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Carers UK Forum • New to the forum
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New to the forum

Posted: Wed May 04, 2022 9:03 pm
by Pansy_2205
:D Hi Everyone

I am the only Neurotypical in my house, which makes me the odd one out 😜

I am married with 4 grown up sons

My husband has Bipolar as does our youngest aged 22, who lives with us.

I also have 2 sons aged 29 and 25 who are on the Autistic Spectrum, the 25yr old lives with us.

It’s been a really rough year for us as my youngest’s mental health has really deteriorated with 2 suicide attempts, endless suicide threats, psychosis and really challenging behaviour. He is now fully engaged with and supported by mental health services and has finally given permission for us to be informed of what is happening and agreed to take medication. Me and my husband are still quite stressed out from it all.

I don’t have any support from anyone, so it’s been tough coping alone.

I hope to get to know you all 😊

Re: New to the forum

Posted: Wed May 04, 2022 10:26 pm
by Ula
Welcome Pansy
I am sorry you and your husband have had so much worry for your son.
It has been similar for my partner and I caring for our daughter with schizophrenia.
So distessing.
I try to go for a walk each day, what do you do for some calm self care?
Warm wishes Ula

Re: New to the forum

Posted: Wed May 04, 2022 11:11 pm
by Pansy_2205
Hi Ula

I’m sorry to hear about your daughter.

I have a lot of hobbies I used to enjoy, such as learning guitar, genealogy and a stack of books. I’ve lost focus recently however. We are still on edge listening for the middle of the night suicide texts that happened every week. The new meds seems to have zonked him out a bit and I’m hoping his mind will become clearer. He currently believes he is the reincarnation of John Lennon and we are not spiritually enlightened enough to associate with. I have to laugh about it or I would be constantly in tears.

Re: New to the forum

Posted: Thu May 05, 2022 8:58 pm
by Ula
Dear Pansy
I agree, when each day and night is full of fear that the person you love will loose their sense of reality and somehow be harmed or die it is hard to find the energy for creative fun things.
We have basically been on the edge of crisis for eight years.
She is on her third medication and has managed to stay out of hospital and no sections for about two years.
The latest meds she is taking seem to be helping.
All I hope for is she will have peace of mind from the voices
I hope your son has a care coordinator it helps a bit.
We have simply shown love love love, like you seem to have done and that is I think the way to show the voices and the young person that they are ok.
Yes we have had to see the funny side I have to do a lot of candle lighting and goddess card reading to be alongside her and friendly.
Warm wishes Ula

Re: New to the forum

Posted: Fri May 06, 2022 9:43 am
by Pansy_2205
Hi Ula,

I too hope the new meds will give you all some peace. 8 years is a very long time to live in this way. You must have phenomenal coping skills.

As a parent all we want is for our kids to live happy lives.

Tell me more about you, Ula. Do you work? Do you have a support system?

How do you keep sane throughout all this?

Re: New to the forum

Posted: Fri May 06, 2022 10:17 pm
by Ula
Hi
At first I gave up work to care and be there but over the years she has got gradually more independent and when meds are working she can manage in her flat with my husband helping most days with hanging out and company. he is her main carer and I work to support them both.
Works for us at the moment.
I coped by listening to dharma talks and eckhart tolle, not for everyone but really helped me.
How about you do you work and does anything help you steady yourself.
Warm wishes I hope you have all been ok today, Ula

Re: New to the forum

Posted: Sat May 07, 2022 12:35 pm
by Pansy_2205
Hi Ula,

Yes I love Eckhart Tolle.

Yes I do work part time.
My husband who also has Bipolar doesn't leave the house so like my youngest, they both sit on their Xboxes all day long.

My son has declared he isn't taking his meds any more after 4 days, which is disappointing.

Have a great weekend, hope you are able to get out in the sunshine :D

Re: New to the forum

Posted: Sun May 08, 2022 7:48 am
by Ula
Dear Pansy
I hope you like your work.
It seems to me that people with psychosis really struggle to believe in medication.
Sometimes they give injections to overcome this but whilst I am ok with injections and medication I would hate the thought of feeling forced.
I sometimes say to my daughter "are you helping yourself feel as well as you can by doing everything the Dc advises"; but mostly I try not to get unloved in suggesting she takes medication as it causes her to not trust me.
I often ring crises line , I hope there is one for you, and state I do not have the patients permission to speak, but I need advice.
The hardest thing has been calling police and ambulance when I know she and I are to at risk to Try to cope any longer.
It has been a long wait for therapy for her and still waiting.
I hope your son is alright and not to risky.
Thinking of you.
Warm wishes Ula x

Pema Chodron is for me as wonderful as E Tolle.

Re: New to the forum

Posted: Mon May 09, 2022 8:47 pm
by Ula
Dear Pansy
Back to square one, daughter fully psychotic again she sent me away from her flat and not unsafe enough to call police, I hate leaving her alone.
Trying to stay calm watching the birds on the feeder.
I wish there was more supported housing.
I wish she would live with us but that does not work either.
Phoned mental health team review on Thursday.
Feel so guilty.
Sad today Ula

No pressure to reply x

Re: New to the forum

Posted: Wed May 11, 2022 5:20 pm
by Pansy_2205
Hi Ula

I’m so sorry to hear about your daughter.

I’m sure you know that you have no reason to feel guilty, but as parents we do anyway.

I will be thinking of you.

Our son is back on a different medication and Diazepam to help with side effects. He is now refusing to speak with the home care team so they ring us. He has also damaged his phone and expects us to pay for a new one.

My husband and I are running away for the weekend, we just need to get away for a bit.