Advice about my mother

My mother was diagnosed with paraoid schizophrenia in 2015. I’m her main support in the family and I feel alone in this. I would like to have some insight for my situation.

She is highly obsessed with me, and has high anxiety. That’s the main reason I am the person who takes care of her.

She hears voices all the time, she believes she communicates with people - dead or alive, and she may go out of the house to have a meeting with said people. There were times that I came home from work and she was out somewhere waiting for them (not very frequently). She very rarely leaves home, is very isolated, doesn’t like to meet or see new people, if she meets someone new she gets paranoid about them. She sometimes comes into my room to check if I am alive, and she often thinks that I was stabbed/hurt in some way and gets paranoid about it. And so many more. She is on meds, and gets therapy frequently but has a hard time opening up to her therapist (she has a hard time expressing herself in general).

I have been taking good care of her, but she isn’t getting any better. I’m 28 years old and I haven’t been able to go out there and build a life for myself. My dad doesn’t think that this situation is serious - he’s a bit indifferent, he goes to work and comes home late, has to sleep early, so he doesn’t really have a first hand experience with her, and doesn’t really understand the severity of her condition, and how hard it is for me to be around her and witness everything. I tried to talk to him many times, maybe to hire a caretaker or something, a professional to help her. but he’s like “just accept this.” Sometimes I feel bad and have things to share with my mom, but when she hears about my struggles she gets upset and worse, so I have to seem ok all the time. It gets to me, and I feel lonely in this. I feel like my life will revolve around her forever, and I won’t be able to build something for myself because she heavily relies on me. Also it’s really hard to see her like this, knowing what she was like in the past. I am heavily depressed and have been using SNRI’s because of this situation.

I don’t have people around me to share this and get advice, so I’m posting this. I feel alone being her only caretaker in a situation that I can’t really help. I just wanted to share my situation with people who would understand, who has the same disorder or have their loved ones suffer from the same thing, and maybe get some advice. What can I do to make this easier for both of us and how should I approach her? I’m feeling pretty lonely in this, and I feel guilty for it. Any help would be appreciated.

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Hello Random,
I have not posted in awhile, but would like to welcome you to this site.
There are many of us here to give you support. You are not alone, we all can relate to your situation.
It’s so hard to keep all of this to yourself, is there a support group in your area?
I hope you say in touch here in the forum, take care, annie

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I applaud you for being so involved with care for your mom. But you also need to have a life. Have you heard of NAMI? I highly recommend that you find and attend one of their Family Support Groups if there is one in your area or within reasonable driving distance. I especially recommend the NAMI Family-to-Family Class if and when one is offered in your area. The classes have no cost to attendees.

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So sorry to hear this Random. I do not post much, but I feel my dealing with this for over 20 years. with my spouse, and other relatives, maybe its time to share some of my insight into helping others. I had to reread the post, and it seems your mom is on meds, but they do not seem to be achieving efficacy. If she is still hearing voices, and actually responding to them. You also said she is in contact with a therapist, on an ongoing basis. If this is the case then it seems you are doing all you, or anyone can do at this point. Please keep your spirits up, you sound like a wonderful daughter, your mom is lucky to have you.

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Welcome to the site @Randomplease . This is a place where you will find lots of people who understand. Unfortunately, sometimes medicine and therapy don’t give us back our loved ones the way they used to be. That is a constant sadness, for sure. However, you cannot give up on making your own life to care for your mom, especially if your dad is available to her too. Somehow you have to fit a life for yourself in there. You have to be caring for yourself if you are going to be able to continue to care for her.

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I’m sorry you are also going through this. My son is 31 and has been ill since 13. My ex couldn’t handle it so I’m all alone living with my son as his only support. His father visits fir two hours four times a year.

Pre- Covid got 1 hour a week where his social worker can and took him for coffee. When it is safe to do so can you check into a day program for her?

When your father isn’t working can he give you time off? Is that on the weekends? It is a 24/7 job for me but my son is now doing very well on Clozapine. Other drugs didn’t work. He still gets some “breakthrough” psychosis but it’s manageable.

Self care for caretakers is so important. I hope you find a way to do that. I agree that NAMI is a big help.

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It’s interesting, Donna, I don’t know that I’ve heard anybody here talk much about any day programs and it’s really such a brilliant idea. Does anybody here know of any such programs for our loved ones? If so, what type? Is there transportation available? Is it a daytime facility in a hospital or is it more of a school environment or recreation center? Or is it in a home? Will they assist with daily medication administration? What types of activities do they do? Are there group outings? Maybe they offer group support meetings?How is it funded?
Wow… this is brilliant. So many questions, so much potential… :thinking:

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Clubhouse systems seem the closest thing I know to this. Leads me to think you might be able to patch together a hybrid “consumer”/professional run day care system similar to what you suggest. I hear of DX-ed folk doing ‘gig’ work like Uber and Doordash, so that might serve as a transportation and supply system. With some administrative help and supervision, I could see this working.

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I have also heard good things about the Clubhouse model. https://clubhouse-intl.org/