Stir Crazy

[Charlie2750]

My son aged 35 is still living with us his mum and dad .He has severe learning disabilities and attends a day care centre 5 days a week. He is picked up every day by transport. He takes thyroxine for hypothyroidism. Over the last few years or as far back as I can remember he has sometimes been very vocal and "high" but we have adjusted thyroxine up and down but I don't think this has any effect at all .I was told I could do this by an endocrinology consultant while he was seeing her.

The problem is he is coming home every day and mostly bringing home all the staff worries so that we hear their problems every day many times over but he gets details wrong .Also he picks up on our conversation and repeats it back mostly word for word and sometimes getting it wrong. Example -He used to like watching Neighbours when he got in, which was recorded, with my wife but of course the programme has ended but we cannot seem to help him understand that it has finished and he keeps adding in his sentences that "and we can watch neighbours " and switches to another topic quickly. He adds a half sentence between other sentences so we know what he is thinking. We are thinking that this is probably a stress reaction but we are finding it very stressful and if anyone has any coping ideas we would value some opinions?

Over the last year there has been Covid ,he and his friends at the day centre have moved to another place ,staff changes ,staff sickness, his brother has been in trouble and more recently we are having building work done which all adds to the stress.

I think actually writing it down has helped already to understand but it may not help me/us to cope without getting "cross" which I hate admitting!

[TBDavid]

Don't be cross with yourself. Just remember you are doing your best, that's all you can do and what you have been doing

Let's hope they will show reruns of neighbours. Or find them on YouTube.

As for the repeating stuff, there's nothing you can really do. But, maybe let the manager of the day care centre know. To be fair, staff shouldn't be discussing personal stuff in front of their clients- not very professional.

You have a lot going on, but remember you can only do your best.

By the way, well done for taking care of him. He's a lucky person to have you.

[Charlie2750 Community friend in reply to TBDavid]

Thank you for those kind words it makes me feel better knowing there are people/2friends" out there showing understanding! Charlie

[49Twister]

I totally get you. My son lives in supported living and constantly discusses the staffing problems as they are obviously discussed in front of him. As TBDavid says staff shouldn’t be discussing issues in front of him so I think I would mention to staff about this, as I suppose it’s sometimes easy to forget. Have you thought about supported living for the future? We get older unfortunately and life gets harder looking after someone with a learning disability. It’s not something we want to talk about but we all have to face up to it at some point. My son was 41 when he went into supported living, I was 66 and struggling as I had been his main carer all his life. He’s now 48 and I’m 73. It’s far from perfect but I realised I could not do it full time anymore. Take care and look after yourselves.

[SpeedyH]

Hi there. I think you have a really good understanding of what is going on for your son at the moment and he is lucky to have you on his team. As you know, all behaviour tends to be a way of communicating and it sounds like your poor son is stressed out at the moment. You don’t say if he has Down’s syndrome, but the behaviours you are describing are very typical for that condition and probably for other learning disabilities too. People with DS can struggle with ‘transitions’ or change in their life and you have described some really big ones there in your son’s life. They can also be very empathetic and might be picking up on your worries about his brother. They also find processing spoken language that they hear very challenging and often repeat or ‘practice’ things that they have heard to try and make sense of it. And because they are not so good at processing what they hear this can be inaccurate as you have found out. It sounds like your son is adding neighbours into his talk to try and make sense of why he has stopped being allowed to do something that was his routine and very much enjoyed.I think perhaps you have to let him carry on with his talking as he sounds like he needs to do this, but perhaps have some strategies to help him cope in a less annoying way! A couple of things come to mind, perhaps set up a new routine to replace the neighbours, perhaps the special time with his mum after a stressful day is what he is missing. Also, try and give him lots of visual clues about what is happening in his day, perhaps a visual timetable. You could then have a slot for telling each other about your day, and then you can remind him that then is the time to do that. Perhaps his day care could help with this as they will have similar things that they use.

I wonder if your adult social care team has a special intervention team for people with severe difficulties (often around behaviour). If they have perhaps ask for a referral as a speech therapist or LD specialist might be able to help. Finally, tell everyone you meet that what he says about you might not be accurate! 🤣

[Tracidu]

Hi, my son is 37 and lives at home with me , I completely understand how you feel , my son sounds similar to yours . Just lately he has become very loud and has high anxiety , his OCD is getting worse . He went to respite earlier this month and since hes been home he has been like this . Staff say he was ok while away . I hope this doesnt happen everytime he goes away as I couldnt cope on my own with no respite . Daycare say hes very anxious and has to be constantly on the move , he asks were I am .

I find myself getting cross at times as you do but it can be very stressful at times .

Im not much help to you but hopefully showing a little empathy helps .