Lived Experience Forum

[Farside]

Hi. First time posting, hoping I'm in the correct space 🤞 it's a long story. I'm a Mum of an adult schizophrenic (medicated but) and substance abuser, won't go into unnecessary detail. My current focus is keeping my 5 year old grandson safe, mentally and of course, physically. I would love to hear from anyone in the same position ❤️

[joecl]

I'm sorry to hear about your situation. It's great that you are focusing on keeping your grandson safe. Many people here understand what you're going through and can offer support. You're not alone. Feel free to share more or ask for advice.

[Farside]

@joecl Thank you so much. She has become more unpredictable lately, more verbally aggressive, very accusatory and irrational. I'll do anything to diffuse a confrontation, especially in front of my grandson. I try not to react, rather just back out of the situation. He does ask me why she gets so angry, at me and in general. I am always supportive of her when speaking to him, but I guess it's only a matter of time before I have to start explaining the situation? Some resources of how to talk to a 5 year old about schizophrenia would be a big help, if they exist.

[Friendlyflutter]

Hi there @Farside ,

We wanted to take this opportunity to welcome you to the forums.

We hope that you find the forums a great place to connect with other members, share stories and ideas, and find the support and connection you deserve.

Feel free to Introduce yourself here if you haven’t already!

We look forward to seeing you around on the forums!

It is good to hear that you are looking for supports to talk to your grandson in an effective way to explain schizophrenia, you mentioned your daughter is medicated, are you in touch with her supports? they might have some advice on how you can have this conversation with your grandson as well. 

[Farside]

@Friendlyflutter thank you, but it's schizophrenia I need to explain to my grandson. My daughter is awaiting an appointment to reassess her medication. Her drug taking is preventing it from working properly, I'm sure. Patients are automatically taken off their books if they haven't been in contact for 3 months, and the process has to start all over again, beginning with a visit to a GP. I don't find them (the local public mental health service) to be very helpful. Understandable, they're over worked and under resourced. 

[Ru-bee]

Hi @Farside this sounds like such a challenging situation for all of you. 

Seeking resources to help you explain schizophrenia to your grandson is an excellent idea. Here are some that I found that might be helpful, the first one isn't specifically about schizophrenia but it is a helpful guide to speaking to different age groups about mental health from Emerging Minds 

Then there's this resource from Kids Helpline, while it's not aimed at very young children, it is written in more plain language then you might find elsewhere which could be helpful when considering your own wording. 

It is definitely a tricky conversation to have but it sounds like it will be important given what your daughter is going through. How lucky they both are to have such a wonderful support in you.

I hope you're taking some time to ensure you're caring for yourself in the midst of all this. Do you have supports of your own who you've been able to lean on or reach out to?

[Farside]

Thanks so much, I'll look at those links very soon. I have a few people I can chat to about our situation now and again, but I don't like to overload them. My husband (her dad), by his own admission, is pretty useless in this area, and although he helps with caring for our grandson when he stays over, he is physically unwell which limits his support. To be honest, it consumes my thoughts for most of the day and if I wake up during the night. I do work from home, so that does help take my mind of it.

[Ru-bee]

@Farside I hear you about being conscious of not overloading your friends, though it's good that you are able to talk to them about this. Now you also have this safe space to talk about it too when it's weighing on your mind, which it sounds like it is quite often. 

[JRS]

@Farside Hello, This is my first time here and your posts very ring true with me. My son refuses medication, we have had absolutely awful encounters with public mental health and its not all to do with under staffing and under resourced.

I totally understand the all consuming worry, not wanting to overburden friends because you just feel hopeless and helpless so much of the time. Not engaging with anger or delusions. I moved out of my own home because I could not stay in the house with him (not because I wasn't safe, because it was causing me so much anxiety and sadness to be around him all the time) but I needed him to have a place to be safe.

He rarely goes out, has no friends, no job, no benefits because he wont comply with treatment (wont even go to a GP and the times I have tried to get him help has been via CAT team and each time it has ended disastrously) and therefore we can't get a disability payment for him. Which is mentally and financially very tough.

His father lives overseas and does help as much as he can but he doesn't really fully understand it, also by his own admission. The stress has also been a contributor to a recent break with a long term partner who could no longer deal with my almost constant turmoil.

I have spent around five years trying desperately to get him help and have found it an impossible task. Now I am resigned to trying protect him and the only times I have felt truly heard has been by peer support from people with lived experience.

That is why I am here - to help myself so I can continue to help him. And perhaps for those of us in these situations just knowing we're not alone is helpful.

I feel for your situation.

[Farside]

Hello 👋 your situation sounds heart breaking. You're a strong person!! We were lucky that the mental health department at Logan Hospital found a vacancy at (mums and bubs mental health unit) Lavender House at Gold Coast Uni Hospital when GS was 3 months old, which was 3 years after her symptoms became severe and she moved back in with us. When she was released, 7 weeks later, we cared for both of them for 3 and a half years in our home, then bought a townhouse for them, but drugs are now a major problem. She went off her medication for 2+ years, it was a calculated and conscious decision, and she did really well, up until the drugs.

Some days I feel if it weren't for my GS it could be possible for me to "look away". You have done the right thing, to look after your own mental health, otherwise you can't help him.