Loss of self

Has anyone actually managed to have a life outside caring?

Hi Sara,

Yes, you CAN have a life of your own as well as being a carer, the vital issue is getting the right support.

Would you like to tell us a bit more about your caree, and what you struggle most with?

Hi Bowlingbun…
You have hit the nail on the head with getting the correct support…all energy, thought and time is spent getting the right support…its all a long fight, and even then support isn’t always appropriate. I’m sure it’s something most of us struggle with. Once kids leave school it’s hard.
I try to get time to myself but it’s rare.

My son was brain damaged at birth, he’s now 40, can’t read, write or do any maths, so I do understand the problems.
Tell me a bit more about your son and I may be able to help you.
Date he left school?
Benefits received?
Current care package?

oh! I felt this…
It’s so complex. I think it must be possible, but needs organisation, and that’s so hard when you’re exhausted.
I’m on the same quest. Good luck : )

Thank you Papicoco,
Appreciate it. Sometimes I feel a little bleak, however I know in my situation I am luckier than a lot of people, but sometimes still feel life slipping by!
I think I just miss more freedom to do what I want, when I want. I do get snatches of time, but that’s all.
Hope you find an answer that works for you as well.

Thankyou Cloudygal

Keep trying to carve out those little times for yourself. Nurture them. They are of national importance! Non negotiable!

I wondered if there is any little dream of yours that you would wish to pursue if you had time for yourself. Could you maybe taste that dream in a small way somehow?

Maybe an example is needed. I haven’t explained that very well !



To go away for a week by myself!

I have done this a good few times before, and I savoured every moment.

However, things are a little more hectic right now so that one will have to wait!

I suppose a smaller version of that would be to visit new places when possible.

However the going away is the freedom from responsibility that I like, even if just for a few days.

But you are right about carving time out…it is essential …since I first posted I have managed to do that a little more with sheer determination…so able to pursue my favourite hobby.

It is my time, and it’s just for me.

Hope you are managing some YOU time too!

Hi Cloudygal,

If you find the answer to your question, send it to me on a postcard :laughing: :laughing: :laughing:

It’s hard to do without any support or people you can lean on. I try and sneak a hotel stay once every 2 months but I have not quite worked out how to enjoy it yet as part of me feels bad for leaving the carees on their own and having a bit of me time. Unfortunately, for me, the timer always starts ticking down as soon as I leave so I never really enjoy it.

There’s a lot of things I want to do like travelling abroad and looking at wildlife in other countries but for now it will have to wait.

Good luck and keep smiling.

Hi ontheverge

If only I had the answer I would be a millionaire! :smiley:

I have managed to find supported housing for my oldest son …so I hope in time that he will settle and be less dependent on me.

So that will still leave another one to sort as I have two carees.

But I am going to get him into supported living too when the time is right.

I can understand how you feel about the two days away. It’s such a short time. If that was me I would also just get there, and wouldn’t be able to relax as I would be thinking about the return journey and back to caring.

Hopefully in the future you can do the travelling that you wish too, and looking at all the wildlife that you want to.

In the meantime, it is important to get short- breaks when you can - (even just a few hours away from caring) to do something you enjoy, such as a hobby,
Perhaps even walking and watching the wildlife on and around local lakes and woods.

Hi Cloudygal,

If you can get your children into “foyers”, they are a lot better than regular supported accommodation in my honest opinion. For example, Bradford Foyer or Batley Foyer or search for one where you live.

My line of work is with young people and homelessness. The foyers tend to give the YP the best chance in life and have key workers who help them to become confident and independent. Don’t get me wrong, I am not knocking normal supported accommodation providers, they are also great.

But well done to you. 2 carees and then you will have a lot of free time to do what you want.

If only I could get my other 2 siblings to help out with my carees, life would be so much better. It’s a work in progress though!


I looked up Foyers, and they do look good.

We are too far away unfortunately.

I am sorting other things to help with both boys independence…dont like to be too specific though on here.

What is the plan for your two siblings that you support. Are they entitled to Adult Social Care…it sounds like they must be the way you were describing in another post having to prompt with everything in the kitchen.

Do I detect from your post that you may be able to nudge the other two siblings to help with the ones at home? That would be good.

I find this aspect emotionally draining as well at times. Especially if tired.

Hence me deciding I simply will not care at this level forever.

Everyone needs a break to function at their best. And to he able to find joy in life.

Hope you manage to find that for you.


Drop me a message if you like if you want to discuss supported accommodation. That is my line of work, I work solely with young people and we do use supported accommodation a lot.

I am not sure about the 2 at home siblings long term. Sometimes I wonder whether there are aspects of them “milking” it - why bother making an effort when you know someone else is doing it all for you anyway, but then I think I wonder if I am being too cynical. My brother used to be OKish until he had this urine problem and then his life has just hit rock bottom. If I was in his place, I would have jumped by now. I have no idea how he manages and he is a very brave man to have to use catheters day in day out. I need to stop worrying about them because I am not their parent nor am I an older sibling. I will discuss this with the helpline I can talk to and will mention it to a counsellor as well when I am allocated one.

The other 2 siblings who are not at home couldn’t give a to$$. My sister’s kids are all grown up so she no longer requires a babysitter and no longer has any contact with us. I don’t think she has been to see Mum for about 10 years!!! Even if she or my nephew or niece popped round for an hour every week and just sat with them, it would take some pressure off me but it’s like talking to a brick wall. I’ve lost all hope in her. She is the most selfish person I have known in my life. The other brother, when he comes, just criticizes and mainly tells me I am useless, lol. Thanks mate. That’s kind of you.

Oh and talking of self help, I saw some gift sets on the Boots.com website and have ordered them. They were like Puressentials sleep and relax sets which are half price and on 3 4 2. I know it’s an old wive’s tale that lavender helps you sleep and relax (it’s never worked for me) but I just thought why not treat myself and pamper myself a wee bit at nighttime. Even if it doesn’t relax me or help me sleep, it smells nice.

Hope you have a good day.


Thank you that is very kind of you.

It must be hard for your sibling to have a catheter all the time.

There is a term learned helplessness so I guess anything is possible. But I guesse there would have to be cognitive function tests to be sure. Could be a learning difficulty.

Hope the lavender works for you. I love the scent too.

I have trouble sleeping about half the time…usually if I’m up late doing admin…I have to try and be more firm with myself!

No technology after 6 pm snd stick to it…unless I am listening to music in my phone which is like meditation to me.

Let us know how the lavender works.