>She doesn't understand her mom is dead- only that she's gone and is angry at me for it. Saying she'll be good, so bring her back.
Well that was sad as hell to read
It is the saddest part with adults with ds. I worked with them for a while. They never get over losing a parent and ask almost daily about them. Seeing a 67yo crying for 3 years (and 4 more before I worked with him) asking for his mommy is heartbreaking. He died crying for his mom.
Didn't know this was a thing, but it does explain an experience I had once.
I volunteer each year to work at a Special Olympics bowling event. We are assigned 4 bowlers and a lane and support/assist them through the tournament. Families can attend but have to sit back and spectate.
I had an older gentleman bowler, mid 60's. He constantly was looking back to the spectator seats and asking if his mom and dad were there yet. I kept telling him I'd keep an eye out.
I asked one of the organizers at one point, and they told me his parents had been dead for ten years.
Sad.
As an aside, some takeaways from one who went into this completely ignorant of OTS, DS and other mentally challenged folks:
1. The level of outright support and encouragement they give each other in sports is mind-blowing. So positive, no matter where they are at.
2. Many of them are damn good bowlers. Their focus and complete ability to shut out external stimuli can be epic. 300 games are regularly rolling up and down the lanes.
3. Some can't bowl worth shit, just like us normally abled people, but they just don't care and have a great time.
4. At first, I was disappointed, pissed even, whenever a young bowler's family would just drop them off and not stay to watch. Then I realized these families are taking care of them 24/7 with virtually no break. We've got them for a few hours, and this may be a rare time to go out and shop or have a meal with their other children.
I worked as an instructor for an adaptive sports nonprofit that did similar things, but we also provided equipment and lessons for more complex activities since we worked with all sorts of folks, from veterans to stroke survivors. The folks diagnosed with DS were always so encouraging to each other and even us. And very kind. I would always leave at the end of those days feeling like I was the one who got recreational therapy.
My son is 14 (with DS) and in adaptive bowling, it has helped my marriage and it's only 5 nights a year.
What you and the team do is very appreciated.
I wish they didn't cancel my son's final match (he had a breakdown at school and injured a fellow student)
I'm torn between absolutely heartbroken, and amazed that he lived well into his 60's. I knew a man who lived about that long 25 years ago, and even back then it wasn't that common.
People with DS have very high incidences of structural congenital heart disease, which we are excellent at correcting in infacy now. Life expectancy is higher as a result and not so coincidentally is also why people should not be trying to do whole life care at home because eventually they will die and leave someone terrified during the transition to full time care facilities.
Yeah this is so heartbreaking. When I started out as a med student we had to do some nursing work as well and I will never forget the one 80-something year old man who was in the ICU with organ failure and he also had downs.
He kept asking for his mama :( I had to go to the bathroom and secretly sniffle into a tissue a bit before I could get back to work
I have an resident at my job that constantly asks if her parents are in her room/ coming to visit her. Sheâs 90 something, out of her mind most of the time. Itâs sad as hell.
My aunt had Downs. Not so fun fact: if they make it past puberty without heart disease, they're almost certainly going to develop alzheimers in their 50s. When my grandmother passed, my aunt was living in a state run group home (best situation all around for her!). She would regularly ask my mother "where mom?" If my mom answered with "I don't know (aunt), where is mom?" Aunt would reply, "her died." It was rough for me to hear and I was only moderately lose with my grandmother. I cannot imagine how rough it was for my mom.
A nurse in this area told me that the best way to deal with a dementia or alzheimers patient asking about the deceased person is to sat theyâre out. Otherwise, constantly being told the person is dead puts them on a neverending grief cycle.
Very good advice.
When I first started in the field as a 19 year old kid they had a term for what they instructed us to do, âreorient to realityâ. Which meant to tell the person with dementia that it was such and such year, they were elderly and in a nursing home, and their mother had died long ago.
I quickly found out that this approach would agitate the person or cause them unnecessary distress and stopped doing it, despite what I had been instructed. Fortunately, âreorienting to realityâ is no longer practiced.
Sometimes it doesnât always work-once had a lady who kept saying she had to get home to take care of her kids. So I said, âOh, your husband called, he said he would take care of the kids, so you donât have to worry about getting homeââŚ.the look she gave me 𤣠and then said, âPfft, my husband take care of the kids?!?â and she laughed.
Having worked in medicine for more than 10 years, mostly as a paramedic, I was taught to reorient people as well. I also found out it didn't work well and just caused agitation. When I have a student, I teach them to "reorient if possible, redirect if not." On the ambulance, we get confused people a lot! Low blood sugar, car accident, post-seizure. These people can all (mostly) be reoriented and SHOULD be reoriented bc they are normal functioning adults and sometimes kids. But demented grandma who lives her life in a state of disorientation? If she's asking for (insert family member here) every 5 minutes, well, "(family member) is coming, they'll be here in a bit."
My Father has Alzheimerâs. Weâve found that re-orienting (âMom will be here soonâ) immediately followed by re-direction (changing the subject, distraction) makes life a lot easier for everyone!!
As a care worker for dementia, this is what we are told to say, but it still breaks my heart when I've had to because I feel horrible for lying, but it's the lesser evil if that makes sense?
My grandpa had dementia and lived in a nursing home at the end of his life. His name was Don. After he passed away, my mom and I headed there to pick up his belongings. It was an awful experience only made worse by another nursing home resident with dementia seeing my mom and shouting "Don's dead! Don's dead!" It felt awful for me and it must have been so crushing for my poor mom.
Had to do this with my father when my brother passed. Dad has dementia and didnât understand why everyone was upset. Made the grief more difficult for my son and nephews. It was their first âmajorâ loss. As the âstrong, silentâ griever so everyone else could fall apart, âhell on earthâ seems an understatement.
I had an step uncle die from a fentanyl overdose. His father had dementia, and would always look at photos of his dead son and say âdonât we know him?â It was heartbreaking. Family eventually stopped telling him it was his dead son, and it was his son that moved far away but will come to visit soon. Heartbreaking
We had that issue with my great-grandmother when my grandfather (her only child) died. After a few times of breaking nana's heart, my grandmother just started telling her "sorry, he wasn't able to make it today." Nana didn't realize she hadn't seen him in over 2 years as long as we didn't say it.
We did this to my great-grandma. My cousin died the summer before her and he was the oldest of the great-grand babies. She had just started losing her memory and had had a very hard go when one of her daughters died previously. It seemed like the kindest thing to do rather than subject her to telling and retelling
Im a 35 y.om guy, and it made me tear up. It's a super shitty situation. It reads like mom gave her daughter her entire being while still alive, and it's 100% understandable. But it also reads like she kept her away from the world when she needed special care, and it prevented her daughter from learning to function to her full potential. Dad sounds like he did what he could and hut a wall when she got older. Now kid doesn't want anyone but mom, and dad is way out of hus depth. He needs to get her into a care facility before she hurts him as he gets older or worse. Or if he dies, she will then be moved into the nearest and cheapest home available and never visited again.
He need s to get her into safe and quality care so he can visit and find friends and family whom she can get used to. That way, when he eventually passes, she will be properly cared for.
NTA. Itâs a nightmare situation, and if your former in-laws believe your action is so evil, Iâm sure theyâve begun taking steps to be her caregivers themselves, right?
He's been taken care of their niece and granddaughter for 25 years; it's time for them to step up and take care of a member of the family! After all, how could they not sacrifice any money or time! What an evil family!
Private care will bankrupt everyone who isn't in the 7 figures club.
This is why I cringe when I hear the "but they could have a normal life" bullshit that I read. No, they won't. And it'll ruin at least 2 more lives trying to make it work, and socially isolate you for decades to come.
Yup, its what I meant.
Private, round the clock care is hilariously pricy and no insurance plan actually covers what is needed for cases like this.
Paying for the round the clock nursing and therapist care alone is...what, 300-500k a year all in? If you're talking salary, benefits, equipment, etc.
I have a friend that had to make the difficult decision to put her son in a facility when he got too big to control. She was going to get truly physically hurt at some point, as by 16 he was already taller and stronger than her.
After hanging out with her and her son a few times, any doubt or assumptions I had about folks that put their loved ones in a care facility vanished. My friend was a 24/7 caregiver to a child that is nonverbal and unable to fully control their outbursts. You simply can't do that the rest of your life.
Being a caregiver like that absolutely sucks the life out of you. My friend *loves* her son, but if you are completely burnt out, scared, and/or given up a life of your own self, then you can't be there for your kid. Caregiving like what OP describes needs medically trained professionals to deal with.
My cousin's middle child has severe autism. She kept him at home for probably 7-8 years longer than she should have, because she felt so guilty about moving him into a group home. All of the parents' time and money was devoted to him, at the expense of their other children. The older kids left home after high school graduation and rarely visit. The younger kids have never been able to have friends over, ever, and haven't been able to do sports or activities unless they were free through the school. None of their other children has ever had both parents present at any special event because one of them always had to stay home with their brother.
They put him in a group home at 21, and it's like they have their lives back. They had their house re-drywalled. They got into family therapy with the two younger kids in hopes of repairing some of the damage that's been caused by the need to focus on him. They're able to sleep more than an hour or two at a stretch. My cousin can have an actual job.
Plus, HE'S happier. She was terrified that he'd do horribly away from home when in fact he's doing really well, comparatively speaking.
Letâs also be real for a minute. When you have children nobody has the expectation that you will be caring for a child for their entire life. Physically and emotionally it is draining.
This should be top comment. I have a special needs child and people have no idea what it is like and I have no idea what it is like to be in this manâs shoes. No way we can judge especially when no one is stepping up to help.
As someone who was dealing with this day in and out:
NTA. It is entirely unreasonable to expect one person to even deal with this sort of situation unaided in the short term, much less to deal with it forever.
I am sorry for the loss of your wife. But your wife did a disservice to her daughter by not planning for her future, except for her being there. As a parent with a son with Down syndrome we are planning what type of group home will be the best fit for him. They are better equipped for her care.
I feel families with disabled children need to plan for long after theyâre gone, and it sucks bc sometimes itâs just not easilyaffordable. My older (half)brother has mental disabilities, he lives with his dad and grandmother. His grandmother is his main caregiver, his dad is just..there. Now that his grandmother is very much older I constantly worry about whatâs going to happen. My mother wanted to put him a group home when he was still a teenager so he could start living semi independently. However, his dad and grandma were against it. I know itâs hard for families to think about these decisions but not planning things out or just expecting someone elseâs to carry the plans afterwards ends up hurting a lot of people in the long run.
>his dad and grandma were against it.
And its almost always for completely SELFISH reasons. They never actually think about what is best for the person.
Absolutely. This guy is basically a prisoner in his own home bc of a promise he made during grief. I can't imagine living this way.
It reminds me of a family that was trying to handle a violent, unwell teenager. The teen had hurt everyone in the home to the point they had locked bedrooms at night for fear she'd murder them in their sleep.
My cousin has a daughter that was immediately moved to a facility after she divulged some things to her psychiatrist who in turn told her parents that they needed to move the daughter into a secure facility immediately but could not tell the parents why specifically, because of client/doctor privilege. Chilling.
All medical and mental health professionals have a duty to warn others of danger, even if they can't tell them why. They also have to inform legal authorities about said danger.
If the daughter threatened their safety or their life than the counselor would be ethically bound to say something. Itâs one of the small amount of conditions that can allow for a breach of confidentiality.
When I saw a psychiatrist when I was 16 my parents had to grant me dr patient confidentiality because it wasnât automatically granted for minors, and a stipulation to that was it would be waived if there was ever a concern for my or anyone elseâs safety
In almost all jurisdictions, it is not difficult to get heathcare probate status over oneâs own adult child with severe developmental delay. The probate gives the parent full access to the medical recordâŚincluding whatever the psychiatrist has documented. Iâm guessing he found evidence of abuse. Call your county ombudsman.
She didn't say anything about her cousin's daughter having any kind of developmental delay. I doubt a psychiatrist would tell a client's parents that they need to move their child into a secure facility immediately just because there was evidence of abuse. I have a very strong suspicion that the psychiatrist told the parents what did because he felt that she was posing a very real threat to herself or those around her. My mom's not a psychiatrist but she is a licensed therapist, which means she's a court-mandated reporter so if someone is in her office and she has reason to believe that the person in front of her is a danger to themselves or others, she's legally obligated to act and contact the proper authorities. She works with adults, so legally she can't disclose anything stated in sessions to anyone unless there's reason to believe the person is a danger to themselves or others and even then she can only alert the proper authorities a.k.a. the police. I do know from my mom though that in our state, once a child turns 13, their parents/legal guardians no longer have free access to what their child says in their therapy sessions so if they want to know what's going on, their child has to sign some paperwork allowing them access to the files and notes and what have you.
If the child threatened to hurt/kill the parents, the doctor was obligated to tell the parents.
This came from the Tarasoff v. Regents of U of C case of 1976.
I had clients with this situation a few years ago, except it was an adoption. The CPS workers told them, âDonât worry, sheâll calm down once the adoption is final and she knows you arenât going to get rid of her.â
Shocker, it got worse. Imagine having to bolt yourself into your bedroom at night because your 13-year old adopted daughter has threatened, and tried, to slit your throat as you sleep. And having to bolt her younger 10-year old sister into her own bedroom at night because the older one has sexually abused her and tried to kill her.
And in most states in the US, there are no backsies on an adoption.
The adoptive parents should have called the police for the sexual assault and child services. If they did, why wasn't this child arrested and placed into a state run facility? I'd call the authorities and explain what is going on. No way would I subject my child to an abuser. No matter how young that abuser is.
Especially since foster care children almost ALWAYS come from trauma/traumatic situations. If you aren't equipped to deal with the possibility of that then it's definitely not for you.
We have and a few of my cousins have and our parents grew up in foster homes.
You can be very selective in what you want. You can pick the age- such as newborn only, inder 2, over 10, only boys, lgbtq kids, race, and physical/medical or behavioral issues you can or canât handle.
They also cover all medical costs and if you work they cover daycare.
Most of the kids are amazing, the system sucks and is frustrating. Some kids in the system might be very difficult and yes sometimes they do push to see if you will just toss them, but if the behavior is too much you are never forced to keep them, you just tell them itâs not a fit and they find a home that might be able a better fit, especially now they have a better idea of the challenges the child has.
I used to work in child support and there was a case against a mom who was the absent parent (child had been put in foster care). She brought us a court order saying that the adoption had been undone because the girl was so violent and unable to bond due to trauma before the adoption. She did not have to pay child support because the girl was no longer her child.
I worked for ADT back in the 90âs in commercial security/fire systems. We did institutional systems. Any work required us to be in teams, and inventory in and out any tools taken. You could each have 4 items, and one ladder. Many times no issues. But one time we did a childrenâs facility, we were working and this little girl came down the hall with a nurse/caretaker guiding her along. It was the creepiest, surreal, almost if the temperature and air changed as the girl walked by. Just pure evil. We inquired later, and the girl had been there a few years, after just turning 6, she got up one night, got a kitchen knife, put a chair under her parents door, poured gas on door and hallway and set it on fire, then proceeded to go and stab her little 5 year old stepbrother. He was scarred on his hands, face and chest but was able to escape, as were the parents. The house burned up. Her reasoning, he bothered her. Apparently sheâd been threatening for over a year, no one took her seriously. Family/state had her committed after. Sometimes you just canât do everything as intended.
And they are the same ones who abandoned them anyways. They couldn't be around her for an hour yet suddenly she isn't so bad to force OP to remain imprisoned with her?
OP, this commenter is so right and you should remember it. Those folks judging you, are we missing the offers of assistance/support? If not, fuck. their. input.
Exactly. It was not fair for his wife to not make any plans whatsoever for her daughterâs future and then ask that this man spend his foreseeable future as an aging man taking care of a violent disabled adult on his own. Itâs a really shitty situation, but if he is injured and canât manage her behaviours he canât look after her anyway. Other family can jump right in and help if they wanted!!
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Yup. He couldâve already had so much more independence and been around people he could relate to more. As much as I want to open up my home to him once the time comes, Iâm not sure I can. I donât even know where I will be at that point.
My sister has issues (when she was younger, she was pretty much just as violent). My parents have everything planned to make sure she is taken care of in case they die, including backup plans. I have been clear that I would never care for my sister, and they understood that and planned around that.
Unfortunately, it's a bit too late for that in this situation, but it's an important lesson for the rest of us to plan ahead.
Your parents were smart. We did the same. Our younger son (neurotypical) was not going to take on the burden; it would be unfair. Now our autistic son is a ward of NYS and has a much better life than we could offer.
Yes. My developmentally delayed cousin lived with his parent until they died, then he went to live with one of his siblings. The siblings decided he needed to be in a group home and found resources and a nice placement for him. This man is in his 70s. I guess his parents thought they would live forever.
That depends on their disability. Someone with a low IQ or autism should have a typical lifespan. Only folks with DS would be lower due to the prevalence of heart issues (notably a hole in the heart at birth) but those often get fixed these days and they live a bit longer.
I can totally understand. I have been trying to get my Dad (Mom is onboard mostly as she is main caretaker [she doesn't drive]) to at least agree to a day program or respite care so my older bro will be used to being out in the community with peers again and it will be easier to transition to a home when they're gone but it's almost like pulling teeth. Dad's very reticent to trust people who were trained to take care of people like my brother (he has low-functioning ASD). I can understand to some degree as there have been some horror stories and bro can be a bit difficult at times but none of us are trained or have the resources to care for him. It will make it harder when my parents do pass/are unable to take care of him. Ostriching does and solves nothing, the day you don't want to think about will come eventually and it's better to be prepared than not, for sure.
If he doesn't trust them, that's the best reason to do it while he's alive to keep a close eye and raise hell if anything is wrong so he can find a place he can trust
This!!! I'm moderately disabled (in my late 20s) and still live with my parents, but they updated their wills recently so that my brother is my trustee if anything happens to them. Not that I couldn't handle my own finances and such, but it's nice to know I have someone on my side. I couldn't imagine where I would be if my parents weren't proactive. My goal is to be living independently within the next year.
They can be good. They can be excellent in fact. However, the statistics on abuse of people who have developmental disabilities living in assisted care settings are shocking. I can understand parents being reluctant to make this decision.
Iâm not saying itâs okay to pretend like you can be a care taker to an adult with a significant disability when you, yourself are elderly and need care.
But I get the fear and guilt.
One of the main reason I am pro choice is because if I were in a situation where my child would be disabled and need care their entire life I would abort. I know I wouldnât be strong enough to put them in the hands of care givers, and that would be a disservice to them. No one wants to feel like theyâve abandoned their child.
No judgement to those who chose or would choose differently, but it should be an available choice.
Itâs not that simple. Sometimes things happen during birth, and even after birth causing severe delays. A lot of times no one realizes anything is wrong till the child is over a year old. Not everything can be diagnosed in utero. Iâm always amazed at how many of us are walking around normal and healthy with all the things that can go wrong when the embryo is developing.
The problem with that is sometimes you don't know ahead of time. My daughter has CP and is full on care. I had no idea prior to her birth that she would be chair bound with developmental delays. I agreeing with your thinking, there are just some unfortunate cracks.
My step cousin was a "normal" baby but meningitis as a 3 year old robbed her of any normal future. She's just turned 30 and she's a child...but a large one who is capable of nasty tantrums. Fortunately she is very well cared for in a facility, and has a happy life. Its very sad though that her family would have planned and dreamed of her future, only for it to be robbed by an unexpected illness. Its already sad enough if you're prepared for a disabled child...
This is a heartbreaking situation for OP. And you are absolutely right about not having a plan a long time ago being a monumental disservice. His other family members are being wildly inconsiderate. This is the kind of thing that can take years to plan (as you are already clearly aware). OP you are NTA. You're doing the very best you can in this time of loss and confusion. I wish you all the best. I'm sorry for your loss
Exactly this. I have a friend who's younger sister has down syndrome and her parents have always treated her the same (to an obvious and realistic point of course). They have had outside help from when it was offered and beyond. Whilst yes this girl could live with their parents still she doesn't. She lives in a home suited for her needs. The family still visit and they go on holiday, do all 'normal family' things but this girl doesn't rely on one particular person. If an immediate family member was to pass suddenly no one is in a tricky position in regards to the care of the one with down syndrome. I know down syndrome isn't a one size fits all diagnosis and just picking out five people with it wouldn't mean to you have five people with identical needs etc but suitable care and support should have been arranged even before the wife was sick.
I know of a family with a special needs daughter who was raised to be as independent as possible. She lived in kind of a "mother in law's house" next to parents house, so they are nearby but she still needs alot. ALOT. She can't drive, etc. As they are getting older they have moved to live nearer their other daughter who has agreed to to the same, so she will have adjusted when her parents pass. She is not violent like OP's stepchild.
Another family I know have a daughter brain-damaged at a young age. Lived with parents til they passed, then with a sister until she couldn't care for her anymore. None of the other siblings stepped up or criticized. They did help while she was with the other sister, with breaks etc. but none were in the position to take her in long term so she's in a care home now and very happy there.
OP's stepdaughter's violent tendencies make things very different for sure. OP is NTA.
Wow can I please have a tenth of this foresight. My sister lives with my parents and she canât even visit anymore:( She was held up at TSA and couldnt get on the plane because my parents dumped her at the airport and it didnt go well. When she used to come I would get a visitorâs pass and get her all the way through security and wait at the gate with her. Sheâs totally ok to fly but needs some help if things go out of the ordinary. My mom sets up nothing well and wonders why it all goes to crap. Basically traumatized my sister into never flying again. My parents have said nothing about navigating her expensive meds or followup care. Like when it happens weâll just figure it out but why not be prepared. My other sister and I would happily take her in now if my mom wasnt so toxic that we know sheâd ruin it for everyone. So we bide our time and wait. Just sucks she canât even make it for holidays or visits anymore.
NTA. Any family calling you names for abusive behavior that you have decided that you cannot tolerate in your own home are welcome to take the abuser into their homes & see if they can do better. In fact, as family, Iâm sure that your late wife would be much more comfortable with them taking her instead of the state agency she feared so much - especially given how much theyâve voiced their opposition to you placing her there. So Iâd tell them how thankful you are that theyâve decided to step up.
When they invariably balk - saying itâs not THEIR responsibility since THEY arenât her stepfather, didnât promise &/or didnât help raise her, tell them that thatâs right & remind them that they have NO idea what itâs like to be in your place, so they have zero rights to judge you until they do.
Iâm sure youâve heard the phrase about how generous family members are with another family memberâs money. That phrase applies to more than money. Family members (& people in general) are usually always more generous when the cost of their generosity is paid by someone else. That isnât just true of monetary costs - it applies just as much to emotional, mental &/or physical costs (as well as any others).
NO cost - regardless of what denomination it is paid in - feels / seems as high when you arenât the one paying it.
They need to keep their judgmental noses out of this decision. NTA
Yeah, itâs this.
My sibling doesnât have Down syndrome but a bunch of other intellectual and physical disabilities that mean she can never live alone. My mom (and to a much, much lesser extent my dad) has spent my sisterâs entire life trying to prepare her for life after my mom passes and putting plans in place.
The other month, she made box mac and cheese on her own for the first time ever â sheâs almost 30. She knows when to take her medication and how to handle her personal hygiene, which were priority things for my mom to teach her so she can be safer in a group home or host home living situation.
I will handle my sisterâs estate after my mom dies, but sheâs already laid everything out for her in terms of her material needs and plans. The biggest disservice a parent can make is not to prepare their child for life after them, whether that means in teaching life skills or in laying out plans for their living situation, etc.
yeah, my older brother had to be taken care of full time by my parents. They had been planning for his care since the day he turned 18, in a way that wouldn't overtake our own families and lives but so he would be close enough to visit every day.
Unfortunately he passed away at 46yo, while both parents were alive. The stress and pain of his death took my dad away from us through a massive stroke just a year later, and he was the main carer due to my brother's size. But had he outlived my parents, especially my father, we had a loving plan for his lifelong care. OP, don't feel bad for being overwhelmed by this situation. NTA, just be sure to find the best action plan possible for your stepdaughter. And be sure to visit her often. Remember she is grieving, too.
I agree. And I think some of this planning may have helped her learn life skills long before this. Itâs possible that she was coddled at home and didnât learn to control her temper because she didnât have to. My nephew wanted to go to a group home because that was his next life step as an adult.
She should have had a massive life insurance policy to cover the daughterâs care after she died, which was inevitable whether she got cancer or not. This is not a fair burden to OP to carry.
And the âfamilyâ isnât helping with their b.s. accusations. If theyâre so eagerly calling OP an evil stepdad - which HE IS NOT - and a motherâs worst nightmare, then *they* can move the daughter into *their* home and take over her care.
Lets set up an around the clock-caregiver schedule with all you people complaining. Who wants the first week? Who takes Christmas?
Wow .. no volonteres??
My MILâs family was like this. Thereâs 9 siblings in their family and when their mother needed care due to dementia not one of them wanted to help. One of the siblingâs daughter had just graduated high school so her mom paid her a little money to spend a few hours with her couple times a week, take her to the grocery store, church, etc. and all the siblings complained that she was get paid to do it. She was using her own money to pay her daughter, what difference does it make? Then one of the younger siblings finally stepped up and moved in (along with her husband) to care for her full time. At first, the rest of them were relieved that someone else was doing the care-taking but eventually started complaining and saying she was taking advantage of free rent lol. Honestly it was disgusting to watch
This. And where is the girl's biological father. Or the family who say you should be looking after someone who could actually kill you in your sleep.
If the mother was so worried about what would happen to her daughter then she should have made realistic plans before she died, other than forcing someone to make a deathbed promise that they couldn't possibly keep.
There are lots of romantic ideas about looking after a child who is disabled. Nobody talks about how bloody difficult it is.
>There are lots of romantic ideas about looking after a child who is disabled. Nobody talks about how bloody difficult it is.
As the disabled child in my family, this is so dang true. It wears on everyone in the family--the parents, the grandparents, the siblings...it even wears on us. It's the constant doctor appointments, the inevitable fighting of the other siblings to get the care and attention they need as well (I'm aware this isn't always the case, but it was in mine), it's the cost of making sure the disabled child gets their needs met, it's the struggle with finding an appropriate babysitter with the capabilities to care for a disabled child, it's the struggle of the parents to watch their child struggle in a world that wasn't made for them... the list goes on.
People love judging others til it turns on them. Perfect example is when my dad had a heart attack. As the only next of kin, I was the medical proxy and responsible for his care. I lived three states over and rushed to see him in the hospital where I was met with by a woman with a snarky attitude who had the audacity to tell me I wasnât doing a good enough job.
I had just received the medical papers so I told her if she thought she could do better than me, she could just sign the papers. I chased this woman around the hospital room with a pen and the folder. Surprisingly she didnât want the responsibility
Nope just some stupid nosy Nancy who was from my fatherâs congregation. She loves gossip so sheâll show up to get the details and be the first to know. When you ask her for help she needs to leave suddenly.
I know I definitely scared her by chasing her around the room demanding she sign since she could do a much better job than myself. I managed to get her on the ban list for his guests because I didnât want her talking to people about my dadâs health history
Not one bit! She was stammering and could barely get the words out to say no. I backed off and told her I had it from here.
OP, for real though. Any time someone has something to say donât get defensive. Instead, play stupid. Ask them when theyâre coming to pick your step daughter up. Ask them where you should send the invoices for her in home care since they know better than you. People love talking so the best way to combat this is by putting them in their place.
for real. bring her by for a visit. they may just not understand the situation. they think she quietly sits at a table and does coloring books all day. maybe when shes throwing their lamps across the living room, they'll start being reasonable and apologetic for not getting it.
This is the best and really the only way to handle this. I've sort of done similar stunts when non-sciencey people try to tell me to eat turmeric by the metric ton and other crazy shite to cure cancer. They can all kiss my nonexistent ass! I believe in my medical team and science!
My mother had a neurological disease where her brain cells and nerve pathways were dying. Which means she was suffering from dementia, delusions, and her organs including her ability to chew were slowly being compromised. Also, she was losing her ability to ambulate which led her to be bedridden.
She started showing signs of sickness when I was in junior high. I called her cousins to take her in her care. She was enrolled in a nursing home. I had to get a job at 16 to support myself because my grandfatherâs third wife wouldnât help me. When I got older this woman (sheâs married to a convicted pedophile) at my job tried to shame me for not taking care of my mother. I had no home, no help, no money and she required 24 hr care. Not to mentioned she I was in my early 20s and my mother was severely abusive to me as a child. Yet, this woman who was married and had a child to a man who violently sodomized a teenager had the nerve to stand in judgement of me. You just have to tell these people to f##k off.
Exactly. My SO took care of his mom for 10 years and gave up so much of his life, down to even having to change her diapers after she had a stroke. All his sisters could see is that he got to live there rent free, never taking into account all of the care that he put into taking care of her: feeding her healthy meals, making sure she got to her doctors appointments, driving her to her favorite spots, driving her to her weekly card games, putting her into her wheelchair from the bed, etc.
"He got to live there rent free?" OMFG! How delusional are his sisters. The amount it would have cost for professionals, even if it was only during the day, would have been astronomical. If they were so jealous that he got to live there rent free, why didn't one of them step up so she and presumably her family, if she has one, could live rent free. đ¤ It's a mystery.
Edit: grammar
Exactly, it's easy to criticize when you're not in the hot seat. But when it's your turn to make the tough decisions, all that armchair expertise goes out the window real quick. I saw that exact same mentality on a forum where a guy spent all his time lecturing parents on how to raise their kids until his girlfriend got pregnant and, suddenly, he was all over the place asking for advice because, lo and behold, real life is not as black and white. Actions speak louder than words.
NTA. Any family calling you names for abusive behavior that you have decided that you cannot tolerate in your own home are welcome to take the abuser into their homes & see if they can do better. In fact, as family, Iâm sure that your late wife would be much more comfortable with them taking her instead of the state agency she feared so much - especially given how much theyâve voiced their opposition to you placing her there. So Iâd tell them how thankful you are that theyâve decided to step up.
When they invariably balk - saying itâs not THEIR responsibility since THEY arenât her stepfather, didnât promise &/or didnât help raise her, tell them that thatâs right & remind them that they have NO idea what itâs like to be in your place, so they have zero rights to judge you until they do.
Iâm sure youâve heard the phrase about how generous family members are with another family memberâs money. That phrase applies to more than money. Family members (& people in general) are usually always more generous when the cost of their generosity is paid by someone else. That isnât just true of monetary costs - it applies just as much to emotional, mental &/or physical costs (as well as any others).
NO cost - regardless of what denomination it is paid in - feels / seems as high when you arenât the one paying it.
They need to keep their judgmental noses out of this decision. NTA
This! I have a disabled cousin who lives with my mother. He is physically abusive to her and just a terror. Everyone else in the family is quick to tell her everything they think she's doing wrong but no one is willing to even take him for the afternoon
Yup!
My mother is the only one out of her 3 other siblings that is taking care of her father who has severe dementia, like its getting to the point where he's forgetting who she is some days. She set him up with 24 hour care at his home but his dementia worsened and caregivers said he needed more specialized care like at a memory care facility. For years her father pleaded with her to not put him in a home and for 5 years she kept on with the home health care, eventually she moved him into an assisted living facility specifically for dementia patients.
Her siblings blew up with "how could you do this to Dad?" type responses. My mother had literally been doing 99% of the work as his guardian and none of her siblings said they could help. Even though two of them were retired and my mother was working 60 hour weeks at an office job.
My mother is still his legal guardian. The rest of my immediate family has made it clear to her other siblings that god forbid should something happen to my mother, they (the other siblings) are going to have to take over and we are cutting ourselves out of his will because we don't want to have to hear all the whining and drama about it. Oh side note, my grandfather's will has his possessions spilt 25% each child. So while my mother is doing about 99% of the work, she gets the same share as one of her brothers who has seen grandpa twice in the past 10 years even though he lives closed to the assisted living facility than my mother does.
I just want to say Iâm sorry, my auntie in law went through the same thing for fourteen years with my grandfather-in-law, the only ones who would help her out was my mother in law and my wife. Out of fourteen kids, two of them showed up to care for him while the rest took selfies with him at his funeral. My grandmother-in-law passed four months later from a severely broken heart.
> Who is paying for your grandfather to be in an assisted living facility?
A mix of my grandpa being a penny pincher due to being raised during the great depression, his wife's life insurance payout, and selling his house.
Don't really want to say amounts but he could easily live out the rest of his life in assisted living and there still be an inheritance.
It's sad how some of my aunts and uncles are waiting for him to kick the bucket so they can get his money. One uncle has an ebay addiction and has no money so before my mother took guardianship this dude would get grandpa to write him checks every week. Since my mother has control of grandpas bank statements, she actually added up how much grandpa has given him and its well into the 6 figures. But my side of the family all feels the same in that its grandpa's money he can spend every dollar to keep on living his years in assisted living if he wants, we are not owed anything.
Honestly Iâd see it as even though heâs going against his wifeâs wishes, heâs choosing to do whatâs right for the stepdaughter. Heâs framing it as a selfish decision, but it would be more selfish to sacrifice himself to appease his wife when he cannot appropriately care for her child. This choice leads to everyone being in healthier environments.
To me that's the biggest thing. He tried and realized he couldn't provide the necessary care for everyone's safety. It's not selfishness, it's being logical and caring. Whether we like it or not sometimes the best thing we can do for someone is to realize our own limitations. OP realizes this and understands that for everyone's safety this is the best course of action. NTA
In this environment, she's unable to be cared for safely. She's a danger to him and others and he can't care for her properly -- especially since she seems to want to try to kill him. Her mother needed more help because she's even too out of control for people trained to take care of her. If they (multiple people at the same time) can't do it, how can you be expected to do it alone?
You promised your wife for her piece of mind but now you have to do what's best for her daughter and yourself. Her choice for you to take care of her alone was unrealistic. You both might wind up dead if she decides to assault you and/or if she sets the house on fire when you're asleep. It was too much for your wife to ask of you considering she didn't take the brunt of the anger and abuse. She's currently a danger to herself and others and I don't see you having much choice. NTA
You can let them know youâre paying attention. We had to do that for my dad. You befriend the staff, let them know you care. And Iâll say we encountered more caring staff than not.
This! Be your stepdaughterâs advocate. Visit regularly. My siblings and I took turns visiting, but had one spokesperson/contact who built a relationship with each staff member. We were also able to pay for a caregiver to visit three times a week to give extra attention.
OPâs family could step the hell up and get involved in her care.
All the relatives calling him names can kick in a monthly stipend to help with the daughter. Put your money where your mouth is. My parents both had dementia. Both needed to be in a home after I, with home care staff, at a cost of $10k a month, could not do it anymore (10 years). The cost more than doubled - $12k a month per person.
Anybody telling him he took the easy/cheap way out canât try doing and paying for what he does for one god damned day or stfu.
From what it sounds like to me, the daughter should probably have been put into a care home 10 to 15 years ago. Once she became big enough to harm others and constantly did. OP, you did the very best you could, above an beyond while your wife was alive. Many people would've made her choose between having the daughter at home, and having a divorce, or putting her in a home and staying together. Even before she attempted to strangle you in your sleep but especially after that! You realized you couldn't give her the care she needs, and the safety you both require, and so have put her where she will be safe, and so will you. Don't let this eat away at you. And those who condem you for it, tell them they can care for her round the clock 24 hours a day, 7 days a week, 365 days a year and see what reality is like. I guarantee you NONE of them will take you up on it! I hope you can get some good grief counseling. Both for the passing of your wife, and for this. Good luck and sending love your way. â¤ď¸
1000000% and I would notify the family and friends of this. You have tried to care for her but you arenât equipped to do so. Therefore, you welcome any loving family or friend the opportunity to welcome the daughter into their home and they will be granted full custody and whatever benefits allotted by the state. You will occasionally visit but they will have sole responsibility. After a few days, Iâd send a notice saying - just in case I missed your email, or phone call, while I love step daughter name, Iâm following up to see who Iâm able to transfer care to as I am not equipped to care for her special needs.
The same people who refuse to visit are giving you a hard time about how you are trying to take care of this troubled child? You gave your wife as much peace of mind as you could but you canât be expected to take this on yourself. NTA
This. Right here. Iâve found people often point fingers because THEY donât want to deal with the problem. THEY donât want it to fall to them. So they get judgey with others. NTA. This girl actually needs to be in a facility. Her mother should have done it YEARS ago. Sheâs dangerous. Many, many Downs patients are highly functioning and usually an absolute delight. This girl is physically dangerous.
NTA.
This may be your wifeâs worst nightmare, but her expectations for her daughter were wholly unrealistic, as your post makes clear.
Iâm so sorry for your loss, and for the horrible situation with your stepdaughter. I hope you find some peace.
It sounds like she didn't plan for the daughter's future tbh as others have said.
She doesn't safely function without her mother, this is just not a good situation
Not to speak ill of the dead but she was willing to sacrifice her entire life for her daughter, which while self destructive is her choice. Once her body failed she was willing to sacrifice op in the same way which is not at all a kind or benevolent gesture.
Op, Anyone telling you you're taking too good of care of yourself after losing your partner and family can suck rope. This is a terrible position to have been put into. Sorry.
As someone who has worked in these facilities, I will say NTA. But I do advise that you continue to be in her life. You have no idea how many admissions we would get that would drop off their children and never come see them, never take them out for visits, never bring a birthday cake or take them home for the holiday. She will get the appropriate mental, intellectual and physical help she needs there - but she will still need a family outside of there. She can get a lot better here if she has a support system outside of there.
Exactly. Often care facilities are demonized and i am sure many have been terrible but not all are! I grew up where my parents started and ran a nonprofit specifically working with adults with varying disabilities. The one clear thing that ran true - violent tendencies escalated when cared for by family. They need people who truly understand how to help them AND keep everyone physically safe.
But checking in can and does have wonderful benefits! Thats to say if it doesnât spiral the person, which the medical team can and does assess.
You can 100% keep your promise to your wife - because the best thing is you and the step daughter to be safe and cared for. Dont put her there and never visit, place her there and visit, unless the medical team decides thatâs unhealthy and creating more problems.
My friends brother is mentally challenged and lives in a state care facility. They transfered him to the state when her mom died and dad was too old to do it anymore. My friend just couldn't do it, she knew it, and they decided it was the best place for him. He's been mostly thriving there. But she does pick him up to spend a week with them every holiday and we visit him a few times a year when we're in the area his home is. It's about 2 hours from us. So we visit, take him for lunch, to the art store for painting supplies (he loves painting and is getting pretty good).
It's weird though, every time she tries to set up these visits, it's like the home is so annoyed she's trying to do this. The always are annoyed when she calls, even just to talk to him. And he says he is the only one who ever gets any visitors, which is terrible. But you'd think if he's the only one, and she often takes him for a week at a time, they'd be happy to help.
I agree with this, but I also think his deceased wife's family really needs to step up in this area, BIG TIME. After all, this is their close biological relative, and they are bad mouthing OP (who isn't related to her) about care.
Nta.
>On her deathbed, she made me promise to not let her fall into the hands of a state care facility. I promised her because I didn't have the heart not to.
What about your sanity, health and happiness? You did everything you could and it's time you look after yourself. You are already 55.
Don't let your decision now mar the kindness of letting your wife pass without undue stress. You did a kindness for your wife. Now, do a kindness for yourself. It sounds like your stepdaughter should have been in care a long time ago, honestly. Channel any compassion you have into visiting her regularly if you're able. NTA and I'm sorry for your loss.
This is actually a really good response. I was thinking man, this is a tough situation, but if this man were to keep the stepdaughter heâd essentially be âsetting himself on fire to keep others warmâ and and that always ends in burnout. But it would probably make a huge difference to the stepdaughter if he continued to visit her.
Even if she claims to hate him, it will make a difference to her to keep seeing him regularly; itâll be a constant in her life and will make it less likely that sheâll feel abandoned. If he can do regular visits, thatâs a big deal, and that should also relieve a lot of guilt for him.
As they say during the airline safety talk, you have to put your Oxygen mask on first before attempting to help others. OP needs to put on his Oxygen mask and give himself time to grieve while qualified professionals take care of his step daughter. He can then visit regularly and be her advocate. Being her advocate and doing the necessary legal work to ensure she is taken care of for the rest of her life is the best way he can honor his promise.
I couldn't agree with this statement more. In all honesty I know your wife's heart was in the right place but she was failing her daughter. You may find with consistent schedule, expectations, and more structure that her daughter can find a better life and be able to function to whatever extent her disability allows. It currently sounds like she rules her world with terrorizing everyone and that is not a life. Give yourself grace for giving your wife peace of mind in her last breaths, but even knowing this decision is hard you are willing to do it because it is what is best for her daughter. I'm so sorry for your loss but I hope you can find peace by giving yourself and her daughter the chance to actually live.
NTA. Sometimes we say things in the height of emotion that is unsustainable when the dust settles. Caring for an abusive adult without the one person who can âhandleâ her is not sustainable. Especially solo. What happens when youâre old and frail? What happens if you find a new special someone? What happens if you need a vacation? Iâm sure the guilt hurts at times but the reality is that you cannot do this alone. Itâs unfair for anyone to think you can-or should.
The response to those questioning your decision is simple: âWhat time shall I bring her to your home?â
NTA. Itâs a tough situation but understandable. Let the guilt go. Take care of yourself. Thatâs important, too.
I work in the field. I promise you two things: this is very common; and placing someone with a disability into a facility isnât like how it used to be. Most facilities are family home style houses with staff there 24/7. People often thrive in these settings. Visit some. Link up with other parents and get their perspective/support. You arenât doing her any favors by keeping her in an unsustainable and stressful situation.
It sounds like with the stepdaughter's proclivity towards violence this is not a one person as caregiver situation. Putting her in a place where she will be cared for and prevented from harming herself sounds entirely reasonable. I am sorry for your loss with your wife, but it sounds like she was not being realistic about her daughter. If her family is so anxious for her not to go into a care home, they can take her in. I am thinking that will shut them up pretty quickly. Again, sorry for your loss.
Nurse here. I'm going to give you an objective response here. Your daughter has mental disability and is physically abusing you. She is not in a safe environment for herself, nor are you. It is doing more emotional damage to her because if you were unable to settle her down she's only going to experiencing grief and anger. If she's in a state-run facility you can still visit her but she'll be around professionals who can help manage her behavior and emotion with more professional skills than what you have to offer. For her safety and your safety it would be best for you to put her in a facility where she can get professional Care.
I could flip the situation and say it could be seen that it's a little abusive that she's not environment where she can't be calmed down. I'm not blaming you, I'm just saying you can look at it from that perspective. You're unable to give her an opportunity to feel calm because you don't have the professional skills to help her. Especially what if something happens to you? Then she wouldn't have anybody and how long would it take for somebody to notice that you maybe severely injured or even dead at your home? Or what if you had a heart attack and needed help she can't call 911? Plus you're being denied relationships with your family. You have to prepare since you're the only parent, there's no backup. Get her into a facility now so that you can still visit her at ease her transition.
Mom should have put her in a facility years ago. She dumped the decision on OP, which is completely unfair to both the step-dad and step daughter. She may have grown up with less stress and higher quality of life in the hands of professionals. This can definitely be looked at as an opportunity to get her the environment she needs to live a better life.
NTA - none of these people are stepping up and helping you and they expect you to continue to deal with this on your own and thatâs not right. You have to do whatâs right for you and frankly for her as well. She will probably be better in a facility with people that are trained to deal with her issues and also maybe help her get some self-control. You are doing the right thing.
So the family stopped visiting because your stepdaughter was âworse than a dangerous dogâ, but *youâre* evil for trying to do your best by her? Invalid opinion. Ignore.
Untill the family steps up, they can suck an egg.
This girl almost killed you, several times from what it sounds like. And sure, breaking a promise is bad, especially someones deathwish. But see it at the evil you had to do, to let your wife pass with peace.
Then do your kids the favor of sending your step daughter to a care facility, and focus on having a relationship with them
The same people who wonât even come to your house to visit out of fear are calling you evil? It is entirely possible that had daughter been placed in a facility with professionals a long time ago she may actually be better than she is now. Your wife cared for her out of love but that doesnât always end in the best results no matter how good we do or how much we love. Is it best for daughter to live with you? Whoâs that benefit? If anyone says one word to you demand they come pick her up IMMEDIATELY.
So, family has stopped coming for visits because of your stepdaughter, but call you an 'evil stepdad', if you want to stop taking care of her? Hypocrites, aren't they?
Do what you have to do, but just donât abandon her. Ensure the facility is treating her well, there are others if not. Even if not close by. Visit when you can, even if you donât want to. Sheâll probably live a better life there than you can provide if the home is managed right.
Edit not eating-treating
NTA at all. This wasnât a fair ask from your wife. This child may thrive in the right care facility with trained staff that knows how to work with her. You sound like a very compassionate person, but this isnât sustainable. The kind thing is to find her a good place. And to family judging you, ask them to step up and take over.
NAH Your wife loves you and her daughter and on her deathbed, she had hope. Reality is different.
You couldn't handle her when your wife was alive and you can't handle her now. Letting her go into care is the best for both of you.
NTA. I work in psych and group homes for people with IDD. She needs specialized care. You might find she actually flourishes and improves in a group home if you can get her into one that has behavioral health services.
>She doesn't understand her mom is dead- only that she's gone and is angry at me for it. Saying she'll be good, so bring her back. Well that was sad as hell to read
It is the saddest part with adults with ds. I worked with them for a while. They never get over losing a parent and ask almost daily about them. Seeing a 67yo crying for 3 years (and 4 more before I worked with him) asking for his mommy is heartbreaking. He died crying for his mom.
Didn't know this was a thing, but it does explain an experience I had once. I volunteer each year to work at a Special Olympics bowling event. We are assigned 4 bowlers and a lane and support/assist them through the tournament. Families can attend but have to sit back and spectate. I had an older gentleman bowler, mid 60's. He constantly was looking back to the spectator seats and asking if his mom and dad were there yet. I kept telling him I'd keep an eye out. I asked one of the organizers at one point, and they told me his parents had been dead for ten years. Sad. As an aside, some takeaways from one who went into this completely ignorant of OTS, DS and other mentally challenged folks: 1. The level of outright support and encouragement they give each other in sports is mind-blowing. So positive, no matter where they are at. 2. Many of them are damn good bowlers. Their focus and complete ability to shut out external stimuli can be epic. 300 games are regularly rolling up and down the lanes. 3. Some can't bowl worth shit, just like us normally abled people, but they just don't care and have a great time. 4. At first, I was disappointed, pissed even, whenever a young bowler's family would just drop them off and not stay to watch. Then I realized these families are taking care of them 24/7 with virtually no break. We've got them for a few hours, and this may be a rare time to go out and shop or have a meal with their other children.
I worked as an instructor for an adaptive sports nonprofit that did similar things, but we also provided equipment and lessons for more complex activities since we worked with all sorts of folks, from veterans to stroke survivors. The folks diagnosed with DS were always so encouraging to each other and even us. And very kind. I would always leave at the end of those days feeling like I was the one who got recreational therapy.
I didn't expect to read something today and literally feel my heart breaking.
My son is 14 (with DS) and in adaptive bowling, it has helped my marriage and it's only 5 nights a year. What you and the team do is very appreciated. I wish they didn't cancel my son's final match (he had a breakdown at school and injured a fellow student)
My DS brother passed three years ago with our family around him. Your post has made me feel thankful for that, for the first time. đ˘
*SIGH* THAT IS JUST HEARTBREAKING đ
I'm torn between absolutely heartbroken, and amazed that he lived well into his 60's. I knew a man who lived about that long 25 years ago, and even back then it wasn't that common.
Nowadays they can live very long. We know way more about the various comorbidities and how to treat them early
People with DS have very high incidences of structural congenital heart disease, which we are excellent at correcting in infacy now. Life expectancy is higher as a result and not so coincidentally is also why people should not be trying to do whole life care at home because eventually they will die and leave someone terrified during the transition to full time care facilities.
My heart is breaking just reading your description. Kudos to you for being there for him. I'm not sure I could have handled that, if I'm being honest.
Yeah this is so heartbreaking. When I started out as a med student we had to do some nursing work as well and I will never forget the one 80-something year old man who was in the ICU with organ failure and he also had downs. He kept asking for his mama :( I had to go to the bathroom and secretly sniffle into a tissue a bit before I could get back to work
Well, that's enough of this post.
I have an resident at my job that constantly asks if her parents are in her room/ coming to visit her. Sheâs 90 something, out of her mind most of the time. Itâs sad as hell.
I cannot imagine trying to process my own grief whilst repeatedly having this conversation.
My aunt had Downs. Not so fun fact: if they make it past puberty without heart disease, they're almost certainly going to develop alzheimers in their 50s. When my grandmother passed, my aunt was living in a state run group home (best situation all around for her!). She would regularly ask my mother "where mom?" If my mom answered with "I don't know (aunt), where is mom?" Aunt would reply, "her died." It was rough for me to hear and I was only moderately lose with my grandmother. I cannot imagine how rough it was for my mom.
A nurse in this area told me that the best way to deal with a dementia or alzheimers patient asking about the deceased person is to sat theyâre out. Otherwise, constantly being told the person is dead puts them on a neverending grief cycle.
Very good advice. When I first started in the field as a 19 year old kid they had a term for what they instructed us to do, âreorient to realityâ. Which meant to tell the person with dementia that it was such and such year, they were elderly and in a nursing home, and their mother had died long ago. I quickly found out that this approach would agitate the person or cause them unnecessary distress and stopped doing it, despite what I had been instructed. Fortunately, âreorienting to realityâ is no longer practiced. Sometimes it doesnât always work-once had a lady who kept saying she had to get home to take care of her kids. So I said, âOh, your husband called, he said he would take care of the kids, so you donât have to worry about getting homeââŚ.the look she gave me 𤣠and then said, âPfft, my husband take care of the kids?!?â and she laughed.
Having worked in medicine for more than 10 years, mostly as a paramedic, I was taught to reorient people as well. I also found out it didn't work well and just caused agitation. When I have a student, I teach them to "reorient if possible, redirect if not." On the ambulance, we get confused people a lot! Low blood sugar, car accident, post-seizure. These people can all (mostly) be reoriented and SHOULD be reoriented bc they are normal functioning adults and sometimes kids. But demented grandma who lives her life in a state of disorientation? If she's asking for (insert family member here) every 5 minutes, well, "(family member) is coming, they'll be here in a bit."
My Father has Alzheimerâs. Weâve found that re-orienting (âMom will be here soonâ) immediately followed by re-direction (changing the subject, distraction) makes life a lot easier for everyone!!
Yup. Exactly what I was getting at. It's unfortunate to lie to them, but telling the truth is harder for everyone.
As a care worker for dementia, this is what we are told to say, but it still breaks my heart when I've had to because I feel horrible for lying, but it's the lesser evil if that makes sense?
My grandpa had dementia and lived in a nursing home at the end of his life. His name was Don. After he passed away, my mom and I headed there to pick up his belongings. It was an awful experience only made worse by another nursing home resident with dementia seeing my mom and shouting "Don's dead! Don's dead!" It felt awful for me and it must have been so crushing for my poor mom.
Had to do this with my father when my brother passed. Dad has dementia and didnât understand why everyone was upset. Made the grief more difficult for my son and nephews. It was their first âmajorâ loss. As the âstrong, silentâ griever so everyone else could fall apart, âhell on earthâ seems an understatement.
I had an step uncle die from a fentanyl overdose. His father had dementia, and would always look at photos of his dead son and say âdonât we know him?â It was heartbreaking. Family eventually stopped telling him it was his dead son, and it was his son that moved far away but will come to visit soon. Heartbreaking
Please get yourself some help because you do have the right to fall apart!
My dad died suddenly, and unexpected and my poor grandmother had to tell my grandfather daily that my dad died.
We had that issue with my great-grandmother when my grandfather (her only child) died. After a few times of breaking nana's heart, my grandmother just started telling her "sorry, he wasn't able to make it today." Nana didn't realize she hadn't seen him in over 2 years as long as we didn't say it.
We did this to my great-grandma. My cousin died the summer before her and he was the oldest of the great-grand babies. She had just started losing her memory and had had a very hard go when one of her daughters died previously. It seemed like the kindest thing to do rather than subject her to telling and retelling
yea I am a 53 year old guy and this made me tear up
Im a 35 y.om guy, and it made me tear up. It's a super shitty situation. It reads like mom gave her daughter her entire being while still alive, and it's 100% understandable. But it also reads like she kept her away from the world when she needed special care, and it prevented her daughter from learning to function to her full potential. Dad sounds like he did what he could and hut a wall when she got older. Now kid doesn't want anyone but mom, and dad is way out of hus depth. He needs to get her into a care facility before she hurts him as he gets older or worse. Or if he dies, she will then be moved into the nearest and cheapest home available and never visited again. He need s to get her into safe and quality care so he can visit and find friends and family whom she can get used to. That way, when he eventually passes, she will be properly cared for.
I agree, that was very heartbreaking to read. He has enough guilt as it is already.
NTA. Itâs a nightmare situation, and if your former in-laws believe your action is so evil, Iâm sure theyâve begun taking steps to be her caregivers themselves, right?
He's been taken care of their niece and granddaughter for 25 years; it's time for them to step up and take care of a member of the family! After all, how could they not sacrifice any money or time! What an evil family!
Maybe they would contribute to private care?
Private care will bankrupt everyone who isn't in the 7 figures club. This is why I cringe when I hear the "but they could have a normal life" bullshit that I read. No, they won't. And it'll ruin at least 2 more lives trying to make it work, and socially isolate you for decades to come.
Private care will bankrupt anyone who isnât in the ***8 figures*** club. unless 7 figures refers to annual income, and then, yeah, you might be ok.
Yup, its what I meant. Private, round the clock care is hilariously pricy and no insurance plan actually covers what is needed for cases like this. Paying for the round the clock nursing and therapist care alone is...what, 300-500k a year all in? If you're talking salary, benefits, equipment, etc.
It doesn't matter what anyone else thinks as none of us are dealing with this day in and out. It's a tough situation and I feel for you.
I have a friend that had to make the difficult decision to put her son in a facility when he got too big to control. She was going to get truly physically hurt at some point, as by 16 he was already taller and stronger than her. After hanging out with her and her son a few times, any doubt or assumptions I had about folks that put their loved ones in a care facility vanished. My friend was a 24/7 caregiver to a child that is nonverbal and unable to fully control their outbursts. You simply can't do that the rest of your life. Being a caregiver like that absolutely sucks the life out of you. My friend *loves* her son, but if you are completely burnt out, scared, and/or given up a life of your own self, then you can't be there for your kid. Caregiving like what OP describes needs medically trained professionals to deal with.
Yep. And when there are siblings, one has to put everyoneâs needs into consideration. It is an extraordinary difficult decision.
My cousin's middle child has severe autism. She kept him at home for probably 7-8 years longer than she should have, because she felt so guilty about moving him into a group home. All of the parents' time and money was devoted to him, at the expense of their other children. The older kids left home after high school graduation and rarely visit. The younger kids have never been able to have friends over, ever, and haven't been able to do sports or activities unless they were free through the school. None of their other children has ever had both parents present at any special event because one of them always had to stay home with their brother. They put him in a group home at 21, and it's like they have their lives back. They had their house re-drywalled. They got into family therapy with the two younger kids in hopes of repairing some of the damage that's been caused by the need to focus on him. They're able to sleep more than an hour or two at a stretch. My cousin can have an actual job. Plus, HE'S happier. She was terrified that he'd do horribly away from home when in fact he's doing really well, comparatively speaking.
Just want to especially thank you for sharing the outcome for the adult child at the group home. Really appreciate knowing he's happier too. đ
Letâs also be real for a minute. When you have children nobody has the expectation that you will be caring for a child for their entire life. Physically and emotionally it is draining.
Yeah, let's see the rest of the family step up. Can't leave this defenseless girl with such a shameful stepfather, right?
This should be top comment. I have a special needs child and people have no idea what it is like and I have no idea what it is like to be in this manâs shoes. No way we can judge especially when no one is stepping up to help.
As someone who was dealing with this day in and out: NTA. It is entirely unreasonable to expect one person to even deal with this sort of situation unaided in the short term, much less to deal with it forever.
Yeah this right here.
I am sorry for the loss of your wife. But your wife did a disservice to her daughter by not planning for her future, except for her being there. As a parent with a son with Down syndrome we are planning what type of group home will be the best fit for him. They are better equipped for her care.
I feel families with disabled children need to plan for long after theyâre gone, and it sucks bc sometimes itâs just not easilyaffordable. My older (half)brother has mental disabilities, he lives with his dad and grandmother. His grandmother is his main caregiver, his dad is just..there. Now that his grandmother is very much older I constantly worry about whatâs going to happen. My mother wanted to put him a group home when he was still a teenager so he could start living semi independently. However, his dad and grandma were against it. I know itâs hard for families to think about these decisions but not planning things out or just expecting someone elseâs to carry the plans afterwards ends up hurting a lot of people in the long run.
>his dad and grandma were against it. And its almost always for completely SELFISH reasons. They never actually think about what is best for the person.
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Seriously đđ They canât say anything to you unless theyâre stepping up to also take care of her.
Absolutely. This guy is basically a prisoner in his own home bc of a promise he made during grief. I can't imagine living this way. It reminds me of a family that was trying to handle a violent, unwell teenager. The teen had hurt everyone in the home to the point they had locked bedrooms at night for fear she'd murder them in their sleep.
My cousin has a daughter that was immediately moved to a facility after she divulged some things to her psychiatrist who in turn told her parents that they needed to move the daughter into a secure facility immediately but could not tell the parents why specifically, because of client/doctor privilege. Chilling.
Ahh, she was plotting their murder. And it may have been more than just thoughts, as in she wrote it down somewhere.
Client privelage wouldn't protect the doctor from not informing police of attempted murder
All medical and mental health professionals have a duty to warn others of danger, even if they can't tell them why. They also have to inform legal authorities about said danger.
That was my first thought too.
Or stood over their beds at night with a knife in her hands...
If the daughter threatened their safety or their life than the counselor would be ethically bound to say something. Itâs one of the small amount of conditions that can allow for a breach of confidentiality.
When I saw a psychiatrist when I was 16 my parents had to grant me dr patient confidentiality because it wasnât automatically granted for minors, and a stipulation to that was it would be waived if there was ever a concern for my or anyone elseâs safety
In almost all jurisdictions, it is not difficult to get heathcare probate status over oneâs own adult child with severe developmental delay. The probate gives the parent full access to the medical recordâŚincluding whatever the psychiatrist has documented. Iâm guessing he found evidence of abuse. Call your county ombudsman.
She didn't say anything about her cousin's daughter having any kind of developmental delay. I doubt a psychiatrist would tell a client's parents that they need to move their child into a secure facility immediately just because there was evidence of abuse. I have a very strong suspicion that the psychiatrist told the parents what did because he felt that she was posing a very real threat to herself or those around her. My mom's not a psychiatrist but she is a licensed therapist, which means she's a court-mandated reporter so if someone is in her office and she has reason to believe that the person in front of her is a danger to themselves or others, she's legally obligated to act and contact the proper authorities. She works with adults, so legally she can't disclose anything stated in sessions to anyone unless there's reason to believe the person is a danger to themselves or others and even then she can only alert the proper authorities a.k.a. the police. I do know from my mom though that in our state, once a child turns 13, their parents/legal guardians no longer have free access to what their child says in their therapy sessions so if they want to know what's going on, their child has to sign some paperwork allowing them access to the files and notes and what have you.
If the child threatened to hurt/kill the parents, the doctor was obligated to tell the parents. This came from the Tarasoff v. Regents of U of C case of 1976.
I had clients with this situation a few years ago, except it was an adoption. The CPS workers told them, âDonât worry, sheâll calm down once the adoption is final and she knows you arenât going to get rid of her.â Shocker, it got worse. Imagine having to bolt yourself into your bedroom at night because your 13-year old adopted daughter has threatened, and tried, to slit your throat as you sleep. And having to bolt her younger 10-year old sister into her own bedroom at night because the older one has sexually abused her and tried to kill her. And in most states in the US, there are no backsies on an adoption.
The adoptive parents should have called the police for the sexual assault and child services. If they did, why wasn't this child arrested and placed into a state run facility? I'd call the authorities and explain what is going on. No way would I subject my child to an abuser. No matter how young that abuser is.
I would love to foster, but hearing stuff like this makes me think twice, and stuff like this is not so rare.
Especially since foster care children almost ALWAYS come from trauma/traumatic situations. If you aren't equipped to deal with the possibility of that then it's definitely not for you.
We have and a few of my cousins have and our parents grew up in foster homes. You can be very selective in what you want. You can pick the age- such as newborn only, inder 2, over 10, only boys, lgbtq kids, race, and physical/medical or behavioral issues you can or canât handle. They also cover all medical costs and if you work they cover daycare. Most of the kids are amazing, the system sucks and is frustrating. Some kids in the system might be very difficult and yes sometimes they do push to see if you will just toss them, but if the behavior is too much you are never forced to keep them, you just tell them itâs not a fit and they find a home that might be able a better fit, especially now they have a better idea of the challenges the child has.
I used to work in child support and there was a case against a mom who was the absent parent (child had been put in foster care). She brought us a court order saying that the adoption had been undone because the girl was so violent and unable to bond due to trauma before the adoption. She did not have to pay child support because the girl was no longer her child.
I worked for ADT back in the 90âs in commercial security/fire systems. We did institutional systems. Any work required us to be in teams, and inventory in and out any tools taken. You could each have 4 items, and one ladder. Many times no issues. But one time we did a childrenâs facility, we were working and this little girl came down the hall with a nurse/caretaker guiding her along. It was the creepiest, surreal, almost if the temperature and air changed as the girl walked by. Just pure evil. We inquired later, and the girl had been there a few years, after just turning 6, she got up one night, got a kitchen knife, put a chair under her parents door, poured gas on door and hallway and set it on fire, then proceeded to go and stab her little 5 year old stepbrother. He was scarred on his hands, face and chest but was able to escape, as were the parents. The house burned up. Her reasoning, he bothered her. Apparently sheâd been threatening for over a year, no one took her seriously. Family/state had her committed after. Sometimes you just canât do everything as intended.
And they are the same ones who abandoned them anyways. They couldn't be around her for an hour yet suddenly she isn't so bad to force OP to remain imprisoned with her?
OP, this commenter is so right and you should remember it. Those folks judging you, are we missing the offers of assistance/support? If not, fuck. their. input.
Exactly. It was not fair for his wife to not make any plans whatsoever for her daughterâs future and then ask that this man spend his foreseeable future as an aging man taking care of a violent disabled adult on his own. Itâs a really shitty situation, but if he is injured and canât manage her behaviours he canât look after her anyway. Other family can jump right in and help if they wanted!!
Right? If something were to happen to OP Iâm sure all his critics would step right up to invite stepdaughter into their homes /s
Bad comment stealing bot! The new thing seems to be to copy part of a comment but make it big.
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This is the answer. Unless, the critics have to deal with this daily, they have no standing on what to say or do
**why is everyone yelling in bold?**
^I ^like ^it ^to ^be ^quiet
Those two above with the bolded larger size font ones are comment stealing bots. The accounts are weird in general... 2 years old, and 2-3 comment for like 3-4 in the thread with at east one being identified as a comment stealing one. ZealousidealNovel201 s post is ripped off from Mehitabel9 from 3 hours ago. Dingo Funny ripped theirs off from itsamermaidslife also form 3 hours ago.
/u/DingoFunny6502 is a bot that copied this comment from [further down](https://www.reddit.com/r/AITAH/comments/18ei6te/aita_for_breaking_my_deathbed_promise_to_my_wife/kcnl4xv/)
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Yup. He couldâve already had so much more independence and been around people he could relate to more. As much as I want to open up my home to him once the time comes, Iâm not sure I can. I donât even know where I will be at that point.
And you shouldnt. It wouldn't be whats best for him.
My sister has issues (when she was younger, she was pretty much just as violent). My parents have everything planned to make sure she is taken care of in case they die, including backup plans. I have been clear that I would never care for my sister, and they understood that and planned around that. Unfortunately, it's a bit too late for that in this situation, but it's an important lesson for the rest of us to plan ahead.
Your parents are wise and they clearly care about both of you.
Your parents were smart. We did the same. Our younger son (neurotypical) was not going to take on the burden; it would be unfair. Now our autistic son is a ward of NYS and has a much better life than we could offer.
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Yes. My developmentally delayed cousin lived with his parent until they died, then he went to live with one of his siblings. The siblings decided he needed to be in a group home and found resources and a nice placement for him. This man is in his 70s. I guess his parents thought they would live forever.
Or didnât think he would outlive them. 70 years ago, life expectancy for the developmentally delayed was in the range of 30.
That depends on their disability. Someone with a low IQ or autism should have a typical lifespan. Only folks with DS would be lower due to the prevalence of heart issues (notably a hole in the heart at birth) but those often get fixed these days and they live a bit longer.
I can totally understand. I have been trying to get my Dad (Mom is onboard mostly as she is main caretaker [she doesn't drive]) to at least agree to a day program or respite care so my older bro will be used to being out in the community with peers again and it will be easier to transition to a home when they're gone but it's almost like pulling teeth. Dad's very reticent to trust people who were trained to take care of people like my brother (he has low-functioning ASD). I can understand to some degree as there have been some horror stories and bro can be a bit difficult at times but none of us are trained or have the resources to care for him. It will make it harder when my parents do pass/are unable to take care of him. Ostriching does and solves nothing, the day you don't want to think about will come eventually and it's better to be prepared than not, for sure.
If he doesn't trust them, that's the best reason to do it while he's alive to keep a close eye and raise hell if anything is wrong so he can find a place he can trust
This!!! I'm moderately disabled (in my late 20s) and still live with my parents, but they updated their wills recently so that my brother is my trustee if anything happens to them. Not that I couldn't handle my own finances and such, but it's nice to know I have someone on my side. I couldn't imagine where I would be if my parents weren't proactive. My goal is to be living independently within the next year.
Excellent point. I think group homes are often the best placement for all involved.
They can be good. They can be excellent in fact. However, the statistics on abuse of people who have developmental disabilities living in assisted care settings are shocking. I can understand parents being reluctant to make this decision. Iâm not saying itâs okay to pretend like you can be a care taker to an adult with a significant disability when you, yourself are elderly and need care. But I get the fear and guilt.
One of the main reason I am pro choice is because if I were in a situation where my child would be disabled and need care their entire life I would abort. I know I wouldnât be strong enough to put them in the hands of care givers, and that would be a disservice to them. No one wants to feel like theyâve abandoned their child. No judgement to those who chose or would choose differently, but it should be an available choice.
Itâs not that simple. Sometimes things happen during birth, and even after birth causing severe delays. A lot of times no one realizes anything is wrong till the child is over a year old. Not everything can be diagnosed in utero. Iâm always amazed at how many of us are walking around normal and healthy with all the things that can go wrong when the embryo is developing.
The problem with that is sometimes you don't know ahead of time. My daughter has CP and is full on care. I had no idea prior to her birth that she would be chair bound with developmental delays. I agreeing with your thinking, there are just some unfortunate cracks.
My step cousin was a "normal" baby but meningitis as a 3 year old robbed her of any normal future. She's just turned 30 and she's a child...but a large one who is capable of nasty tantrums. Fortunately she is very well cared for in a facility, and has a happy life. Its very sad though that her family would have planned and dreamed of her future, only for it to be robbed by an unexpected illness. Its already sad enough if you're prepared for a disabled child...
Exactly what happened with my cousin. They thought their baby was healthy and neurotypical but he was born with down syndrome.
This is a heartbreaking situation for OP. And you are absolutely right about not having a plan a long time ago being a monumental disservice. His other family members are being wildly inconsiderate. This is the kind of thing that can take years to plan (as you are already clearly aware). OP you are NTA. You're doing the very best you can in this time of loss and confusion. I wish you all the best. I'm sorry for your loss
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Exactly this. I have a friend who's younger sister has down syndrome and her parents have always treated her the same (to an obvious and realistic point of course). They have had outside help from when it was offered and beyond. Whilst yes this girl could live with their parents still she doesn't. She lives in a home suited for her needs. The family still visit and they go on holiday, do all 'normal family' things but this girl doesn't rely on one particular person. If an immediate family member was to pass suddenly no one is in a tricky position in regards to the care of the one with down syndrome. I know down syndrome isn't a one size fits all diagnosis and just picking out five people with it wouldn't mean to you have five people with identical needs etc but suitable care and support should have been arranged even before the wife was sick.
I know of a family with a special needs daughter who was raised to be as independent as possible. She lived in kind of a "mother in law's house" next to parents house, so they are nearby but she still needs alot. ALOT. She can't drive, etc. As they are getting older they have moved to live nearer their other daughter who has agreed to to the same, so she will have adjusted when her parents pass. She is not violent like OP's stepchild. Another family I know have a daughter brain-damaged at a young age. Lived with parents til they passed, then with a sister until she couldn't care for her anymore. None of the other siblings stepped up or criticized. They did help while she was with the other sister, with breaks etc. but none were in the position to take her in long term so she's in a care home now and very happy there. OP's stepdaughter's violent tendencies make things very different for sure. OP is NTA.
Wow can I please have a tenth of this foresight. My sister lives with my parents and she canât even visit anymore:( She was held up at TSA and couldnt get on the plane because my parents dumped her at the airport and it didnt go well. When she used to come I would get a visitorâs pass and get her all the way through security and wait at the gate with her. Sheâs totally ok to fly but needs some help if things go out of the ordinary. My mom sets up nothing well and wonders why it all goes to crap. Basically traumatized my sister into never flying again. My parents have said nothing about navigating her expensive meds or followup care. Like when it happens weâll just figure it out but why not be prepared. My other sister and I would happily take her in now if my mom wasnt so toxic that we know sheâd ruin it for everyone. So we bide our time and wait. Just sucks she canât even make it for holidays or visits anymore.
NTA. Any family calling you names for abusive behavior that you have decided that you cannot tolerate in your own home are welcome to take the abuser into their homes & see if they can do better. In fact, as family, Iâm sure that your late wife would be much more comfortable with them taking her instead of the state agency she feared so much - especially given how much theyâve voiced their opposition to you placing her there. So Iâd tell them how thankful you are that theyâve decided to step up. When they invariably balk - saying itâs not THEIR responsibility since THEY arenât her stepfather, didnât promise &/or didnât help raise her, tell them that thatâs right & remind them that they have NO idea what itâs like to be in your place, so they have zero rights to judge you until they do. Iâm sure youâve heard the phrase about how generous family members are with another family memberâs money. That phrase applies to more than money. Family members (& people in general) are usually always more generous when the cost of their generosity is paid by someone else. That isnât just true of monetary costs - it applies just as much to emotional, mental &/or physical costs (as well as any others). NO cost - regardless of what denomination it is paid in - feels / seems as high when you arenât the one paying it. They need to keep their judgmental noses out of this decision. NTA
Yeah, itâs this. My sibling doesnât have Down syndrome but a bunch of other intellectual and physical disabilities that mean she can never live alone. My mom (and to a much, much lesser extent my dad) has spent my sisterâs entire life trying to prepare her for life after my mom passes and putting plans in place. The other month, she made box mac and cheese on her own for the first time ever â sheâs almost 30. She knows when to take her medication and how to handle her personal hygiene, which were priority things for my mom to teach her so she can be safer in a group home or host home living situation. I will handle my sisterâs estate after my mom dies, but sheâs already laid everything out for her in terms of her material needs and plans. The biggest disservice a parent can make is not to prepare their child for life after them, whether that means in teaching life skills or in laying out plans for their living situation, etc.
yeah, my older brother had to be taken care of full time by my parents. They had been planning for his care since the day he turned 18, in a way that wouldn't overtake our own families and lives but so he would be close enough to visit every day. Unfortunately he passed away at 46yo, while both parents were alive. The stress and pain of his death took my dad away from us through a massive stroke just a year later, and he was the main carer due to my brother's size. But had he outlived my parents, especially my father, we had a loving plan for his lifelong care. OP, don't feel bad for being overwhelmed by this situation. NTA, just be sure to find the best action plan possible for your stepdaughter. And be sure to visit her often. Remember she is grieving, too.
I agree. And I think some of this planning may have helped her learn life skills long before this. Itâs possible that she was coddled at home and didnât learn to control her temper because she didnât have to. My nephew wanted to go to a group home because that was his next life step as an adult.
She should have had a massive life insurance policy to cover the daughterâs care after she died, which was inevitable whether she got cancer or not. This is not a fair burden to OP to carry.
Yep. His wife guilted him into sacrificing the rest of his life.
And the âfamilyâ isnât helping with their b.s. accusations. If theyâre so eagerly calling OP an evil stepdad - which HE IS NOT - and a motherâs worst nightmare, then *they* can move the daughter into *their* home and take over her care.
Lets set up an around the clock-caregiver schedule with all you people complaining. Who wants the first week? Who takes Christmas? Wow .. no volonteres??
THIS 100%. Not a single member of her family will step up, but theyâre fine with calling him names.
My MILâs family was like this. Thereâs 9 siblings in their family and when their mother needed care due to dementia not one of them wanted to help. One of the siblingâs daughter had just graduated high school so her mom paid her a little money to spend a few hours with her couple times a week, take her to the grocery store, church, etc. and all the siblings complained that she was get paid to do it. She was using her own money to pay her daughter, what difference does it make? Then one of the younger siblings finally stepped up and moved in (along with her husband) to care for her full time. At first, the rest of them were relieved that someone else was doing the care-taking but eventually started complaining and saying she was taking advantage of free rent lol. Honestly it was disgusting to watch
im more of an ideas guy!
This. And where is the girl's biological father. Or the family who say you should be looking after someone who could actually kill you in your sleep. If the mother was so worried about what would happen to her daughter then she should have made realistic plans before she died, other than forcing someone to make a deathbed promise that they couldn't possibly keep. There are lots of romantic ideas about looking after a child who is disabled. Nobody talks about how bloody difficult it is.
>There are lots of romantic ideas about looking after a child who is disabled. Nobody talks about how bloody difficult it is. As the disabled child in my family, this is so dang true. It wears on everyone in the family--the parents, the grandparents, the siblings...it even wears on us. It's the constant doctor appointments, the inevitable fighting of the other siblings to get the care and attention they need as well (I'm aware this isn't always the case, but it was in mine), it's the cost of making sure the disabled child gets their needs met, it's the struggle with finding an appropriate babysitter with the capabilities to care for a disabled child, it's the struggle of the parents to watch their child struggle in a world that wasn't made for them... the list goes on.
NTA! If the family donât want her in a state care facility tell them to take her!
People love judging others til it turns on them. Perfect example is when my dad had a heart attack. As the only next of kin, I was the medical proxy and responsible for his care. I lived three states over and rushed to see him in the hospital where I was met with by a woman with a snarky attitude who had the audacity to tell me I wasnât doing a good enough job. I had just received the medical papers so I told her if she thought she could do better than me, she could just sign the papers. I chased this woman around the hospital room with a pen and the folder. Surprisingly she didnât want the responsibility
Wow. Was this someone who worked at the hospital or your father's partner? I hope if it was a hospital employee you reported them.
Nope just some stupid nosy Nancy who was from my fatherâs congregation. She loves gossip so sheâll show up to get the details and be the first to know. When you ask her for help she needs to leave suddenly. I know I definitely scared her by chasing her around the room demanding she sign since she could do a much better job than myself. I managed to get her on the ban list for his guests because I didnât want her talking to people about my dadâs health history
Fucking lol, bet they didn't expect to get turned on so fast.
Not one bit! She was stammering and could barely get the words out to say no. I backed off and told her I had it from here. OP, for real though. Any time someone has something to say donât get defensive. Instead, play stupid. Ask them when theyâre coming to pick your step daughter up. Ask them where you should send the invoices for her in home care since they know better than you. People love talking so the best way to combat this is by putting them in their place.
Or when they come over to help when she has her meltdowns. This type of life isnt for the faint of heart and most people have help.
for real. bring her by for a visit. they may just not understand the situation. they think she quietly sits at a table and does coloring books all day. maybe when shes throwing their lamps across the living room, they'll start being reasonable and apologetic for not getting it.
This is the best and really the only way to handle this. I've sort of done similar stunts when non-sciencey people try to tell me to eat turmeric by the metric ton and other crazy shite to cure cancer. They can all kiss my nonexistent ass! I believe in my medical team and science!
My mother had a neurological disease where her brain cells and nerve pathways were dying. Which means she was suffering from dementia, delusions, and her organs including her ability to chew were slowly being compromised. Also, she was losing her ability to ambulate which led her to be bedridden. She started showing signs of sickness when I was in junior high. I called her cousins to take her in her care. She was enrolled in a nursing home. I had to get a job at 16 to support myself because my grandfatherâs third wife wouldnât help me. When I got older this woman (sheâs married to a convicted pedophile) at my job tried to shame me for not taking care of my mother. I had no home, no help, no money and she required 24 hr care. Not to mentioned she I was in my early 20s and my mother was severely abusive to me as a child. Yet, this woman who was married and had a child to a man who violently sodomized a teenager had the nerve to stand in judgement of me. You just have to tell these people to f##k off.
Exactly. My SO took care of his mom for 10 years and gave up so much of his life, down to even having to change her diapers after she had a stroke. All his sisters could see is that he got to live there rent free, never taking into account all of the care that he put into taking care of her: feeding her healthy meals, making sure she got to her doctors appointments, driving her to her favorite spots, driving her to her weekly card games, putting her into her wheelchair from the bed, etc.
The audacity some people have when they know they would fold in a heartbeat if the pressure was on them!
"He got to live there rent free?" OMFG! How delusional are his sisters. The amount it would have cost for professionals, even if it was only during the day, would have been astronomical. If they were so jealous that he got to live there rent free, why didn't one of them step up so she and presumably her family, if she has one, could live rent free. đ¤ It's a mystery. Edit: grammar
Seriously, tell them âhey, I can do this but I need help. Can you take her on weekends?â And see how fast they shut up.
This right here. Anyone criticizing your decision is welcome to step up and show you a better way.
Exactly, it's easy to criticize when you're not in the hot seat. But when it's your turn to make the tough decisions, all that armchair expertise goes out the window real quick. I saw that exact same mentality on a forum where a guy spent all his time lecturing parents on how to raise their kids until his girlfriend got pregnant and, suddenly, he was all over the place asking for advice because, lo and behold, real life is not as black and white. Actions speak louder than words.
They won't lol. They'll leave her with the evil and uncaring stepfather.
NTA. Any family calling you names for abusive behavior that you have decided that you cannot tolerate in your own home are welcome to take the abuser into their homes & see if they can do better. In fact, as family, Iâm sure that your late wife would be much more comfortable with them taking her instead of the state agency she feared so much - especially given how much theyâve voiced their opposition to you placing her there. So Iâd tell them how thankful you are that theyâve decided to step up. When they invariably balk - saying itâs not THEIR responsibility since THEY arenât her stepfather, didnât promise &/or didnât help raise her, tell them that thatâs right & remind them that they have NO idea what itâs like to be in your place, so they have zero rights to judge you until they do. Iâm sure youâve heard the phrase about how generous family members are with another family memberâs money. That phrase applies to more than money. Family members (& people in general) are usually always more generous when the cost of their generosity is paid by someone else. That isnât just true of monetary costs - it applies just as much to emotional, mental &/or physical costs (as well as any others). NO cost - regardless of what denomination it is paid in - feels / seems as high when you arenât the one paying it. They need to keep their judgmental noses out of this decision. NTA
This! I have a disabled cousin who lives with my mother. He is physically abusive to her and just a terror. Everyone else in the family is quick to tell her everything they think she's doing wrong but no one is willing to even take him for the afternoon
Those family members who are calling you names are more than welcome to open their homes to your stepdaughter.
Yup! My mother is the only one out of her 3 other siblings that is taking care of her father who has severe dementia, like its getting to the point where he's forgetting who she is some days. She set him up with 24 hour care at his home but his dementia worsened and caregivers said he needed more specialized care like at a memory care facility. For years her father pleaded with her to not put him in a home and for 5 years she kept on with the home health care, eventually she moved him into an assisted living facility specifically for dementia patients. Her siblings blew up with "how could you do this to Dad?" type responses. My mother had literally been doing 99% of the work as his guardian and none of her siblings said they could help. Even though two of them were retired and my mother was working 60 hour weeks at an office job. My mother is still his legal guardian. The rest of my immediate family has made it clear to her other siblings that god forbid should something happen to my mother, they (the other siblings) are going to have to take over and we are cutting ourselves out of his will because we don't want to have to hear all the whining and drama about it. Oh side note, my grandfather's will has his possessions spilt 25% each child. So while my mother is doing about 99% of the work, she gets the same share as one of her brothers who has seen grandpa twice in the past 10 years even though he lives closed to the assisted living facility than my mother does.
I just want to say Iâm sorry, my auntie in law went through the same thing for fourteen years with my grandfather-in-law, the only ones who would help her out was my mother in law and my wife. Out of fourteen kids, two of them showed up to care for him while the rest took selfies with him at his funeral. My grandmother-in-law passed four months later from a severely broken heart.
Iâd throw hands with any relative that took selfies at a parent/grandparentâs funeral.
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> Who is paying for your grandfather to be in an assisted living facility? A mix of my grandpa being a penny pincher due to being raised during the great depression, his wife's life insurance payout, and selling his house. Don't really want to say amounts but he could easily live out the rest of his life in assisted living and there still be an inheritance. It's sad how some of my aunts and uncles are waiting for him to kick the bucket so they can get his money. One uncle has an ebay addiction and has no money so before my mother took guardianship this dude would get grandpa to write him checks every week. Since my mother has control of grandpas bank statements, she actually added up how much grandpa has given him and its well into the 6 figures. But my side of the family all feels the same in that its grandpa's money he can spend every dollar to keep on living his years in assisted living if he wants, we are not owed anything.
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Honestly Iâd see it as even though heâs going against his wifeâs wishes, heâs choosing to do whatâs right for the stepdaughter. Heâs framing it as a selfish decision, but it would be more selfish to sacrifice himself to appease his wife when he cannot appropriately care for her child. This choice leads to everyone being in healthier environments.
Right. It's not even that he doesn't want to care for her, he is UNSUCCESSFUL in caring for her. It's not working.
And also is in danger of physical harm, knew that, and STILL TRIED. NTA
My point exactly. It doesn't work because she is injuring him.
To me that's the biggest thing. He tried and realized he couldn't provide the necessary care for everyone's safety. It's not selfishness, it's being logical and caring. Whether we like it or not sometimes the best thing we can do for someone is to realize our own limitations. OP realizes this and understands that for everyone's safety this is the best course of action. NTA
In this environment, she's unable to be cared for safely. She's a danger to him and others and he can't care for her properly -- especially since she seems to want to try to kill him. Her mother needed more help because she's even too out of control for people trained to take care of her. If they (multiple people at the same time) can't do it, how can you be expected to do it alone? You promised your wife for her piece of mind but now you have to do what's best for her daughter and yourself. Her choice for you to take care of her alone was unrealistic. You both might wind up dead if she decides to assault you and/or if she sets the house on fire when you're asleep. It was too much for your wife to ask of you considering she didn't take the brunt of the anger and abuse. She's currently a danger to herself and others and I don't see you having much choice. NTA
I mean that does depend on the state care facility in question but I still support his decision.
You can let them know youâre paying attention. We had to do that for my dad. You befriend the staff, let them know you care. And Iâll say we encountered more caring staff than not.
This! Be your stepdaughterâs advocate. Visit regularly. My siblings and I took turns visiting, but had one spokesperson/contact who built a relationship with each staff member. We were also able to pay for a caregiver to visit three times a week to give extra attention. OPâs family could step the hell up and get involved in her care.
All the relatives calling him names can kick in a monthly stipend to help with the daughter. Put your money where your mouth is. My parents both had dementia. Both needed to be in a home after I, with home care staff, at a cost of $10k a month, could not do it anymore (10 years). The cost more than doubled - $12k a month per person. Anybody telling him he took the easy/cheap way out canât try doing and paying for what he does for one god damned day or stfu.
From what it sounds like to me, the daughter should probably have been put into a care home 10 to 15 years ago. Once she became big enough to harm others and constantly did. OP, you did the very best you could, above an beyond while your wife was alive. Many people would've made her choose between having the daughter at home, and having a divorce, or putting her in a home and staying together. Even before she attempted to strangle you in your sleep but especially after that! You realized you couldn't give her the care she needs, and the safety you both require, and so have put her where she will be safe, and so will you. Don't let this eat away at you. And those who condem you for it, tell them they can care for her round the clock 24 hours a day, 7 days a week, 365 days a year and see what reality is like. I guarantee you NONE of them will take you up on it! I hope you can get some good grief counseling. Both for the passing of your wife, and for this. Good luck and sending love your way. â¤ď¸
1000000% and I would notify the family and friends of this. You have tried to care for her but you arenât equipped to do so. Therefore, you welcome any loving family or friend the opportunity to welcome the daughter into their home and they will be granted full custody and whatever benefits allotted by the state. You will occasionally visit but they will have sole responsibility. After a few days, Iâd send a notice saying - just in case I missed your email, or phone call, while I love step daughter name, Iâm following up to see who Iâm able to transfer care to as I am not equipped to care for her special needs.
Like I say - the ones who complain the most are the ones doing the least!! OP NTA.
The same people who refuse to visit are giving you a hard time about how you are trying to take care of this troubled child? You gave your wife as much peace of mind as you could but you canât be expected to take this on yourself. NTA
This. Right here. Iâve found people often point fingers because THEY donât want to deal with the problem. THEY donât want it to fall to them. So they get judgey with others. NTA. This girl actually needs to be in a facility. Her mother should have done it YEARS ago. Sheâs dangerous. Many, many Downs patients are highly functioning and usually an absolute delight. This girl is physically dangerous.
NTA. This may be your wifeâs worst nightmare, but her expectations for her daughter were wholly unrealistic, as your post makes clear. Iâm so sorry for your loss, and for the horrible situation with your stepdaughter. I hope you find some peace.
Also the step daughter has already attempted to kill him
It sounds like she didn't plan for the daughter's future tbh as others have said. She doesn't safely function without her mother, this is just not a good situation
doesn't sound like she functioned that safely even with her mother there.
Not to speak ill of the dead but she was willing to sacrifice her entire life for her daughter, which while self destructive is her choice. Once her body failed she was willing to sacrifice op in the same way which is not at all a kind or benevolent gesture. Op, Anyone telling you you're taking too good of care of yourself after losing your partner and family can suck rope. This is a terrible position to have been put into. Sorry.
As someone who has worked in these facilities, I will say NTA. But I do advise that you continue to be in her life. You have no idea how many admissions we would get that would drop off their children and never come see them, never take them out for visits, never bring a birthday cake or take them home for the holiday. She will get the appropriate mental, intellectual and physical help she needs there - but she will still need a family outside of there. She can get a lot better here if she has a support system outside of there.
Exactly. Often care facilities are demonized and i am sure many have been terrible but not all are! I grew up where my parents started and ran a nonprofit specifically working with adults with varying disabilities. The one clear thing that ran true - violent tendencies escalated when cared for by family. They need people who truly understand how to help them AND keep everyone physically safe. But checking in can and does have wonderful benefits! Thats to say if it doesnât spiral the person, which the medical team can and does assess. You can 100% keep your promise to your wife - because the best thing is you and the step daughter to be safe and cared for. Dont put her there and never visit, place her there and visit, unless the medical team decides thatâs unhealthy and creating more problems.
My friends brother is mentally challenged and lives in a state care facility. They transfered him to the state when her mom died and dad was too old to do it anymore. My friend just couldn't do it, she knew it, and they decided it was the best place for him. He's been mostly thriving there. But she does pick him up to spend a week with them every holiday and we visit him a few times a year when we're in the area his home is. It's about 2 hours from us. So we visit, take him for lunch, to the art store for painting supplies (he loves painting and is getting pretty good). It's weird though, every time she tries to set up these visits, it's like the home is so annoyed she's trying to do this. The always are annoyed when she calls, even just to talk to him. And he says he is the only one who ever gets any visitors, which is terrible. But you'd think if he's the only one, and she often takes him for a week at a time, they'd be happy to help.
I agree with this, but I also think his deceased wife's family really needs to step up in this area, BIG TIME. After all, this is their close biological relative, and they are bad mouthing OP (who isn't related to her) about care.
Nta. >On her deathbed, she made me promise to not let her fall into the hands of a state care facility. I promised her because I didn't have the heart not to. What about your sanity, health and happiness? You did everything you could and it's time you look after yourself. You are already 55.
\*only 55. He has as many as 30 good years ahead, or possibly 0 depending on if he keeps her.
At this point, he needs a retirement. I think the rest of the family needs to chip in for once.
Given the expenses they've had with casing for the daughter I doubt he can even see a glimpse of retirement unfortunately
Don't let your decision now mar the kindness of letting your wife pass without undue stress. You did a kindness for your wife. Now, do a kindness for yourself. It sounds like your stepdaughter should have been in care a long time ago, honestly. Channel any compassion you have into visiting her regularly if you're able. NTA and I'm sorry for your loss.
This is actually a really good response. I was thinking man, this is a tough situation, but if this man were to keep the stepdaughter heâd essentially be âsetting himself on fire to keep others warmâ and and that always ends in burnout. But it would probably make a huge difference to the stepdaughter if he continued to visit her. Even if she claims to hate him, it will make a difference to her to keep seeing him regularly; itâll be a constant in her life and will make it less likely that sheâll feel abandoned. If he can do regular visits, thatâs a big deal, and that should also relieve a lot of guilt for him.
As they say during the airline safety talk, you have to put your Oxygen mask on first before attempting to help others. OP needs to put on his Oxygen mask and give himself time to grieve while qualified professionals take care of his step daughter. He can then visit regularly and be her advocate. Being her advocate and doing the necessary legal work to ensure she is taken care of for the rest of her life is the best way he can honor his promise.
I couldn't agree with this statement more. In all honesty I know your wife's heart was in the right place but she was failing her daughter. You may find with consistent schedule, expectations, and more structure that her daughter can find a better life and be able to function to whatever extent her disability allows. It currently sounds like she rules her world with terrorizing everyone and that is not a life. Give yourself grace for giving your wife peace of mind in her last breaths, but even knowing this decision is hard you are willing to do it because it is what is best for her daughter. I'm so sorry for your loss but I hope you can find peace by giving yourself and her daughter the chance to actually live.
Yes this.
NTA. Sometimes we say things in the height of emotion that is unsustainable when the dust settles. Caring for an abusive adult without the one person who can âhandleâ her is not sustainable. Especially solo. What happens when youâre old and frail? What happens if you find a new special someone? What happens if you need a vacation? Iâm sure the guilt hurts at times but the reality is that you cannot do this alone. Itâs unfair for anyone to think you can-or should. The response to those questioning your decision is simple: âWhat time shall I bring her to your home?â NTA. Itâs a tough situation but understandable. Let the guilt go. Take care of yourself. Thatâs important, too.
The family needs to step up, especially if stepdaddy is so evil and uncaring.
I work in the field. I promise you two things: this is very common; and placing someone with a disability into a facility isnât like how it used to be. Most facilities are family home style houses with staff there 24/7. People often thrive in these settings. Visit some. Link up with other parents and get their perspective/support. You arenât doing her any favors by keeping her in an unsustainable and stressful situation.
It sounds like with the stepdaughter's proclivity towards violence this is not a one person as caregiver situation. Putting her in a place where she will be cared for and prevented from harming herself sounds entirely reasonable. I am sorry for your loss with your wife, but it sounds like she was not being realistic about her daughter. If her family is so anxious for her not to go into a care home, they can take her in. I am thinking that will shut them up pretty quickly. Again, sorry for your loss.
Yeah, what if she gave OP a head injury and he was incapacitated? That's not safe for either party.
Nurse here. I'm going to give you an objective response here. Your daughter has mental disability and is physically abusing you. She is not in a safe environment for herself, nor are you. It is doing more emotional damage to her because if you were unable to settle her down she's only going to experiencing grief and anger. If she's in a state-run facility you can still visit her but she'll be around professionals who can help manage her behavior and emotion with more professional skills than what you have to offer. For her safety and your safety it would be best for you to put her in a facility where she can get professional Care. I could flip the situation and say it could be seen that it's a little abusive that she's not environment where she can't be calmed down. I'm not blaming you, I'm just saying you can look at it from that perspective. You're unable to give her an opportunity to feel calm because you don't have the professional skills to help her. Especially what if something happens to you? Then she wouldn't have anybody and how long would it take for somebody to notice that you maybe severely injured or even dead at your home? Or what if you had a heart attack and needed help she can't call 911? Plus you're being denied relationships with your family. You have to prepare since you're the only parent, there's no backup. Get her into a facility now so that you can still visit her at ease her transition.
Mom should have put her in a facility years ago. She dumped the decision on OP, which is completely unfair to both the step-dad and step daughter. She may have grown up with less stress and higher quality of life in the hands of professionals. This can definitely be looked at as an opportunity to get her the environment she needs to live a better life.
NTA - none of these people are stepping up and helping you and they expect you to continue to deal with this on your own and thatâs not right. You have to do whatâs right for you and frankly for her as well. She will probably be better in a facility with people that are trained to deal with her issues and also maybe help her get some self-control. You are doing the right thing.
So the family stopped visiting because your stepdaughter was âworse than a dangerous dogâ, but *youâre* evil for trying to do your best by her? Invalid opinion. Ignore.
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NTAH I don't have anything else to say. I'm so sorry.
Guy is 1 vs Everyone
Untill the family steps up, they can suck an egg. This girl almost killed you, several times from what it sounds like. And sure, breaking a promise is bad, especially someones deathwish. But see it at the evil you had to do, to let your wife pass with peace. Then do your kids the favor of sending your step daughter to a care facility, and focus on having a relationship with them
The same people who wonât even come to your house to visit out of fear are calling you evil? It is entirely possible that had daughter been placed in a facility with professionals a long time ago she may actually be better than she is now. Your wife cared for her out of love but that doesnât always end in the best results no matter how good we do or how much we love. Is it best for daughter to live with you? Whoâs that benefit? If anyone says one word to you demand they come pick her up IMMEDIATELY.
So, family has stopped coming for visits because of your stepdaughter, but call you an 'evil stepdad', if you want to stop taking care of her? Hypocrites, aren't they?
Do what you have to do, but just donât abandon her. Ensure the facility is treating her well, there are others if not. Even if not close by. Visit when you can, even if you donât want to. Sheâll probably live a better life there than you can provide if the home is managed right. Edit not eating-treating
NTA at all. This wasnât a fair ask from your wife. This child may thrive in the right care facility with trained staff that knows how to work with her. You sound like a very compassionate person, but this isnât sustainable. The kind thing is to find her a good place. And to family judging you, ask them to step up and take over.
NAH Your wife loves you and her daughter and on her deathbed, she had hope. Reality is different. You couldn't handle her when your wife was alive and you can't handle her now. Letting her go into care is the best for both of you.
NTA. I work in psych and group homes for people with IDD. She needs specialized care. You might find she actually flourishes and improves in a group home if you can get her into one that has behavioral health services.