Family and Caregiver Schizophrenia Discussion Forum

Options for where my daughter can live...she’s too afraid to live with me

My 35 year old daughter is in the hospital for the 2nd time this month. She went there today because she was terrified someone was coming to our home to harm here. She doesn’t want to live in my home any longer…or even in this city/state.

Does anyone have any input on group homes…or any other ideas?

Dear Sweetpea, I go through the same daily nightmare with our daughter (45), whose troubled mind and thoughts claim her life is under threat, “someone” is pointing at gun at her, is fearful day in day out, sobs in her bed all day with her fears, even in the car she bends down and hides, nothing will change except getting the correct medication to calm her mind (no success so far after 2 years of trying), she cries and says no Drugs or Drs can help her as “its real and it’s happening”, it’s just so sad painful and tragic for her.
I try to encourage her to listen to soft calming music…burn incense.
We are in Australia and have no facilities other than a mental health hospital, unfortunately, it’s a revolving door. I don’t know what to do either, I’m at my wits end, everyday is a battle.

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@Maggie46.

Dear Maggie,

Thank you so much for your response. I am sorry that you are walking through the same struggles with your daughter. I guess we have to do our best to love them…because there doesn’t seem to be much help available for the mentally ill.

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Yes Sweetpea that’s all we can do, even though it’s such a difficult journey. My heart breaks everyday and night for this new life of shattered dreams,
I do come on to this forum as much as possible to get comfort and true support from others and know we are not the only ones suffering.
It really is unbelievable how our lives have changed.

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@Maggie46. I must apologize for being so negative yesterday…it was an especially hard day. While it certainly does seem that help is not readily available for my daughter, I am not going to stop looking for things/places that can help. I have heard stories of others where things have improved…and the quality of life is better. I certainly understand the feeling of shattered dreams. This is not where I pictured our family today…but I have to believe there is a purpose in it all. I hope that you and your daughter find some peace…one day at a time.

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The most helpful resource I had was the social worker assigned to my son during hospitalizations.

I advise going to check out any place they might suggest. Some are horrid, some are so-so, and a few can be nice places.

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@Vallpen. Thank you SO much for that information!

You were not negative at all @Sweetpea … sorry it was such a hard day, being unmedicated and unwell gives us and our loved ones hard days everyday.

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Hello @Maggie46 and @Sweetpea, I understand the pain of unmedicated psychosis in a beloved adult daughter. Mine is 36 now, and her journey with this illness began in March of 2016. I am lucky that several events led to my daughter getting on medication in Dec 2018. During her prior hospitalizations, several meds were tried, some worked better than others, but it was only the antipsychotic meds that helped her lose her fears. Now that she is on meds, she would be eligible for a group home, none in my area of Florida would take someone not medicated. However, now that she is on meds, she WANTS to live with me and is happy to be home and I am just as happy to have her. Unmedicated, she stayed in her “studio apt” that I built into our house and rarely came into the shared part of the house. I feel your pain, I hope that you continue to have hope that your situation will evolve into a solution. It is soooo very hard to watch the paranoia and be helpless to change it much.

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Thankyou @oldladyblue your kind thoughtful words are always so comforting, gosh, I’m so waiting and anxious for any signs of an improvement with the new meds now being taken for 6 weeks, but nothing.
I’m so happy your daughter continues to be well and responds positively to her depot injection, such a relief and a wonderful outcome for her to be living safely with you at home.

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Good evening @oldladyblue and @oldladyblue

Oldladyblue thank you for sharing the story about the progress your daughter has made. That certainly does bring me hope.:blush:

Maggie I am thankful your daughter is taking meds and I sincerely hope you see some results soon.

My daughter is currently in the hospital. Normally she gets some relief while there because she feels safety behind all the locked doors. Today she called and told me “they” had found her…and they were on the roof and would get to her before the day is out. She has not been taking any meds for psychosis…so I am hopeful that they will prescribe what she needs and that she will comply with meds while there.

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Good evening @Maggie46

Sorry…meant to include you on this response…,

Oldladyblue thank you for sharing the story about the progress your daughter has made. That certainly does bring me hope.:blush:

Maggie I am thankful your daughter is taking meds and I sincerely hope you see some results soon.

My daughter is currently in the hospital. Normally she gets some relief while there because she feels safety behind all the locked doors. Today she called and told me “they” had found her…and they were on the roof and would get to her before the day is out. She has not been taking any meds for psychosis…so I am hopeful that they will prescribe what she needs and that she will comply with meds while there.
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Dear Sweetpea, if you read some of my previous posts you will see my daughter has severe Epilepsy, as a result she developed organic psychosis 2.5 yrs ago, due to her delusions tried to commit suicide, was admitted into a terrible government mental health facility for 4 months, she knows if she doesn’t comply with the psychiatrist she will be admitted back there and is so terribly frightened.
This is the only way she is willing to take the meds, it’s been 2 years now with absolutely no success, she’s frightened beyond belief of the people out to get her, cries to me in desperation “it’s all real and no Drs or medication can help, she going to lose everything”.
Your poor poor daughter, imagine the pain and torment she is going through, it’s so unfair, I just don’t know how we can fix it.

Dear Maggie

Thank you for summarizing for me your daughters condition. This is the first time I have participated in a forum of any kind…and I haven’t gotten the hang of navigating around yet.

My mom dealt with epilepsy most of her adult life, so I am somewhat familiar with that condition. I had no idea that it could cause the psychosis. That must have been absolutely terrifying for you when that began to manifest itself.

I saw that someone’s name was “onedayatatime”. I like that…because that is a reminder that it is the only way any of us can walk this out.

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Yes Sweetpea onedayatatime is really all we can do, my first time on a forum as well, the support is incredible.
You may be getting some respite whilst your daughter is in her safe place of hospital, try to take some time out for yourself, even though it must be difficult for you to concentrate.
@oldladyblue is always so generous and supportive, Thankyou for caring.

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You certainly got it right. Respite yes…concentration not so much. :blush:

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@Sweetpea have you tried asking your daughter what would make her feel safe? That is, what is different about where she is now, your house and any other potential place she might live that causes her anxiety.

I understand you aren’t likely to get practical answers or she may not want to reveal details of her fears if you are part of them, but it may help to try and pinpoint what her fears are. For example when I had a psychotic break, I chose to go to the hospital instead of home with a parent. At the time, I believed the parent had died and been replaced by an impostor and even if the parent was real, I may have been harmed by the parent in the past. While in the hospital for a few days, these concerns faded as I had other pressing issues and goals.

While I generally don’t suggest caregivers to baby their adult children, you may want to look at this in a similar fashion as a child who is afraid of ‘monsters’. I don’t recommend any suggestion that her fears don’t exist, rather you may stumble on some equally superstitious or illogical way to make her feel safe. I’m thinking of the old joke about the charm/necklace that keeps polar bears away that’s been 100% effective so far. It might be something simple like installing a lock or a simple burglar alarm, or may be not.

I guess this is an practical extension of the LEAP method, so you may want to search and read up on this on the forum and elsewhere.

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@Maggotbrane.

Hi there…thank you so much for the feedback and suggestions. Right now I am pretty overwhelmed so I can’t really take it in…but I will look at this more closely later.

Generally speaking my daughter will say her fear is that someone is after her…but she can’t say who. She gets really upset talking about it. It is not just my home that she is sometimes afraid of…lately she is fearful wherever she goes. She called yesterday from the hospital and said that “they” had found her there…and were on the roof. So even the locked doors that normally give her some comfort…brought no relief.

@Sweetpea most likely this is because of persistent paranoid thoughts reinforced by vague hallucinations. I felt I was being surveilled at home for nearly a year while unmedicated. I created an elaborate back-story for my ‘watchers’. They were a male/female pair of FBI agents similar to Mulder and Scully from the X-Files (this predates the show).

I assigned them names, I talked to them/myself in private assuming they could hear me. I thought my best bet was to convince them to go away. I felt they were there because of some mistake and didn’t want to be there any more than I did. Over time I started identifying with them and found them somehow sympathetic. A set of rules evolved over time. They generally didn’t follow me to work or school. I only talked about them vaguely to family members for various reasons, but went into more detail with a therapist. There were times when the ‘rules’ were seemingly broken and this caused me anxiety and inner conflict.

In my case by engaging with them, I made peace with them. They were a form of therapy in a way, as they were creations of my mind in reaction to my hallucinations and persistent thoughts. While I wouldn’t encourage your daughter to elaborate on her delusions, I encourage you to listen to and empathize with her fears and be persistent in asking her what would make her feel safe, or safer if she feels she can’t be safe. This may mean getting her a talk therapist that she feels she can trust. That’s what worked for me, and I eventually came to accept that medication would help me.

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@Sweetpea I understand feeling overwhelmed by advice and education on psychosis. It’s a lot to take in. The LEAP formula @Maggotbrane mentioned may lead to your daughter telling you what makes her feel more protected from “them”. It was using LEAP that led to my building a backdoor in my daughter’s room, with steps down to the ground, so she could leave the home anytime she felt unsafe.

My daughter liked her voices even though they seemed to me to be against her. Her paranoia was about me or my husband or the tenants in the back apartment, and because she had 3 routes of escape with the additional door, she felt she could almost always get out if she felt threatened by us or the voices told her to leave.

Maggotbrain recommended LEAP, and I do too. “I’m not Sick, I don’t need help” by Dr. Amador. I downloaded it off of Amazon and read it straight through. The LEAP formula for getting the ill member to talk IS the way I made daily improvements for my household one little step at a time over a year. It is a fairly easy to read book. I had to read it twice to “dumb it down” for me to use. I started with 1) getting her to accept food, 2) getting her to open her door to talk to me instead of only talking through the bedroom door and 3) getting her to go out for nightly walks (which we still do).

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