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Adult SD24 mental illness and when is our home no longer the best place for her

Con's picture

I have a SD of 24 who is moderately mentally disabled. A low IQ. When I got married I knew this and expected she would live with us on and off throughout her life depending on her ability to work. We have a mother in law suite she lives in in our house. 

She over the past 6 months has started showing signs of hallucinations and delusions. She fights/argues with people who are not there. This includes swatting, yelling if she is alone, and mumbling/chatting/nodding/looking or staring when she is with us downstairs. We got her evaluated and she was diagnosed with schizophrenia. She is on medication, but it's not being effective so far.

I have 3 other children of 5, 4 and a newborn. I can't sleep anymore. I hear her up at 2 and 4 in the morning stomping around and yelling. I see her come down during the day and bat at her hallucinations while she eats. We are getting her help but I feel we are not the best place for her with other kids everywhere. I also worry about my toddlers getting caught up in one of her fights/arguments. She loves them very much but she has already tried to pull my eldest to the side to "protect" him from a hallucinated assailant.

 

Am I a bad person for wanting to get her in a group home? I dont know what else to do. Opinions?

Harry's picture

There is really no medication for schizophrenia, it’s just drugs to keep them in a stupper so they sleep all the time. And not cause pronlems.  They don’t like the drugs. They don’t work sexually o these drugs. No feeling.  So they stop taking the drugs and the cycle continues.  Most likely no place wants her. No body will want to paid hundreds of thousands dollers to keep her.

you don’t feel safe then your DH has to get her out of your home.  Mostlikely you are not safe 

tog redux's picture

What?! This is very wrong. There are medications for schizophrenia and they are very effective.  Modern ones do not sedate as much and can make people much more functional. They go off of them because it’s part of the illness to lack self awareness. 

OP, she needs a group home or supportive housing. .  Maybe when she’s stable she can move back home but she needs more care now. 

Rags's picture

One of my childhood BFFs was Dx'd as Schizoprhenic about a year after he graduated from HS.  He graduated a  year before I did.   Ultimately his parents had him made a ward of the state.  He is now in his mid 50s.  He will always be a ward of the state, he lives in an apartment on the end of his parent'ts home and they have a condo in the neighboring state where he is a ward.  

This protects his parents from being the ones to have him commited when necessary and it protects them financially.

Protect your young children. I agree with the group home option. I would also suggest that your DH pursue having her made a ward of the state.

STaround's picture

Of course you are not wrong for your feelings.   DH (and you if you want to help) should slowly start looking at alternatives.   Some group homes have had violent employees (as reported in NY Times).  I would see if there are any that have cameras, but in any event, you need to start looking before any decision made.

Twix's picture

The thought of sending her off breaks my heart a little, I guess it hits a little close to home as my uncle has schizophrenia. He has never been violent per say but he has had episodes (2 times) where he went off his medication and authorities did need to be called. He would then have a stay in the hospital and get his medication back on track. He is honestly one of the most empathetic, brilliant and kind hearted souls I know. 

I do understand that it can be very scary, more so when you have young children also living in the home. What about a short stay where medications could get figured out and established. 

GoingWicked's picture

I actually just read an article last week about the ketogenic diet helping people with schizophrenia.  That many were able to go off meds.  Might be something to talk to her doctor about.

marblefawn's picture

I feel awful for you -- to me, mental illness is the cruelest fate people suffer.

Brief hospitalization might get her the intensive treatment she needs to find the right drugs, get her on them and used to taking them, and it would give the rest of you a breather. In essence, it might stablize her so she can return to your home.

Or, doctors might recommend another setting for her or a longer hospital stay.

The point is, hospitalization is a chance to have her observed on a longer term basis by doctors used to prescribing drugs for individual needs. They might recommend a group home or other setting based on what's best for her. You will have a chance to weigh in about what your household can and can't offer SD so the best decision can be made.

You can't live with ranting and raving all night, especially with little kids. Emergency hospitalization is a big step, but imagine how confused and scared SD must be. Talk to her psychiatrist and see if he or she is willing to admit her -- that would be the best way to get SD into the hospital. But if not, you can also call 911 on a difficult night and emergency responders can take her for brief observation. This is usually messy and unpleasant, so you might want to do it when your other kids are not around.

It's true the drugs are much better than they were, but don't believe they work for everyone. There are so many factors, and doctors don't even know why some medications work for some people and others don't. The best you can do is keep trying. Unfortunately, you need SD to be willing.

I've lived with people with mental illness. It's not a sustainable situation without stabilizing the person with the illness. You and your husband also need to think about SD's long-term living situation. You won't be around forever. It would be great to find a situation for your SD that doesn't depend on you or her dad so you know she's settled in and independent. Don't wait too long to start planning for her independence.

ESMOD's picture

I'm going to throw this out there because I think it's important for parents of children with special needs to understand the special responsibility that they have to their children will likely carry forward beyond their own lifespan.

If his daughter is not capable of independent living, he should be proactive in putting her in the position that she can live independent of HIM.  Even prior to this current mental health issue, it seems clear she was not going to be able to live alone.

So he should be getting her evaluated and eligable for some kind of group home situation.  Because when he is gone.. it will be doubly difficult to deal with an even older adult who has had no experience living apart from family.  This doesn't mean she is being abandoned .. but being given the opportunity to live her life independently to the level that she is capable of living away from home.

Of course, he can still be involved with his daughter.. but especially now, it seems like home is not adequate for her needs and potentially a danger to others in the home.

Harry's picture

You can not make her doing anything she does not want to do.  They can not lock her in a group home.  ( unless court order ) She has a right to leave at anytime she wants.  Most group homes have rules, no drugs or alcohol 

Most mentally ill people do drugs and or alcohol to feel better.  That becomes a other problem in it self.  You have to live it to understand it.  They can only make friends with other mentally ill people, normal people will not put up with it.  So you have two ill  people feeding off of each other.

tog redux's picture

If she is this disabled and unable to care for herself, they can get guardianship of her, and then yes, they can place her in a group home.  It's likely they would get it right now if they tried.

Con's picture

Wow, I can't express enough gratitude for how understanding all your comments have been. We had previously researched a few local places that we liked. 

One in particular has short and long term respite as well as full residency options. I guess it's time to start calling and checking out some facilities. 

It makes me feel worlds better to hear other stories of people who needed more help than could be provided at home. 

On the medication front. We monitor her taking her meds closely and watch her take the pill. She is also willing and eager to be medicated. She says the man she sees is violent and frightens her. It may be hereditary that meds aren't working well since her father has drug resistant bipolar. 

We have been treating his very successfully with routine and diet. We've been cooking meals for her since diagnosis and I'll look into the diet mentioned. It sounds interesting and like a good fit for us. 

The amount of positive comments brought me to tears. I have been without any support. Thanks guys.

tog redux's picture

There are injectable medications now, too, if compliance becomes an issue - they usually last around a month. Will she sign for you guys to talk to her doctor?  There are a lot of medications now, and hopefully they will try her on all of them. 

Thumper's picture

Sorry OP, that for what ever reason you feel bad for considering  sd24 should be placed into group home or equivalent.

Some things are bigger than we are OP. It is more merciful and compassionate to have sd24 in an environment that is control and monitored by highly skilled professionals.

There are medications and therapies that in harmony with eachother, will do more good than harm.

GoodLuck

beebeel's picture

You wouldn't care for a person with a brain tumor at home. There is no shame in putting her where people are trained and qualified to treat her.

HowBoutScottyDont's picture

While I'm sure the guilt is immense, I think it would be best for her to be in a group home. That doesn't sound like a healthy environment for your little ones. You can still see her and spend time with her, while maintaining a calm (calmer) home for yourself, husband and kids. The group home can manage her meds, monitor her, and she'll be in a place equipped to handle her hallucinations and episodes. Sorry you are going through this.

ESMOD's picture

After watching a friend of my father's situation.. I think it's actually worse when people try to do too much on their own.  This poor woman was a widow and had an adult (mid 40's) son that had never been able to live independently.  He also had never had any formal diagnosis of any limitations.. basically she just took it all on herself to support her son.  He likely has some social anxiety issues.. perhaps asperger or autism.. and he was never able to work.

Because she never had a record of any diagnosis.. when her cancer came back and had metastasized...there were precious few resources that could be tapped.  She had two adult daughters who had ZERO interest in taking on this "man-baby" that had sucked family resources up for decades... they had families of their own and were not going to take him in.  The woman had virtually no assets.. no life insurance.. and had been living off Social Security.  But had not much to leave him.  She did apply for SSI for the guy at this point.. but obviously he was denied (no record of diagnosis) and with her health issues.. she didn't have the stamina or band width to fight that battle (and didn't live long enough to even go through the process).

She also had decided during all of this to move all the way across the country so had left most support resources behind there. 

Last my father heard.. they guy was living in the paid for trailer out west.. not working but not spending much of the meager amount he inherited.

It would have been a much more kind thing for his mom to have gotten him the help he needed and the independence that he needed long before it became a life or death situation for her.

Your husband should consider that when he is gone.. it will be hard enough on her.. but if she is already settled in a more independent life?  it iwll be a much easier situation for her and everyone else.

still learning's picture

This is above your paygrade OP. The loving thing to do is to get her the care and supervision she needs. As mentioned above, what will she do if/when her father is no longer there to house her?  There are many group home companies, adult foster care, and adult assisted living arrangements. There's something out there that would be a good fit for her. I didn't read it but is she qualified for SSI? That would be one of the first steps to take so she can get funding.  

You cannot live this way and subject your children to her untreated mental illness. The daughter needs help, not coddling from her father.