New Member saying hello


I’m not 100% sure what made me join today and what I want to get out of it. Maybe just to tell my story to someone sympathetic.

I somehow made it through to the end of the working year which has given me time to reflect.

I’m a carer for both my wife, with physical disabilities, and our young Autistic son. I also have a young daughter to look after and a full time job (working from home).

It’s been about 18 months since she went into wheel chair and I think I’m not able to cope anymore. The stress and tiredness is unbearable.

If I ever show dissatisfaction with my life my wife gets so upset and says she’s ruining my life.

I have no one to talk to and there is months long waiting list for mental health services in my area.

Hello this is a very good place to start!
There are many people on here who know and have similar experiences as you.
Just keep telling you self you have been holding the family together!
You say waiting for mental health services. There are many charities who provided different types of counselling or listening services. You can self refer.
Do you have any outside help.
Are social services involved with your family. i.e. carers assessment - help for your son and wife.
Please keep posting as I think you will find out information. And posting will help release some of your pressure.

I’ve had carer’s assessment for both

With regards to mental health; I have self referred and been referred by my doctor. I have done CBT and I’ve been assessed as needing more help and am on the waiting list.

I believe I have done everything practical that I can.

Now I just want kind words and an opportunity to let off steam.

It’s tough being a multiple carer, very tough.
Finding a balance between competing demands is the key to survival. You can’t do it all without help and changing a few things.
How old is each member of the daily? Is everyone claiming the disability benefits they are entitled to?
Is your son’s school suitable?
What 3 things could make life easier?

Kids are both primary school age.

Son is at an additional needs school.

Son and wife get their benefits. I am not entitled to carers allowance because of my earnings.

Things that would make my life easier are

  • A full night’s sleep
  • to leave the house without worrying
  • come into some money so I don’t have to fit work around everyone.

Hi DiracM,
Not sure how you are managing all you are doing. You must be exhausted.
Does your wife have paid Carers to assist with her personal care?
Does your little boy have any respite care?
Who needs care in the night?
When I worked full time whilst caring for S (he has autism too) I had a cleaner, came once a week, was one less thing for me to do & worth every penny.

Does your wife have an emergency pendant or similar to summon help, if you are out?


It is exhausting. I’m currently trying to think of ways of finding more time. I’m going to take some time over the next few weeks to work out how many hours of work I can give up and still pay the mortgage and bills.

The lack of sleep is mostly due to my son getting up at 5ish every morning and rarely sleeping through. Most nights I also get up with at least one person to deal with nightmares, toileting or waking up in pain.

Social services won’t provide carers for wife because i work from home and so can provide care myself. Which was a very annoying outcome to our case.

I’ve got some Short breaks hours i can use for little one. Try and save those for school holidays but that still leaves me with my daughter and wife to deal with.

Although my little girl is an absolute superstar. She is so thoughtful and makes her brother so happy when he is sad. Trying my best to give her normal childhood.

Happy Christmas

Even though you work from home. A care plan should reflect that you are up every night. You experience disturb nights for more than one person.

It’s bad enough for one person but multiple people not at all acceptable.

You can contact your local MP. And ask them to visit you home.

It amazing what can happen once your local MP is involved.

Hope today you can see going forward things can change for the better!!

Happy Christmas.

Thanks everyone. Having a lovely day today and feeling good.

Hello I am caring for my husband who has been paraplegic for six years now. My life came to a halt when this happened I had dreams just finished my first degree I could not do anything. Now with one hand and one mind to look after the husband and children it was not easy. I thank the help I get from city council and the family around me. The challenge now is how do I move on with limited funds back to work,? Or to study are my wishes. That’s a bit about me

Hi Sifiso.

Two observations.

CHC / NHS Continuing Healthcare a factor here ?

If so … and granted … the answer to all your future hopes ?

In the absence of which … and assuming you currently claim Carers Allowance :

The dreaded 21 Hour Rule ( Studying ) and the £ 123 weekly limit on earnings ( Working ).

Yep … the Government certainly " Encourage " family / kinship carers to expand their horizon … ???

An update from me.

Things are looking somewhat better.

I’ve been able to reduce my responsibility and hours at work with only a small reduction in pay.

I have my first counselling session on Friday.

My wife has appointments with national specialist for her condition in London starting soon.

I think Christmas left me at rock bottom. I’d been off work ill and nothing helpful seemed to have happened in months.

In the last couple of weeks these few things have fallen in to place and it has given me a bit of hope.

Still have a lot of the stresses and issues mentioned before but I feel a bit more resilient and have more energy to face them.

“The secret of change
is to focus all of your energy,
not on fighting the old,
but on building the new.”

Hello and welcome!

Have you had a needs assessment or not yet? And I know how you are feeling it is hard. I currently care for my little brother with a physical impairment and I also am a mature student as well as working part time. Why don’t you make a list of ways to make things easier on you and your family too? Trust me it helps. Every week I make a short list of goals etc to achieve. If my brother has managed to accomplish that particular one, I tick it off.

Do you qualify for respite care? I know that can help too. You may also wish to try sleeping medication for your son or a white noise machine in his room at least to help drown out the noise. Talk to your family doctor about medication. They should be able to help you deal with his sleeping issues.

Are you seeing a therapist? When my cared for sibling was a baby, I saw a therapist every week. See if you can find any in your local area.