Self neglect

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 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.  

Jenny Butterfly said:

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. 

Yes, there is a level at which it's acceptable.

I wonder if you drew back from your son making less interaction if that would help?  It sounds like you are trying everything though and have undoubtedly tried that too.

I wish I had a magic wand that I could make it all better for you as I can hear the angst in your post.  If anything, I know that the degrees of depression and isolation that I have felt do change in intensity.  That is what I tell myself when I think I can't take it anymore. 

It must be very upsetting for you to not have the relationship with your son that you wanted and to want to make it better but having all attempts seem unsuccessful.

There is one positive I see in all that you are going through.  No matter what happens.  You are a very dedicated mother who is trying to communicate her love to her son.  That in itself is precious.  

Jenny Butterfly said:

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. 

Yes, there is a level at which it's acceptable.

I wonder if you drew back from your son making less interaction if that would help?  It sounds like you are trying everything though and have undoubtedly tried that too.

I wish I had a magic wand that I could make it all better for you as I can hear the angst in your post.  If anything, I know that the degrees of depression and isolation that I have felt do change in intensity.  That is what I tell myself when I think I can't take it anymore. 

It must be very upsetting for you to not have the relationship with your son that you wanted and to want to make it better but having all attempts seem unsuccessful.

There is one positive I see in all that you are going through.  No matter what happens.  You are a very dedicated mother who is trying to communicate her love to her son.  That in itself is precious.  

Thanks H.  I'm afraid I feel walled off from my former friends, counselling contacts and supervisors with this situation.  It's as if we inhabit a world apart because I know none of them have faced this kind of situation.  They're also non autistic, as I thought I was until the last few years.  Although I know they're no strangers to suffering (the human condition being what it is), this feels like an unusual type and they can't say, "Oh, when we had this problem, what we did was...", which is what I really want to hear.  Maybe I need to get myself an ND supervisor - that's certainly a possibility.  

I do hear lots about the benefits of joining the autistic community, but as things stand this is only online and I need to learn how to join my fellow autistics and make friends locally.  This is another reason why I felt so disappointed when there were no other autistic parents in the groups I joined.  

I think my counselling training also removes some options for me, because it feels as though I can detect the gears turning in the listener's mind, and I know that, just as I am myself as a parent and as I would feel listening to me, they are out of their depth.  

Hubby is supportive, yes, and I do value that but as the years go by he's becoming more depressed himself so has little to offer - not with any conviction anyway.  

I think that, overall, I just need to know that it's possible to overcome this and return, as a family, to getting more shared pleasure in life.  A cure for my physical health condition would help too, no doubt, and in that case support in most of its forms has started to ring hollow after a couple of decades with no medical breakthroughs.  I had sort of told myself, in order to survive, that joining these groups was only temporary while researchers came up with something.  And they haven't.  And I haven't either.  

It may be that I only have another decade left and I sorely need it to be filled with good family times, love and laughter.  If my parenting has been good, then I need to see evidence of this manifested in our lives.  But unfortunately the correlation doesn't seem to hold and my expectation that is might has proved unfounded.  It helps, yes, but it doesn't resolve.

My wider family.  I'm not sure.  They surely empathise and would do anything within their power.  But finding a solution isn't within their power and I'm left knowing that they are getting on with their lives (including getting on with all those milestones on life to which our access has been denied) while we languish here.  

Sorry to feel so negative.  And thank you for responding, especially when the issues feel so intractable. 

I'm guess this means I'm not quite cried out for the day yet.  And tomorrow will probably feel better.

Jenny Butterfly said:

just that being in a small room 24/7  in a scruffy, mucky state is not what anyone envisages for their child).  

That is totally understandable feeling the way you to with the circumstances that you describe.  I think with the best of intentions other who are not in the constant monotony of it will inadvertently put their foot in it as they do not know the level of support you are trying and have tried to provide to your son to no avail.  Do you have any respite at all? Any space for you? Does your husband give you a hug and cry with you when you are having the harder day? Do you have friends who will just listen and be there? I phone samaritans a lot.  I know they can't solve things and "just" listen but the very fact they are volunteering to do that helps me feel loved and supported.  

Jenny Butterfly said:

I'm not sure how capable I am of parenting in this situation, particularly as I become older and more ill.

You mentioned how capable you are of parenting.  I think you sound like you are a very giving parent and trying your best.  Do you get help and support from friends and family for being ill yourself?

Yes, I do feel dedicated.  There is, however, also an angry, screaming parent inside me and she has to take her feelings elsewhere to work through them (picture me doing Tae Kwondo punches in the garden, then dissolving into tears). 

I'm not sure how capable I am of parenting in this situation, particularly as I become older and more ill.  And also as I inevitably notice other family members of the same age moving out, getting jobs and planning on starting families.  (Not that any of this conventional stuff is compulsory or expected - just that being in a small room 24/7  in a scruffy, mucky state is not what anyone envisages for their child).  

The golden rule seems to be that nothing helps.  Pulling back, occasional nudging, holding space, remaining very gentle and person- centred.  All can be positive but nothing changes.  

Radical acceptance was mentioned by one caseworker and I'm afraid that sent me into punching mode too, thankfully only in my mind's eye.  

Yes, some days feel worse than others, that's true.  Today I need to cry it out before I make myself available to others.