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My mom turned 90 last year. Without going into too much detail, she has been living on her own until last June when she fell in her home, and was on the floor overnight by herself as she couldn’t get up to call for help. (Since then, we’ve gotten her a first alert button, which took a while for her to want to wear, but she is now.).
Anyway, she was taken to the hospital and then rehab for 2 months.


She has congestive heart failure plus more heart conditions, on warfarin for blood clots, cannot hear, cannot walk without a walker, etc. (she also had many UTI’s, with us thinking dementia, but that finally got cleared up.)


When she came home from rehab, we were told she could then not be left alone anymore.
The siblings set up a schedule to rotate her daily and overnight care. Some doing a bit more than others as some are retired, have spouses to help at home, daughters to help out, too, etc. Each sib is doing what they can to help out, and all are dedicated to helping where they can. BUT, it will be getting close to a year of this and everyone is or has already burned out, fighting going on between siblings, and some of their families are now suffering because taking care of mom has been the number one priority.


When this first happened, some sibs were not willing to move her to ASL, and also Covid had taken over, so the best option was in her home caregiving.


Not to mention, as mom has been getting much better under all this care, she has become at times a bit obstinate, controlling and at times just mean. She is mentally quite with it.


She doesn’t like people being in her house, moving her things around, taking her car away (as she put it, even though she had agreed to it and understood at the time), complains about each of us to the other after we leave. I won’t go into more details.


At one point we were able to get some help for a ‘break” as everyone was exhausted/ burned out, etc. we were able to have a full time caregiver there for 2 weeks out of the month for 4 months, bit the funds have run out for this. We each also cannot afford to pay for her care.


The caregiver help gave everyone a bit of a break and a chance to step back, get some rest, and reassess the situation.
Now the siblings (most of them) are ready to look at ASL’s for mom.


She has already fallen 3 times in her home, so is a fall risk. Her OT, PT through Medicare has run out, and they have released her. Someone has to give her showers, and only her one daughter is willing, but mom refuses.


Mom is convinced she is going to get better and will take care of herself and be on her own in her home. That obviously cannot happen. She has become more obstinate at times, yet demanding that we be there and take care of her needs she we are trying through OT and PT instructions to have her get up some and move around more and do some things for herself. She can do a little at a time, but gets worn out, winded, or sore, so she says no, she won’t do it, at times.


She has no intention of leaving her home. AL is not discussed.


We all know that is the best option, but Medicaid is what she would have to go in an AL on after the funds run out from the sale of her home, and paying her bills first.


1.) How do you convince someone who doesn’t want to lose control, is in denial about her care issues, athough knows and has told us we cannot continue to take care of her 24/7, that an AL facility would be the best option for her needed care, etc? Things will only get worse as time goes on health wise for her, and one fall by herself would do her in.


2.) Also, is it better to move her into an assisted living now when she has her mental faculties, or wait until later when she doesn’t know what’s happening as much?


It is quite a dilemma the sibs are trying to figure out, and very difficult and painful also, to say the least.


It would be so much easier if she was more open and willing to work with us. Some parents are not.

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Best of luck for your family meeting.

Take a warm bath, a long walk or something else you enjoy to decompress afterwards.

Remember the serenity prayer.. there will things outside of your control in this journey.

IMHO, it can go a few ways;
A. Age in place. With family or aides. Your family is burning out so time for non-family (ie aides).
If this becomes insufficient..

B. Move into care. Elder obliges nicely. If this doesn't work...

C. Crises. Await the next crises. Often a fall.. sadly very often #hip or brain bleed from head strike. If survivable, then hospital sends to SNF (hopefully you have a nice one picked out).

D. Die in their home. Sometimes it does just happen they way they want it.

Sorry I if sound harsh 😔.
I meet them & their families at the #hip stage. I have great respect for their strong nature, their independant spirits. Often I am blessed to see the change from 'I want to live in my own house!' thru acceptance into something else. Often it is something like "well I just want a nice room, my own things around me, good people & a window". Some accept & adjust. Some storm & rage till the end.

(((Hugs))) for you.
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Lizrose Apr 2021
Thank you Beatty. It sounds like you have experienced this often with other families.

I am very grateful for your insight. It helps me to know I am not the only one going through this.

You don't sound harsh at all, but understand lovingly what they are going through and then able to state the honest truth about all the very reasonable possibilities.

We all love our parents and going through this seeing what happens to them is so very difficult. We want the best for them, but also know we have to take care of ourselves and our families. The oxygen mask scenario...

thank you again - very sound advice.
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Similar story here! March of 2020 my MIL (91) had a stroke and heart attack. She also has congestive heart failure. My husband and I moved into her house because he teaches and his classes went online due to Covid. Here we are more than a year later and we (especially me) are miserable and burned out! We are trapped in the house. My MIL uses a walker and is always feeling sick and weak. She often has anxiety attacks. Every little thing has to be done for her. It is exhausting. But the emotional toll is really detrimental. The complaining, criticisms, questions, and never-ending requests are intolerable. She obsesses about food and gives me a hard time with everything I cook and offer her. I hate meals. I hold a lot of anger. My husband works long hours and I started a home business to keep viable in my career. To be honest, we believed she was in the dying process and we were helping her out until she either passed away or declined to the point of needing to go to a nursing home. But she is surviving and continues to have ups and downs. The realization is sinking in that she may live on for another year, or two, or three, or . . . She is mentally sound and will fight tooth and nail to stay out of AL or nursing home. My husband also doesn't want that. Now that we are fully vaccinated we are looking into home care, but I don't expect it will help much. Maybe a few hours a week? I don't see any solution, except just to stick it out, get therapy, and practice coping strategies until she takes a turn for the worse.
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First, your Mom is not mentally with it. She is obviously no longer able to reason for herself, and use proper judgement.One of you kids needs to get power of attorney and do whats best for your Mom.Its not easy to accept but her safety is the most important thing. Do you reason with a young child? Sounds like you are trying to reason with one in the form of your Mother. This is not unusual as many people become like children when they are 90 plus years old.You will feel terrible if you continue to give her control and something happens again, like her falling.
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There is a lot to address here, so most likely my post will have comments to continue addressing everything (there is a limit on characters.)

"When this first happened, some sibs were not willing to move her to ASL, and also Covid had taken over, so the best option was in her home caregiving."

The covid issue was certainly a concern, but less so now. It's probably safer in a facility than having multiple people, family or not, coming and going in her place.

There's nothing like being in the trenches to facilitate a change of mind, is there? FWIW, the facility my mother was in is IL/AL/MC. They locked down and had protocols to protect everyone. It wasn't until October that one staff member tested positive. It never went any further than that. I did get word that later another tested positive, but not one resident was infected! Now that most facilities have been given first options with vaccine, the chances of an outbreak is reduced significantly.

Although you indicate no real sign of dementia, I would question that. The early stages can be missed or misunderstood, mistaken for aging or other issues. Hearing loss is something that can lead to dementia, as are heart and other circulatory issues. It isn't always short term memory loss that shows up first. She is certainly in the right age group with her medical issues to be in the early stages.

I actually missed the subtle signs in my mother, having known nothing about dementia at that time (accusations of stealing, the most mundane items!) It was only in retrospect and knowledge that these signs became apparent. In her case, it was having difficulty with managing finances and repetition of questions or statements. She was also early 90ish and had a history of high BP, treated with medications. It also wasn't until we took the car away which meant having to help her secure food and supplies that I realized she was no longer cooking. Frozen dinners and boxed stuff was about it! After installing some cameras mainly to check on who was coming/going, but also for a sanity check, it also became apparent that she was wearing the same clothes over and over, once 6 days in a row, clean or not! I wear the same items over again, but this is a woman who had enough clothes to wear one item every day of the year and then some! Not her style to wear these older items.

It is great that all the siblings chipped in to help, even when it wasn't evenly distributed. Refreshing to hear that! But, as time goes on, they are realizing how difficult this can be. Now that there is burn out, fighting going on, and some suffering for their own well being, it is time to consider alternatives.

"...as mom has been getting much better under all this care, she has become at times a bit obstinate, controlling and at times just mean. She is mentally quite with it."
I still question that. Although she may appear to be doing better physically, she is showing some signs that *could* point to early dementia.

Not liking others in her home can be normal, but it also can be her obstinance that she is fine and doesn't need the help. Taking the car away, in addition to having care-givers, implies loss of independence. The fact that she agreed to losing the car and understood, but now objects - did she forget she agreed to this?

"We each also cannot afford to pay for her care."
None of you should have to pay for her care. Chipping a little in now and then, for something special, is one thing. Providing all the funds for care isn't something you all should have to do. You need to pay for yourselves and save for your own future needs.

Funds running out for care - would she qualify for Medicaid? There are programs to provide SOME in home care. It isn't full time, but at least in the interim it would give all of you a break. If one or more siblings would prefer, they can get paid for that time instead of hiring outside help, but I would think burn out would say get help in and reduce the time we all have to chip in.
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disgustedtoo Apr 2021
Part II:

Now that you've all had a breather and can reassess, it's time to determine what options you have. As noted, some in-home care might help keep mom at home, but she would have to be on board with this as well. If that doesn't work out, then some kind of senior living or facility would be the other option.

While you all explore your options, it might be best to find EC attys to consult with. Many offer a limited first consult, so set up several and have all questions, concerns and financial information available. You all can do this without mom being present, for now.

She refuses showers. She is convinced she is going to get better. She will take care of herself. She will be on her own in her home. These are all lies and delusions that dementia, esp in the early stages, can fool your mother with. My mother was living alone, so there's no clue as to whether or how often she was showering. It wasn't until I had to help with supplies that it was clear she wasn't cooking anything. She would put items away in the same usual place, and then later say she needed more of these, forgetting she had more!

My mother's plans HAD included moving to AL when she felt the time was right. Dementia kicked that to the curb. She insisted she was fine. She was independent. She could cook. None of this was true, but in her mind it was! She was adamant she would not move anywhere, ESPECIALLY not AL! When asked about it, you'd think it was a dirt hovel prison. Obstinate? Oh yes, big time! At least my mother didn't demand we do everything for her (she was still mobile at that time, walker wasn't until years later.) No way would the "D" word be used around her. She thought it meant you were crazy (it doesn't.) As to forgetting, she felt she was entitled to forget things once in a while, because she was old! When you are forgetting what you forgot, it is a different issue!

By insisting you continue to do things for her, she is clearly NOT independent. IF you try to ask how she will get better and take care of herself if you are all doing everything for her, what is her response? I really do believe you might be dealing with early dementia and the denials will continue.

Initially I tried hiring aides, only 1 hr/day to start, just for sanity check. The plan was to increase time and care provided as needed. This didn't last 2 months. She refused to let them in, using her mantra from above. So, given my mother refused to consider moving, our EC atty told me we couldn't force her. He suggested guardianship. I doubt that would have been approved at that stage - she was still capable of most ADLs and could appear quite normal and capable at times. It just wasn't safe to let her remain in her place alone. Additionally, the place chosen for her would not accept a committal. So, we had to get creative. She provided the catalyst for that by "bruising" her shin and developing cellulitis just prior to the move. YB used this (OB had to take her to ER) to draft a letter from "Elder Services" at the hospital which told her she either moves to the place we choose or they will place her. She was madder than a wet hen, but bought this and reluctantly went with the brothers (I stayed out of the actual move, having done everything else, hoping to avoid the flak.)

So, I would start with EC atty. Find out if she would qualify for some in-home Medicaid assistance. If you don't have will and POAs set up, NOW is the time to get this done!

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Imho, do not attempt to reason with your mother as you will be unsuccessful. She has lost the ability to decide where she will live going forward. That is now your responsibility.
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If I were in your shoes, I'd call her primary doctor, social services, agency on agency (or whatever it is called where your mother lives), protective services (if you have one) and an elder law attorney or medicaid attorney.

Unfortunately since your mother is still competent it will be much harder without her consent - that is where her doctor, social services and protective services come into play. It may be necessary to have a guardian/conservator appointed for her as she can no longer make decisions where she lives, even if she is competent. All of you should keep a diary of what services are provided by the collective you and how much you spend to keep her in her home.

First, it is unfair for your mother to remain in her home and expecting her children and their families to give up their lives to keep her where she wants to live. Unfortunately as we live longer we don't necessarily live with our health in tact. It is also unfair for you and your siblings and families have to pay to keep her lifestyle.

2. If your mother has no funds, you need to start the medicaid process. One sibling should be in charge of this process - all of you can work together but there is a lot of paperwork needed and one person should be charged to make sure all the documentation is received. When I did this for my dad, the elder law attorney gave me a list of what was needed and as I gathered up the documentation I would check-off what was received and forwarded to the attorney.

There will be plenty of work for everyone to get your mother prepared. When my MIL needed to leave her house, my husband and the SIL who had been MIL's primary caregiver (until she went on strike) checked out places for her to move to. She too was not happy about moving, but was younger than your mother and except for when she hurt her back (for a few days) didn't need round the clock help.

It is best if you and your siblings work together and divvy up the work - then come back and report to the rest. You are lucky in you seem to be working together at this time which is so much better than families where all the work falls usually on one child.

I wish you and your families the best in this journey. Remember there is strength in numbers - present a united front to your mother.
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First of all make sure you have a Power of Attorney. Second, if the family is burned out, and who would not be with the behavior and conditions, then they must face the fact that they simply cannot do this caretaker job any longer. She has lived her life and now it is the turn of the younger generation to live their lives without abuse and torment and problems from taking care of her. I would seek an assisted living place now and have everything set in stone. Then I would have the family as a unit meet with her and tell her that none of them can continue and therefore she must be placed - and do it - but the family should visit and keep in touch.
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Riley2166 Apr 2021
This woman is a danger to herself and potentially to others as well. She wants to be in control and will make life hell for anyone who won't put up with it. She does not sound like a gentle, loving person who is grateful for help. You know what to do - now do it. YOU younger people must be the most important now at this stage in your lives.
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Liz,

How are things going? You haven’t posted in awhile.

We hope that you find a solution for your situation.

Take care.
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Lizrose Apr 2021
Thank you for inquiring. 😊
My siblings and I are scheduled to ‘finally’ have a family meeting this weekend.

The eldest sister has talked to attorneys, ombudsman, and numerous ASL facilities. Finally! She talked to at least 14, and then narrowed down to who takes Medicaid and which are ASL and extended care facilities so as not to move mom twice, which makes sense to me.

Sister got video tours of the facilities that look promising, etc. She compiled all the data, pics, videos etc with all possible options breaking down which places take Medicaid and which don’t, what we would need to do for her to go into certain places, like sell her home, or not.

My only brother is the POA but allows the eldest sister to do most of the work as she is authorized quasi POA also. Long story I won’t go into.

She sent a compiled 10
page email to each of us to review before this weekend. With many attachments and YouTube videos of the tours. But asked us to not contact her until then. Just for us to digest.

She also gave the option of each sibling going to mons home once a week from 9am-8, but not staying the night. Just to be with mom if she won’t move from
her home, fix her meals, clean, etc.
And on the weekend hire someone to be there.
I don’t have a clue where the money will come from to pay them though. One of the many questions for the weekend meeting.
I do not know if I can be there one day a week as I have a disabled adult child I help who lives with me, and other big responsibilities with being a single mom. I have no other help but me, myself, and I.
Ex took off to another state with girlfriend and gives no help or support for his son. All on me.

This might be a way to make mom happy to stay in her home longer, but it looks to me like another bandaid. It’s inevitable if she falls, for instance at night when/if alone, we’ll be forced to move her anyway to an ASL. ?? But then it will be in the panic mode and she may not end up in the best option place. ?

or we just let time take its course.
I don’t know. ?

Sister brought up many other financial options to sell house, or remortgage, etc plus more thoughts. It was very thorough. Lots of questions ans lots to think about.

Will keep you posted after our family meeting if anything concrete comes of it.

Hard to know if all siblings (4) will be on same page and agree to move forward,
but temporary help we have now ends after May. 😳
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My siblings and I have been down this road with both my parents. Both are gone now. Mom had Alziemers and Dad kidney disease. In the earlier stages of the disease my mother for about a year had to be placed into assisted living because the disease made her make my dad public enemy #1. Dad was a career Air Force man and my mother stayed home to raise us kids till the last was in high school. She joyfully for the first time in her married life entered into the work force (to my dads dismay).
My dad hated being separated from my mother and even though the disease had her physically and verbally attacking my dad, she too hated being separated from him. When he had had enough he gave us a time frame and said "get the family home (of 50 years) in order cause whether we liked it or not or the home was ready or not he was bringing his wife home". It was absolute chaos and at times impossible but MOST of us got it done and to his credit, my dad collected my mother and brought her home. There always seems to be siblings who just flat out won't help and it sucked. My parents were not wealthy but they were good honest people and did the very best they could to raise their family. Whatever hang ups my siblings have is on them. There were so many times their help was desperately needed but they would not help. It was very difficult but between my parents income and my husbands and mine and having to go through a boatload of caregivers and finally being blessed with a good one, dad was right in insisting my mother be brought home.
Your mother is 90 years old. How much longer do you and your siblings think she has left on this earth? When did it become so customary to shelve away our elderly. For God's sake suck it up and do what you all have to do to let your mother finish her life the way she wants in HER HOME.
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CathyS Apr 2021
Sadly that senerio doesn't always work. I can not physically care for my mom's personal care. I am mobility disabled where I can not prevent her falls. I can not move her. Her house is not a safe place for her now. She refused to let anyone help her clean it and so maintenance of it was neglected. At one fall in 2019, she was finally told that she could no longer be in her home alone by a doctor. There was no family available to help with that. One sibling lives 350 miles away and the other is no longer involved at all. We tried independent care for 1 1/2 years. She went to AL during the pandemic. That created a horrible memory for all of us. Now she is in MC and I can see her and do the things I can for her. I'm sorry she didn't get everything the way she wanted it, but as she told me and my siblings when we were young, "I will get you what you need, you may not ways get what you want. "
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As some wise people on this site said to me: “Your mother is only managing in her own home because you are doing all the work for her!” This is you and your siblings’ situation too. Time to look into a care facility and get back to your lives. I think if she falls again and has to go to the ER, you can have the doctor on staff write it up that she is no longer safe in her own home. Let her seque that day into a care facility. She’s already fallen and it’s documented with rehab. You can have the social worker start the paperwork for Medicaid. Start getting all your paperwork in order now.
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I feel for you and your siblings. It is always best to move a parent before they are at their absolute worst.

It would be easier for her to move now so she she has time to become used to her surroundings.

Depending on Covid restrictions, a big plus is so she can socialize with others.

Has she been vaccinated for Covid? Have you looked at facilities?

Does it have to be assisted living since money is running low for care?

Why not look into applying for Medicaid and she can enter a skilled nursing home?

Honestly, it doesn’t sound like she is even interested in finding a new home to reside in.

I would not ever suggest that she move into one of your homes either because she doesn’t want to be told what to do.

Obviously, she wishes to live life as she desires to live. That’s normal because it’s hard to give up our independence but sometimes it is necessary for valid safety reasons.

It’s sad that she isn’t agreeing to move because it places more anxiety on the family while she is at home.

As far as falling, she will fall anywhere but at least she would have help available at all times.

I think that you are doing all that you can for her but it becomes a burden on the family to care for her.

You are blessed that more than one person is caring for her. Many times only one family member does everything.

I hope you find a viable solution soon.

Do you think if a social worker would speak to her that she would listen?

Have you contacted Council on Aging for some help?

Does she receive meals on wheels? Can she get groceries delivered?

Take advantage of whatever help there is to assist in her care.
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There is no convincing. Do not argue. That is a trap most/ many fall into.
Do not engage in the back and forth arguing as it is wasted energy and nothing will come out of it besides both sides in their own corners.
You know your mother won't (or can't) change.
Who is the POA?
It is up to you and others in the family to make decisions.
Of course she will rank, scream, be angry. This is (likely) how she gets her way and people cave in to her demands (some out of caring/concern/even guilt, some likely out of fear).
You need to stop giving in to her and tell her:
"This is what I will do . . .
This is what the family (or specific person) will do. ...
This is what "we" need to do now . . . (assisted living?)

No, OF COURSE NOT - she will not be open to working with you.
This is a given. Expect it and be ready for it. Stand your ground.

You need to take control of the situation.

My friend (88) just had a stroke and can't walk one step w/o a two person assist. He wants to 'go home' when he doesn't have any / enough help. There is NO logic when a person feels they are losing their independence. There is immense FEAR and ANXIETY. The 'best' you can do is HONOR how a person feels by acknowledging them. Yes, I understand you want to . . . Yes, I understand you do not want to . . . Let a person know you hear them.

They will hold on they cannot (or will not) accept logic and safety measures. This may be human nature for some. It is sad and very unfortunate. As I say, do not allow yourself to go down with a sinking ship. Yes, you may feel 'bad' 'guilty,' and all the negative feelings and emotions. Feel through them.

IF you are able to move her into assisted living - do it if you legally can. Depends on how much (longer) you want to manage care as it is now.
It may likely be up to you and the rest of the family to make decisions.
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CathyS Apr 2021
Wonderfully expressed. Thank you.
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You and siblings are thinking correctly and asking very important questions. As you mentioned she gets obsitate and stubborn. Instead of fighting with your mother or your siblings. Get your pastor or someone from the AL get an avocatr. Who can talk to your mother and convince her this is the best for herself and her children. Have meeting with everyone there and lovingly te get hour feelings and shy it is best she go to AL . She can take her most prized possessions. Have an advocate to oversee the meeting.Good luck and God bless.
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I doubt she will qualify for assisted living based on all the things you have to do for her. AL means there is staff on hand to help with little things, but patient can still manage on their own in their own room. AL is very expensive and not going to be covered by Medicaid. Medicaid covers NH bed when you run out of cash or other assets that can be liquidated. The house is excluded from that, however it will be considered when she passes as a means for Medicaid to recover what the state paid out for her NH care. There is a MERP (agreement to allow recovery on what is left in her estate at the time of death).

You can figure out what her income is each month and go from there on what she can afford. She could get Medicaid help for a NH bed or she might have enough income to be a self pay patient. Based on all the things she is unable to do for herself, she will probably be considered eligible for NH care due to her medical need.

Her plan is to live in her home and take care of herself. Let her know that the children are wearing out and cannot manage her 24/7 care any longer. She can go to a facility with request for PT/OT to help her reach her goal. Her house can sit empty awaiting her return. Talk to her dr about the phys therapies in NH. He can also reorder the in-home therapy she used to get (they let you have a month or so, deny you, and then wait a mo or so to request renewals). All she has to do is always mark on the paperwork that she 'intends' to return to her house (even if you think it is impossible) to keep house until her death.

Push the NH as a way to get stronger with 24/7 care all under one roof. Easier for all of you. Tell her that after a year, her kids haven't been able to get her stronger, so she needs trained medical people to help her meet her goal. Good luck.
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Unfortunately, if she is still mentally sound you can't force her to do anything. So many families are in the same situation as you. The elder's "stubbornness" often ends in a tragic outcome like a serious injury or death. The whole family needs to be united and have a kind of intervention with mom and lay out what her options are. The family meeting her every need around the clock is enabling her denial of thinking she's still independent and capable of being on her own. She isn't. If that was true she would not need a different family member at her house 24 hours a day.
If her only option is AL then that's her only choice. If it's possible for a live-in caregiver to be in her house (if you hire privately the pay is negotiable), then maybe that. There are choices here.
The family together must ask her plainly if pride and stubbornness is more important then her life. That if she falls one more time she will die. If she survives, moving to AL or accepting a live-in caregiver will no longer be decided by her or the family. The state will decide and they will put her in a nursing home. This may be enough to get her attention.
If it doesn't and she continues with the obstinance and asinine stubbornness of refusing to move or accept any outside services, then all of you will have to leave it there. The family can start living their lives again. Everyone needs to stop taking turns staying with her for days at a time, waiting on her hand and foot, and being responsible for her health and safety. None of you for any reason should tolerate her mean and abusive behavior for one more second. Give it right back to her.
You and your family can still help her out some, but stop being at her beck and call 24 hours a day. It's hard to do this but you have to. If she's still mentally sound then it's her decision.
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Very Similar situation. As are most of us reading these postings - to gain ANY small insight to how to navigate these VERY difficult times. To make matters worse there is COVID.

I was able to get mom on Medicaid (dad on VA Aid & Attend) between these 2 sources we have 50 hours a WEEK. which seems like a lot and not to sound ungrateful - There is WAY more than 50 hours a week to regain my complete freedom(VERY little assistance from sibs). I AM TETHERED in ALL possible ways. Mentally, Physically, Financially & Business wise. No more are we children/daughters/sons. I Am a Life Care Planner & executor. I wish I could go back to being just a daughter but I know that part of the relationship is past. It is NOW all about quality of life at this point and HAS to balance in my life as well.

I wish there was an answer to this ever growing (people are living longer with critical illness)challenge. If there is 1 valuable lesson I've learned from my situation, it's I WILL NOT put my children through this.....I will realize that I've lived my life and it's their time to live theirs....I will give them 'early on' permission to Place me in a SNF or whatever is needed - guilt free!

Caregiving isn't just A JOB (to those CNA's in a SNF) you have to have a passion for the Elderly. VERY FEW of these type people exist, the good ones get frustrated by the short handed staffing and leave to find more rewarding & fulfilling industries.

Just as we all have done raising our Children we have to have tough love. MANY on these forums struggle with how to care for our loved ones that DON'T WANT help & yet we SEE the needs (hygn, meals, house work, repairs, fall haz, bathroom etc). I personally, have had to step back from my Father who refuses to accept that he needs help. In one of the heated conversations he advised me that he has never asked for my help. It was eye opening to me that he was mostly correct.....he had not asked for much of the help I WAS (WAS) doing. I believed I was HELPING him, when in fact I was helping myself being that I can SEE what needs to be done and doing it. It wasn't appreciated. So now I dont do anything that isn't asked for.....It is harder to not do what I see needs done than the struggle to do ALL that needs to be done. I think?

I contacted the local Center for the Aging (Texas/Counties have these) they offer FREE Counseling. One of the recommendations is to keep a journal which is a little therapeutic but MORE over it is a source to refer back to WHEN THE day comes that SNF becomes the only - last option and I have to use the Courts to do it. Next start the planning. Research & site tours (when & where possible), begin to get financials in order. Medicaid does a 5 year "look back period" so the sooner YOU begin to prepare for this path the better. This is a tactical challenge and isn't done overnight. YOU DONT need an attorney, print off the application and start on it now....so you know what will be needed when time comes. If I can do it ANYONE CAN.

Churches are a great resource for caregivers as well even if only for respite/a break. Post for interns (They need "hours")at Post Offices local stores anywhere there is foot traffic.

To those that are reading this, I pray Gods resources abound in your life and that your needs are provided for supernaturally. That God will refill your energy and provide insight into your specific situation. In Jesus' Name AMEN.
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LindaC11 Apr 2021
Hi
What is the form you mentioned printing for an application? For Medicaid?
Right now mom owns a home and has money in savings.
any info would be great!!
LC
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If she is competent - you can't just move her. No facility will take a competent adult who is refusing. You might have to wait till she is a "danger" to her self or others and step-in and get legal guardian ship.
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We are in a similar situation. My mother is very much like yours .. demanding controlling and mean. We live with her because she is unable to live on her own, but she will not go to assisted living. She has to be taken to dialysis 3 times a week, and then there are doctor appointments on many of the other days. If she has a free day she insist that we take her somewhere and she gets very mad if we don't. Just this morning she called because we had to take a car in for repairs. It was only quarter to nine. She was furious because she woke up and we were not there to help her get dressed even though she has no where she needs to be. We were back by 9. She screamed at me and hung up on me. This is our retirement years. We bought a motor home fine years ago so we could travel when we retired, but all that is over and it just sits there while we pay for it. I don't know how much more of this we can bear. I have no answers for you because clearly they are in control of our lives and they know it, but refuse to think about what they are doing to us when there are other options for them. My mother has enough income to afford assisted living, but she refuses to even discuss it.
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RedVanAnnie Apr 2021
How aggravating it must be that your mother is so demanding and unappreciative. If her money is used to pay for the house, utilities, food etc and you are living there on her dime, then she may feel she is "paying" you to be there for her.

if you left and went off in your motor home, she might need to find someone else to live in and be there to take care of her. My husband and I lived with my father in his home so that he did not have to go to AL. We were extremely fortunate that my father did not need intense physical care taking and that he was always appreciative that we were his "long term care plan.". Whatever help my father needed was our priority, but, for is, it was a lot easier and more pleasant than many of the stories on this forum.

My husband and I also were able to take separate trips during those years with one of us staying with Dad while the other went on vacation. We both loved that b/c we had different "vacation interests," but that's not a tempting solution for many.
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Even with my guardianship, it took a medical emergency for the doctor to say that my dad could no longer live at home and that he needed to be in assisted living. Dad should have moved a long time ago but he wouldn't. Guardianship gives you a lot of authority but you can't just pick up and move a stubborn 92 year old.
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BurntCaregiver Apr 2021
You are right, Babs75. If someone is still mentally competent no one can force them to move.
I don't tolerate stubborn. No one should. Be as helpful as possible but if the person wants to be in denial and keep up with the stubbornness, then I'm done.
That elder needs to be left alone. Sometimes out beloved seniors have to learn the hard way.
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Saw the word narcissism mentioned a few times in your answers to others, and that in a year the siblings and their families are burned out, and this:

"My eldest has put so much of her time into taking on most everything to keep mom organized with monthly calendars to all sibs, takes to dr. appt.'s, arranges all other appt.'s, etc. She was with mom when she fell twice and literally freaked out. I think she is taking it on too much and taking it on to the point of damage to herself. Maybe the eldest feeling most responsible thing. ? I told her she could only do so much, and would have to let some of it go in letting mom discover she can't have everything the way she wants. Mom often gets angry with her and tells her she's too much of a perfectionist and doesn't want to listen to her. I'm not quite sure what this sister expects or why she feel so responsible. It's actually a bit ove the top at times. Mom needs to see reality and not have all that help."


I feel so bad for your sister, all of you really, but especially her, the one groomed to be your narcissistic mother's personal slave. I can imagine how burned out she is and it makes me sad for her.

I sincerely hope that at the family meeting all can decide to back off on any and all care until your mother is forced into professional care where she belongs. Why is your brother POA and not the oldest sister who is doing all the work? That's not right either. I hope he gets a clue and stops doing basically nothing while your sister is burning out and it's affecting her health.
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BurntCaregiver Apr 2021
ExhaustedPiper, you probably already know why the brother is POA and not the eldest sister who's doing all the work.
Seems like with elderly moms their sons are always the golden ones who can do no wrong and their daughters can be the work horse who gets treated like crap.
They should all back off and stop doing everything for her. Let mom be as stubborn as she wants. If she falls again and gets hurt she's in a nursing home. Some people have to learn the hard way.
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Is there one sibling who’s more inclined and ok to stay w her? The other siblings could chip in some amount so she’s paid at least some compensation to stay with your mom so she can remain whatever time she has left at home bc doing that full time it’s most likely they’d need and expect some sort of compensation to offset the costs to not being able to work and also to demonstrate appreciation- and since it’s a lot to do 24/7 she ( or he, I just used she bc most often it ends up being a female relative who does the caregiving) can here and there pay for a relief caregiver for a day or weekend. There’s definitely value in a senior especially of this age remain in their home - a big change to an unknown place with strangers is a factor in an increased risk of the senior having a sudden decline, sourced with a rn, a physician and long time caregiver agency owner. It’s hard though bc in re reading the op if I understand correctly she doesn’t want anyone there. If the one daughter who’s more ok with helping is compensated and given breaks when she says she needs them that’s pretty much the option that occurs to me
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I hear you. It is hard to take care of another person 24/7 or even a portion of that time. Seems you have gotten all the volunteer help you can and that paid help for her to stay at home is not an option. It is difficult to balance caring for her needs and each caregiver caring for own needs and family's needs. Since you notice the stress her care is having on the family and that mom is contributing to it, something had got to change.

Start by having her evaluated by her doctor for health issues, dementia issues, and psychological issues. Her doctor may make referrals to a neurologist for an indepth dementia evaluation. Her doctor may also make a referral for mental health evaluation and treatment (since she is creating problems between family members and unrealistic about her health). Ask the doctor to tell her that she can not live at home anymore and that she needs to enter residential care facility. Many times a senior will listen to a doctor and follow his/her orders when the person won't listen to a family member.

If that doesn't work - and it should - then take her to the hospital when she falls again. Ask the hospital to help you with placing her into residential care facility. They will tell her that she can not go home and help with the process.

I can pretty much guarantee that she will be mad at everybody with whatever change you make. Expect it. Tell the rest of the family members to expect it. Give her a couple of weeks to get used to her new home. She might surprise all of you by settling in, finding friends, and enjoying it.
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Sarah3 Apr 2021
you have some good ideas but the part about dementia - the op seems clear her mom is very mentally sharp
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Of course it's always better for the person to stay in their own home where they will be the happiest and feel the safest instead if some strange place with strange people that are not always nice, sharing a room with a stranger and having people tell you when and what to do. I completely understand her not wanting to go.

I too would rather take my chances in my own home even if that meant home alone.

Remember that Senior Homes, you have just as much chance to fall and they are always understaffed.

You should let your mom stay home like she wants.

She has just as much chance falling in a Senior Home.

Just do minimum for her and not do everything for her.

She doesn't need a bath or shower every day, once or twice a week is sufficient. She can even do sponge baths.

Install hand holds in her shower and a shower bench.

Make sure she has a walker with a Seat so She can sit on her walker or use it to carry something.

Have little meals pre made to last a week or easier yet, buy little microwaveable meals like Lein Cusine, ect.

Buy Easy and nutritious food to eat like frozzen pancakes, waffles, cereal, breakfast bars, breakfast drinks, yogurt, Instant cereal, milk, soups, frozzen dinners ect.

She can just give herself a sponge bath.

Along with her 1st Alert Necklace,
Set up Nest Cameras thruout her home so anyone at anytime can tune in by smart phone or computer, to see that she is ok.

Have everyone pick one day a week just to drop by for an hour.

Order groceries to be delivered at the time someone will be dropping by so they can put them up for her if needed.

You might not have as much peace of mind as if she's put somewhere leaving the responsibility to others, but you mom would not be. Your mom would not be at peace. You should let her continue to stay in her own home, at least until she no longer knows.

Better to be Free and take your chances than to be in Jail.
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I would ask yourself what is your end goal here . What is it that your truly trying to accomplish and what does she truly need . We are in almost identical situations except with my father . He is 94. He developed mild memory problems a d vision loss 1 year prior . He started to suddenly hallucinate and wandered 1 year ago , my parents had been living in isolation due to Covid . This went on for a few weeks , he got mean suddenly ( dementia ) and wouldn’t take care from us when we tried to go back in . He became very bossy including to my mom and was impossible . He wandered 3 times in 10 days and ended up in hospital 1 years ago and is still there . There is almost nothing is left of him . He didn’t accept care well because he wanted to be in his home . They medicated him severely as a result and he became a fall risk from the meds . He wasn’t allowed to walk on his own even with a walker because fall risks can’t do that in hospital . He would try to get out the wheel chair to walk and they said he couldn’t so they locked him to the chair which caused severe agitation. He has wasted away and lost 40 pounds as a result of muscle mass loss because they simply didn’t have the staff to walk him . He has caught mrsa 2 times while there . This time he has cellulitis with it snd we may be in trouble . He is usually unaccepting of care from the nurses because they often don’t que him and tell him what they are going to do ( vision loss) so he swatts . Then they don’t want to approach him cause he swatts . They insist he uses a diaper despite being able to use the washroom . We have had meeting over it . But now because he can’t walk a d is unpredictable they need 3 people
to tolite him ( he was completely independent when going to them) it’s too much staffing and they don’t want to do it. He is to use his diaper . He doesn’t want to and holds his bm’s for days . Of your mom has a history of Uti’s this diaper system is part of it due to staffing and be prepared for that . The “ system” has been gasoline on a fire on my dads aging and dementia. .A doctor there tolD me a seniors ability to survive In this system is dependant on their ability to accept care from it and for them to get access to what they need . Seniors not accepting leaving of their home can be a nail in the coffin . I wish we would have found a way to get him home . Now we are probably looking at his end soon . In Our experience for our loved one the system has less to offer on convincing people to accept care , you either take it or leave it . If your loved one can’t get in line with agenda in the system they fail . He didn’t have dementia prior to 1 year ago and was in good health a d now has cellulitis, mrsa , can’t even stand ( 1 year ago went in wandering 2 km uninjured and is in big trouble .
. if I could do it again I Maybe would try rewording the care and see if the person is more accepting . Tell her you have arranged for an at home Spa treatments as a treat ( bathing ) . Ask the person doing the care to turn on some relaxing music , turn on some electric candles, deep condition her hair , do it up snd have fun with it . Maybe do your nails at the end together . Have a nice spa lunch at the end ( make a special meal)
If it’s cooking tell her you want to try out a new recipe and would like her input. Allow her to feel like she has a purpose again and her input matters . I know this may seem like a lot of work but if we could take back putting my dad into the system we would . Now he has deteriorated so far in such a short time it may be too late . Please be careful what path you take with someone who doesn’t truly want to leave their home . Ask specific questions about what’s truly available during Covid . for example If she has to go to the bathroom every 2 hours do they really have the help to do that . Just remember she will only do as well as she will accept and if she feels forced from home it may not aid your situation .
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Move her when she has her faculties, that way she can get used to everything get involved in the activities and make friends. And be settled.
I saw Mum was getting dementia but OB didn’t acknowledge it so Mum was moved to IL. It didn’t last long and staff noticed she wasn’t taking her pills, I noticed food buildup, she wasn’t eating properly even though I took her grocery shopping, she couldn’t figure out the laundry machine even with written instructions so she was moved to AL and a month later to memory care , each move taking more out of her. I believe if Mum had gone straight to AL she would most likely still be there.
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Oh you could be telling my story exactly. Only difference is that I am the only one that helps our parents. I travel 45 min to reach my 90 year old parents with dementia. My mom says NO to EVERYTHING!!!
Yes, I'm exhausted. Frustrated a lot. But I learned, also based on articles I've read, that you cannot reason with, argue or convince someone with dementia to do something they don't want to do. My mom now doesn't want to get up and walk to the bathroom or take a shower. I am beyond burnt out and feel like I have anxiety going anywhere with covid still out there and as much as I have tried and tried, I still can't get an appointment for a vaccine shot!
I don't know that I am helping you at all as I spout off my own problems but if nothing else, I feel less alone knowing that I'm not the only one dealing with a hard to deal with mom that refuses any outside care...ever. Unfortunately it's going to take an accident or some other bad situation for them to realize that they can't go on without more help!!!
My heart and prayers are with you and your family!! I KNOW exactly what you are going through!!!!
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I've read and re-read - why can't mother be left alone?

She has a falls alert which (glory be!) she is now wearing reliably. She can't walk without a walker, but I take it she has then been supplied with a walker? - so she can walk. She remains a falls risk, no doubt, but she won't be any less at risk of falling for another person's being in the house.

So..? Why the 24 hour supervision?
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Debbie17 Apr 2021
Its obvious to me.
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OMG.....so identical to our situation with our 90 year old mom. She's been living alone since dad died 4 years ago....has had various home care assistance, plus few family helping out. But now, she insists on staying in her home, even though she can hardly walk, use her hands, bathe on her own, basically can't do anything on her own. She refuses to wear Depends, nor wear her alert necklace. The EMTs were there last week, and she needed to go to the hospital, but they said they weren't allowed to take her since she insisted on not going. My sister is trying to get paperwork, doctor, social services to get her into a nursing home, and it's going to be a struggle. Of course Medicaid will have to cover the expense, but the real struggle is mom giving everyone so much trouble, we fear that she will get kicked out of the nursing home, that's how vindictive she can be. Anyway, try to get a social service worker into the home and she will have the authority to rule your mom incompetent of living alone. That's what we're working on now. My two sisters and I are both unhealthy ourselves to take care of her, plus living one hour away. Mom's part time caregiver is also using a walker, so we can't count on her help much longer. In home care is almost impossible these days!! Can't trust hardly anyone in your home, plus many are inexperienced.
Best of luck.....sometimes ya gotta hurt'em to help'em. Sad.
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Call Elder Services and report an Elder at Risk. A social worker will investigate while maintaining confidentiality as to who made the report. Enlist her physician in this as well.
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Right now we are exactly where you are -except maybe one step worse because BIL and SIL live with FIL. He is cognitively perfectly able to make his own choices. Physically he is a mess, nearly completely immobile. The VA sends a bath aide 3 times a week and literally his only mobility at this point is when he gets out of the bed and uses the walker to go to the bathroom and recently he has made rumblings about a bedside toilet - which is a huge fall risk for reasons that would take forever to explain so we are right on the precipice. But his 'reason' is always that BIL and SIL live there - so there is no reason whatsoever to explore any other care solution. So they are looking at options to move out. He is over 300 pounds...once he is unable to get himself out of the bed on his own -and we are just literally almost there - we are beyond their ability to provide his care - they both have physical limitations themselves - and his falls require a call to the fire department and usually 2 crews/ambulances or at least 4-6 people to get him safely up....so not something they can do alone. So his only option is going to be a skilled nursing facility.

Deep down he knows it. He is fighting it. And he will fight it until he has no other option. So our only choice is to remove the other options. And that may be your only choice. By providing all of the round the clock extra help, that provides her with her 'independence'. In her mind, she is able to maintain her 'independence.' My FIL still thinks he is 'independent' too. When BIL and SIL moved in with him, SIL and I sat down and completed a ADL checklist. He was still in pretty good shape. He could still do pretty much everything on the list. Now, the only thing and I do mean the only thing left on the list that he can do for himself is get up with the walker and go to the bathroom. And even that is assisted with the walker and diapers. He has lost every single one except that. It is very hard for them, rightly so, to deal with the loss of their independence. But it is even more difficult when they are being propped up and not really seeing that they have lost it.

At the end of the day though, at some point the other shoe will drop at some point and then the decisions will have to be made.
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