can not take care of her in your home 24/7. On the side, you may need to ask her doctor to assess her for dementia and/or mental health issues. If she has dementia and you have powers of attorney for medical and financial, then you can make arrangements for her care without her consent.
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Reply to Taarna
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I feel for you. It’s a horrible position to be in. My 96 year old mother was competent and I had to WAIT for something to happen. She had a stroke and fell to the ground. I checked on her and she was lying on the floor conscious. I called 911 and they brought her to the hospital. The next day she took a turn for the worse and had to be given comfort care.

She passed away 3 days later. She died on HER terms refusing all outside help. She refused everything. Refused a nursing home.

She did things HER way!! She lived on her terms and died on her terms.

So sorry you are dealing with this.
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Inthistoo Mar 11, 2021
i had a similar experience. Father refused help, didn’t want to move to be closer to the kids, adjust for wife with Alz. who now lives with one of the children, but called everyone he knew for help. Meals on Wheels heard him crying for help, was on floor overnight, pneumonia had been aspirating food. Anyway, closest child got POA etc, and he went in a nursing home - not the best in town. Languished for about 9 months. With Covid-19 and its isolation of the elderly, it was a slow, ugly death. Not what he wanted obviously, but ended up being the only option left as he needed 24/7 observation. It definitely killed him sooner but this is life without cooperation and a plan.
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first mistake I guess was going to get her.
If she ends up back in the hospital do not go get her. It is what is called an Unsafe Discharge.
Often what happens is some catastrophic event makes the decision for us as to what is next and how we deal with the stubborn amongst us. (my Husband was what I lovingly referred to as "my stubborn pigheaded German" for 32 years!) At some point there is no choice but to do rehab or resort to Skilled Nursing or Memory Care or whatever the best option is.
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Mother was probably heading for death when you checked on her, found her bedridden dehydrated and not medicated. Have you asked her if she wanted to die? She might! She needs to confront it square on - whether she wants to make good choices, or to die as soon as she can. You can’t cope with this if she doesn’t intend to help herself.
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OldAlto Mar 10, 2021
Margaret, I had this same thought, and you put it perfectly. My elderly sister died just this past February, and - long story short - she also refused any kind of help, ended up in the hospital, and after some treatment refused any rehab, then refused food and drink and died. She did have a living will which specified her wishes. I think she lost the will to live long before even going into the hospital.
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Can you get the button alert system so if she’s alone & falls, it will automatically go off & EMS will come. You can set it up with house keys in lockbox outside attached to fence, for example. Also you can hire caregiver for her & say she’s there to help you with Spring cleaning. Never tell mother she’s there to help her ....& then train caregiver on how to use alert system.
You should become her poa & health proxy. She will probably fall if she’s by herself & need to go back to hospital. Good luck & hugs 🤗
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You’ll have to be brave enough to leave her on her on when she comes home. If you set up a pattern of providing for all her needs nothing will ever change. Her caregiving needs will only increase. Make sure she knows now what you will and won’t do.
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Reply to Daughterof1930
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Many times people don't know the difference between what they want and what they need.
Your mother's problem is not about her insisting that she maintain her independence. If that were the case she would not expect or want you and your brother to do everything for her.
The problem is she wants her care and needs met on her terms and her terms and those terms do not include allowing outside help.
That is what she wants. What she needs is for others to do for her in some ways now.
Explain to her that her choice and that she can choose the easy way or the hard way. The easy way is to cooperate and work with outside home/health aides that your and your brother find for her because the two of you cannot meet all of her care needs. Or she can choose the hard way which is continue refusing every attempt you make to get her good help which will result in her getting sick or hurt and then she won't be able to remain in her home. Then she will be living out the rest of her days in a nursing home. After you and your brother explain this to her, stick to it. Don't take every call. Don't go running over there every time she demands it. Both you and your brother have to have this talk with her together otherwise she won't take her situation seriously.
This is what she needs. Not what she wants. Good luck.
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my2cents Mar 7, 2021
Good point. It's not what they want, it's what they need. Drive that home to mom. No one wants help, but sometimes people who are trying to help you maintain some independence need the help. Always best to get patient to understand why YOU need the help for them.
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Tell your apparently competent Mother that you can no longer enable her in an unsafe decision to live on her own and to refuse help. Tell her that you will not be able to do things for her now, and she can accept help or end back into rehab. If you are unable to deal with an apparently competent woman then do know that Beatty here is correct when she says "There will be no solutions as long as you are all the solutions." Perhaps the THIRD time Mom end up hospitalized some bright social worker will understand that this isn't working and that Mom is making poor decisions. Stop being the go to. When the Social Workers call tell them you cannot be the "go to" for your Mother any more. That you have a life. That she will not accept help and you cannot "BE THE HELP". Tell your Mother that this will be your action in the future.
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BurntCaregiver Mar 6, 2021
Absolutely right, AlvaDeer. Sadly, some people have to learn the hard way. Like Mick Jagger sings,

"You can't always get what you want. But if you try sometime, you just might find, you'll get what you need".

Hopefully, Wasstraw's mom won't have to learn the hard and will accept the care she needs to stay in her home and not end up in a bad situation because it's not how she wanted it.
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She doesn't show signs of a desire for independence if she is not taking any steps to physically help herself. I think you have to emphatically state that. I am not suggesting you sound threatening. I simply think you tell her that the longer she stays in bed the likelihood will be she may not walk again.

That is what happened to my mother through no fault of her own to a degree. She spent 10 days in the hospital with a severe septic infection. She went from living on the 2nd floor of an AL facility which was considered the more independent floor (as opposed to the first floor where residents required more assistance) to being in the neighboring NH facility unable to even stand alone. She would very much like to stand or walk.

Although she has made some poor choices in her life regarding her health she has always embraced PT when offered to her after ailments or surgery. She survived the septic infection which had been doubtful but is very immobile. She would very much like to regain that but it is very unlikely.

In my opinion all you can do is tell your mother how much worse it could possibly become. You can say you can help to a certain extent but you cannot live her life for her. If there are not funds for private nursing (which also often has not ideal circumstances) she could end up in a Medicaid facility likely with a roommate which may or may not be favorable. Perhaps this will motivate her to a degree. If not then she will have to slowly fail. I don't mean to sound cruel but you should not sacrifice your life especially if she is not willing to try to help herself at all.

I spent years telling my mother she could not simply rely on her Christian Science faith when ill and needed to lose weight. She had intervals of adhering to this but not with consistency. She is a basically kind person who has loved my 3 children and been supportive to a degree in my life. She had a very difficult mother. These factors play a part with my behavior of trying my best to advocate for her now. She has made it to 90 which amazes my husband and I to a degree. I very much wish her present state is not what it is but there is nothing more I can do. I have to try to emotionally separate. Some days are easier than others. We can only assist. We can't live lives for others. I hope your situation improves.
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Reply to Riverdale
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You make sure that she understands that you and your family cannot and will not just drop everything to be at her beck and call, and if she refuses outside help, then she will have to live with the consequences. You are not your mothers keeper. She will discover rather quickly that she needs more help than she realizes, and if the family's not there to help, she will have no choice but to hire some outside help. Stand your ground. Don't let her guilt you into the caregiver roll. This is on her now, not you. Best wishes.
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Reply to funkygrandma59
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Why did you send someone to pick her up?

She will continue in her unrealistic expectations as long as you continue to dance to her tune.

Many folks here are in your position--waiting for the fall or illness that causes a hospitalization. When that happens, communicate with the discharge planners and make sure they know that she lives alone and that family CANNOT provide care. In all likelihood, she has told the hospital that you all will provide care for her at home. And they have no reason to disbelieve that.
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