Carers -Lets support each other

sharon59

I am the main carer of my SIL who lives with us and has Down Syndrome and also recently diagnosed with Alziemers disease.Would love to be able to share the bad and good times with people who are also carers.
Wonder if people think this appropriate -not money saving -unless if you rant here and let off steam/share worries and it saves us being carried away by the men in white coats!!!!:D

tilly's_mum

I think this a great idea for a thread.:T

I look after my DD2 who is nearly 12, has autism and severe learning difficulties. She hates me using the phone, reading, writing and has to throw everything on the floor if there is a knock on the door or something comes through the letter box - me and DD1 have learnt to get around this but it is really isolating evenings, weekends and school holidays (DD1 escapes to grandmas in the holidays!) I am however allowed to use the internet (as long as I don't talk out loud whilst I am typing!!) and love MSE.

Verianna

:T

I have DS with !!!!!! quadreplegia cerebral palsy. He is 20 months old.

Always nice to come somewhere where people understand how hard day to day can be from a carer's perspective.

Just to make things even better DD is ill tonight as well so 2 children crying at regular intervals makes for a sleepy mummy and daddy

Mrs_Ryan

Can I also add... :T thank you!!! It will be nice to talk to people who understand!!


I care for my partner who has a positive diagnosis of psychosis/depression - on a bad day he is completely dependent on me - for example, I have to get him up in the morning - which can take anything up to half an hour - choose his clothes.... and do EVERYTHING round the house, I work full-time as well so it can be very stressful.

sharon - my main job is nursing people with Alzheimer's in a specialist ward in a local hospital so I really appreicate your situation and how hard it can be, and tillys_mum and Verianna - *hugs* it must be very difficult. xx

Savvy_Sue

Just a reminder - at least I hope it's a reminder to you rather than news - that as carers you are entitled to an assessment of YOUR needs from your local Social Services dept. So, if it's clear you need respite, then that should be offered, and so on.

I'm not even sure that there isn't an online tool for you to use in some authorities, worth checking your local authority website.

I'm not saying you won't still have to fight to get YOUR needs met as well as your caree's needs, but may be worthwhile, before it all gets too much and you end up in hospital (like Peggy Archer).

Also, if any of you know of any Carer's organisations, it may be worth listing them.

tilly's_mum

The Princess Royal Trust for Carers www.carers.org have branches all over the country as do CarersUK www.carersuk.org. Some areas have a Carers Project linked to the CVS.

If anybody reading this is a carer and hasn't joined it really is worth doing - carers centre can offer advice on benefits, have useful information and regular newsletters, be a listening ear, have coffee mornings so you can meet other carers, run free courses on a variety of things such as computing, crafts and keep fit - I love the courses especially towards christmas when we make christmas decorations! - have speakers in and some offer grants to carers to have a short holiday, a spa day and I did a course I had wanted to do for years but never would be able to afford it.

At my local carers project we have regular carers days which are great - last Monday I had a lovely back massage which was needed!! other carers had manicures, reflexology etc. We did water colour painting, tai chi, chocolate tasting and had a lovely buffet lunch - all for free.

Even if you can't make any of the meetings or events it is worth joining as some carers workers will make home visits and the newsletters contain a lot of useful information.

For young carers there are young carers groups where workers can support the young person - offer a listening ear and advice, some run youth clubs, have christmas party and have outing to theme parks, theatre etc...

soolin

If you have any befrienders groups locally you might want to contact them as well. They are volunteers, all checked out and trained, that offer friendship and an ear when you need it.

Never neglect yourself, carers save the NHS millions of pounds every year so find out what help there is for you and take advantage of it. You need as much support as the person you care for, don't forget that.

I don't think this board has any specific 'rules' yet apart from the usual MSE rules so I am sure a specific chat thread for carers would be perfectly OK. I am not a carer so I probably won't post on the thread but please let me know when the thread gets too long to load easily and I can close it and someone can restart another one each time.

[Deleted User]

I care for my autistic son. He is quite demanding and hates it when I am on the phone or speaking ot other people. Tilly's Mom, thanks for the link, I'll have a look.

nuttywoman

What a good idea, i care for my hubby who has memory problems.

mummytofour

I was a carer for my son with Autism and ADHD. But I am now a student which according to the gov means I am no longer able to care?! !!!!!! I am still doing the same job, the same number of hours per week, but no longer get carers allowance.

Hi, everybody ((wave))

sheldon08

Hello everyone. I hope you don't mind if I pop in here from time to time. I support adults with learning disabilities to live in the community and would love to share your experiences and maybe offer some support and info if I can. Here is another useful site.