To not just give up?

[Livingtothefull]

I don't know why I am keeping going really....it is a mystery to me:

My adult DS has special needs, both physical and learning disabilities. He is on half term from his college this week. We had arranged for a carer to come in & look after him while we worked.

DH has though tested positive for Covid and has been very ill. That means I have had to care for DS while working full time, as the carer obviously can't come. Now my DS is showing symptoms and I am also not feeling very well.

I am working from home as I can't go into the office as planned, luckily my boss is understanding. But it has stretched me to the limit, it is really hard for me to explain what it is like. I adore my DS but his personal care is really hard and I just feel overwhelmed.

I feel barely sane at the moment. It is hard for me to concentrate on work and I can't do a proper job caring for DS or doing my paid job, I feel so inadequate and guilty.

Has anyone else struggled like this? How did you keep going in the face of no prospect of any respite at all, and really not very much respect from anyone?

That sounds really hard. As you are ill (even a little bit) please take sick leave from work. I know that doesn’t help with everything else but it is one less thing off your plate. Since you have a decent boss I presume you get sick pay?

Thank you @minipie yes I get sick pay. I will see how I feel tomorrow and may consider that. It is really hard to concentrate on work and I feel I am letting everyone down now. Yes DS comes first but I do feel I need to act with integrity at work....at the moment I feel dishonest as I am taking a salary to perform at my best and, if truth be told, performing below par. Not all the time; just now.

OP I believe you have an awful lot on your plate to deal with on a daily basis with very little respite. One extra event occurs and it feels so overwhelming and exhausting.

When was the last time you had a rest? Sometimes we give out so much to others that we can lose ourselves along the way. It's like being a hamster on a wheel.

Please don't beat yourself up, it sounds like your giving it your all. Your drained, mentally and physically. Can you get some extra help? Do you have any close friends that you could go out with for lunch or coffee with? I know you cannot do that currently due to the circumstances, so can I suggest you get out of the house for an hour with a hot drink it's surprising how just being out the house can help.

You really do need a take a break, a weekend away to do absolutely nothing or exactly what you want to do.

Sometimes we have to stop juggling, our hands get tired.

Thank you @Icepinkeskimo yes it has been a while since I have had a rest. DS's needs are complex and demanding, it is just about doable when both of us can share the work but that hasn't been possible while DH has been ill.

I will be planning some treats for us once we are all better....may be able to get out at the weekend though only if DH is well enough to care for DS. He can't ever be left alone

I am trying to work with DS here, it is really hard to concentrate as he is very loud, I am not feeling well & so am being far less productive than usual. I need to stop feeling guilty about that.

@Livingtothefull I recognise you from your posts from a few years ago.
You're being very hard on yourself.
You and your DH made provisions for DS and unfortunately due to covid they have fallen through. It sounds like you might actually have covid yourself if you're not feeling well - have you done a LFT recently?
If you're physically ok to be working the work out what is the absolute minimum you need to do. Then do that and no more.
Could you take tomorrow as annual leave and give yourself a bit of breathing space ?

Also you mentioned lack of respect in your OP. Sounds like your boss is being understanding and DH and DS are ill. Who are you wanting or lacking respect from ?

OP you're ill, you have covid, just be off sick. Why are you still working during this? Don't be a work martyr, go off sick and do what you can. Whenever allowed get the carer in ASAP. You can do this

Thanks very much both. I wrote my original post from a rather melancholy place @rookiemere so the reference to the lack of respect needs heavy qualifying. Yes my boss and workplace are supportive and aware of my situation, though ultimately I have a responsible & fairly senior role and I need to handle it long term.

The lack of respect stems I think mainly from 2 sources: some people close to me (some friends & family) who seem to get vaguely irritated when I mention how tough our situation is, and unwilling to talk about it. We don't really complain in my circles so suppose it feels as if I am burdening them....sometimes though I would just like to be able to let off steam & feel I am being heard.

I also do feel that carers are undervalued in general. During the early days of lockdown it was expected that we would just cope with all the support systems in place being removed. TBH 'Partygate' has upset me more than I expected, the idea that the PM and Govt of all people were having a good time and flouting their own rules during all of this.

And not just family members with caring responsibility are disrespected....I have had conversations with DS carers about how their poor treatment and that they frequently receive only minimum wage. It is not a min wage job (no disrespect at all to other workers - but min wage really isn't appropriate).

Yes I did a test today and it came back negative...though will keep testing just in case. So AFAIK it is just a cold....though yes I will go off sick tomorrow if not well @HereComesTheSum and will get the carer in again once safe.

Are there any support groups for parental carers? Your life sounds so hard and it feels like it might help for you to talk to others in similar situations.

Just checking how you are today OP.
Hope things are going better for you.

Thanks @icepinkeskimo I am OK. My DS had a turn this evening, started emptying cupboards and throwing the contents around the house. He is liable to do this when he is frustrated and in fairness, it has been a rotten half term week for him so I do feel for him. But it is stressful though, trying to stop him going upstairs to trash the bedrooms too. Joking about setting the house alight, swallowing bleach etc. And he would do it too if we didn't watch him like a hawk, absolutely no sense of danger.

We do seek out support @rookiemere because yes there are many other parents in our situation....though no circumstances are precisely the same. It does help to talk to those who understand it.

All being well, my boy will be able to go to his college this week and we can plan a better time for him next weekend.

I will also plan some annual leave this week and try to stop feeling guilty. The guilt feelings still dog me....I think I was brought up to believe I had to make every last effort, anything short of that and I was letting down myself & everyone around me.

Just 'resurrecting' this thread if that is OK, I am having a wobbly time right now.

We are trying to arrange ongoing care for my DS as his college is finishing.....this entails applying for benefits and an hour & a half-long meeting with social services to talk through his needs. The inevitable questions: 'Is there any reason while DS can't go on living at home?' (Answer: because I don't feel we can cope without support and hold on to our very essential jobs, and more importantly, because I don't think it is in his interest to be too reliant on us long term).

I have had to step away from work this morning and call in sick, had a seizure this morning (due to an ongoing condition I am susceptible to these at times of stress). Tried to call the doctor and the earliest appointment I can get is 1 August so that's no good.

I will have to start work soon as I can see the emails piling up on the work inbox, it will only make things harder if I don't get back to work soon. Colleagues all incredibly busy, I feel guilty every time I ask for help. I made a mistake at work a few days ago and some of the emailers today are angry & it's my fault. I am worried everyone at work secretly thinks I am incompetent - feel stress levels rising every time I think about it.

I have other concerns about serious health issues relating to a close family member. My sibling is dealing with most of this & I feel guilty about that....I feel that I just can't take on any more but maybe it's a cop out.

Can't talk to my DH or family (they are all stressed out already). Nobody to talk to; and what would there be to talk about anyway?

@Livingtothefull I'm not sure what to say, but I didn't want your post to go unanswered- which is possibly because it was a resurrection of an old thread.

I do feel for you, life has been so tough for you for a number of years now. It does sound as if residential care for your DS may be the best for everyone, so it's good that you've started the motions for that.

On your work - I suspect you're much better than you give yourself credit for. Perhaps on this occasion you have made a mistake- so what we all make mistakes- just log on tomorrow and deal with the feedback as words on a screen, try not to let it get to you.