Hello @Cp63,
Hope you're going well. Just wanted to follow up from my attempt to reply yesterday 🙂
Firstly, sending you and your son our best with the upcoming transition from hospital. As my initial post mentioned, my son recently received his diagnosis...this was after his second extended stay in hospital. On reflection, I would've liked to have received a bit more of a 'briefing' from a Dr or Social Worker about what some of the likely transitional phases might have been for my son as he re-adjusted to life in the community...just so I could be prepared a little better in terms of what to expect and whether there was cause for (serious) concern or not.
In my experience, I've found that there's so much 'second guessing' and uncertainty when caring or supporting someone with a severe mental illness, that is draining and can add to everyone's worry or distress. However, the helpful news is that I believe that the transition might've been a bit better if I'd had a little further insight into what to expect. So, I thought I'd share a little bit about our experience in the hopes that it might help to support you. 🙂
Quick background: Ideally, our son was meant to transition to a step-down facility (24 hr nurse/social worker/counsellor etc) as his initial step in transitioning back into the community. However, it turned out that there weren't any facilities with a bed available at the time when he we deemed ready for discharge. There was one spot a very long way from us, but we were not keen on this, as a family, due to the travel involved in trying to get to see him...over a 2 hour round trip. We have always been close with our son (despite the difficulties at times) and knew that we would not be able to reasonably incorporate this much travel into our schedule.
So...after much discussion...my husband and I decided to create a 'flat' at our house. We have a reasonably small home (3x2), but decided that with the other kids away at uni etc, this was the option that was going to give our son the best chance at a successful transition out of hospital. Creating the little flat was like an episode of the TV show The Block. Big time pressures etc, but with the generous help of a good friend and tradie (gotta love tradies), and lots of hands-on work from us...we got it done in time (like with 4 hours to spare!!)
Now, for the transition part:
1. Our son thought he was well when he was in hospital. I think that he was comparing himself to some of the other patients. Based on his comparison, he thought that he was ready for discharge and good to go. Similarly to your son, our son didn't accept his diagnosis. But, he did accept the fact that he now needed help and was willing to take medication. He doesn't love it, but has a sense that it must be helping and his compliance with medication was his ticket to discharge in his mind!
2. Once he was discharged, he was very tired. On reflection and talking with him 3 weeks on, he can now see that he was still not as well as what he thought he was. That first week was up and down. He needed to sleep alot and rest.
3. On his first few short trips to a grocery store to get his favourite foods, he compared himself to others and realised that he was still not all that well. Whilst this was a bit of a shock for him, he took it rather well and we just focused on encouraging him to get good rest, exercise with us and so-on in that first week.
4. It turned out that he had grown fond of a few of the nurses in the hospital and missed the banter and conversations with them. So, this was tricky for him. There were a few times in that first week to 10 days when he wanted to go back to hospital (after wanting to leave hospital for so long!), but it wasn't for reasons of being unwell...I believe it was because he missed the chats with nurses and the routine he'd become used to...I think he felt more secure with what he had become accustomed to and needed time to get accustomed to the new normal at home. With support from us and very close monitoring, he settled in. But it made it clear to me that we needed to establish some good routines at certain times of days to help him feel secure and supported. These routines seem to have helped.
5. At around the 2-week post discharge mark, he was starting to feel more settled and wanted to feel 'useful'. So he found some volunteering work a few hours a week...something he'd never done before. It is with some beautiful people at a lovely organisation, and has been a positive event to look forward to in his weekly schedule.
6. Due to seizures he experienced in hospital (meds didn't agree with him 😥), he is unable to drive until October. So, we have lined up about 5 different modes of transport that he can use. One is me...the others are his long-board, bike, Uber and public transport. We got his bike serviced and he has really enjoyed the exercise and independence that this has provided him with.
7. He wants to get back to work, but it's still too soon. So together we have decided that some work in a very part time capacity might be a good way to start ('baby step'). At the moment, about 6 hours a week is his capacity. Even then, if he didn't want to work, I'd be fine with that for the time being (we are still learning about where his base line is and he said last night that this is the first time in his adult life that he has been well - and he is now getting to know himself with a more compliant mind), but he says that doing something helps him feel a bit better...so we will give it a go and monitor.
He found a few hours of trade assistant work with a friend, but didn't enjoy that. So we are trying another avenue of circling back to a previous employer from a few years ago to see if they might extend some understanding and provide a few hours of work a week. We will find out more on Monday.
8. But in our experience so far, it really is 'gently as it goes'. Diet, sleep, routine, medication, exercise, people to talk to and something to do are all great elements to get established in the early days.
Today we are taking our first day-trip to the country to go on a gentle hike. Despite living in a city, we are all from the country and find that we all feel better when we can get out of the city. Our son also clearly identified this as a supportive element for him during the week when I took a day off work to go and visit with a friend just outside of the city for the afternoon. He said how much calmer and clear headed he was. So, we decided that we'd leverage off the back of that insight and head out of the city for the better part of today and go enjoy some of the beautiful forests and quaint towns nearby.
Lastly...our son still isn't at the point of accepting his diagnosis. I think this will take some time. He does acknowledge that he needs support, that he has been through a lot, that his mind doesn't always work with him and that some of his meds seem to be helping. He still thinks he was fine when he went into hospital...he can't understand why he was admitted, which has been a hard topic to navigate with him at times. But over the last while, he has been starting to re-connect with close trusted family and friends who saw him in the week/10 days prior to his hospitalisation and we are all sharing similar anecdotes about his health (or lack thereof). So based on this, he is slowly starting to think that maybe, something was going on and he might not have been as well as he thinks he was.
This must be a frightening realisation for a person to consider, so we are proceeding carefully and gently. I think it is quite understandable that they don't want to believe, at least initially. It must be worrying to wonder whether you can trust your mind at times or not. Therefore, we are supporting him to choose a few people who he knows are trustworthy, have good consistent judgement and to ask them to help him monitor himself (one of those people is me). People he'll believe so that if they say, "hey mate...you seem to be not travelling too well...let's check in with your nurse or doctor..." he will be more likely to believe and go with that. I really can't fully imagine what this must be like for a young person. (I had an acquired brain injury from a motor bike accident at 17 - farm work - and had 4 years of epilepsy and 'brain snaps' as a result, so I can recall and apply those memories, but I still don't think it's the same. I can relate to meds, loosing my licence, social isolation etc, but I eventually made a good recovery. I hope our kids can get to remission too💙).
So, for now, we are being kind, gentle, giving time. He says he needs people around him more often than not, so we have made a schedule. We have tried to keep it fun and light, whilst maintaining routines and improving his diet.
I acknowledge that this has been a very detailed message...but a month ago, I was feeling quite lost and worried in the lead up to his discharge. I didn't know what to expect when he came home and wished I'd had someone to speak to who had lived experience as a carer of a young person living with this MHI. Therefore, I thought I'd offer this detailed account of part of our experience so far (3 weeks on from discharge) in the hopes that it might help you in some small way.
Take good care and sending our best.
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