To find today the hardest working day I have ever had in my working life?

[Livingtothefull]

I have a professional role and in the current situation I am working from home. DH is a key worker so travelling to work during the day.

DH is severely disabled both mentally and physically. He usually goes to a special needs college but in the current situation of course it is closed. So I am having to care for him at home whilst working. Normally we would have carers in while we work but of course that isn't an option right now.

Today I had a massive deadline for a project and really thought I would go mad with the stress of getting it done. DS was upset at my being preoccupied, decided to try to distract me by threatening to call 999. So found myself working on the project and trying to write coherently and professionally in between trying to wrest the phone from him.

Luckily my workplace are supportive but I still feel this won't be sustainable for very long.

[Livingtothefull]

Yes I feel also that this situation is not sustainable.....yet I thought that weeks ago and here I am, still dealing with it.

That's a good idea CoCoCorona, or even one of our usual carers could keep him occupied over phone/Facetime for an hour or two. We had a call from DS social worker a couple of weeks ago and explained her situation but she didn't mention anything else we would be entitled to.

[CoCoCorona]

Oh dear that sounds really tough. We were in a similar situation for 5/6 weeks after lockdown when carers didn’t want to come in for an elderly disabled relative.

Do your hospital provide some kind of caring service that you could use whilst you wait for them to come back? Thats what we used, but the only downside it was someone different every time. Could you contact social services and see what they suggest?

[Canuckduck]

I feel for you, you are in an impossible situation. We’re trying to work from home with two high pressure roles (for completely different reasons). Our children have been off school since March 13th. I am just about at breaking point with it all and a return to school / childcare is looking unlikely here until September. It’s not sustainable.

[Patsypie]

What happened to your DH? Accident?

[whatsthepointinwasps]

I know at the moment you are using the ‘direct payment’ option and employing your own carers but I am pretty certain that you can and will get support through social services at the moment as your usual care is unavailable. Even if your son does not have a social worker you can ring the access/duty worker so your local council to discuss what’s needed. This is how it works in Scotland for adults with care needs, should be similar elsewhere.

[Butterymuffin]

No advice but that sounds massively stressful OP and I'm sorry you had that awful day. Not what any of you deserved.

[Sharkyfan]

Sounds so tough
Appreciate it’s not that simple in terms of needing familiar people, but care agencies are absolutely working. (I work in adult social care)
I feel sad that the effect of closure of day centres etc for people caring for relatives with disabilities or conditions like dementia, is not getting the same attention or coverage as the effect of closure of schools. In many cases it will be having more of an effect.

[Clearoutre]

Livingtothefull you are amazing - don’t downplay how much you’re dealing with, it sounds tough and exhausting.

Just a suggestion - would your DS’s carers be able/willing to spend a little time with your son on a video call? Just to chat and may be ask what college work he’s done etc? It might help seeing a familiar face & ease things a little?

[Livingtothefull]

Thank you so much. What more can I say?

Yes I will arrange good times at the weekend....think that is important for all of us. We have a number of carers we know who have worked with DS in the past so know his needs. They are staying away at the moment, I don't blame them at all & would do the same in their shoes.

One day this will be over, will keep hanging on till then like many of us.

[Justgorgeous]

I don’t have anything constructive to add but just want to say you sound bloody amazing and I hope you can manage some time for you over the weekend. ⭐️

[hatgirl]

Keep hanging on. Has his college said what their plans are yet?

You can always contact the local authority if things get too difficult. We have a budget to fund additional Covid 19 requests, it won't work miracles but it can give you a bit of cash to pay someone else to help if you have someone available to do it.

[Livingtothefull]

Hallo....it took me a little while to come back, it has become extremely busy.

Thank you for checking this out NotMeNoNo. It is good to know that. I would probably be offered furlough if I begged for it, but tbh I feel I need to keep going as long as I possibly can. I personally know so many others who are struggling I don't think there is any particularly stressful about my situation. I am coping somehow albeit with difficulty!

I feel everything has changed now, we need to care about each other and contribute what we reasonably can.

[NotMeNoNo]

I just checked and caring for a vulnerable individual in your household is included. Its hard when work projects are ongoing (mine are too) but its all down to you if your DH is a key worker. Would you take furlough if they offered it?

[NotMeNoNo]

Can you temporarily reduce hours? Caring responsibilites are included in the furlough criteria ( children only one example)dont be a martyr to work if its about your wellbeing. This could go on for months.

[Livingtothefull]

DH is a key worker, and DS is an adult. I don't know what if anything is available to us.

[Di11y]

you can be furloughed due to childcare even if your job is still needed. could DH be furloughed?

[Livingtothefull]

It is still tough this week....not going to call it torture as that would be hyperbole, but there are extremely difficult mental & intellectual gymnastics involved in looking after DS whilst trying to manage a very challenging and busy job. I just feel permanently stressed out - find it very difficult to concentrate when stressed which of course makes my job harder. I couldn't sleep last night because of stress, got up in the middle of the night & threw up it was making me nauseous.

But I am aware I am better off than some, at least DH & I have jobs. I just need to make it through this time somehow....may things please get easier soon.

[Livingtothefull]

Thanks so much batgirl, I have gone through DS with some of these already. It is hard to know what worries are going through his little head and he must know how stressed I and his DF are......

[hatgirl]

Just had a quick look through my work emails and these are a few of the social story type stuff that we have been using if they are any use Livingtothefull

Corona Virus resources for people with LD

school is closed Social Story

Hope this week is calmer for you.

[Livingtothefull]

That's right hatgirl his college is sending him work, however he really needs someone by his side at home to keep him focused. So for example: he is due to attend a 'virtual' lesson on Monday at the same time that I am supposed to be on a major conference call, am trying not to spend my weekend fretting about how the hell I will manage this.

We tried to get a carer for the day but nobody will come; I can't blame them they have their own families to think about. So next step is for DH to try to get a leave day at short notice. If that cant be approved then I honestly don't know what I am going to do.

Generally my workplace are pretty supportive and are happy for me to work around DS; but there are occasions when I just need to be present at work.

I will investigate some of the other resources that may be available as well.

[fascinated]

I hope you get a chance to recharge over the weekend.

[hatgirl]

PlanDeRaccordement OPs DS attends a college for adults, his education isn't compulsory, however I assume he will have some sort of EHCP in place entitling him to education to 21 or 25 which the college will be fulfilling by sending work home for home to do.

Usually the local authority would have some duty to provide additional support but basically there isn't much they can offer at the moment as everything is closed and crisis services are having to be prioritised.

OP is your DS under your local Community Learning Disability nurses? If so they may be able to provide some support. Do social stories etc ever help at all? There are lots of those kind of resources available at the moment if you think they might be useful?

[Leighwalk]

Is your DS 25+?
If he's younger and has an EHCP there is a duty to support him?
Do you have a social worker?

[PlanDeRaccordement]

With your DH a key worker, why can’t your DS go to his special school?
It seems wrong that they are assuming you can just stop working to care for him all day.

[Livingtothefull]

Hi fascinated, today wasn't good but I think that yes the weekend will help, I am almost sobbing in relief that it is the weekend.

DS woke up as usual at the crack of dawn so got him toileted, breakfasted, dressed etc. Started work to another crisis needing a conference call with senior colleagues. DS got annoyed at not being the centre of attention, threatened to dial 999. Meltdown when I confiscated the phone whilst still on the conference call. He started to unload a store box in the house, I carried on the call whilst trying to stop DS destroying himself or the house.

Fed DS lunch then more of the same, he called DH repeatedly at work. When DH got back he complained that having DS call him was embarrassing for him at work, I didn't take this very well; 'there's nothing you can tell me about being embarrassed at work'.

The last thing I want is for my DH to get indignant with me right now. Not that I blame him now, both our stress levels are through the roof. And it isn't DS fault either.