Does any one else things that the Government take huge advantage of parent carers of adult children? My DS is aged 20 with ASD, some motor and SLI etc I feel that’s it’s never ending having to care for the princely sum of 80 carer per week.
The only way out of caring is it seems is to remove DS from home and put him in something like supported living but it would just be wrong for him as things are.
For me, the worst thing is the bureaucracy of managing my son whilst also having to do the care . I find it stressful completing his PIP forms or applying for universal credit for him. I also then have to participate in his EHCP forms and then currently sort out transport.
on top of that I have to manage his PA administration eg recruit, send in or chase up timesheets.. I organise their schedules with my son. I have to liaise with agencies and sort out how they interface with PA’s. I agonise over the forms eg the Pip can my son make a meal - ues but he can’t consistently ensure his nutritional needs for a variety of reasons eg he decides that microwaving salad is a good idea or he sets fire to a wrap or covers the whole plate in chilli sauce or will just eat bread for a meal. He needs prompting to ensure his nutritional requirements and also he gets severe constipation so we have to make sure he eats correctly and does not overeat. I suffer from severe anxiety s filling in forms freaks me out. I asked the social worker if they would do it but they just redirect to advice agencies that offer advice but don’t actually do. To make matters worse he’s at life skills so some things have improved so how often do I update? The reality is that so far these improvements still do not mean he can overall live independently. Anyhow the pip is all down and dusted now except for how often I update on his life skills progress.
The council are trying to help me by adding in some agency care to ensure a regular Saturday evening out and a proper break. We need the agency in the hope of finally getting a break/ holiday my husband and I next year. It’s the only way to ensure there will be carers available for him for a whole week/ 10 days when we go away. However now I will have to juggle using an agency with his direct PA that I don’t want to lose ( as they are good and I went through the effort of finding and interviewing them) So that is more administration.
i just feel overwhelmed and tired. It’s the government forms pip / uc combined with running my son’s life and the insult of the £80 per week carers that I even pay tax on as I have investments. Two weeks ago there was a journal entry that I missed and it was the admin of getting DS bank statements to UC - that turned out to be problematic as we bank with HSBC and they have to be sent off for etc
now we have to juggle his accounts removing monies for food / clothes etc to ensure he does not build up savings.
alsp there was all the discussions this year re DRE and social care - how much cost should be deducted from his income.
I’m currently on holiday with my DH and DS currently and yesterday again felt like crying. I call it the guilded cage. I had checked all DS clothes and I thought shoes to make sure all was ok but it turned out whilst at Gatwick he was in pain as his trainers were too small. I had asked him specifically about them eg have you tried the on and are they ok. So instead of a gentle relaxed time in the airports ( we had found a quiet spot to sit) it was suddenly a mad rush to get him shoes that fit - for some reason he could not communicate they were too small. I was cursing myself for not actually feeling where his toes were. In the meantime DH was on his laptop working oblivious to the fact that we had no sensible shoes that fitted.
Then DS inevitable constipation had already blocked the toilet so we had to have maintenance and the maid in the room. At meal times he is talking incessantly about one topic - I think that he is finding the hotel restaurants too much at times. However I did not want to cook and also the most economic way to be here is all inclusive. DH and I can’t talk freely and have to engage in DS topics of interest to keep him calm.
Yesterday DS could not even simply get a t shirt out of the drawer and put on some white shorts - he was so confused about what to wear - I had organised it all to make it easy for him eg day clothes - evening clothes - day shoes - evening shoes. I have to watch him also to make sure that he does not get sun burnt ( as if he is a small child).
DH and I wanted to take a helicopter ride and DS refuses as he’s petrified.
and just choosing food in the restaurant - he can’t make decisions and so I have to try to narrow it down but then he says he want to have his own choice etc etc Then DH says ‘let him make his own choice’ then I do and DS starts getting stressed with the menu. I then resent DH for not realising this is what will happen.
I sound like a spoilt person. I’m in a beautiful place on holiday but already felt tearful and feel run down. DH and I are at the time when we ought to be having great holidays together and reconnecting but instead we are just caring as ever and to get a break without DS involves a whole load of administration using an agency and having someone stay in our home whom we might not connect with or want in our home.
To top all that carers allowance is pathetic - people are telling me to put him in supported and chose the hours I want to care for him and at least get an hourly rate. I feel like an idiot but I love him too much to put him somewhere that is currently not right for him. … when I get back I have to probably fight for next years transport to life skills and so it goes on.
People can get carers and do barely any care and then others it’s a full time job.
Then you get the crazy pip questions when one question suffices - can this person be left alone for a few days safely! Why can’t they just ask that question to social services or his life skills tutor rather than add to my caring role.
I loath it all.
We are ok off and can do lovely things. So I’m probsbly sound spoilt but as I write this DS is talking to himself as part of his stimming. That also is tiring. Where in the PIp form does it say ‘do you talk to yourself and ha flap and could make yourself a target walking down the street?’
Overall it’s the combination of being scrutinised by the government ( having these endless forms) combined with not even getting a relaxing break or having to beg for just a weekend off that makes me want to scream. It’s even the rubbish of having to check his universal credit journal etc etc
had it not been for my son I would not have even known what UC was. I hate engaging with the benefit system but have to as my adult DS will be in that system.
Yesterday I was trying to work out how to escape it all but there is no escape unless he goes to supported living but then I would still worry about him and probably still have to do all his administration. This will never end will it.
i know that people have things worse than me - I don’t know what’s wrong with me. I just feel depressed and overwhelmed by it all.