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My 94 year old mom has been living on the East Coast in the same house for 50 years. My brother lives two hours away and I live 800 miles away from her; we and our spouses all work full-time. Mom now needs round the clock care but refuses to move out of her home. We have hired people to help her, but it is hard to manage her finances, health care, etc... from such a distance. The cost of round the clock care is also enormous and she can't afford to do this for long. I've tried for years to get her to move to where we live, but no such luck. She also refuses to move to assisted living in her current location. Any suggestions? She is quite stubborn...

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I've been there, am still here. 5 years in, no magic bullets, even on this wonderful forum. All I can offer you, losingitinmo, is my compassion.
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losingitinmo Nov 30, 2019
Thank you -- the commeraderie and support on this forum is a lifesaver. Best wishes to you, too.
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Your profile says that she has dementia. People who have dementia often think they can live fine with no help, even though they are incapable of caring for themselves. Have you met with her and her doctor? I'd arrange a trip to her so you can meet with her and her doctor. The doctor may be able to intervene if he is apprised of the situation. Has he already diagnosed her with dementia? My LO's doctor told her she was not able to live alone due to her dementia.

Perhaps, an attorney as well, so you can see what legal options there are. People who are incompetent, aren't able to make sound decisions about their welfare. You might also check with neighbors, friends, fellow church members. Often things are going on that concern them, but, they don't feel comfortable contacting the family members to tell you to get her help. If you inquire, you might be surprised at how much help she needs. And, if that's not the case, you can put your mind at ease.
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disgustedtoo Nov 27, 2019
"...doctor told her she was not able to live alone due to her dementia..." This might work for some people, but as your comment started, the issue is they often "...think they can live fine with no help.." This negates anything the doc might say! Mom's regular PCP promised to write the letter I needed for becoming rep for her pension, but after 9 months of begging them, nothing. So I took her to a new doc, prior to the planned move (due to location change when moving to MC we needed a new doc anyway) and she told mom "It isn't safe for you to live alone." No mention of dementia, nothing else, just that. Mom was already agitated by them trying to put headset on and also thinking we're going out to eat, but THAT statement sent her over the edge!!! In her mind she was fine, independent, could cook and take care of herself. Hardly...

If they will listen to someone else, esp a doctor, great, but sometimes that just puts more barriers up. It's worth a try, but doesn't always work as desired...
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Given the age and condition of your mother, YOU take the bull by the reigns and make plans to move her someplace appropriate - no if's, and's or but's. YOU must be in control. Just find a way to place her and get professionals to help you. It is your choice, no longer hers. Do not let her control you or you will be destroyed by her stubborness and behaviors.
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losingitinmo Nov 28, 2019
Hi Riley2166 -- thanks for the support. There's so much guilt involved... it is hard to tell her "no". But on a more practical note, while she has early stage dementia, I'm not sure she'd be declared incompetent yet. So even if I screw up the courage to put my foot down, I'm not sure I'd be clear legally. Maybe in six months or so...
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Okay so this WAS my exact situation. My late mother demanded to live alone in another state BY HERSELF IN HER OWN HOME 7 states from mine and all the 'cross country from my one sibling. Oh, sure we tried to amend that. In the end, I had to leave my home, family and life and move in with her for an extended period. All of my own life was put on hold.
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losingitinmo Nov 28, 2019
Oh Llamalover47, I feel for you. My mom's "plan" for aging was that either 1) my husband and I would both quit our jobs, take our daughter out of school, sell our house, and move to where she lives so I could take care of her, or 2) I would just quit my job and leave my husband and daughter behind and move in with her. Um.... no. Neither my husband nor I can afford to quit our jobs and move. Not quite sure why this seems reasonable to some elderly folks.
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The ability to stay on her own has changed greatly since she now requires constant in home care. I completely understand what you are going through. When we moved MIL in with us for her care and wellbeing we went the route that her home could not take care of her any longer. We showed her a list of needed repairs and our estimate cost to replace expensive items. It was not easy to convince her because she had lived in this house for 91 years, actually the home she was born In. If you are looking into assisted living for her maybe you can take the approach of she will be able to choose her best fit now instead of having someone else decide at a later date, moving closer to one of her children so they can visit her more often and be able to take her on outings? It's hard for them to give up their independence and admit that they are in need of more help than they think is necessary. Stress the fact that the time may come when she won't be given a choice of where she lives and that the state will place her wherever they want regardless of her wishes.
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Despite her saying (prior to dementia) that she had to 'clear/clean up' in case she ever has to 'get outta here' (when asked what this meant, she said going to live in AL), when dementia started, mom, like others, maintained that she was 'fine, independent and could cook.' In their minds, yes, this is true. In reality, it is not even close! I tried once telling her that putting a box in the microwave and going beep boop boop beep hummmmmm BEEP is NOT cooking. That didn't go over well.

We couldn't even discuss AL at that point. Dementia was also a no-no word (to her it meant you were 'off your rocker', aka crazy, which isn't true.) Paugh, she wouldn't live in one of THOSE places... Again, it was HER plan to move to AL at some point! Better food? How do you know she asks. Mom, ANYTHING is better than the microwave dinners and boxed crap you eat now...

Brothers both offered to let her move in. Nope. I didn't, for many reasons. Tried bringing in aides (1 hr initially, sanity/med check only.) That lasted 4-6 weeks, then she refused to let them in. They sent their "expert" to talk to her - hahahahaha, she was lucky mom couldn't pick her up and throw her out!

Plan C - find a way to move her to MC. My suggestion was ignored. However, she provided the solution by getting cellulitis just before OB came up to prep for the move. YB drafted a phony letter from 'Elder Services' at the hospital where she was Dxed and treated. It stated she either moves to a place we choose, or they will place her. Reluctant and madder than a wet hen, but she went. I stayed out of the move (did all the pre-legwork, securing a place and furniture, etc.)

Although your profile indicates some dementia, it isn't clear how far along she is. With all the other issues, it sounds like 24/7 is needed, but unfortunately even those with cognitive issues have "rights." EC atty told us we couldn't drag her out of the house and suggested guardianship. Facility we chose said no to committals, but also said just get her here, we will take care of things. So, the fib had to be created to facilitate the move. I've since been told by staff that the residents can refuse care and medications - it is their "right", whether it is good or bad for them! They do work on coaxing the person to get the treatment/take the meds.

Perhaps you could come up with something? If she had any medical emergency (falls, broken bones, etc), you could blame the docs and keep repeating the move is temporary, until she gets "better" (knowing full well there will be no "better.") If you find a good place, perhaps send her phony mail that says she won a vacation at X place, free of charge! Entice her to go and then keep deferring the return. Maybe set it up so that you could tag along/stay for a day or two... make it seem "real." It stinks having to fib, but often this is the only way to move forward. True lies are those said to hurt others. Fibs, aka little white lies, are told to protect others, especially those with dementia. If you do get her there, defer the return too vague responses like "soon", "maybe next time", "when we get doctor approval" (if medical issues prompt the move), "oh the power is out at your home, we have to wait for them to fix it", or other plausible excuses.
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One thing that helped us--we are the closest to my inlaws and my BIL is 1200 miles away--was to have HIM handle the finances. With the advent of online banking and bill pay, he can easily do that from there. It also helps with the appearance to my inlaws who don't care for me that I'm not near their money. ;-) Not that they have any, but that's another post. ;-) My DH does all the hands on care. We had a hard time getting them into a place too. It was a few steps at a time, which caused more work for us, but it worked out better overall. We were able to get them into an independent living apartment with "assists", like medication management, an emergency pull string, meals provided, etc. That lasted about 16 mos before it became obvious that they needed more. Fortunately we were able to play on their paranoia that "people there didn't like them" and got them moved to an AL that was a lot closer to us. After only 30 days there though, it because obvious that my MIL needed memory care. Their set us is small houses that house 12-16 people. The MC house is 2 doors down, so it wasn't a major move. It has allowed them both to get better rest, and have the care at the level they need it. The fact that we had done our due dilligence and already interviewed, visited, picked out places, allowed these transitions to go a LOT more smoothely and for us to "strike while the iron was hot."
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losingitinmo Nov 28, 2019
Thanks for your reply, DILKimba -- good advice. I've been visiting AL/memory care places near me and have found one in particular that I think would be excellent. I'll contact them to see what their waiting list is like, so we can move quickly if my mom can be convinced.
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Have you considered hiring a geriatric care manager? They are individuals hired to handle issues associated with long distance caregiving. However, if finances are becoming a concern it may be prudent to relocate her to a facility while private funds are available. It is easier to place someone in a facility and have more choices available for her rather than waiting until she has no funds and is relying on Medicaid.
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losingitinmo Nov 28, 2019
Thanks, Peanuts56 -- excellent point about relocating while funds are still available; I've heard it can be very hard to find a bed in a nice facility that takes Medicaid. I'll keep working on her...
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losingitinmo, I was in a somewhat similar situation. Every situation is unique, but each one the same, emotionally and logistically.

My 85 y/o mom refused to leave house of 50 yrs. One distant (200 mi.) sister, and 2 other daughters in town, but working f/t in high-stress environments. Sadly, I lost my career AND marriage, both of 30 yrs. at same time, so moved in with mom. Over time, 5 yrs., mom rapidly declined. 1 sister in town still worked full-time. Eventually, the distant sister was tasked with working out the financial and LTHC logistics (a Herculean commitment that I couldn't have done).

By luck of timing, in-town sis was temporarily laid off contract job, so 'agreed' to step in and I arranged to leave, Young adult (working) niece moved in to save $$, and we (on mom's behalf, using her 'income') eked out 4 hrs. of caretaking 6 days a week.

Everyone's situation is different but the same. I'm praying for you.
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losingitinmo Nov 28, 2019
Thank you, Davenport! Prayers always welcome. :-)
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Your situation is probably the most common one we see on this board. The aging parent, their refusal to accept help and be independent, so we as family simply sit and wait for 'that fall' or something similar. sadly, they often wind up in a situation far worse than if they had gracefully accepted help and worked WITH us to find a workable solution.

My MIL lives near 2/3 of her kids. She really only accepts help from her daughter, but at what a cost! My SIL works, has her own daughter and kids living with her and has a sweet but very lazy husband. To have to run to MIL's house everyday is a 1 hour round trip or longer--then there's the shopping, cleaning and simply 'being there'---SIL leaves in time to go to HER house and start round 2 of the same thing.

All b/c MIL refused to even entertain the thought of assisted living. So, in the throes of a horrible UTI, she fell down and while she didn't break a hip--they told her 'next time' she will. She developed pneumonia and was in the hospital/rehab facility for 6 weeks. Back home, but now walking with a walker and trailing an oxygen tube. Just a mess and a scenario for worse...

All b/c she simply refuses to leave the home she's been in for 63 years. It's not like we don't GET IT--we do! But she is so stubborn and so difficult to please. She cannot see that she is wearing other people to nubs.

DH just hates the role of CG--he will go see her if I hand him a dinner all packed up and force him out the door. This gives him a reason to go-- as if the fact she'd 90 and alone isn't enough. He will go 2-3 weeks and not even call her.

I force him out the door with a container of soup and fresh rolls and said "GO! And don't come back for an hour!" It was late (7) and she goes to bed early, but he did go.

I asked him what the long term 'plan' is--this is going to kill his sister, she's doing 90% of the work--and he said "Oh, J is fine with all this!" And she actually IS! Or so she says. He said "we're just waiting for the next fall and then the broken hip and we can enact POA and get her in a home". Well, at least they have a plan.

I'd be happy to help, even though MIL really dislikes me, but I just finished chemo for cancer (cured it--yeah!) but I am still super fatigued and won't be 'better' for a couple of months at least.

I'm not really a part of this dynamic. MIL dislikes me and so I am not really allowed in her home. I could be of great help, but she will NOT accept it from me.

People can want what they want all day long, but in the end, the decision is often forced upon them. Then NOBODY is 'happy'.
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Davenport Nov 25, 2019
Thank you, midkid58, for confirming my recent, totally unscientific 'share'.
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Boy can I relate, if one of my 2 brothers wasn't 30 min or so from Mom and divorced she would have had to move a while ago. We have even tried getting her to move in with him or spend part of the year in CA with the youngest brother and his family who have an in-law apartment attached to their home and part with me and my husband who have a smaller finished in-law set up in our basement but she wont budge from her house. We all know it's just a matter of time before this is no longer sustainable but for now we really do have the responsibilities of managing her fiances, personal and medical needs shared pretty well. We also have the 2 upstairs bedrooms in her house rented (she lives on the first floor) so there are people in and out we can call on in a real emergency and that can let us know if there is no sign of her for a while, which doesn't mean she sees them every day unfortunately (we had hoped) but that coupled with her Iphone, several cameras and Echo's enables us to have visual contact with her throughout the day and check in as well as monitor her medication. We have talked about getting someone to come in a few hours a day or maybe 3 days a week to start but there really aren't funds for that (I'm in the process of trying to find state funding options) so there absolutely aren't funds for more skilled or round the clock care which makes me very wary about just how much we allow her to become dependent on someone else to do all the things that enable her to refuse moving. When mom says "I'm managing just fine" I know it really feels that way to her, it's been a gradual process her children taking on the jobs she can't do and we do it gladly & while she absolutely recognizes and appreciates what we do she isn't really experiencing not being able to take care of herself and what that means. My point here is as much as I get the desire and love that has you doing it, getting her 24/7 in home care might not be helping your mom see the inevitable and participate in what to do next. You are taking away any reason to decide to move out of her home and accelerating the no financial choice option which in turn will limit the choices of her next step all while intending to do what you can to keep her safe and happy. She is likely going to need a self wake up call to make her own decision that something needs to change. In my experience the best thing you and your sibling can do is continue to make sure she knows you want to and will help in every way you can but there are limits you can't get around. Without making it a given or a hard conversation you could drop suggestions about alternatives, maybe just telling her about how a family you just read about is handling things or this great IL your neighbors mom moved into...that sort of thing so you aren't suggesting she do this or that your just planting the seed. It happens often with my mom that it's obvious she has been thinking about something we discussed because she brings it up day's or weeks later or when it's an important topic we each (her 3 kids) will bring up the topic with her and she becomes less blocked off to it. I have learned that while I don't need to complain all the time and there are things better left behind the scenes if possible it's good to share with her regularly all the things we are doing both on her behalf and in our own lives, I don't mean in a complaining or overwhelming way, just what she can take in. I find this gives her a sense of control for one (things aren't being done behind her back), the appreciation for just how much needs to be done and the chance to still be Mom, hearing and caring about our lives and us.

Unfortunately it may very well be that a major event is going to be the catalyst but their comes a time when holding that off may not be as helpful anymore and if you can't get a plan in place at least having laid the groundwork will be huge for all of you but you will have to let it happen.
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losingitinmo Nov 28, 2019
Thanks for your post Lymie61 - I think you're right: we are enabling her by making all the arrangements for her staying in her home. We'll do this for a little while, but I'm trying to be clear that she can't do this indefinitely. Maybe when she sees what's happened to her bank balance, we'll be able to convince her to move.
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All I can say is that this sounds so very frustrating. You are trying to avert a really bad situation,and she is fighting your attempts to do so.
I can see this scenario in our future. MIL is 92 and is already letting us know that she will not be moving. Recently, she dropped her plans to move in with her daughter and is staying put.
I keep thinking that the solution when we get to the point that you are at, is to force the move even if it makes her unhappy. You do the right thing, regardless of whether she wants it.
It will eventually come to this at some point.
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Can you find someone in your mother's community who could manage her mail, bills etc? Does she also need 24/7 nursing care or could the "bookkeeper's" shift also serve as supervision during that time so you didn't have to double up?
I would not expect home health aides to be the ones entrusted with financial management. That should be someone with whom you feel secure about handling private information. Do you have any contacts in your mother's community who could help you locate a trustworthy person for this kind of job?
I mention this b/c I used to do "in home bookkeeping" myself for several elderly people in the community where I lived.
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The only suggestion I have to help manage finances is; take one credit card and have all her regular expenses, utilities, insurance, cable, etc., charged to that card. make a payment once a month to that one card. This eliminates a lot of mail, and assures that water does not get shut off. How are her finances, you and your brother's finances? As far as round the clock care, perhaps you can offer a room living space for a caregiver in your mom's home, in exchange for partial pay. This is the only way to beat the huge exopense of home care. Agencies usually do not provide this service or like it. Maybe there is one caregiver she likes that you can offer this two, or advertise on Craigslist.
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losingitinmo Nov 28, 2019
Thank you for the suggestions... I have put nearly all her expenses on autodebit, so that cuts down on most of the financial issues. Of course, the one-off bills are harder to deal with, but I'll catch them when I visit -- they may just be a bit late. As for less expensive care, unfortunately, she lives in an area with a huge demand for caregivers, so very hard to find someone willing to work for less money. But I appreciate the thought.
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Finally my mother had a slight stroke, now she thinks she is dying and we have moved her into AL in Florida. She is 94 and has lived by herself in NC, in a death trap for a senior, she refused to budge, so we just sat and waited, then it happened and we sprung.

There was nothing we could do but wait patiently, you might have to do the same thing, something will happen, it is just a matter of when. One thing I would recommend is that when it does move her closer to one of you, managing someone in a home from 800 miles away is not really doable.

Make sure all the legal documents are in place, Durable POA, Will, Living Will and so on. Prepare, do your homework, research homes in your area, as when it happens you will have to move quickly, within 2 weeks I had my mother an apartment in AL and next week I have the movers pick up her furniture and move it to Florida. In the meantime, I am renting furniture for her.

Plan now, something will happen soon, the odds are not in her favor.
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DILKimba Nov 25, 2019
Great Advice DollyMe! This is the time to be doing homework. Visiting places, having a plan in place so that when her hand is forced, it's not a panic to find something.
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Most elderly want to stay in their homes and refuse to move until something forces them. Does she have any friends who live in assisted living? If so, take her to visit during a meal and an activity so she can get a feel for such a place. I lived 5 hours from my dad and he finally moved to a place near me when he realized he was all alone where he lived. Would she consider moving near to one of you? You will fly through her money with that type of in home care. It’s probably cost more than living in AL.
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Davenport Nov 25, 2019
After wearing out (emotionally & physically) 3 not-young adult daughters (I personally became emotionally incapable within 5 years of living with and being PC) Sadly (and to me, tragically, but I don't want to overly dramatize, as everyone's different)--Sadly, I came to really dislike mom's utter lack of care/compassion/awareness of the hell we were going through and doing for her to 'indulge' her formerly cute stubbornness and refusing to leave her house long ;after it made ANY sense. She's still at home, and still putting us 65-70 y/o daughters through hell. Just venting here, which I feel guilty about but it really IS necessary to share.
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You can contact the local Area agency on Aging for advice and for a "needs assessment".

You can call the local police for an occasional "wellness check".

You can call Adult Protective Services.

If your mother is competent and stubborn, usually the best you can hope for is for her to become ill or fall. When she is admitted to the hospital, make sure that you are immediately in touch with the social services department of the hospital to make sure she is sent to rehab. That can turn into a permanent long term placement, so think about scouting out rehabs/ltc facilities near you if you want to move her closer.
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losingitinmo Nov 28, 2019
Thank you for the excellent advice -- she fell recently and was admitted to rehab, but we were unprepared. Next time, I'll have done my homework.
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