Frustration

[Tee]

Does anyone else get really fed up with plans, meals, time etc., all having to stop, change or go to waste because they've given attention to someone else during the day that needs support?

[bowlingbun]

Yes, sometimes I think "why won't they leave me alone". The only solution is for me to go away and not have email contact with anyone. I'm off to Devon for a 2 day break soon.
There is no peace in my own home, a cottage I love in the New Forest with a large garden. Social Services recently decided to hold a meeting at my house and circulated the details, time, and date, to a number of people WITHOUT FIRST CHECKING that it was OK!! It wasn't. It was planned for a Wednesday, the day I always care for my grandson!!

When I go away, my eldest son lives with me, so listens to my answerphone messages and rings me to tell me if there's anything desperately urgent.
Few people know my mobile number.

[Pet66]

BB, did they check it's actually ok to hold a meeting in your home anyway or don't you mind that, as long as it suits you. I used to get frustrated at the powers that be thinking I should fit in with them. Admittedly I did but definitely showed my annoyance when I waited for 2 hours to be told it couldn't go ahead because the social worker hadn't turned up. Obviously we don't matter!

[Tee]

I guess as hard as it is, and goes against our instincts, we need to learn to set boundaries. Whether that be with people visiting when not convenient or setting specific times to check in on non urgent messages when we're having 'us' time

[Melly1]

Tee,
I find all the waiting around for S frustrating sometimes and then just as I settle to something he is ready to do whatever it was we were going to do.

When he is on holiday and I revert to 24/7 caring the day revolves around his routines and his timings which can be frustrating too.

Melly1

[bowlingbun]

Pet since the start of the first lockdown, we have been very careful about who enters the house. I have been in ICU with tubes coming out of me once before, and have no desire to repeat the experience. Our closest neighbour is very vulnerable,can't have the jab, has to work for the NHS from home. The only place she ever visits is my home. Most of the rooms in my cottage are 11ft square, the kitchen is long but narrow,,likewise the conservatory. Distancing for one person is easy, impossible for six or more unless we are sat outside! We only have 4 kitchen chairs. We have lots of camping chairs, but none easily accessible and I just don't have the energy to move anything up and down the garden. Most of all though is the fact I don't want them invading my space, when I told my son what they wanted to do he said in for the right terms what they could do! Social Work England have told me they intend to investigate my struggles, so this really demonstrates the issues perfectly!! M's social worker met him finally on Friday. He lives just off one of the main roads to the West country, her trip would have involved a stretch notorious for bottlenecks. So she drove 40 miles, saw him for 20 minutes,and left to drive back again. Some nights I get just 3 hours sleep. Tonight, tired and stressed, I've been dressmaking, even if I'm not now going to Crete this year.

[Tee]

Tee,
I find all the waiting around for S frustrating sometimes and then just as I settle to something he is ready to do whatever it was we were going to do.

When he is on holiday and I revert to 24/7 caring the day revolves around his routines and his timings which can be frustrating too.

Melly1

OH Melly1. You hit the nail on the head! We have a 2 week holiday coming up and I'm dreading it as it will be anything but a holiday or break for me. I find it so hard not to get annoyed but I will at least set a routine for him to read a couple of hours each day when I can go for a walk, run or bike ride (then I just have the worry that he will actually watch the dog and not get totally emersed in his book and forget there is a dog to look after!)
Thank you for replying and sharing your experience and feelings

[bowlingbun]

I used to dread the long summer holidays when my son was school age, so did my friends with special needs children.
In the end we formed a charity, I was Chairman, and we ran a 2 week playscheme every summer, the last 2 weeks of the holiday when we were all shattered. As the parents had to be on site, we avoided many hurdles. The Youth Centre where we held it had various rooms, a gym/hall, a coffee bar, etc. Each parent committed to arrange one activity during the fortnight. All the siblings were welcome too, so in a way it was a "Young Carers" event too. We had someone from DWP talk about benefits, everyone was better off after that visit; we had a folk singer who was often on the radio, a coach trip etc. The mums could share their problems honestly, knowing that they could laugh about some things that an ordinary parent wouldn't understand.
I miss that friendship now M is grown up. His brain damage has left part of him locked in childhood.

[Tee]

BB, that sounds like an amazing experience you created for your community and no doubt really beneficial to everyone, including all the sibling carers, as well as parents/friends supporting each other. I care for my husband which is difficult as there is a lot of support out there for parents and some great peer groups. It all seems to drop off when it comes to adults, especially those high functioning ones who present as capable in some environments but then melt down and can't cope with daily life and activities

[bowlingbun]

Yes, that is exactly my son's problem now he is 42, living in a privately rented flat with carer support, coming home regularly to me. I'm not well enough to care for him full time.
At the moment people with Down's Syndrome seem to be "flavour of the month" but that means that people with LD, like my son who was brain damaged at birth, don't fit neatly anywhere. He can't read, write or do any maths, but has a photographic memory going back to when he was very little. He can't reliably get the plates out for a meal but he can light up and drive a 10 ton steam roller. When he was just 4 years old, he could drive a miniature traction engine. His flat is spotlessly clean, but he's put a £700 chair that needed fixing in a garden shed with a load of junk. However much I try to get him the support he needs to access the community, it never seems to happen.
Children in education have Parents Groups; Carers groups locally focus entirely on the very elderly and dementia; but there is nothing for the 25-60 group who have special needs, and their carers.
Even the government's long awaited plan seems to ignore those of "working age" unable to work due to serious issues.