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.

I also think this type of work, cleaning and clearing up shit, is entirely invisible in our society. I was talking with a friend after my husband died and they said 'I had no idea you were dealing with all that' when I mentioned the relentless non-stop washing, cleaning, stripping of the beds, the shit (which was like sticky glue), spraying the anti-urine spray endlessly. It's all hidden, and mostly done by people who don't shout about it and don't want to upset others (perhaps we all should!) Usually women. Usually for very little money.

That's why there should be no trigger warning here, it makes it seem like talking about shit is socially unacceptable, which just pushes those of us who have to deal with it further into the shadows. Those upset by bodily functions (MNHQ know everyone takes a shit every day or two, don't they?) or fascinated by them (poo troll will now have the thread handily advertised) are irrelevant to us who need to be able to discuss the everyday business of care without feeling invisible or stigmatized as unpolite members of society.

We are crap at talking about poo as a society OP, but you are doing an amazing job for your son so just give yourself a break and something nice to eat (maybe not something brown) and carry on.

Ignore the trigger warning @Livingtothefull 🙄 MN is a strange place sometimes.

You sound like a wonderful mum.

Sending love to you and your wonderful boy and I hope very much that you can get some support.

I think you are a mum who loves your child - that much is clear.

You sound amazing and exactly the type of person society should be championing and supporting.

You sound awesome op. And exhausted. Would this type of case help? www.amazon.co.uk/Surom-Kids-Case-iPad-Convertible/dp/B072K1PTRL/ref=asc_df_B072K1PTRL/?tag=googshopuk-21&linkCode=df0&hvadid=310802245808&hvpos=&hvnetw=g&hvrand=14570252535742975174&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1006867&hvtargid=pla-653798823599&psc=1

I've also reported so that HQ can remove the TW, OP.

What is it they say nothing queer as folk? Something like that? I mean who knows what is triggering, if they didn’t like the title don’t click to read.

Op I work in the asn sector with young children. It’s an amazing and highly rewarding job. I love my pupils and they genuinely make me so happy each day. However, I get to return them home at 3pm. I don’t have to deal with personal care all night, morning, weekend. I don’t have a child who doesn’t sleep all night, picks at my wallpaper, throws/breaks furniture. I work in a building that has multiple areas to suit their needs, all the hoists, walk in showers etc that are required. I must say at least once a week, I don’t know how our parents do this 24/7. I honestly take my hat off to anyone who cares for a child with asn. The lack of support, suitable groups, sleep, understanding from those who haven’t experienced it, not to mention the horrified looks from passers by when your child has a melt down. You are doing amazing, you are doing your best and you need some respite, some time for you to relax 💐

Well I was expecting a photo of the code brown incident at the very least to warrant a TW!!
Seriously, are people such shrinking violets that they cannot stand to read about these things in the very ungraphic language used here? Good grief, get back to Victorian times and cover the legs on your furniture!

OP. You are not mediocre.

Those situations are difficult enough to experience on a daily basis and not easy to talk about either. Every day you get through with the family roughly clean, safe, and fed is a victory

No, you’re def not mediocre at all. You’re a human being doing the very best for the son you love, as well as working. In all honesty, I don’t know how you do it.
id also go with the simplified room, Lino floors wherever you can, maybe there are some poo proof inner covers for duvets? You could try Family Fund for support or a family member, professional, or you can nominate yourselves to 52 Lives. Don’t EVER feel bad about doing this, everyone who donates to these organisations wants to see money used, not sitting in a bank account.
I hope you can find suitable respite so you and DH can have a break.

The trigger warning has gone now, many thanks for reporting it.

I put YABU because you are not mediocre, no-one who hasn't cared doesn't know how relentless it is. A good night's sleep can be rare.

I'm pretty sure anyone who has had a toddler knows how different their nappies are from babies , that also applies to toddlers and adults. It's a stressful job and not one you often get thank ed for. Rant away.

You are far from mediocre, you're absolutely amazing!! I'm sorry you're having a rough time at the moment x

You're wonderful

You sound phenomenal.

I was just going to suggest similar. An 'indestructibe' iPad case might be worth a try.

Agree re practical ways to make all of these incidents easier to deal with. Even down to incontinence knickers, we have 'period pants' now so surely there is some innovation that can help minimise the mess? I think these are more for urine, but perhaps worth a look?

www.modibodi.co.uk/products/mens-leak-proof-trunk-light-moderate-black?variant=40340043464758&redirect=disable

Also, OP, can you set aside, as a priority, time for yourself? Even if it's just 15 minutes. If you and your DP could take it in turns to afford each other that bit of time, and protect it, it might be a useful release valve.

Sending you all my best. The world is difficult, sometimes.

Actually these might be more suitable, someone with a stoma reviews them and says they're helpful: www.modibodi.co.uk/collections/mens/products/modibodi-men-trunk-black-ultra

You sound like a wonderful person. Reading this has made me feel so sad that you have do so much caring with such little support.

Thanks for the solidarity @NotAnotherCrisis and likewise to you, it is hugely challenging to deal with this. I hope you get plenty of rl support.

Hi @Livingtothefull. You are absolutely not mediocre, you are amazing. I too care for my severely disabled young adult son, everything you wrote in your OP I've been there too. Unfortunately I can't help with solutions because I know how badly covid impacted on services, I know they were badly underfunded and overstretched anyway and that now they're practically non-existent. I know you're exhausted, I know you need help, I know finding the energy to fight for that help is impossible most of the time.

I hope things improve soon, for you, me and all others in our position.

Also, don't feel remotely bad about people complaining that your thread should have a trigger warning. The realities of life caring for someone who is profoundly disabled have been hidden way too long. I can't believe they came to post how disgusted they were rather than just empathising and understanding. Honestly some people really don't have a clue.

I don't have any practical advice but I just wanted to say that you sound like the most amazing parents. What a lucky young man he is to have you.

You and your husband have my utmost respect. It is people like you who are real heroes (unsung unfortunately).

Thank you all. I am sorry I can't respond to every single person who has posted here....but that doesn't mean I haven't read and appreciated every one.

It's tough being a carer- I am a carer to two adult family members, and it is hard to stay afloat sometimes.

What I would say is take all the support you can find.
I use a carer's support service- it's a charity, but they have been amazing.
I have had free counselling, financial and benefit advice, even a grant for beauty treatments.
It isn't always possible to get down time as a carer, but if you can grab some time then use it to nurture yourself.
Your own physical and emotional well being has to come at the top of the pile.
So even if you have 10 minutes to yourself make it work.
I do daily yoga ( including 5 yoga classes a week) I meditate every day, I have a good skin care routine and a good collection of teas.
It can be helpful to meet with other carers, to share the emotional burden and get tips on how to stay sane.
I feel more empowered to cope than I did 2 or 3 years ago, even though my circumstances have not changed.
Above all treat yourself kindly.

HOw the hell you manage all that and work I have no idea. Massive respect from me. You are the opposite of mediocre and are someone I look a long way up to.