Self neglect

Thanks PersonAnon. We do what we can (been through rounds of self help, various interests to distract or entertain, counselling, counselling training, supportive, relaxing practices in the areas of yoga, chi kung, meditation and visualisation, plus more besides).  But always, always, we come back to these core issues and I don't think our own mental health is likely to be restored until they change.  If they can't change then I feel very afraid about the future.  

Yes, the pandemic has certainly added a top dressing of additional misery and worry.  Of course, our son won't engage with services to the extent of having a vaccine either.  

But really, as a family, we've felt locked down for around 10 years.  This is no longer the kind of house where people can just be invited round, irrespective of Covid considerations.  And this looks set to continue no matter what the virus does.  

One thought that does occur to me is this: are you looking after yourselves?  Your son is clearly dependant on the family, at the moment, and it's no good to him if you burn out.  

As others have said I'm cautious of suggesting something that you'll have thought through many times and don't want to appear patronising so apologies if the comment is simply annoying.

For most of my working life I was a bit hard-charging and I was the last person on earth to believe in the value of "mumbo jumbo" but now, when it all gets a bit much, I fight like hell for an hour to do Pilates, or meditation, or both.  I've learned a lot about Pilates and can just get into it if I have some space; I found it hard to get to grips with, but it has actually been transformational in terms of my coping strategies.  I'm newer to meditation but I can already see the benefits.

But whatever it is that you do, for yourself, I hope you're finding some space to do s-o-m-e-t-h-i-n-g.   

Thanks H.  The only thing he engages with is his computer and online gaming.  We've been through rounds of trying to accommodate any sensory needs (lighting, different shower heads, different products of his choosing etc) but, even whilst talking about such things (which these days is minimal due to the lack of engagement with us) there's a sense of him giving satisficing responses so's we'll round up and go away asap.  I think any conversations feel uncomfortable for him and raise his anxiety levels so all he wants to do is escape.  This means he agrees or says, for example, he wants organic, chocolate scented products or fluffier towels, which we then get but nothing changes.  

When he did talk to mental health services, this happened there too - the strategy seemed to be to give minimal but satisficing responses until the professional (be it CPN, counsellor, consultant, whoever) eventually went away.  And, given that they have a huge caseload, they always do.  

I'm not sure about the back burner for hygiene.  Lapses of a few days to maybe a couple of weeks, depending upon needs and mental state, seem reasonable to me.  A situation lasting months and years does not.  

Our extractor fan in the main bathroom broke last year and I deliberately left it that way because, well, the assumption that every time people use the bathroom the fan must come on has irritated me for years.  It's funny really - I'm thinking that, well, barring the most atrocious smells, it's just not needed.  And we can always freshen the bathroom by opening a window.  I'm glad you mentioned it though, because it's reassuring to feel I'm not the only one with this concern. 

Our son also has his own little ensuite though, so it could be adapted to his needs, if only I could gauge what they are.  If he does speak to me it's in minimal, monosyllabic, clipped language to the effect that, "It's OK", or "I'm alright".  Given his lifestyle though, I'm not convinced.  

I hear that. 

This cursed pandemic just makes everything worse, because of the isolation it causes.  Hopefully, this too will pass, or at least we'll be able to manage it better. 

In hard situations, all we can do is what we can do. This platform can be a very supportive place to be, for a while; it won't offer simple solutions to difficult problems but there'll be people who've been where you are, or somewhere very similar, and have an understanding of your situation on an intuitive level.  

Thanks Chris.  I sometimes struggle as well, but again for short periods, after which I start to buoy up again.  But here it's been going on for years.  The GP is aware but basically just offers a few sympathetic words, no advice or signposting towards actual support.  And even local autism organisations can't help.  

I think that, in the case where individuals are able and willing to reach out for themselves, there are more possibilities, even if services very often don't live up to their promises (like your social prescriber).  But in this case there is zero chance of our son reaching out.  ️

It feels as though we need a family guide to burnout, withdrawal and self care because, even while he isolates himself from everything, there are repercussions within the family and we simply don't know what on earth to do.  

JennyButterfly,

I am so sorry to hear how hard everything is for you.  It sounds like you are trying your best with everything and finding brick walls wherever you try to get help.  I hope that you are able to take the time that you need to destress and recoup.

I hear what you are saying about the personal hygiene and why this is difficult for you as a parent who loves their son even though he's adult.  I think as long as he is eating and drinking and engaging in some things, the hygiene can be put on the back burner.  A member of my family and I had a discussion about hygiene as they feel people should be allowed to smell natural and everyone else smells too chemically.   I understand this perspective as I find showering makes me quite itchy despite my love of feeling clean.  I find washing with a cloth in the wash hand basin easier when my skin is too sensitive.  Is there an extractor fan in your bathroom which could be a noise trigger?  That's something I dislike about my bathroom.  Are there certain smells/music that he likes that he could put on when washing to make it a nicer experience?  I'm sure you all have tried this and more and it may or may not be helpful.  I wanted to share some of my ideas as I can see how you must really be in turmoil with everything.

I hope something changes for the good and you all find a way through this time.

Hugs. 

H :-)

P.S. I don't want to above suggestions to sound patronising when you have known your son up until adulthood and done everything in your power to help. I understand how lonely that feeling is because my Dad was bipolar and our family felt very much alone in trying to deal with it.  I really hope someone comes along who can offer that support and guidance that you so desperately need.

Thanks PersonAnon.  We do try to maintain a low demand, low arousal, calm, loving environment.  And yet, as the situation persists over the years, it feels very much as though we are falling short.  Or else the situation is so intractable that nothing and no one can help, a possibility which feels just too hard to face.  

I sometimes struggle, I've been in situations where, while I've put clothes on, I haven't had a shower for a couple of days. Sometimes it's just a struggle, maybe not to motivate yourself, but even just to see the point in doing so. Especially if you have had negative experiences.

I don't really know what the solution is. It comes and goes for me, very mood dependant. I've been lucky in that, while the services I have used have been rather miss than hit. My GP has been a total rock of support. He's been my GP since we came back from Germany in 1997. I've been wondering a lot recently what I will do when he eventually retires, hopefully not too soon, but yeh. He's got 15 years of understanding.

On the other hand, we have a community mental health team with a social prescriber who offered to help me with a housing apication, kept telling me she'd do so for 4 months of calls every 2 weeks... then decided she wouldn't. And then just didn't bother phoning when she was meant to anymore. Despite her making appointments with me... I then made appointments myself with the admin team 3 times. But the social prescriber didn't bother calling at all, so I gave up.

That situation is so far from mine that I can't offer practical advice.  Far from self neglect, I am pretty much the opposite. I'm making the comment to help highlight your post and bring it to the attention of others on this forum who are often able to offer excellent practical suggestions in what appear to be incredibly difficult situations. 

But I wish you all the best and I will say this:  no one who could write a post like that is failing in their responsibilities and duties.  On the basis of this I would say the biggest thing he has going for him is caring, loving parents.