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.

You are not mediocre, you're a bloody champion. Caring for your disabled son must feel like endless grind with nothing left over for you. Unwanted advice: pick a thing to do/get involved in, which is yours alone. Maybe there's a hobby you used to do, or an interest in something which you used to be well-informed about and enjoy discussing. Whatever it is, start a "me project" and encourage your husband to do the same, so one of you can be on caring duty while the other has some time for that.
You will probably feel a bit more like you are achieving when you've got something which is just for you.
Having siad that, caring for your son the way you do is an huge achievement, even if you don't always see it that way. And it's so sad that we live in a society which takes that caring very miuch for granted.

Dear OP - you deserve so much more support. Your life sounds very very hard. Grinding on and on and never getting much in the way of help by the sounds of things. Could you look into some sort of part-time respite care for your DS? Would that be an option?

I completely agree with the what you write about M&H - what have they done exactly? Most of the elite of the world like to hand out gongs to each other it seems, with never having really touched the coal face, the true reality of anything difficult or hard. Not like what you're going through.

I hope the poonamis (good name!) calm down and you don't get one for quite a while now! Fingers crossed for you and for some kind of breather long-term as well.

I hate it when people say do something for yourself, find a hobby etc - because often it shows that they just don't understand the exhaustion that comes with looking after someone that has full-time care needs.

it's well-intentioned - but it shows they don't really understand the grind, the sheer endless grind of looking after someone.

If we had time (or I should phrase that as me) I'd find a hobby and stick to it. But usually the amount of stress you're going through means that even if you did have the time, your mental health is shot to pieces so you can't muster up the excitement or energy for a hobby like you used to. It all feels a bit pointless against the wider backdrop of horror of your daily life.

This has put things in perspective for me today. I have no useful advice. But sending you all my love and admiration. Hoping you have more joy and less hardship.

You're having to deal with a lot of shit....literally.

Have you tried kylie sheets on the bed? It saves washing the whole lot of bedding.

Could you make a referral to the local council for an Occupational Therapy assessment to support a walk in shower through a Disabled Facilities Grant?

Definitely take up the respite care. A Social Worker at the council will be able to assist with vouchers for this.

and from experience there is nothing worse than pubic hair coated shit either! You're doing an amazing job and its ok to have a moan now and again. Please don't ever think less of yourself

Yes my mental health has suffered through all this @BleuNoir, I have posted about this elsewhere. One thing I find hard to cope with is when people tell me (which they have, a lot) that DS has been sent to me for a reason ie God singled me out because I am uniquely strong enough to take on the challenge.

There is a sting in the tail of this imo.....if I am such an exceptional person, they don't need to worry about me as they 'know' I can cope. It does feel very odd & alienating.

When in reality I am only doing what most parents would do when faced with these circumstances. I am fighting my way through my own life, dealing with it as best as I can but nothing I do can ever be truly good enough.

Yes the self congratulation among the elite is sickening, I have never met anyone who doesn't agree so why do they not stop doing it? It isn't just M&H; I'm afraid I just laugh when William & Kate talk about mental health. I am sure they are well intentioned in wanting to raise awareness - but they just have no authority to talk about this and no experience of most the challenges people are facing - so I don't take them seriously. I would rather hear from experts in the field thank you, as well as people overcoming real difficulties.

That's a good point B1rd about the pubic hair. It makes dealing with it so much more complicated.

We have the washing machine on again as we speak...another 'poonami' (that's a good term, may help to avoid re-triggering anyone). DS decided to use his quilt as toilet roll today.

If someone could stoop so low as to complain about your post, there's something seriously wrong with them!! How dare someone complain about what is the reality of life for you? Complete empathy bypass.

You are far from mediocre. Thank you for reminding people of the slog carers have to look after their loved ones.

As was suggested upthread, do you think assisted living could be the way forward? You deserve a break from the relentless responsibility and physicality of caring for your lovely son x

It drives me mad that there is no category for "Born like this, is never going to get better" The woman I key worked had a visit from someone coming to interview her to check whether she was still as disabled as she had been before. I offered to answer questions for my client, but the woman refused, saying she needed to interview her in person, and in private. I asked her to return after Day Centre, and put my client in her bedroom so they could have some privacy. When the woman returned I took her to the room, introduced her to my non-verbal, client, then left the room. The woman came and found me after a couple of minutes, and very sheepishly asked me to come and help. It was a total waste of time and money.

Indeed @Chooksnroses it is ridiculous the hoops we have to go through. I do understand that there needs to be a stringent process to check benefit entitlements - but why do we have to go through this when DS disabilities are comprehensively documented throughout his life? It is such a waste of everyone's time.

DS got an invite letter recently to attend the JobCentre, to assess his ability to work. We had to go with him as he isn't able to access on his own and he couldn't understand the questions...it still distressed him though.

I agree that many people (not DS) are potentially able to work with the right adjustments in place. What this Government does is put the onus on employers to make adjustments - no cost to them and they get to feel good about themselves by 'championing' the disabled.

But where is the infrastructure to support disabled people in attending work through fully accessible public transport etc? There are plenty of horror stories about the difficult and demeaning issues that people have faced.

One thing I do know is that contrary to the opinions of many, there are very few 'scroungers' faking disabilities to get benefits - because the system is so stringent. I am much more worried about the people who lose out on benefits they should be getting. There is a school of thought (which I belong to) that the odd benefit fraudster is a price worth paying for ensuring that overall everyone gets the support they need.

We always used to shower people who this happened with rather than use wipes - however with someone who can't stand independently at all this is potentially more difficult than cleaning him lying down of course. If he can stand for a few minutes holding on to a rail it would be really helpful for you if you could get your bathroom adapted to a wet-room with stable hand rails and a pull down seat (perhaps using the grants people have mentioned - I'm not UK so don't know how this works exactly). It makes poonamis much easier to sort out.

You are the total opposite of mediocre; you are mighty! Even more so when you’re exhausted and at your wits end and really don’t feel it.
Of course you didn’t and wouldn’t choose this and I totally understand your frustration with the people who have told you that you have been given this challenge because you are so good at it. When people say things like that to try to be positive, it just feels as though they don’t understand what it’s really like or that it somehow doesn’t count because you’re so strong. It’s still blood, sweat and tears (along with every other body fluid!).
Your love for your DS shines through but your everyday life is very hard and I take my hat off to you. People like you are truly heroic and deserve huge respect. ❤️💐☕️

Bloody hell OP. No wonder you're feeling the stress.

Superwoman is the only word that springs to mind after your description of just a snapshot of todays events.

And anybody is that uses the ostensibly is anything other than mediocre (I needed to look it up - I am mediocre )

"I'm afraid I just laugh when William & Kate talk about mental health. I am sure they are well intentioned in wanting to raise awareness - but they just have no authority to talk about this and no experience of most the challenges people are facing - so I don't take them seriously. I would rather hear from experts in the field thank you, as well as people overcoming real difficulties."

I can't say I agree with your perspective on this OP. William lost his mum at a young age in quite tragic circumstances and then was forced to grieve in the public eye and parade behind her coffin. I'd say that gives him quite an insight into how mentally challenging life can be. All the resources in the world wouldn't make up for what he's been through.

Mental health difficulties don't discriminate. Being wealthy just means you don't have the added stress of worrying about finances too. It doesn't mean you're protected against mental illness. I remember years ago a big-name footballer was talking about his battle with depression. People were scoffing at the possibility he could be depressed because he was earning millions. Mental health problems come in all shapes and sizes and aren't the sole province of the skint.

Surely wealthy people like William/Catherine setting up and supporting mental health charities is a good thing? Removes stigma, gets people talking and channels funds into mental health charities.

And I say this as someone who is perennially skint, with a profoundly disabled DS, a disabled DD, and a whole bucketful of my own MH battles.

I do understand where you are coming from @ExhaustedFlamingo , have taken what you have said on board. I know that being wealthy and privileged doesn't protect people from troubles and that it must have been hard for William to have lost his DM at such a long age and to have to grieve so publicly.

I don't intend to attack W&K personally at all.....just to point out that their huge privilege insulates them from many of the stresses that most of us face. Financial stresses are actually very real to many and seriously exacerbate the troubles they have; yes of course people have mental health challenges regardless, but when you know you have to keep a roof over your head and that of dependents and that you could go under if you don't, it hugely intensifies the pressure people are put under; that is just the reality.

I am sure W&K mean well. But imo their privilege cuts them off from us as much as it does us from them, and ensures that however good their intentions they are always destined to be part of the problem rather than part of the solution. I still need convincing that overall they are a force for good.

Of course any effort to support the mentally ill is welcomed. However I am not convinced of the tangible benefits of their efforts. It looks too much to me like a Palace PR campaign whose primary purpose is to make them look good and feel useful. I always support PW when he and PH just talk about the loss of their mother and how it affected them...of course they are entitled/encouraged to do that. But it is when he starts talking about mental health as if he is an authority on the subject - sweeping statements such as 'we all face challenges' with mental health - that he loses me.

And finally....PH had the same loss as his brother and at an even younger age, but as we know it hasn't stopped many people criticising and vilifying him. So maybe the talk about mental health hasn't been all that effective in raising awareness. I know I have been guilty of mentioning PH in a negative light above - but none of this is personal at all, it is purely about how privilege removes the possibility of real empathy and ensures that their efforts look like hollow PR and are worthless.

I am sorry you have your own mental health troubles and wish you, your DD and DS all the best.

You are an amazing woman and mother! Hats off to you and DH. I’m sure you are respected and admired by all who know you and LOVED by DS.

In retrospect I think I should have made it clearer in my previous post that W&K are as entitled and as worthy of being listened to as anyone else when talking about their own personal difficulties. In that and only that capacity they are worth listening to.....any other support they choose to give (without a lot of song & dance or self-aggrandisement) is also welcome.

Again, thank you all so much for your support.