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Mom (age 90) is in skilled nursing (Medicaid). She is pretty lucid (diagnosed with mild dementia but since the diagnosis she has improved) however most of the people around her are a lot less so. She complains that there are few people around her who are capable of conversation, so she is bored. She doesn't like the nh activities (bingo etc). She's in a wheel chair but can walk, though unsteady, with a walker. She wants to go home but I live far away. She has had several falls, the last a broken hip. NH staff say she needs 24/7 care. We can't afford that and I don't think Medicaid will give it. I have warned her of risks of returning home but she is determined. I don't feel I have a right to dictate where she lives but I want her to be safe. On the other hand, quality of life is a factor. She is getting EXCELLENT nh care (great staff) but it isn't her home. I don't know what to do -- let her return home with the maximum care we can get from Medicaid or can afford out of pocket or have her stay in the nh where she feels isolated. It's a real dilemma for me. My fear is that if she returns home and can't handle it or has an accident she will lose her place in the nh and the alternative nursing homes will be poor.

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Emjo23:

"Have you costed out what would be involved in keeping her in her own home"?

To do this I need to know what services would be provided under Medicare or local social service agencies, public, private etc. Some would be free, others would charge. I cannot get an idea of this until the county aging organization had done their evaluation. I spoke to someone there who explained that they have a transition assessment service but she was vague about when this would get done. She didn't even ask the name of the NH or my mother, so her "I'll get back to you" was not encouraging. This led me to speak to the NH social worker to see if she could arrange the assessment. I am going to try to speak to her again tomorrow. I know that my personal situation is not the concern of the NH or the social worker but it does have an impact on my mother as I am now without a job, so have only limited savings and cannot sustain this forever. My life is basically on hold until we resolve matters.

"Have you discussed with the staff ways of addressing your mother's frustrations and boredom"?

This is something that I need to do. I did ask my mother if she would like the activities director to help her learn again how to play the piano (she used to be talented but has forgotten a lot). She was not interested but maybe some prodding by the activities director would help. She has another hobby that I am working on reviving. Other than that she is not a joiner, so getting her to participate is not easy.

"As an alternative measure you could keep her home for a few years before she goes into an facility".

This is the option that I am considering but I need some input from the county on what services would be available, just what she would need etc. Then I need to consider costs. My guess is that limited day care at home would be possible. There are a lot of other services I think she could get. Also could make several long trips back to stay with her. That would restrict my future employment but it is something I am willing to do if it can be worked out. The risk factor, of course, would remain. Ultimately, as you say, she would need a NH as normal aging and weakening will not make living at home possible, if indeed it is possible now.

"Or she could stay where she is and you and the staff could work on helping her to adjust to her new normal".

I need to talk to the nurse psychiatrist about this.

Finally someone has suggested that I take her home for a few days as a test. If she cannot handle basic things, it would be clear to everyone that living home is not possible. Is this possible, however, as she is now on Medicaid? Can you leave a facility for a week or so and retain Medicaid?

Thanks amigo and everyone else for your thoughtful comments.
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I see we cross posted, Vikki. You make a very good point about your mother not being able to make a sound decision on her own behalf. I had to face that with my mother who was an extremely intelligent woman who even with her personality disorder did some very remarkable things in her life. However, it slowly became apparent that she was not making sound decisions about her future, which was very much in contrast to the way she had been. It is not an easy transition for a child to take over making decisions for a parent,
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Trevor - it is very difficult making decisions for others at the best of times, and this is not the best of times.

When I was facing the question of safety vs what mother wanted and discussing it with family, my oldest son came out clearly on the side of safety and my other children concurred. I have operated on that basis and not been sorry. My mother has mild dementia too and is physically fit though has a life long personality disorder. She is placed in an ALF which specializes in caring for people with mental illnesses and it is working well. Your mother has early dementia and has physical issues. The dementia will progress as will the physical issues. I very well understand her desire to go home and it seems to me that you would have to provide 24/7 trained care and some specialists until such time that for one reason or another it became too difficult for your mother to stay home. Then you are faced with the same issue. For me, that she is receiving excellent care where she is and you may not find another pace as good would weigh heavily in the calculation. That she is in denial, to a degree, of her own needs and condition would also carry weight.

Have you costed out what would be involved in keeping her in her own home?

Have you discussed with the staff ways of addressing your mother's frustrations and boredom?

It is a dilemma. At the best as she is concerned she could stay in her home the rest of her life with adequate care. As an alternative measure you could keep her home for a few years before she goes into an facility. Or she could stay where she is and you and the staff could work on helping her to adjust to her new normal.

Don't forget yourself in the mix You also are adjusting to the fact that your mother has been diagnosed with dementia, and has decreased mobility. You need to provide for yourself and your future. The decision is not only about your mother and her needs but also about you and your needs. You gave up a job to deal with her stuff. Getting her reassessed and working with the NH staff to evaluate her needs is a great idea. Maybe then you can easier make a decision. Be sure to look after you.
Blessings
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I second the motion to get more of a comprehensive, objective, third party geriatric evaluation to guide you in this very difficult decision. It helped reassure me that my mom was not going to be able to return to driving or independent living in her own home and helped me with documents for POA activation purposes, and I never needed to go through guardianship. They could not talk her into moving to where I lived and she was kind of done with them at that point, but the perspective was invaluable to me and we saw a neurologist the same day who tweaked some meds that helped a great deal with her Parkinsonism (from vascular dementia) which the primary care doc had been too reluctant to try...well actually, they did not really even pick up on it, and some of the assisted living staff thought her retropuslion was voluntary resistance...ugh. The social worker on a good geriatric evaluation team will know enough about resources to tell you whether there is enough support to make returning home with caregivers and a LifeLine service a realistic and reasonable option. We had been kind of holding out for that, but 24/7 at home was not financially an option, and after the eval plus a couple episodes of delirium with minor skin and bladder infections, I knew it was time to make other permanent plans, though mom never gave up on the idea entirely. But, she did not have the cognitive skills to initiate and plan anything and in fact had even dismissed a couple home care people I got to assess her.

The wheelchair use could be less of an issue if the home was well-adapted, and the bigger issue is her judgement and how she reacts when she gets minor infections. If she is prone to going ahead and doing things alone that she cannot do safely, like deciding to get into the bathtub when no one is there to help, or trying to walk without her walker or do stairs that she cannot do, that's going to require that she is never left alone.

I totally empathize with the not wanting "to dictate where she lives" but if her judgement is not adequate, it may be a decision you really do have to make for her; it might even let her "save face" in terms of being able to say to herself "well I COULD have gone back home but my son would have been too worried about me and did not support it." If you have that kind of relationship where she will not hate you even if she blames you a little bit, that might be a good bet.
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GardenArtist, thanks for your well thought out comments. The consensus of the people who have posted here seems to be that my mother should stay in the NH. While accidents can happen at nursing homes, the risk is greater at home. Over the past few years my mother had four falls - one outside; three at home. The last one, a broken hip, was what led to her stay in a NH. After a number of months she has made a good deal of progress however she remains confined to a wheel chair aside from a daily walk up and down the hall with a physical trainer by her side. Mentally she is much more alert but she has not returned to her pre-accident state. While the pull of home and all that is familiar is powerful and understandable, there is the reality that life at home, even with a network of aides, volunteers, helpers etc, will be a good deal harder than life at the NH. My mother has never accepted her age. She has always looked younger than her years and has wanted to act like a younger woman. I think this is contributing to her sense of denial of her physical limitations. If there were more money there would be better options but the reality is that though the NH is not perfect, it is well run and provides very good care. I fully understand my mother's frustration and feelings of boredom. Life at home would be better in some ways but would present other challenges. In the end the whole situation remains a dilemma for me.
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Trevor, these kinds of dilemmas aren't like those that exist in work, which usually have more finite variables. I was thinking of that the other day in trying to analyze why some caregiving situations are so problematic, in part because there are no easy answers. Sometimes it's a gut feeling, sometimes a best guess, factoring in the issues discussed in the various posts here.

Can you quantify those factors? If so it would make the analysis easier.

There is a program called PACE (http://www.medicare.gov/your-medicare-costs/help-paying-costs/pace/pace.html), which as I understand it helps people to stay at home (or as described on the Medicare site "in the community") as opposed to going to a facility.

I've had it bookmarked but never thoroughly investigated it. It might help narrow down the variables in your analysis.

As to the issue of falls, my personal opinion is that someone can fall anywhere, including in a facility. The question is how quickly can someone get assistance - if your mother were to fall in the middle of the night, what would alert the staff?

During my mother's rehab, her roommate fell. The attention needed was provided when my sister (a nurse) called out "PATIENT DOWN in room ....". Then staff came running.

Had we not been there, who knows how long this woman would have laid on the floor? She wasn't screaming.

It may be that one of the solutions is for your mother to return home, until and unless such time as any dementia changes her ability to live alone. If that occurs, your decision will be easier.

If quality of life is the issue (and it is a major one), will she have a better quality of life at home in her own surroundings or at a nursing home where she doesn't want to stay? And it is HER life so she does have a right to participate in the decision making process.

It also depends on your own situation and plans for your future.

Don't push or chide yourself for being unable to resolve this dilemma; it's probably one of the most challenging ones you'll face. It would probably be easier to go back to work where the dilemmas are more analytical and solvable.
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Dementia is progressive but so too is physical frailty, especially once you pass a certain tipping point. I can't help feeling that if your mother were to return home and then be forced by another serious injury to go back round the revolving door of fall, hospital, rehab, NH it would just add a sense of failure and "fault" to the resentment she already feels at losing her independence.

And if I were put to bed at half past six in the evening I'd be pretty bloody resentful too. What are they thinking???

It's an incredibly difficult decision, but - I hope this is a comfort - from your description of your mother's mental state it is, you are correct, actually hers to make. What you can get very stern with her about is the self-defeating stupidity of ignoring medical advice and discharging herself against recommendation. That will be a very useful delaying tactic until you can do a bit more research and get all of her options down on paper, with prices and pros and cons as FF suggested. Best of luck, please update.
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Trevor, not to scare you but 40% of caregivers pass away while taking care of a love one. Those are terrible odds. Then what? Your Mom would be placed in a nursing home not of her choice.

And we could injure ourselves out of the blue. As we get older it takes us much longer to heal. I broke a shoulder in early May, and here it is late July and I still cannot drive. My parents are sitting in their house, like deer in headlights, grumbling about wanting to go to their doctor appointments :P
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Trevor one thing jumps out at me. Mom is in a wheelchair but can walk with a walker, She has fallen several times once with serious injury. Sorry it just can't happen. She won't be happy at home she will be lonely and scared. She is in a good place and skilled people who see her and others like her every day say she would not be safe at home. The only way it could possibly work is with you living with her and hiring other caregivers. I promise you you can't even carry a cup of coffee from the kitchen to your chair with a walker. Can she even get up out of a chair with her walker to go to the bathroom. Are you prepared to get up in the middle of the night and clean up the stream of diarrea from her bedroom to the bathroom. Wash her up and change the bed and do the laundry. The dementia or lack of is only a small part of the problem. Getting her declared totally competent is not going to improve her other disabilities. Living in you would have to be gone for a good part of the day to work and take multiple days off for Drs appointments etc. Of course you feel guilty and she really does want to go home but job one is keep her safe.
There are probably volunteers who would visit maybe take her out for a meal or a drive in the country, push her outside to sit in the sun. Does she have hobbies she used to enjoy. perhaps she knitted sweaters well maybe she can knit squares that can be made into blankets for the homeless. There are many hobbies that can be miniturized as we get older. Can she still see to read. If not how about books on tape of if the TV is limited CDs of current or old movies. Did she love horses? Well someone could take to a local horse show. Whether she stays or goes home she is going to have to become content with being 90 years old. So loose the guilt Trevor and do what is best for her.
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Babalou and Garden Artist, many thanks. Does she have dementia? I suspect a mild degree however I would like the nurse psychiatrist to do a reassessment. Today my mother complained about being put to bed at 6:30 PM. She can watch TV of course. Going to bed early is the way the NH works. At home she routinely fell asleep in front of the TV after eating dinner. She'd then get up at 10 PM and go to bed. I understand the psychology of wanting to be home. I would want the same. I want to have another assessment of her condition and what would be needed for her to return home. Is returning a good idea? Probably not but quality of life matters. If there is any way it can be managed I am willing to play my part. This situation has become a preoccupation that I think and talk about all the time. I don't live in the area and I've quit a job to return to manage matters and find a long term resolution. If only for financial reasons, decisions have to be made but I find it a dilemma that I haven't been able to resolve.
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Trevor, excellent summation of the conflicts of what someone would like to do vs. what's practical (or realistic).

Babalou, also excellent insights. It seems that most of the posts about where elders should or could live deal not only with what's the best for them and their caregivers, but also with what can sometimes be the lack of reality in recognizing the limitations of elder housing.

It's understandable that they would prefer to be home, but life is and probably always will be a balance of what people want vs. what's realistic, affordable and achievable.

I've always wanted to live in France, but it isn't going to happen when all I get for income is SS!
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Trevor, my mantra is this. As adult children of elderly parents, we can't make them happy (you carry happy around with you, no one can supply it from the outside, longterm). We CAN help to keep them safe. We shouldn't remake our lives so they can maintain an illusion of "independence ". Of course one wishes the privacy, personalization and freedom of living in one's own home. But as with school aged children some processes (education, eldercare) are done more economically en masse.

In your shoes, my real question would be, does your mom actually have dementia. That's progressive, and she would be well advised to stay put.
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Good idea, freqflier. Hadn't thought about insurance for a caregiver but I think that would fall under a homeowner's policy. Will ask agent. I think the real issue for my mother is existential. It's her home, what she is familiar with. The nh outweighs home in terms of safety, nutrition, convenience etc. What is practical is not necessarily what a person wants psychologically.
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Trevor... make a list of the pro and con for Mom living in her own home, and for Mom living in a nursing home.

Remember, Mom is getting excellent care in the nursing home.

Medicaid normally only sends out one Caregiver, as Medicaid feels it is far cheaper for an elder to live in a nursing home. Thus your Mom would be without help most of the day [that includes night]. A nursing home has 24 hour Staff.

Don't forget weather. If you live in the snow belt, think about power outages. In a nursing home, chances are the facility has back-up power. At home your Mom could be in the dark without heat for more than a couple of hours.

By Mom living at home, there will be property taxes, homeowner insurance and maybe a rider if someone is in the house helping, utilities to pay... then there is house maintenance [unless Mom lives in an condo apartment].

So start that list.... don't do it all at once... take a week to prepare it as things jump out at you to write down.
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Thanks for all these thoughtful comments. It helps to know that people are interested. I am trying to find out what the state will offer in terms of in-home care. In talking to a neighbor on Medicaid, it seems home aides are available. There is a local volunteer service that will shop for her, get her prescriptions and take her to the doctor (I also think there is a government sponsored transport service). Meals-on-Wheels are available and I understand an aide can come to help with a bath. Organizing all these and other help services would be essential but the risk of a fall remains. She has already fallen four times. The last was the most serious. We had a useful chat today. She wants to go home but she is aware of the risks. She wavers in her thinking. The thought of spending years in the NH upsets her but she also worries about falling at home (there is no absolute guarantee that she couldn't fall in the NH of course. She said that she had seen two such incidents there). Unfortunately she is right that there aren't a lot of people where she is who are conversant but because she is shy, it is all the harder. I tried to get her involved in church. There is one very close by. We went one Sunday and the people were very nice but I can't get her to go back. Does she know more people at home? Probably yes and a few who don't live in the neighborhood would stop by more often. Where she is now is a good distance from home and not easy for friends to get to. It's a very difficult situation. In reality she doesn't accept her age.
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I agree with Blannie on trying to help your mother integrate more into the facility's social life, beyond that of the bingo games. Talk to the activities staff and see if they'll take her to music and craft therapies. If there's a pet therapy service, find out which one, contact them and ask to be sure to visit your mother.

Bring a few things from home, but not so many that it appears she is going to be there for the rest of her life.

Bring a CD player (not an iPad) if she's used to one and can operate it. Otherwise bring a radio and mark her favorite channels. Music is a great soothing therapy.

I don't know if this would exist or not, but there might be some church groups or children's groups that visit people in rehab centers. You might try calling the United Way helpline, 211, to ask about things like visiting Samaritans.

If you do decide to bring her back to her home, I would get as much oversight as I could - life alert monitor, lock box for first responders on the outside of the house, internal surveillance so that you can monitor her from afar.

If she's friendly with the neighbors, ask that one or another bring her mail, call or check on her during the day. If she's a churchgoer, contact someone in the relief group or something similar and arrange for visits.

I would also ask her regular treating physician to script for home care - nursing, PT, OT and a home health aide. Add grab bars, remove trip hazards and do whatever you have to to upgrade the safety situation.

Get Meals on Wheels as well.

Good luck; these situations are always so tough - neither option is that desirable for one reason or the other.
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Trevor, that's a tough decision especially since your Mother feels she can manage on her own at home. That's the problem, denial by our elders.

And please note once an elder gets into their 90's, every year of life is like 10 years. I've seen that with my parents. My Dad always says they will manage. This year for the first time Dad realizes he can't do the yard work, nor the house maintenance.... he wants me to do it, sorry Dad, that ship sailed a few years ago because I had aged, too. My calendar doesn't shop going forward.

I know you are grateful you found a nursing home that has so many positive things going for it. And that you know if Mom moves out, she might not be available to move back in and has to go elsewhere. The tough part is convincing her. Thinking ahead, does this nursing home take Medicaid?

As for her mind, I know after I had surgery, I had brain fog for quite some time.... eventually it cleared up, but it came back after I had a serious fall and sustained a bad injury. The pain kept interrupting my train of thought :P Maybe that is what your Mom is experiencing.
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Would another possible answer be to find some people to visit her in the nursing home, so that she can have more satisfying social interaction? A church, school, or volunteer group perhaps?

I agree that with all of the conditions you've outlined, it makes much more sense to leave her where she is and to improve her social interactions there. And to possibly bring her a few items from home to make it more familiar. She is not going to get better, she is only going to get worse (a sad fact of aging), so looking ahead is important as you plan what to do for her. Your concern is admirable, but you don't need to jeopardize your own financial future to keep your mom happy in a situation that will only deteriorate long-term, which is sadly the case for all of our elderly parents.
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Babalou, I was thinking the same thing. Trevor, would your mother have any more social connections at home than she does at the NH, particularly if a FT caregiver can't be there? If your mother is like mine, she is wanting the comfort and familiarity of her home. I can understand this. The only question is if it would be practical for her to come home without 24/7 care. If your mother is like mine, she will tell you that she can care for herself and doesn't need help. If you know that is true, it would be a constant worry. And if history repeats itself, she will fall again.

If your mother is still legally competent, she can make her own decision about this. However, I don't know how she would pull it off without help from someone. I doubt she could even leave the NH without help from someone. And who would do her shopping? If she is on Medicaid now, she probably does not have enough money to hire the help she needs.

I wish she could find some type of personal fulfillment at the NH. Let us know how it is working out.
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I would suggest that you take your mom for a complete neuropsych workup which will greatly clarify her ability to live at home with help.

Does your mother have good social connections at home? My mother kept saying she didn't want to go to a facility because she would miss talking to her neighbors. But in reality, she never talked to the neighbors anymore, the ones she'd been friendly with had died. She only really talked to the mailman.
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Trevor only you and mom can make this decision. These are my thoughts. If you were able to provide 24/7 care for mom (whether yourself or paid help) take her home. However from what you have already said you are not in a financial position for the caregiver to be you and there is no money to hire help. Honestly, i dont think you have any option but to keep mom where she is. Medicaid doesnt help to pay for in home services in my state. Not sure where you are but you can check that out. Hiring home care aids is not easy nor quick. If there are problems with the help you will not be 15 mins away. Personally, i would leave mom where you know she is safe, clean and fed. Can you bring a few things from her home? Her favorite chair, some pictures, wreath for her door? Putting some personal items in the room could help. I gave my uncle a pretty candy dish and each time i came i would bring new candy. Good luck
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Thanks for your response. You guessed correctly that she had serious surgery and was confused afterwards. Since then she had made considerable progress. She has been diagnosed with mild to moderate dementia but I think the nh psychiatrist may have been hasty. She confuses some words and can be forgetful but not seriously so. I am trying to get the nurse psychiatrist to reevaluate her.

She is absolutely clear about what she means by "home".

I cannot return to the area permanently. It would radically disrupt my life. I have already quit a good job to return and manage her situation and to find some resolution. The most that I can do is limit my work prospects allowing me to return to the area a few months a year. My frequent visits to the nh, however, have not changed her feelings about returning home. In the meantime my long stay in the area is financially draining.

Selling property would not be enough to finance assisted living. There just isn't enough $.

The last time I got a report from the nh they told me that I'd have to sign a waiver stating that I was not following nh recommendatuons if I wanted to remove her. Not sure what this means should she return and have an accident.

I am trying to make the most humane and moral decision but I am on my own with no relative willing to assist in any way. Almost everyone who knows this case suggests leaving her where she is. The nh is not luxurious but it is very clean, well run and the care is excellent. The issue is that she feels isolated, despite my visits and weekly visits by a friend. I don't know what to do.
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Trevor, this is a real dilemma and I have no easy answers for you. First, you say her dementia has "improved". Does she really have dementia, or was she suffering from temporary disorientation in the hospital after her surgery? I would look into that and get her mental status clarified, because, while you may see some temporary improvements in a dementia patient, once they are in a stable environment, moving them often causes a rapid decline. So, if your mother has dementia and you move her "home", she may say "this isn't my home". She may be talking about her childhood home, or the home she had when she was first married.

Is there any possibility of moving her closer to where you live, so that you could visit more frequently ?

Talk to the staff about whether assisted living would be enough care for her. Could she sell her house and fund that?

But I would get her dementia status clarified first.
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