Hello all,
Its reassuring to read how others are feeling, and that I’m not the only one going through this, as it feels like it.
I care for two boys, one with autism and one with learning disabilities. One is an adult and one at school.
I feel like I don’t matter, my needs don’t matter and adult services would be happy if I plodded on like this till I’m 70!
I had a bit more time when they were both at school, but due to lack of sufficient support I am not getting the short breaks that carers need.
Add on top of that all the money saving and fighting for support constantly I feel drained, burnt out and my own health is suffering.
It should not be like this for any of us.
Thanks for listening
How old are they?
What benefits are they claiming?
What is the total value of their “Personal Budget”.
How many hours of day services do they get?
How many hours of domiciliary care do they get?
Do you have a Carers Personal Budget?
When were their Needs Assessments and your Carers Assessment last updated? In the last year?
Do they get on well together, or fight?
Now for the most difficult question.
Whey you are no longer able to care for them, have you decided what you would like to happen to them?
Bowlingbun
Thanks for your reply.
Yes looking into all that now to get it sorted.
It’s clear needing to look into all options for future. Cant do this longterm… to try and do so would mean either collapsing with exhaustion, running away or screaming with frustration. Possibly all three at the same time lol
Hello and welcome!
Have you done a will or not? What arrangements have you made for the future?
Hi,
sounds like you have your hands full. I care for one adult with autism and related learning difficulties and he is enough.
I totally understand what you are saying about when they were younger. When S was younger I had from the time he went to bed to the time I went to bed as ‘me’ time. Now he is older that time has disappeared.
S can be very noisy especially when his IBS is playing up or his anxious and that can affect his sleep too - I long for some peace and quiet. He does go to the follow on day service at his college, but is now off for the hols. I could NOT cope with him home 24/7, he needs to much input.
Thing is we get so tired, it doesn’t leave much energy for fighting for service/funding does it?
Have you considered getting an advocate for your adult son and for yourself, someone to help you battle for support.
Melly1
Hi Melli and Thara
couldn’t get an advocate was told we did not need one as they had me, and I was doing it! ( at what cost to me though) problem I see with these advocates is even if you get one they probably wont see the young person enough to know them well enough to even begin to help fight for correct support.
Perhaps others have had a better experience with advocates. I would be interested to know?
Looking for permanent accomodation and support for the future. I’m sure that will be another fight.
Melly it is good that you get the break when your son is at college and then day service after that sounds good . But as you say holidays are hard.
it’s so hard putting our own needs last isn’t it. Too many demands!
Fairydust,
he attended a specialist day college and now he has finished his course he attends the follow on day service set up by the college instead.
We have used advocates in the past. It takes awhile and skill to communicate effectively with S, so they listened to me representing him. The value for us was they knew the system and could chase up calls whilst I was at work. They also knew who was who in the system.
Melly1
PS who is saying you and your son don’t need an advocate- social care or the advocacy service?
They should not refuse a request for advocacy. My son has one and so do I. The criteria is something like “if you would have difficulty in making your voice heard without one”. I have one mainly to act as an independent witness at meetings, because too often in the past SSD have agreed something at a meeting and denied it later!
I’ve often represented local residents at planning enquiries, with great success, running rings round paid planning consultants, it’s not that I can’t speak well, just that they don’t want to listen and will tell lies to save spending money. I’m sure I know the Care Act better than they do.
if I can have an advocate, anyone can.
Make a formal complaint to the HQ, not the local office, at their failure to provide one each.
Fairydust, I’m a fairly new member too, and although our situations are very different I think one thing we might have in common is the fatigue and the feeling of despair, and that can make it hard to think straight about how to somehow have a life of our own alongside the caring, and in my case full time job. What I’ve found in just a few days on this forum is that because people understand it helps so much. It somehow lifts a little of the weight. It helps you see that yes you should have and do deserve a life. Your life for you. Unashamedly.
At first I felt like I didn’t even have the energy or time to answer or act on the queries on here from people keen to help. But I got there, and things shifted somehow. Even if things improve a little bit, it has a domino effect I promise you. It’s subtly changing how I talk to people on the subject, for example other members of the family. It also changes my responses. I am giving myself more dignity in the situation and feel calmer (mostly!!).
I hope you find a good way forward. The kind people on here will definitely help you I’m sure. There’s a lot of great practical advice that I have been really grateful for. As the Queen said in her speech…small steps!
Good luck : )
Fairydust, if you can find a good independent residential college, it will teach your son with LD so much about looking after himself, with others going through the same process. (M went to Fairfield Opportunity College in Dilton Marsh. You might like to google them to see what they do there, and then see what is available in your region. Fairfield was 60 miles from home, the LA paid for a few journeys each term.
Everyone is different, and in a college situation that means they learn to help each other, and in this way gain confidence.
After college my son went briefly to a large care home, then transferred to a smaller home in the same village run by the same company, and from there to his own flat with carer support.
It’s a huge jump to go from the family home to “supported living”, college can help fill that gap.
“Supported Living” is now the preferred option over residential care, which is being phased out. Funding is the main reason, as with SL some of the costs are funded differently.
Melly
It does sound like you had better luck than me with advocate.
It was the advocacy service who said we didn’t need one as I was doing ok.
I am going to look into this again. Thanks
HI Bowlingbun
Its interesting both you and your son have an advocate… I could definitely do with this.
When you say get in touch with HQ do you mean head of Adult Services?
Really helpful to hear of others experiences. Thanks
Hi Papicoco
Thanks for your reply… and understanding, I changed my name lol by the way…
Situations are quite different but definitely similarities in how we feel.
It is a comfort knowing others are in the same boat. I am already feeling more positive…glad Christmas is out of the way.
I do get out of the house most days which does help. I also have an action plan for the New Year. But most of all it’s about getting quality time for me when I can.
I have only just realised there were further replies to my thread…still getting the hang of the forum!
I feel less alone than I did. Thanks
Bowlingbun
Sounds like your son had a really good graded transition.
Something I shall definitely bear in mind. Thank you.
It was anything but easy!
Boarding school at 16 only allowed as I was very ill, no respite at all for 2 years, 14 lots of antibiotics in 12 months, many teeth extracted. GP insisted my son had to leave home.
The first step is actually to get yourself rejected by the local college, because they can’t meet his needs. A very humiliating experience for both of us. Only when the local college rejects you can you apply for residential college. (You have to do this each year!!)
Finding a suitable college is also difficult. M was very lucky, he loved Fairfield Opportunity Farm, now called a college. It was a 3 year max course. His previous social worker had recommended the residential care home, and we liked it, but at the last review there was a new social worker, who claimed to know nothing about the home!!!
This meeting was between the death and funeral of my father, father in law and mum in law had only recently died in quick succession, and now I was going to have to take responsibility for my housebound mum as well. I spoke to the college principle in advance of the meeting, and told her I just couldn’t care for my son as well, and she agreed.
So when the SW said she knew nothing about the home he was due to go to, we’d even got a date, I stood up and left the meeting. Told them to sort it out between them, but one thing was certain, he was NOT coming home. The home placement was approved!!
Be prepared for a real battle, it’s one of the most difficult processes I’ve ever been through. You have been warned.
However, while he was in the home, I had major surgery for kidney cancer, and my husband died suddenly of a heart attack. It might not have been a perfect situation (the home changed hands) but at least I knew there was someone else to look after him if I died.
Omg Bowlingbun that all sounds so traumatic and stressful.
Yeah, I am realising that it will be a battle…especially with two…
I win one battle…only to start another…then wait for the next! And the battles get bigger each time, as the stakes get higher.
Must be good now your son is sorted and he comes home to you to visit.
Yes, I urge other parents to do the same.
From the child’s point of view, it means that mum is there to help them settle in to their new home. M and I have had a lovely time making his flat a real home. He has my old dining table for his large model railway layout, a double bed with a very good mattress (he’s over 6ft tall) pots with plants he likes outside, etc.etc. He has matching curtains and bed linen that he chose, etc. etc.
He has a life of his own, going to various day services and activities, friends he can share things with. I get a vital rest while he’s away, so that when he is home I have more energy to do interesting things with him.
Most important of all, he does for himself things I used to do for him at home, like all his own washing, using the tumble dryer, even ironing. In fact, his flat is like a show home, mine is a bit more “lived in”!
Bowlingbun
Sounds like a really good outcome, and he is more independant than before.
That is what I am aiming for too.
Definitely best to get them settled while mum is still around.
I refuse to leave things until an emergency placement is needed.
Getting Social Services to take note, and action is another matter altogether!
Suits them to have the young person living at home!
Cloudygal
Thanks, your reply to my reply made me smile, so I thought I’d reply 
Glad to hear you feel a little less alone. Keep going! All the best for 2020.
Better to upset Social Services and get what you want, than get nothing.
I’m sure it says “Beware, Atilla the Hun!” or similar on my file. However, I am always polite, have always done my homework, and they know that I know what my son is entitled to. They also know that whatever I do is in M’s best interests.