Hi,
I am new to carers connect and wanted to say hi.
I am a full time carer for my son(18). A full time carer for my Husband and also my mum who is 85.
To say I am exhausted is an understatement. My son was born disabled but as he has grown into a young man I find caring for his personnel needs so difficult. He is unable to do personal care so I do all his showers and toileting. He is also type 1 diabetic and is unable to do his medical care so I am up during the night with that too. He left full time education at 17 as he had been bullied in a SEN school and they told him to kill himself which he tried to do. His mental health took a toll and he now hates to leave the house except for hospital appointments.
I have tried to get him into a day service but no one will take him as he has type 1 diabetes and they back off once they hear that. His disability social worker is no where to be seen itâs a joke.
When he tried to kill himself we got no help what so ever for my son. We had to navigate our way through it alone which I am sure we did wrong.
My husband is a more recent caring role after spinal surgery left him unable to walk. He has just come out of more surgery with the hope that things will improve. I have to help him to shower and dress and get up and down stairs. Was promised a stair lift but heard nothing.
Mum has a severe heart condition and can only walk or stand for a couple of minutes. I do all he cleaning, shopping, try and get her out but as she refuses any walking aids she relys on me and my arm and shoulder are so messed up. Not just through looking after mum as hubby and son are quite big so it is taking a toll on my health.
Mum refuses any intervention from social services/ carers as she says she does not need them
I had to give up my job and all my friends no longer contact me. I see no one from one day to the next .
I feel so bad saying I am depressed and lonely but I have no life at all.
Someone mentioned a carer assessment on a Facebook group so I contacted them and heard nothing back.
I feel so lonely and in so much pain but scared to go doctors as I need to look after everyone and if I was out of action what would they do then.
Look forward to reading all the posts, it gives me something to do when I get 5 mins x
Hi @DebC MY GOODNESS you have a lot on your plate. Well done for posting on here - you will find a lot of support from people here.
I hope that you are claiming full benefits for each of your three Carees. You should also be getting Carers Allowance.
I had issues getting a Carers Assessment and had to chase then complain as it hadnât been done âproperlyâ and then had a second one at which I was told there wasnât much they could do to help in my situation.
I would strongly urge you to ensure your GP and if Son, Husband or Mum has a different GP, theirs also - is aware that you are a fulltime unpaid carer. It doesnât seem much but it should open some more doors to possible help and also extra consideration from the Practice for YOUR needs. My GP told me âI have to keep you well so you can look after Graham (my husband)â. I joked with him that he should be trying to keep me well anywayâŚ
You should be able to get help with extra equipment around the house to enable you to lift or move son/husband around and I am shocked if you donât get any help with your sonâs personal care. Likewise you husband. After surgery leaving his immobile there should have been follow up by Physio/OT team to ensure the house is safe and suitable for him.
Others have more knowledge and experience of Benefits and Support than me and I am sure @Charlesh47 and @bowlingbun will post with helpful suggestions.
I know itâs hard to get the time, but I find chatting on here is a great help with unloading problems and getting advice and support. If you check out https://forum.carersuk.org/t/roll-call-february-2024
youâll find a group of us regularly sharing experiences and having a chat/gossip/laugh about our days and when things go well or badly. No one judges and you can share as much or as little as you like. If you have a nosey around til you find you feel the time is right to post there, I guarantee you a warm welcome.
Just âstartingâ my day - been up since 4am but now have to make sure G is OK getting up - after I had fed the dog whoâs just had a nice long walk, which did my arthritic knee no good - but I am not moaning as G called me a Drama Queen the other day and he isnât going to be allowed to forget that in a hurry!! More soon. Hope your day is going OK.
@DebC . I really feel for you. You really cannot continue as you are as you sound at breaking point.
I think you have to establish boundaries with regard to your mother . Write to her GP and say that you cannot continue caring and that they have a âduty of careâ towards her. Send it special delivery. You really must not risk your own physical and mental health. You have to threaten to withdraw all contact and that may make her realise how dependant she is on you and accept help from others. Sadly older people can be incredibly selfish.
I would suggest you visit your own MP and just say you cannot go on like this. You also sound very isolated. Is there a local âSupport for Carersâ? in your area? If so then please given them a call as they may be aware of more localised help.
I echo Chris with regard to Roll Call. We share our âups and downsâ and you will get support and no judgement. There is a huge amount of experience. I hope @Charlesh47 and @bowlingbun will be along at some stage and hopefully offer more suggestions.
Please remember YOU matter and you deserve a life too.
I too get up at 4 am as it is the only time I can sit in peace and quiet and sneak an hour or so to do some needlework. I then take dog out for a walk before seeing to all my other tasks.
We are all under same doctor. We have recently moved from my beautiful home to live 2 minutes from Mum but I hate the house as it needs so much doing to it and hubby not able to help. Guess that makes it worse being somewhere new as no one knows us here.
Husband has been told we can get bathroom m altered and was told he could have a stair lift but nothing as yet
I do get carers for my son but because hubby is no longer able to work he had to claim UC so carers is deducted ÂŁ for ÂŁ off his UC claim.
My son gets full pip with mobility .
This is where I think the system is so wrong. Some people spend every minute of everyday caring for loved ones, in my case 3 but only get recognised for one caring for one person. I guess the government hasnât got endless pots of money but sometimes I think itâs so unfair.
My heart goes out to you DebC it truly does!
I urge you for your own sake to take your mum at her word, if she feels she does not require care that must mean from you so step back.
I say this as someone who has put my own life on hold to look after my mother, in my case it was not my mother who said she did not need care it was the LA and hospital who lied to me and said the care package they put in place was adequate and there would be lots of support. Within a day of mum coming out of hospital I was providing care not covered by the 2hrs per day care package. I was naive and stupid, kept believing better support would happen, I slept walked into caring. You have enough to deal with, if your mum is capable of making a choice that she does not want any help then as hard as it will be you must include yourself in that.
I wish you well
Welcome to the forum, my own son was brain damaged at birth. He canât read, write or do any maths, but other parts of his brain were not affected. I know how difficult things can be.
I think itâs time to make a formal complaint to Social Services about disability discrimination, with regards to day centres and diabetes. You can do this online. They are supposed to be able to support everyone with a disability, not just the âeasyâ ones!
Have you spoken to a diabetes charity about this?
In the mean time, they should be arranging suitable one to one care for him at home to support you.
Has anyone ever mentioned NHS Continuing Healthcare to you? Ask your GP to arrange an assessment for you. Read up on the CHC Framework. It would mean all the care he needs, free of charge, if he qualified, but itâs very much of a postcode lottery Iâm afraid. Donât let anyone put you off, itâs really important to measure what he can and cannot do at this stage, so that any progress or deterioration can be seen in the future.
Long term though, itâs time to think about residential care, and how to work towards this. Getting used to someone else providing personal care is a first step.
I agree with everything the very lovely @Chris_22081 said, I told my GP Iâm a carer for my daughter and they put me on the priority list so if I ring in with an issue theyâll see me same day or within 24 hours. Itâs a little thing, but it does make a difference to my anxiety level. They also know I canât leave my daughter home alone so if I bring her with me to appointments they use different methods of letting me know the problem so they donât worry her.
Oh dear - âthe very lovelyâ? be careful or people will talk about us!!!
However, I do concur - I seem to get priority if I call and ask a question or make a request. It may be that connecting me with Graham means they know he is ill and I donât call unless it IS important. Mind you I am also a creep! I take a fruit basket and big box of home-made shortbread in at Christmas.
Seriously though. Once they have you noted as a Carer it does help A LOT. Theyâve also seen Graham really struggling to get into the surgery instead of demanding a home-visit (once being sent off to hospital by ambulance) so know we don;t take the p*ss.
At my surgery it makes no difference whatsoever, Iâve been a patient there for 56 years. Sobering thought⌠After mum died, without asking me, they took my âcarerâ classification. Yet my son was brain damaged at birth 46 years ago. Do they think he got better???
Doesnât make a difference at our surgery either. Except they now forward me information for Carers week activities part way through Carers week ie so half of the activities are over.
They think reasonable adjustments means talking loudly at S âŚ
Yeah - whatâs a âSocial Lifeâ? Weâve âlostâ so many people we regarded as friends since Gâs stroke because we canât go out much and if we do it has to be for short periods as he gets so tired (not to mention access to loos!). The only time G and I went to a Social Gathering organised by a Stroke Group it was a nightmare. Supposed to have an interesting speaker who failed to turn up so âletâs have a quiz insteadâ. OMIGOD!!! Iâd rather have someone pull out my fingernails! Before we even got to the car to come home G said âPLEASE never make me go through that againâ. Well meaning people, I am sure, but rather patronising at times - and lots of âjolly jollyââŚ
We occasionally get to the village pub for a bite to eat but even that takes so much out of G I wonder if the effort is worth it. Most of the staff are lovely and very helpful but its the pure effort of getting him in and out. Then he cant read the Specialâs Board⌠At least we can take Buster with us!
Isolation can creep up on you! I do meet people around the village when on dog walks, but that is a brief âhelloâ in passing mostly.
@DebC How are things with you? Have you found any of the posts on here interesting? Lots of us can empathise with your situation. I think that, despite my moaning, I am better off than many who have greater responsibilities and problems to cope with.
