Worrying that I am going to spiral down - please help me keep perspective

[Livingtothefull]

I am just finding life challenging as I sometimes do on hard days (like today):

I have a full time professional job and have been working from home today. My adult DS has severe physical and learning disabilities, his usual carer has unfortunately been sick today so I am having to care for him whilst working. Just to be clear: I am not asking for advice on respite care or support/flexibility at work, these are (mostly) in hand so I have mostly found the best possible balance.

This thread is about me feeling downtrodden & scared about spiralling into depression. DS care is relentless; I love him but not the work that goes with him iyswim. I have had to look after his 'personal care' as usual - a euphemism if ever there was one. I once posted about what it actually entailed on this site and MN put on a trigger warning on the thread - so I am not going to elaborate here. Suffice it to say it is extremely physically challenging and unpleasant.

It is very isolating. Luckily my DH is every bit as committed to DS care as I am - but he has significant health problems. My work is a kind of management role where I am frequently dealing with difficult and sensitive situations, so of course I have to switch off my own feelings and support people although it is sometimes triggering.

Today I am feeling so downtrodden & worthless, like a drudge. None of my wider family have been in touch recently - not blaming them, they are busy too. But a few weeks ago they asked me to attend an event....once I researched it I realised it wasn't accessible so I had to decline. So maybe they think I don't want to see them, they haven't been in touch since. I don't think people realise sometimes, what a huge ask it is to attend events with DS - again I am not blaming them.

I feel a bit of a failure today, it all feels hopeless. I have done well enough in my career but it really pales beside some siblings who have been extremely successful I am worrying that family are secretly looking down on me - nobody has said anything to me but I am feeling paranoid. Please help me get some perspective on this.

I feel for you and perhaps have a (very small amount) of understanding.
I have two family members who have developed dementia in the last few years. One I live with and care for full time, another nearby who I keep an eye on, organise things for. Sibling and their spouse do whatever they can (both work full-time.) I also manage my own long term mental illness.

Your and your husband's hands are well and truly full, and I wouldn't pretend to "know"the feelings around your much loved son living with disability.

The nature of my own problems causes my moods and coping to be unbalanced on an almost daily basis, and caring just adds to that. So what you have to say sounds very familiar.

When I am feeling OK I am able to give myself credit for definitely "working", hard, and reflecting on how important this is. Also seeing my loved ones happy and secure is priceless.

I hope you can remind yourself of this (and more.) No-one is looking down on you, because you are doing your utmost, working so hard, for the best for your son and family.
Perhaps a visit to your GP would be helpful? Whether or not medication would be helpful, it might be a good idea to discuss how you are feeling.

Wishing you the very best xx

Thank you so much @Boyce . It is very hard yes to undertake caring responsibilities and balance these against one's own mental health. I mostly cope and pride myself on coping - but all of a sudden (like today) I feel really spent. Even when I feel strong I know how quickly things can change.

I hope you are right that nobody is looking down on me. The trouble is that when there is no positive feedback or praise coming in my direction I don't really know what I want to think, I feel my judgment is in a vacuum. A little family history - I was always thought of as the less capable one among my siblings (my parents are no longer around) and I think it is hard to turn around entrenched family dynamics. There is always some unspoken condescension there as I perceive it.

Yes you are right that I should approach my GP and investigate more help. I am on medication for stress but maybe it needs tweaking. I have tried counselling/talking therapy as well - but tbh some of what we have to deal with is shellshocking enough and I am not sure talking about it afterwards is helpful as none of these problems are going away.

Anyway, this evening having (as we thought) completed DS's personal care, we are now having to repeat it all before bed. Deja vu - or I should say deja poo. I defy anyone to repeatedly clean this up on top of a demanding FT job and not feel like a skivvy at some level.

I can’t begin to imagine your life but you and your DH deserve some respite. Can you investigate what services your son may be eligible for so you get a break . Remember to care you first need to look after yourself 💐

Thanks @Ohnonotrain . We try to get respite when we can though there seems to be much less in the way of support than there was a few years ago. I don't know if this is due to austerity, or DS entering adult services, or both.

I need to get breaks you are right, and it is so easy to lose track of that and the need to prioritise myself. Breaks and treats - will plan them in over Christmas particularly. I need them to remind myself I am a person, not just a machine that 'does stuff'.

Usually when I meet friends & family for fun things I have to arrange it. If I don't they may suggest things it is hard for DS to access, they don't realise what an ask certain things can be. DS behaviour is challenging in all kinds of ways, I can feel the disapproval, eyebrows being raised & eyes rolled. I am not sure many of them really want to see him & that makes me so so sad.

There was a big family event a few months ago that 'everyone' in the family was going to - we didn't get an invitation. The worst was that other family members talked about it, when I said I was not sure if we were going (because we hadn't had an invitation as everyone else had by then ) they got really irate with me and said 'But of course you are going, we all are!'

I am really sorry for the negative tone of my posts. I am just telling it like it is here - it is just hard. But really am taking on board the advice received and you are entirely right, & I do appreciate it.

My parents used to compare me unfavourably to my siblings so very hard to undo that conditioning. I wish I could feel proud of what I am doing but it is hard. I have always been a square peg - and having my DS has made me squarer than ever, I don't seem to fit in.

I wish I could find the magic 'self esteem' tree.

Don't apologise for sounding negative, OP. You don't actually, you just sound realistic about an incredibly hard and pressurised situation.

As you've mentioned childhood experiences colliding with your current stresses, this book might be helpful. Appreciate it could be hard to find time to read:

https://www.amazon.co.uk/Reality-Slap-2nd-survive-thrive/dp/1472146360/ref=ascdff1472146360?mcid=51d22b826ee63df5a59a9fadf8bae32d&th=1&psc=1&tag=googshopuk-21&linkCode=df0&hvadid=696491569630&hvpos=&hvnetw=g&hvrand=14974496064497127829&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1006886&hvtargid=pla-1214728966732&psc=1&gadsource=1

There is a lot of cynical emotional ordure I could pour out on this thread....but I don't want to do so. I feel all the fight is being knocked out of me. I don't feel proud of feeling like this - but then I don't feel proud of anything about myself right now. I am just an inadequate, imperfect worker and carer for DS.

I just wish I could find and keep my pride, and not feel on a step lower than those around me. For the sake of DS (so I can be his best advocate) I want that. I don't know where to start

It's also available as an Audiobook. The author really struggled with his own son's diagnosis, not remotely a comparable situation, but it might be of help.

Thanks for that @TryingAgainAgainAgain , I have followed up on that & yes I always make time to read.

You don’t sound negative, you sound exhausted and I can’t even begin to imagine how tough life must be on a daily basis. I have nothing but admiration for all the parents in similar situations. Nothing helpful to offer but just wanted to say you’re allowed to feel sad x

Thank you so much @Mydogscoolerthanyourdog and your post is helpful, to know that I am not unduly negative & it is OK to feel the way I do. It is just so relentlessly hard.

It’s very normal to have these days even in circumstances much easier than yours so be kind to yourself x

Wow.

I was seriously impressed with you caring for an adult who is so severely disabled...

And then you added you had a full time job....

Where you've been so successful that you are trusted to listen, counsel and manage others through difficult issues....

You are incredible!!!!!!

Thank you @FusionChefGeoff I really appreciate your kind words. It helps a lot when I am really trying not to feel ground down.

@Livingtothefull you have struck another chord with me. Whilst loved by my family, the not being as capable was the label I got as well! This still persists In some ways despite me having been a single parent and having a very responsible job for years. I recognise what you say about talking therapy not taking away the problems. I've been in therapy since a close bereavement , as time has passed this issue has been successfully challenged for me. Trouble is, the hard work of changing family attitudes!

It is very difficult to change that family dynamic @Boyce , I would say it is just about impossible. When nonetheless loving relationships, which I don't want to lose, have been knitted around that perception over decades - which impacts only on the family member perceived as 'less capable' who is therefore the only one consciously aware of what is going on - how do you even start to unpick that? The perceived benefits of trying to do it would have to greatly outweigh the downsides of staying put.

In my case there isn't any overt behaviour that I could legitimately challenge. It is very subtle; the bemusement that anything I say is greeted with, the almost-missed side eyes. The condescension apples by extension to my own family including, sad to say, my DS.

Which is why I am writing on here rather than attempting to communicate to loved ones. My words don't seem to be of much value there.

@Livingtothefull it sounds like you're feeling so low, and can't see at the moment how much you are offering in so many ways. :( it's a horrible feeling and I hope you can find a way forward. I'm only finding mine late-ish in life. 🌹

@Livingtothefull poor you, you’re juggling a lot. I know easier said than done but is
there any way you can arrange to take some annual leave and arrange for your son to be cared for without you for a few days. Best wishes

Thank you. I need to take on board the advice that I should take care of myself; it is so easy to lose sight of that with the day to day responsibilities going on. I have planned a few leave days (whilst DS is being cared for elsewhere) & will spend at least some of that time relaxing or doing fun things. I also have time off at Christmas so will try to have down time then - DS permitting of course!

It is challenging though as I have another sick/vulnerable close relative; I am conscious of having neglected them recently as I have been sick myself & unable to visit. So will have to spend some of the time visiting them.

Perhaps this thread could work as a place for you to track your progress in making time for yourself and keep a conversation going about your life?

Thank you @TryingAgainAgainAgain that could be very helpful.