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.
"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.
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
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.
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.
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.
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
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.