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My Husband would like me to place my mother, I am not ready for that. My mother is not easy to handle, but we have been doing well. I left my job to care for our child, and in 2017 my mother moved in with us when my father passed away and she was no longer able to stay in her apartment.


My husband wants her out, he wants his space, and has even pulled the he pays the bills card on me. How can I explain to my husband that I want to enjoy all the time my mother has left. I have tried to tell him this but he just does not get it. I do understand dementia is a handful, and thanks to the fact my husband is able to support us on his own income is helpful cause it allows me stay home. I wish for our child to get to know his grandmother in a place she is comfortable with not in a nursing home, he did not have the chance to know his grandfather I do not want to rob him of that.


My mother and our son to get along wonderfully, and my mother loves having him around. I do understand that this was not meant to be a forever thing, but I am not ready to send my mother away. I use to work in a Medicaid SNF I know the horrors that go on. My husband downplays the quality of care they are capable of provide. I could not live with myself if I did that to her knowing full well how they operate.


My family told me to tell him if he wants her out then he has to pay for her placement to a better quality place, but in truth MC is not really the best wherever you go and the cost associated with private care is insane. By no means am I burnt out. I used to do this for a living so I am better equipped to handle it. My husband is the one that is burned out. He wants his home back. My husband is not much of a people person and have never really meshed with my family.


Am I being unreasonable for wanting to spend as much time as humanly possible with my mom and child? Having both of them around has been pure joy for me. Sure she is complicated show me a person with dementia that is not. I understand his feelings, but I do not think it is fair to have him tell me when it is time to place my mother. I get it he just wants it to be the three of us, but that is not how things are right now. I have told him we still have many years together we can make up for lost time, please find some enjoyment. Our son has a chance to spend time with his last living grandparent do not rob that from him.


He was not pleased by this, I get it might be heavy handed but that is what he is doing. I have seen it many times I know many families say their loved ones are doing great in MC, and sure some are. Though they are not around all day. My mother, hell no one deserves to die in such a place if the a family member is able to and willing to put in the work at home. I get it I can do this because of him, but even still that should not give him a reason to tell me how to care for my mother.


Please advise what should I say or do, we have tried to talk it out and he is hard stuck on this.

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No, you are not being reasonable. Your family should be your priority. Do you want your son growing up thinking it is normal to have grandma living with him when he is older? Do you want him to think he has to provide for you when you need care? Why can't mom still be in her apartment?

There is a bit of drama in your question. It is not sending your mother away. You are not robbing your son of getting to know grandma. It is teaching your son what a relationship should be. It is stressful for your husband to have her there. Do you want your son to grow up with his father or his grandma?

It probably is not a skilled nursing facility, that is much later. Have you checked into assisted living facilities, memory care? You think they are terrible places which leads me to believe you have not. There are many very good facilities with quality staff where there is more than one person to take care of her.

Go shopping with a positive attitude.
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Stuckinthemid Feb 2022
She cannot be left alone, and has a wandering risk so AL is out of the question. At least here the MC units that have Medicaid beds are generally just floors in a SNF. Medicaid will not provide the amount of hours and care she needs. At home I am capable of doing it. Majority of her behaviors are not complicated, but the wandering, difficultly with redirection, and lack of boundaries will make AL a hard sell. I know they will deny her for AL in a heartbeat. Only income she has is SS so the MC pools are limited to the ones that have Medicaid beds and those are few are far in-between and the decent ones often have a waiting list, the ones without a waiting list are like that for a reason.

I would not say it is drama, I just worked in the system I know how it works, I know how staff treat difficult patients. Of course I want my our child to have a father, thing is I would not ask him to place his parent if he was not ready to do so. I have seen what families go through, I have dealt with the tears and broken heart of the LO that is placed. It is something that should be the last resort, as the caregiver I am not even close to my breaking point. I use to deal with far worse at my old job. My mom is a cake walk. I do understand where he is coming from, problem is he is unwilling to even understand where I am coming from.
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Double post.
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Stuck, what you have is a marital problem, not a caregiving problem.

See a marriage counselor with your husband.
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Ledwards71 Feb 2022
Totally agree
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What happens financially if hubby decides he is not going to live like this any longer? He works hard for his home and his family. He deserves to have a calm place at the end of the day. You are taking that from him.

Find a marriage counselor and a therapist for yourself.
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Nokonoko Feb 2022
My guess since they have a kid he will still be on the hook to support her.
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I know you did not say this, but I do think it would be wise to adjust your tone towards placement on a caregiver forum. You appear to have your own personal preference but it comes off as anyone that places a LO so they can live is inherently selfish and a bad person. Also seems you are faulting people for using the resources available to them. Maybe I am just reading too much into it and also being overly sensitive.

Just the tone I get.
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"My family told me to tell him if he wants her out then he has to pay for her placement to a better quality place, "

Maybe it's time for someone else in your family to take her in?
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In my experience people usually do as they want.

If you don't want to place your Mother in MC, you probably won't. But it might have consequences on your marriage you don't like.

I agree that marriage counselling may help you both to hear each other & see each other's viewpoint.

Compromise may seem impossible but can work too. I've met people who's LO lives in residential care but is brought home for weekends or every second weekend. (As longs as that is not too unsettling for Mom of course).
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So, she can't be left alone. Meaning that you are "on duty" except when she's asleep.

By definition, you are thus neglecting your child and your husband.
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gladimhere Feb 2022
Is she abandoning the marriage? I think so.

Mom has been there five years. I think hubby has been more than patient and tolerant with this situation.
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My grandparents were immigrants from Greece. There were all sorts of living arrangements with their 4 sons. As they aged they lived in a small apartment in NY near 2 of those sons. My father lived in CA. My grandparents would come out and stay for several months at a time. They both cooked,wonderfully. They didn't drive. My grandfather would walk to buy some needed groceries. My grandmother made dishes he didn't. She cleaned,did laundry,darned socks. She babysat her grandchildren and later even her great grandchildren

After my grandfather died fairly suddenly at 79 my grandmother lived with one of those sons doing all I mentioned above despite her grief. She was 10 years younger.

After many years her health declined and a Greek AL facility was found for her. This was a wonderful place as everyone spoke the language. Sadly after a few years her health declined further and she could no longer walk. She was then placed in a NH facility. I visited her there and left crying each time but she simply needed too much care. She lived to be 98.

My point is that there are circumstances that make sense for an aged parent to live with family but there can come a time when the burden is too great. All your family's needs should be considered. It would be wonderful if each of us could simply pass in our sleep when the day to day life becomes so difficult that we wonder what is the point of all the suffering. Of vourse that is not the case and we must weigh the options that is best for all family members living together.

I learned so much from my grandmother. My mother was not overly maternal. She was a dancer and then she became depressed spending periods of time in bed which confused me. I have wonderful memories of living with my grandmother. I feel her qualities live on in me when I am around my grandchildren. Your husband and child are your future. With the background you mention perhaps you could find a facility you would find decent. It is wonderful you have housed your mother this long but perhaps it is time for a change.
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Debstarr53 Feb 2022
Your reply is a refreshing change from all the nasty comments. Op has a dilemma to figure out, for sure.
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It is wonderful for children to have the love and companionship of grandparents, but from what you have said, you are willing for your child to be without the love and attention of his father?

Your comments about residential care for the dependent elderly are by no means universal, but you are allowing yourself to justify making unilateral decisions that will impact on your whole family with no attempt to find a placement that would satisfy you.

You’ve already expressed your displeasure with your husband, but you are actually doing the same thing to him.

Many, MANY of us have experienced situations similar to yours. I slept on the floor next to my mother’s bed for months while we made a horrendously difficult attempt to care for my mother in my home.

Together, my husband (who loved my mother dearly) and I decided that my mother needed more care than we could provide for her, and we found a fine SNF near enough to my home that I could (and did) make daily visits, which I did (twice each Saturday and Sunday) for the 5 1/2 years before she died.

The Bible says “A man shall leave his mother, a woman leave her home….”I

If you want a life with your husband, honor his right to a wife and a mother for his child.
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“I do understand where he is coming from, problem is he is unwilling to even understand where I am coming from”. After 5 years of you and your mother, the probability is that he knows exactly where you are coming from. I’m sure you’ve told him many times, he understands but doesn’t agree.

Two things for you to think about:

1) You worked in a Medicaid NH which you thought was not good. How much effort have you put into finding a better one? They are not all the same.

2) Have you considered how you, your son and your mother will live if DH gives up and leaves? DH will pay some child support for your son, but he won’t be obliged to pay for M, and (depending on local laws) he won’t be obliged to pay for you. (Where I am, he wouldn’t pay for YOU, only child support on a scale depending on his income, and certainly nothing for M). Property settlement on divorce will probably force the sale of the ‘family’ home – fair enough, DH needs his share to start the new life without you and M. So where will you go, where will M go, and how much ‘quality time’ will son then be spending with M?

How old is M? What is her life expectancy? How much longer do you expect to keep her at home? What is YOUR sticking point for giving up? What is DH’s sticking point for getting out? How much do you know about divorce? We have had posters who seemed to think that DH would leave (possibly taking the car and the sound system), keep paying the bills, and nothing else would change.

You are stuck in your mind about keeping things the way they are now. They will NOT stay that way indefinitely. If you can't see it, you certainly need a counselor and some legal advice.
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notgoodenough Feb 2022
"DH will pay some child support for your son"

And that's assuming husband doesn't sue for custody and win; if he can make a case that living in a home with a person with dementia is not ideal for a child; and he might be able to prove that he can provide a more stable, stress-free environment for his child.
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He doesn't understand where you are coming from? WTH do you want from this man? 5 years he has supported you taking care of your mom at the expense of him having his home and privacy and you have the nerve to criticize him for wanting his home and family back?

I have to say, I am appalled at the number of LTC workers that come here and say how horrible they are. It's your job to make it not horrible and to provide care, yet you talk about the nightmare care. Think about the part you played in creating that environment for those poor people. I'd be worried about karma too.

If you don't prioritize your marriage, you will have your mom as long as you want. To bad for your husband that he married a selfish, self-centered female, he sounds like he deserves so much better then you.
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Sighopinion Feb 2022
Yes, it is extremely damaging to families to hear such views.
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All medicaid available placement options are not bad please stop with the fear mongering. Your views are not helpful many people are on the fence and feel terrible about placement it is irresponsible to paint them as horrible due to your own personal experience.

For anyone on the fence or scared Please do not let others negative experiences deter you from doing what is best for yourself and LO. Do the leg work find the best possible placement and do not second guess yourself. If anything happens it is not your fault they failed not you. Please do not buy into the fear and bad rep medicaid facilities get. Many factors come into play state, temperament of patient, staff, location, size etc... you are important and you deserve a life.
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lealonnie1 Feb 2022
Amen.
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It's not unreasonable for you to want to spend as much time as you can with your mother. But it is unreasonable for you to expect your husband to feel the same, at the expense of his privacy and his mental health, especially knowing him to be someone who is not social by nature. He has already compromised. He's asking you to recognise when enough is enough.

Would you consider looking for a memory care unit where you might take a part-time job, either now or in the near future? - not as your mother's caregiver, but as a member of the team working with others to improve standards. As someone who has worked in the vocation, don't you think it's up to us to try to make it better rather than to fight to the last ditch to keep anyone we care about away from residential care?
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You've already made up your mind that your husband is wrong and you are right; that all facilities are horrible houses of horrors and that's that. Why are you asking advice from us when you've firmly entrenched yourself in the illusion that your mother comes first, and your marriage comes second?

I challenge you to put the shoe on the other foot; think about if this was your mother in law, your husband's mother who was suffering from dementia, living in your home and intruding on your privacy for 5 years already, taking up all of your husband's time and attention. And it was you begging him to place her so the two of you, together with your child, could have a normal family life once again. And he was the one who was throwing around wild stories about the horrors of managed care and how he didn't want his son 'robbed' of the opportunity to spend every waking moment with his last living grandparent. But you were feeling otherwise, and robbed of YOUR family time due to your mother in law and her ever-worsening dementia. How would YOU feel? Unheard and like you had no voice in your OWN HOME, I would imagine. Like your marriage came second to his mother, and you'd be correct.

No, he is not the one being 'heavy handed'.......YOU are.

When is enough enough? He's paying all the bills and you are saying that "he has even pulled the he pays the bills card on me." Unless he has a money tree in the backyard, he IS paying all the bills and with inflation being at an all time high, his point is valid. Sorry.

As far as 'your family told me to tell him if he wants her out then he has to pay for her placement to a better quality place', isn't that rich? What about THEY take their mother into THEIR home instead of YOUR husband footing the bill for her placement in a Memory Care ALF which you've already said isn't a great situation anyway?

My mother has lived in a wonderful Memory Care ALF for nearly 3 years now, and in regular AL for 5 years prior, and let me tell you something, she's getting MUCH better care THERE by a team of people working 24/7 than ONE person could EVER provide her in a house setting. Don't kid yourself. And don't put the burden of that cost on your husband either, it's not his burden to bear.

You're looking for justification that your 'my way or the highway' shtick is the proper way to go here, but you won't get it from me or most of us here on the forum; you're barking up the wrong tree I'm afraid. I'm sorry for your husband in this situation that he's married a woman who has no interest in his feelings whatsoever.

In a normal marriage, you'd accommodate your husband's wishes and arrange it so that you and your son would go visit your mother on a regular basis. Not only would she have a whole new social environment in the SNF, but she'd also get to see both of you on a regular basis, making it a win-win situation for ALL involved, not just you.
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lkdrymom Feb 2022
I agree with everything you said. The poor husband has supported the OPs decision for 5 years and her family of origin has the nerve to say he should pay for a facility too. How about another sibling take her for the next 5 years? Seems fair to me.
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Your first priority is your immediate nuclear family, your husband and your son. You Mom has lived with you for 5 years. It is no longer working for your husband and he has asked that she be placed.
As to the rest of the family saying that HIS money should be used for this, they are out of this world full of nerve. That is nonsense.
I cannot know how strong your marriage is at this point. I think I would recommend you see a marriage counselor, a psychologist or a licensed social worker to work out some sort of agreement. You may be able to compromise on how much longer Mom will stay with you.
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Ditto to your husband and child being #1 priority. My 87-yr old MIL is on Medicaid in a wonderful facility (in LTC). Please visit some good places to see that they are not the hell holes of yesteryear. She will have some independence and you will have a happier home life -- you can see her whenever you please, and she will have some much needed social exposure and options for activities, events and outings.

Think about all the people whose parents retired, moved to FL or AZ and only saw their grandkids once or twice a year? It's not the end of the world. You mom can also have a life separate from you.

If you are really struggling with this I also strongly agree that some couples therapy would help. Moving your mom out does NOT mean you don't love her (even though she may not be fond of the idea). It does mean you do love and respect your husband. You won't regret it.
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So your mother isn’t hitting or cursing you yet, or have to change her diapers yet? Or she can start hallucinating. She has dementia? Place her before nobody will take her. What if one or both of you got sick?
Place her while your son still has good relationship with her.
Hubby’s $$ should not pay for it..this is your mother’s $$ should pay. Your family is worried about inheritance. If she qualifies for Medicaid, the facility can help apply.
I side with hubby . Hugs 🤗
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You and your child can spend quality time with Mom in a MC (which by no means is a horror or anything bad) and your husband gets his home back.

I think you're out of line.
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Stuckinthemud, you say your mom and your son get along wonderfully.

Have you stopped to think about the impact on your son, should your husband decide he's had enough and leaves? How do you think your son is going to feel, when he puts together that dad left mom because mom wouldn't choose dad over grandma? Who do you think he's going to be the most angry with? His "wonderful" relation with grandma might very well fly out the window.

And, suppose you get your wish and keep grandma until the bitter end? I don't know how old your child is. Are you prepared to tell him why you all can't go on vacation like the rest of his friends, because of your mother? Why you can't make his games, concerts, plays, etc. like the rest of the moms because your mom can't be left alone and you can't find a sitter? What about when he wants to invite friends over, but he can't, because grandma is now saying inappropriate things, or behaving in an inappropriate manner? Or maybe he's just too embarrassed with grandma to invite friends over. How are you going to handle HIS stress, when your mother's dementia really worsens, and you're dealing with wandering, incontinence, possible violence? You say you've worked with dementia patients, so this might be "normal" to you, but to a child? It's going to be dreadfully traumatic. Could it be your husband is already seeing shades of this?

My kids were 19 and 23 when my mom got so sick; and her illness was "mild" in comparison to ALZ. Mom lived with us - in her own apartment - since my eldest was 2. And my mother's illness and decline was terribly hard on them, from the fear of seeing their grandma so sick to the resentment - yes, resentment - that our lives as a family were in hiatus while my mom was ill and dying. Her death was very traumatic for them as well. And my kids were adults by that time.

I think you need to *hear* - not just listen to- to your husbands very justified concerns about this living arrangement. And take into consideration that there are 3 other lives here whose well-being have to be taken into consideration as much as your mother.
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lealonnie1 Feb 2022
Notgoodenough: The OP says, "She cannot be left alone, and has a wandering risk so AL is out of the question." So she's already a problem and can't be left alone. This is the tip of the iceberg with the problems that lie ahead; I'm sorry for the husband AND mostly, for the son who won't have a mother b/c she's too busy tending to HER mother who cannot be left alone. What kind of childhood is that for a kid? I grew up with a grandmother in the house & it ruined MY childhood, I'll tell you that (but not for dementia reasons). Many parents don't take the reality of dementia into consideration as it affects their CHILD.  And what if the parents start fighting due to the added stress of her mother? THAT will DEFINITELY affect their son!
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I echo every.single.thing Lealonnie said. Well, I echo what many have said, but Lea brought up every point I had in my mind when I read this post:)
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Why is it always LTC workers that bash facilities? Don't they understand how they influence families choices? When I had to place my LO I was told that they were not ready to be placed they were too high functioning, or that they would probably get worse. People like the OP were the ones that were trying to guilt trip me into putting my life on hold.

The system can be improved but to try and sell they were horrible because of a few bad apples is disingenuous.
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MargaretMcKen Feb 2022
Most aged care workers are underpaid, and work in a top-down management structure with little 'power' themselves. Even RNs get squashed by doctors, whether or not the doctors are competent. It's a highly hierarchical environment. Their worker's experience (thank heavens) may be worse than the experience of the people they care for.
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I find it strange how people are trying to defend the quality of elder care facilities in a system that has staff being overworked, underpaid, and at the mercy of the Doctors and social workers as MargareMcKen mentioned. As the staff we have very little say when a social worker walks into the room with a new admission and up sells DNR's. I cannot tell you how many times I have seen social work do this for patients that have been brought into for short term rehab but they were talked into getting a DNR. Having them tell the families they have one in place, saying how normal it is. Also times when we have a restless patient that has been recently brought in from the hospital and they are scared and confused, very few staff take the time to try and calm the person down, often their first reaction is to call the doctor and ask for permission to sedate the patient on the grounds of "safety". Love it when we get a larger patient and I come in for my shift and they have not been changed because the staff is afraid of getting hurt.

Some say I should voice my concerns, I do but then you are considered a snitch and at that point you have to work in a toxic environment because you dared to put the patient first above a paycheck. Sure, I have also worked in some wonderful facilities but generally those are few and far in-between at least in NYC. The truth is everyone who has worked or has experience in LTC knows the gritty truth about what really goes on behind the doors. To hide between the few places that are run well is what is truly disingenuous in this conversation.

That said I understand the my husband is at the breaking point, but what he does not understand is placing my mother will be a tall order. She is still physically fit, active, and does not respond well to unfamiliar places and people. Isolation also triggers her anxiety, with covid she will be fairly isolated. I also know placing her then taking her out for the weekends will be a bad call, because under the slim chance she adjusts all that will do is reset her and make the staff's job that much harder because they will have to readjust her. She also has a big mouth, and still has some grasp as how to use her phone, I will be getting calls left and right not like it is will be all that much easier. Placement does not remove the stressers it just slightly adjusts them. She only has SS and Medicaid, I am in a shitty situation cause I know my mother she will not adjust well to placement at least not yet. I will be stressed because my mother will be calling me constantly, and with what I know I will not be able to just to chalk it up to her overexerting I will feel the need to check on it myself. Do you really think having to drag our son around each time my mom has a panic attack is more ideal then having her home with us? What life is that? His father works during the week not like he will be able to watch him while I take care of my mother. Me going back to work also limits our sons interaction with his parents. As I told my husband I am sorry I will not be able to turn off the part of me that will be concerned for my mother, that is something to a degree you have to do when you place someone. You have to have a sense of faith in the staff that they will do right, I do not have that for any place in NYC that has availability. I have reached out to contacts and the ones that are accepting have horrible staff retention and mortally rates.

I am not sorry for what I said about placement. It is my experience, you may have your own but it matters very little cause I bet no one would be saying that if they lived in NYC. If my husband is willing to leave me because I care for my mother so be it, that is something he will have to start. I am willing to work something out but placing my mother is not it. If it was my MIL I would also be against it even if we did not get along. Proud to be a good kid.

I will say for certain in the NYC area our Medicaid eligible facilities
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Stuckinthemid Feb 2022
Character limit is rough. I will say I know this is less than ideal our son, I am not blind to that. I am doing the best I can with the situation I have. If my son or husband grow to hate me for it so be it. I have to do what I feel is correct, and condemning one person for another when I still have the means to help both just does not seem to make much sense to me. Do I expect my child to care for me when I get older. no I do not. I expect him to do what he feels is best and allows him to live his life proudly. If placing me is that choice I would be proud of him, but if he did something because the masses told him it is what he should do I would be disappointed in my son.

I do hope if he does grow to hate me, when he is older he comes to understand why I had to do what I did. It is not an easy choice, nothing about this disease is, every family has to make difficult choices that we do not know if they are the right choice end of the day all we can do is making the choice that we feel we can live with in that moment and try not to beat ourselves up. When you have seen others pass alone in a NH it does something to you, and by no means if I can avoid I do not want to put my mother through that. No one should ever have to die alone if it can be helped. That is where I am coming from.

What comes of this because of my choice so be it, I am sorry for evening coming her. This was my fault I knew generally many would not understand, but for those that do thank you I appreciate it.
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Divorce and the father gets custody, seems to be what you want.. You're neglecting the child in order to take care of a dementia patient. So, you won't get custody.
You're emotionally abusing your husband who has no peace in his own home.
He's gonna walk and sue for full custody. And he'll win.

You'll have no financial support and will have to get a job thus being unable to tend to your mother and will end up having to place her.
It's a nightmare scenario you're is creating.
As for him paying?!...So, YOUR family thinks that HE should take money away from your child's future to cover their future inheritance??? Your mother pays, medicaid, and her children pay if they want her to have more perks.
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Stuckinthemid Feb 2022
How am I neglecting my child? My husband will be hard pressed to even prove that. It is not as simple as my mother has dementia all my time is taken up. He will have to prove that I am unable to do both in a hearing. and that I am in fact neglecting our child and we all know custody hearings are rarely ever black and white. Many factors are at play, the fact my husband works upwards of 80 hour weeks and travels will be a hard sell that he is a better fit for full custody.

I do not agree with what my family said, and I am not proud of even bringing that up in the first place. Where exactly do you see inheritance. She is on Medicaid and her only source of income is SS? What are they are going inherit? Credit card debt? If she had assets I would have a far easier time placing her because I know of many great private pay entire MC facilities where I do feel my mother would thrive. No aspect of isolation every resident has some form of memory related condition and their safe to resident ratio is fairly small. Problem is quality care costs money, I wish my mother had money I would easily use it to pay for her care in a heart beat.
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I have to stand up for the OP, here.

1. I work in the business and I completely understand how disheartened she feels about it.
2. Among our clients, the ones who are most often afraid of us and afraid of receiving care are those who have worked in care. Not afraid for long! - I'm happy to say, because our team is different from the run of the mill; but it's noticeable how apprehensive they are and how low their expectations are compared to the overall client base.

I've been in my job for over two years now. I have nothing but praise for my co-workers who I know to be good, caring, dedicated people. I have learned that I am not the only one who cares, and I need to be more accepting of not solving every problem. I have also learned that my lifelong habit of being vocal about standards because "I'd rather be right than popular" simply does not work here. If you try it, people will just stop listening to you. They won't have it. They won't be told *by you.* They will think you are an arrogant cow who needs taking down a peg or two and you will achieve nothing to the benefit of your client.

And I work for a *good* service, and our clients are not vulnerable in the way that residents in facilities are, wholly dependent on the staff 24/7.

You can do your best to set an example, you can get as close to the standards you believe in as possible in that moment; but you cannot create the time it takes to deliver excellent care and you cannot just barge in and tell your co-workers to change their attitude, method, insight, understanding and personalities. Much as you might like to!

And actually, it all comes from the top. Good leaders make good teams, because they make standards an aspiration for their people instead of a threat.

Stuck, keep looking for a facility that is well led. Meanwhile, what about additional support at home, or respite care, or anything that might take the pressure off?
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Stuckinthemid Feb 2022
Currently I am in the appeals process to get more hours through Medicaid, and also trying again for the NHDT wavier to get split shifts. I have also reached out to services provided by the JCC and other community agencies to get some respite. My mother can be picky so finding a suitable day program is tricky but I am currently looking.
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Your mom is on Medicaid in NYC?

Every one I know with a parent with dementia on Medicaid in NYC lives on their own with a 24/7 aid. Did you explore that possibility?

Having a parent with a broken brain on psychotropic meds is not "sedating" them. It is treating the panic, agitation and depression that often accompanies dementia. I was happy to be able to give my mother the gift of "calm" in her last years when no one, not me, not around the clock private paid help was able to ease what appeared to be existential dread.

You really want the EMT to do chest compressions to bring your mom back from a cardiac event? So she can linger until she is a drooling shell of a person who can't swallow? THAT is the reality of where this awful disease leads.

I know that none of us here will change your mind. I just think you have an awful sense of where your priorities should lie.

I really think you need to seek a good marital therapist to work this out.
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Stuckinthemid Feb 2022
Yeah we tried the NHDT wavier, unfortunately she has failed the to pass the assessment that would grant her access to the split shift aids. The nurses that my mother got go by the book, and her issues are not "severe" enough. You know the system when someone falls in that dumb grey area where anyone with a brain clearly can see they need help, but because insurance companies do not want to pay out they come up with every excuse under the son. Even her wandering because we live in NYC I cannot call it wandering because she knows where she is going. We live in Brooklyn, and our house is in her old neighborhood so her long term memory kicks in. Though if I take her anywhere else she would get lost in a heartbeat.

My husband does not get how dated the system is with dementia care, it was a battle just to get her 4 hours, and even with that her aids sometimes do not even show.

I know the difference, and when I worked that night shift I would take the time to validate their concerns and comfort them as best as possible. People would be amazed how simple things like holding their hand and looking at them in the eyes telling them it will be okay goes to sooth them and relax them. Sometimes I would even take them around for a walk if they are getting restless, and engage with them. You can do other things before going whelp time to get the medication because person in 6A keeps bothering us while we bullshit at the front desk watching tik tok.

If they have a life threatening condition then sure DNR is reasonable, but I always tell people make sure you talk to a doctor about it not the social worker. Discuss their concerns with the doctor, the social worker may not have what is in the best interest of the family in mind. As I mentioned I have seen social workers get families to sign a DNR for someone on short term rehab. I am sorry that should not even come up in the conversation in my opinion. They are here for rehab not to die, this is why I also tell families unless you have ZERO means do not use these SNF for short term rehab. At most they will get 30 min, and unless the person speaks up or has a family member present they will often "forget" about the person and they will miss their time. The system is flawed to the core.

I fall in the camp of positive approach advocated by Teepa Snow. Yes medications play a role and have a use do not get me wrong. I am not denying that. What I am saying is often people are quick to use that as the first course of action when I do not feel that should be the way unless someone is truly expressing harmful behavior.

I have seen someone make the claim that a 82, 4'1 female posed a danger to a 5"11 worker because she kept getting up asking for milk at night.
When I did not back up their claims that she posed a danger I lost all respect from the staff, people would go out of their way to make my job harder because I did not back up their claims which would allow them to have an easier night shift. The quality of worker some of these places hire is jarring to say the least.
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I felt the same way you do.

I stood firm and took care of my parents while my husband complained.

My three young children pitched in here and there. (My husband refused to help, but paid the bills). He was very antagonistic at times.

For my young children, this experience was extremely beneficial. They became more responsible, caring, capable and empathetic. They developed a priceless grandparent bond.

It was very difficult at times, but I recall these times with great tenderness and have no regrets.
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bundleofjoy Feb 2022
amazing, wonderful, all the love/care you gave.
:)
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Stuck, I just PMed you the names of 3 places in Brooklyn. Have had friend/relatives in all three at various times, know a doc who visits to do assessments.

No facility is perfect, not nursing homes, not schools. A very wise friend told me once, vis a vis public vs private school "you can be unhappy for thousands of dollars a year, or you can be unhappy for free".

My mom was in a Medicaid-accepting NH (not in NYC) because we didn't know if she'd run out of money--she lived for 4 1/2"years there. It was not the "best"--they were terrible at communication and I spent many, many hours on the phone, untangling problems.

There is no "easy" way to have a parent with dementia; we sometimes joke here that we are all in the club no one wants to join. Sometimes there are no "good" choices, only the least bad ones. But do gives me thought here to where your loyalties and priorities need to be.

With the breadwinner and the future generation?

I am almost always on the side of placing dementia patients early enough so that they can adjust to new circumstances. You will have to place her eventually--no one person can do this 24/7 in the end stages. Give it some thought and take some tours.
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Stuck, your job isn't to make your mother's life perfect. Yes, there are poor actors in NH sometimes. If/when your mother enters one, your job becomes that of her advocate.

You visit at different times. You encourage family to visit. If you motive things that are unacceptable, you report them to administration. You involve the ombudsman.
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Nokonoko Feb 2022
I agree with you, but after reading everything I get why she may be hesitant. I have a friend that is an ER doctor and since they have seen many possible failures of elective surgery they are against such surgeries even if they would great improve quality of life. It is difficult to shake your stance when you have been around the negative side of the spectrum. Their perception is skewed, and they are using their own life experiences as a litmus test.


The OP also might be hesitant cause I know as family we can encourage others to visit but sooner or later she probably will end up being the one to visit and that will become a chore the traveling and dealing with staff will become a annoying to say the least. I loved my grandma but visiting her every weekend got old very quick as I got older by the time I was in elementary school I remember asking if I could just stay home.

No matter how hard we try for the most part visits start to dry up even for the most diligent. Exceptions to every rule but I can see the fears now if they have lived that.
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Untie the apron strings and prioritize your life as 1. mother, 2. wife, then 3. daughter. I see your husband has compromised for 5 years, but you remain rigid in your decision. You are lucky to be able to stay home and raise your son, not many have that luxury. If you are unwilling to compromise with your husband you could possibly end up having to go to work to support your mother and you and have to pay child support to the custodial dad. More courts today are willing to give custody to fathers so think twice about what you want instead of what is best for your son and husband,
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Nokonoko Feb 2022
Fact he works long hours is a major win in her book no slam dunk but it is a major feather in her cap and remember he had to prove she is neglecting her duties as a mother. Caring for another person does not inherently mean she is neglecting her duties as a mother. Which we have no way to confirm that to be the case.

I think we should stop using custody as a point to persuade the OP cause it could go either way.
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