Drowning in fear

I was 5 years old when my sister was born. She’s totally blind and has cerebral palsy which causes her to walk with a limp, a speech impediment and other general day to day difficulties. As I was growing up she had plenty of health difficulties and as my Dad always worked and we had no other family, I was passed around family friends and had no real stability.

My sister is now 26 and I 31. I have remained her secondary carer (after my Mum) my entire life. She is incredibly bright, but with a dual disability she unfortunately has a lot of hurdles. She is unemployable and lives at home with my Mum as sheltered accommodation seems to be for those with either severe cognitive impairments, or mild physical difficulties. There seems to be nothing around for those who are bright but have quite severe physical disabilities.

4 years ago, 2 days after I discovered I was pregnant with my first child, my Dad was diagnosed with leukaemia. In the last 4 years he has gone into remission 4 times and relapsed 3 he has now been in remission since December 2017. In April 2018, he had a stroke. He now walks with a limp and is stiff down his left side along with lots of other health complications post cancer/chemo/stroke.

My Mum cares for them both most days and I help where I can/am needed.

My son is 3 years old and my fiance- although sometimes supportive, has quite severe mental health issues.

My Mum’s Dad lives in France. Mum lost her Mum last year and so tries to visit him every now and again as he is alone out there. When she goes, it is up to me to care for my son, partner, sister and Dad. Each time it leaves me so anxious and panicked and I end up getting ill because it’s so intense.

Each day i find myself getting more anxious to the point of panic attacks thinking of a time my Mum is no longer here (shes 62) and all the caring responsibility falls to me

My life would be over. Just the caring itself is 3 jobs at least. I dont feel able to talk to my Mum about this as I dont want to add to her stress but I feel like I am drowning and there is genuinely no way out. I talked to a family friend about my fears and she said she had thought about it herself and didn’t know what to say.

My sister has NEADS ( stress seizures) and relies on my Mum and I so much, I couldn’t shove her in any random home and it wouldnt be suitable for her. At the same time, my dad is a very proud and stubborn man who now needs a lot of support.

I envy non-carers so much. It must be so nice to feel like you can picture your life with no boundaries. Go wherever you want and be whoever you want to be.

Your sister would always have been entitled to help from Social Services. Did you know?

Your parents have absolutely no right whatsoever to expect you to care for your sister when you were young.
You are now an adult and CANNOT be made to care for any of your family.
Now you have a child, that is your top priority.

I also have a brain damaged son, fit as a flea, hyperactive, but with the mental age of a 3 year old in the key areas of reading, writing, and maths. He went into boarding school when he was 16, my health was ruined, and from there he went to a residential care home for a while, which was lovely, and then into supported living.

Your mum should contact Social Services, because she won’t live forever, and now is the time for her to make proper arrangements for your sister’s care, while mum is able to help as much as possible in the transition.

A friend of mine has twins, the second twin has normal intelligence but can do nothing for himself, not even eat or swallow properly. He lives in a lovely home, a big bungalow on the edge of the New Forest. He attends day services some days, and the staff are devoted to him and other residents.

I would suggest that your first step is to ask Social Services for a Carers Assessment for you, so that you can discuss your fears and think of what is best for your family - before it is too late!

Contact Social Services but be aware they have a vested interest in trying to get you to continue to be a carer - saves their budget and makes their lives easier and in many of our experiences they are happy to blatantly lie if it suits their purposes.

Hello Sophie
Firstly tell yourself that it needn’t be inevitable that you become a carer. As the others have said there will be options. One route that works well for some people is to start seeing themselves as the Care Manager rather the main or sole care giver. That way you are still involved and loving but are not run ragged doing all the day in day out tasks.

Luckily you do have time to start getting your head around it all. I do suggest you get some counselling now, and in going. You can google CBT and your area which bring up a site where you can self refer for either free telephone or on line sessions

Wether you end up doing no caring, some caring or full caring, you do need to look after yourself mentally as well as physically and that means putting your needs first so that you are prepared

You might also find that mindfulness and mediation techniques help take the edge of your anxiety. A trip to the doctor wouldn’t go amiss either. You’ve been through a lot and you might just need some help to get you over this.