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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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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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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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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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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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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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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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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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