I talk to more people about my son's schizophrenia than he thinks, but usually only say that he suffers from anxiety, as this is so true, and covers so much of what his/our daily life is like, although not the extent of its impact of course.
Living on tenterhooks, not knowing what goes on in my son’s mind carried on during lockdown pretty much unaltered. I double guess all the time what can make him anxious or paranoid, (and if I do, try and play it down, change the mood or activity) as he rarely explains, describes or expresses himself out loud, and 90% of the time looks worried/sad, and rarely smiles.
I worried straight away that conspiracy theories would take hold of him ... phew, they did not. I worried that he would not accept having to stay in during lockdown ... phew, he did. It turns out that if a lot of people worry about something, he will find his own worry, not necessarily linked to it, but a strange aspect of it.
As for me, I had to make sure that I made the most of the hour of being able to go out during lockdown. I preferred to be on my own, to ‘escape’, but as he also ‘obey’ instructions he probably went out in the surrounding countryside more than he does now! I started cycling again ... just to go further from home.
I found very difficult the fact that he could not visit his dad, as that was only allowed for children. I researched the’ exceptions’ I could invoke if it got too hard to have him here 24/7. Just knowing I might do this helped. His dad was vulnerable anyway and visits still have not resumed properly which has affected their relationship.
What struck me is that my son was ‘relieved’ he didn’t have to socialise anymore, which diminished the pressure he often feels. Less ‘FOMO’, less pressure.
I was relieved, impressed and so grateful that my son’s 4-weekly blood tests were done at home, allowing him to talk to someone else from time to time... but admit I felt uncomfortable about the nurses donning their necessary apparel which could be witnessed by neighbours! The latter know my son is ‘odd’, and holds weird/disjointed conversations, but I avoid explaining. I thought the nurses’ appearance would also worry him, but it didn’t. I was also impressed that he had his regular chats with his psychiatrist on the phone, and I was able to take part too.
What also helped me was the phone contacts I had with the friends I made through Rethink Mental Illness carers meetings. The knowledge that you can be open, that they empathise, that you don’t have to pretend that everything is fine. Keeping my son safe and sound (and myself, I know that I can’t do this if I don’t have time on my own) was paramount. I can't let him worry about me taking on other people's needs at the expense of his.
I am lucky that I have always found ways of relaxing and could hang on to some: Zoom sessions for choir / dance, being in the countryside…we are lucky to be fit, and I feel privileged compared to carers who also have issues of their own. We also learnt to find our own space more within the house. My son had only been living with me for a bit more than a year when the first lockdown started, I was still getting used to having ‘lost’ my house space... I still struggle with this, but it is as it is!
Despite more understanding of mental health post-pandemic, schizophrenia is a harder diagnosis to talk about freely, as it is less understood. I do not feel I can sign this in my name as I don't want to be recognised; lots of people know about my son's diagnosis, but only because I know them well enough, and they know him personally.
With thanks to this carer and Rethink Mental Illness for sharing this story