Hi,
I wanted to reach out and connect to other carers on here, as life can be lonely.
My daughter is 22 and has complex health needs and autism. We do have paid carers to help, but I do the majority of care. I am a single parent, I would really like to chat to other carers and build a little support group. Please reach out
Sally
Welcome Sally. You will find the care and support on here amazing. So much experience and you can really invent with no one making you feel bad about it. I think @Melly1 will be a great source of support.
My situation is with a 93 yr old cover narcissist mum so zero experience. Just sending 
Hi Sally, welcome to the forum. You’ll find this a great place where you can say what’s on your mind. I used to care for my late husband and found this forum so helpful.
Thank you for your reply. How are you coping ? I am also helping my mum care for my dad, so can also have empathy for you xx hope your doing ok?
Hi Sue,
Thank you for your reply. How are you ?
Me and my mum are also caring for my dad at the moment, I wish I could help her more, it’s hard for her. Xx
Hi Sally, I’m okay thanks. I’m sure you’re doing as much as you can re helping care for your dad. It’s not easy is it. My elderly parents live with me, they have various health ailments but are managing fairly well. It’s good they’re with me as I can help them where needed more easily now then when they had their own home.
Welcome to the forum. My son has LD, brain damaged at birth, can’t read, write or do any maths, but can happily look after and drive our 10 ton steam engines!
I also helped look after all four parents, so understand the challenges of being a sandwich carer. Are all your carers claiming all the disability benefits which they are entitled to?
Do you have Power of Attorney sorted for both parents?
What is the matter with your dad?
@Sally_1234 hello sally welcome to the forum.you sound like you have a lot going on. I hope that you are ok. Do you have any hobbies things you like to do. I like to colour, do diamond art and growing plants. Others have hobbies and crafts they like to do. Do you have any favourite programmes you like to watch on the telly. I hope you have had a nice day and nice evening take care.
I like sewing, mainly dressmaking for summer holidays in Crete. Time stands still sewing…until one of the family gets hungry!
Hi, thank you for the message,
How old is your son ? Steam engines ?! As in real ones ?!!! I need to hear more !
How are all 4 parents doing ? My dad , bless him had secondary cancer last year , it had spread to his brain and had a tumour removed , he lost a lot of mobility and things are harder for him now. But he does really well , I see him every day.
X
All the parents have passed away, husband, brother and much loved sister in law too. During that time I had kidney cancer and was nearly killed in a car accident thanks to a boy racer!
Is dad getting Attendance Allowance?
What outside help are you getting?
I married a man and a steam roller. Since then we’ve owned a number of engines, still have the original roller and a 10 ton traction engine, plus a few other smaller engines. They live in a shed at the bottom of the garden. My eldest son is in charge of them now, ably assisted by my grandson, another budding engineer. Both sides of the family have engineers, my great grandad put the engines in Titanic. He went on the sea trial but missed the maiden voyage as he was ill! Husbands grandad drove steam trains. Grandson has just sorted out his GCSE options, special dispensation to drop French and Geopgraphy in favour of things which will be more useful to get an engineering apprenticeship. I have always mucked in with whatever they do, but am always happiest sewing.
Oh my goodness, I am so so so sorry to read this , you have had such a terrible time. I’m sending you my thoughts and best wishes. I hope your health has improved?
My health isn’t great these days, but I’ve had a lot of fun too. My annual special treat is now 2 weeks in Crete every September.
Hi. Welcome to the forum. I’m a part time carer for my 99 old year Mum. Still living at home, she is severely sight impaired, has hearing and cognitive issues, has chronic neck pain and other less problematic issues! For the most part, we have a reasonable relationship, but she is prone to outbursts and I find time with her waring!
I’m sorry you are feeling lonely. You have come to the right place for support from people who really understand the life of a carer. I agree with the others. Try and do some things just for you. Not always easy to fit in, but important to prioritise. I enjoy walking, horse riding, my exercise class, going to the pub and gardening. I’ve had to knock back the frequency of these things as I was getting over tired, which makes it difficult to be patient with Mum.
I also work 2 days a week as a patient care assistant at a vets. It’s hard work, but I enjoy it, and it gives me something to talk to Mum about. Her ability to chat has worsened significantly recently. An occasional doggie cuddle is also very therapeutic
Hope you can find ways to feel less lonely.
Good Morning,
Thank you for your reply, you also have a lot going on.
My daughter loves animals, I bet you enjoy working at the vets ? Hard work tho like you say. We have a cat and threw guinea pigs, my daughter would love a dog , but it’s just not practical for us right now.
I hope your mum is doing well, what an amazing age !
Hi @Sally_1234 welcome to the forum.
I care for S. He is 11 years older than your daughter. He too has autism and additional health needs.
Do the care workers take your daughter out?
Hi Melly1,
Thank you for your message, sorry I’ve taken a couple of days to get back to you, it’s been a long long long weekend!
My daughter struggles with very chronic fatigue and pain so going out is minimal, she is high functioning and loves to go out but it takes us a lot to get her out and then recovery after. She doesn’t go out just with a carer , normally a Carer and me , or with her older brother.
How about your son? Does he have carers too?
Sally x
Hi Sally,
Does she have fibromyalgia or ME?
It sounds like you have had a stressful weekend, feel free to rant!!
S goes to his college day service (it used to offer more interesting activities than it does now) and he had a paid carer to bridge the gap between that and me leaving/ coming home from work.
He’s too vulnerable to go out on his own, he’d panic if he met a dog off and can’t cross roads independently unless there isa pelican crossing.
I take him out at weekends; I’m his transport to his autism club one evening and occasionally if I’ve got the energy, we might go out in the evening.
Hi Sally, that “long long long weekend” line landed with me — doing the majority of the care as a single parent while also helping with your dad is a huge amount to hold. On the going-out being so limited by the fatigue and pain: has your daughter had her own Care Act needs assessment from the council? She’s entitled to one in her own right, and it can come back as a personal budget paid via Direct Payments, so you choose carers who genuinely get pacing and recovery rather than fixed slots that don’t fit her energy. Worth asking for a Carer’s Assessment for yourself at the same time — that’s the route to a bit of respite so the load isn’t all on you. Have you ever had either of those done, or has it all been arranged privately so far?
Hi Sally, I have a 20 year old son who is autistic, and has very high anxiety and other mental health issues. I too am a single parent. It’s just him and me. Some days (and nights) are just so hard, and I feel totally alone. Other days are kind of OK, and my son and I will have a laugh about something and for a while it’s like the sun comes out. I do despair a bit about his future, though, as at the moment I can’t see him ever gaining his independence, which makes me feel quite depressed. It makes me feel a bit of a failure as a parent. I never thought, when he was born, that he would still be clinging to me at the age of 20. But there are plenty of people on here in the same boat, I am sure!