Am I mediocre?

[Livingtothefull]

Sitting up late of an evening as I often do:

My disabled DS has kept us busy today on what is ostensibly our day off. It has been a stressful week, I haven't been well (stress related) and DH has just been working flat out.

DS has had a bad cold so we put him to bed and he slept for a couple of hours. Then he woke up and wanted to come downstairs.

I could tell by the smell that he needed cleaning, and indeed he did. Cleaning an incontinent adult is not like cleaning a baby; they produce so much more that needs cleaning. 20 minutes, two bin bags and three packs of wipes later I had finally accomplished it.

30 mins later - more shit. This time it was DH's turn, at least there are 2 of us to deal with it. One set of pyjamas and an entire set of bedclothes needing washing.

Whilst stripping the bed we realised that he had left a trail of shit all the way down the carpeted stairs (he can't walk so has to bottom shuffle down). So lots of shampooing and scrubbing needed. This is supposed to be our time off?

I dearly love my DS. But I sure as hell don't love what comes out of him. Does that make me a terrible person, less than saintly?

After DS had gone to bed it transpired that he had broken his IPad again. We have had it repaired twice and just can't afford to keep getting it done....but he relies on it for much of his entertainment at home, it gives him great joy. What to do?

Many people like to feel that we are destined for great things and scorn mediocrity. I am no exception; but I don't know how I am supposed to rise above this sort of life? After all, you can't get much more mediocre than shit.

Wow. What you just posted makes you the least mediocre person ever. You are incredible. Do you ever get a break time for just you?

You are caring for an adult disabled child, who requires personal care.

you are anything but mediocre.

Im sorry it’s so hard. And it’s perfectly reasonable to want more from life. I’m afraid I don’t have any answers, I just didn’t want to read and run

I think everything you do for your son is the very opposite of mediocre.

People think great things are always golden, bright and sparkly but the achievement of greatness is only accomplished through a consistent hard slog, which is why few people ever get there.

You might not win a Nobel prize, pulitzer or Oscar for it, but what you do is definitely not mediocre.

You are the opposite of mediocre

as a retired nurse, I can honestly say that these “code brown” events would be simplified in my fantasy. I know it might be unrealistic for you; flooring would be industrial lino, bed clothing and bedding adapted for ease. This fantasy includes walk in shower with an overhead lift and washer driers that can tolerate the bigger loads.
because going forward this isn’t sustainable.
I wish I could help with more than just this concept.

You are not mediocre...you are exhausted! If there is respite or any other help available please use all of it...take every bit of help available to you x

You are anything but mediocre. You are to be admired, your son is blessed to have you.im with a son who is in his early teens,profoundly disabled, im right there with you in solidarity, have also just changed him while taking another kick in my ribs and face. Our day will come,i believe this selfless dedication and care will be rewarded one day. Much love, stay strong you got thisxxx

You are absolutely amazing.

You are not at all mediocre. Carers fulfill an important role. That's the turn your life took and you have risen to the occasion. Not at all mediocre.

No, you're not mediocre.

You are the lifeblood of what keeps your son and family going, And therefore all
of us as a society by your unwavering care.

Bloody wow from me. Mediocre? No. Not by a long mile. I see mediocre in the upper echelons of government and celebrity culture and football politics.

But not from you. Ever.

I'm also a nurse, and would totally agree with this post. You need to simplify things, so that these events don't take over your time . Best wishes - you are doing something which to most people would be just too much.

I was not sure how to vote but i voted yabu as i am sure as a person you are not mediocre.

I do understand why you feel that way. I am also a parent carer and i think i was drawn to your post not knowing the actual content due to my feelings about my own life and situation.

I assume that, like us, any support services youve ever fought for and got were decimated by the pandemic and never restored or there was never anything in place in the first place.

I hold on to hope that things will change for all if us living this life.

How does a parent carer who has very little earning power due to caring role pay for such things in a cost of greed crisis? Carers allowance barely covers groceries these days.

What a profound and deeply sad post. You and your husband are saints. I've no idea how people keep going. It's inspirational. Not mediocre. The system needs to offer so much more support for families like yours. I've nothing else to say apart from my deepest respect xx

Thank you so so much. It means a lot to read this as I don't hear it very much at all irl. I wrote my post last night in a moment of bitterness; but it is hard to bear all this, sometimes I really struggle. Tomorrow I have to work and put on a professional face, if colleagues ask what I did at the weekend what do I say?

I understand at an intellectual level that I (like every other person) have value, & that I should feel proud of myself for handling all this. Yet it is so easy to lose sight of it when dealing with these grinding things that I would never ever choose to deal with. It is so easy to feel dragged down along with them.

Latest thing today is a 'tissue issue'. DS has a cold, DH left a big box of tissues (new, I bought them yesterday) by his bedside for him. Of course he has only emptied out the entire box and thrown the tissues all around the room for us to clear up.

You are far from mediocre. You are amazing.

We do get some support for him, however I have posted recently on another thread about the difficulties of claiming benefits for DS eg having to document his health condition for the millionth time in his lifetime, despite his having a lifelong profound disability which is documented as such on his medical records. Nothing is ever going to change for him, so why do we continually have to revisit this?

Both DH and I work although DS situation has undoubtedly affected our earning power.

Of course you're not mediocre, any more than almost everyone is. Few of us are going to change the world in reality. Most people have "quiet" domestic weekends - you have more to deal with than most but that in no way makes you mediocre, in fact it makes you less "pointless" than some people might sometimes feel they are.

On the other hand I have worked with adults similar to your son in a residential setting and wonder if you and he might slowly like to think about him moving out. It's normal for adults to move out of the parental home at some point and often a positive experience for the adult with support needs as well as the parents. There's a lot to be said for making the move before you as parents are no longer physically able to meet his needs, as you can take your time choosing the right setting and settling him in, bringing him to visit you eow or visiting him and taking him out every weekend but not bringing him to stay the night often, whatever works for all of you. It's not "putting him in a home" but helping him have a closer to normal transition to the adult phase of his life.

Something to think about. It can be the right thing to do, and absolutely not selfish.

This post has evidently been triggering for some people, I feel really ashamed & sorry.

You are the kind of person who should be valued and recognised by society.

You are very much not mediocre, but I get why things just feel like a never ending slog. You are not a bad person for feeling this way at all!

Apologies if you've already tried this, but can you get a heavy duty case for the iPad? That would be one small thing.

This makes me feel so sad. You’re amazing.

You really shouldn't. 💐

You are right @PorridgewithQuark and there will be a day that we will not be able to do all this any more; so HIS interests we are working a long term solution so that he is not dependent on us for everything. This will involve some residential respite care.

We are lucky that he is extrovert and sociable (nothing wrong with people who aren't - just that he has so much to battle already that I wouldn't want him to have to battle social anxiety too). It hasn't come across in this post before but DS is an incredibly lovely, happy boy and a joy to have around. This isn't about him - just about the work that goes with him.

Have I really triggered some people with this post? I am sure it is not the intention - but it does make me concerned that some don't want to know the harsh reality of caring for a profoundly disabled person. 'Caring' is a euphemism for dealing with many distasteful things.