New member, caring for my younger sister

New to Carers Connect
1

Hi everyone,

My name is Kira age 23. I live with my family of 5 (parents, sister and brother) in a two bedroom house and help my parents take care of my disabled sister whos 21 (we were both born on the same day). I used to have a speech and language disorder but it got changed to dyslexia and i have some social anxiety.

i found this forum from crying out of stress and feeling theres no one i can talk to about the struggles i go through.

Anyways my sister has a rare chromosome disorder and she has a really bad habbit of eating materials. Shes been to the hospital 3 times because of it. It can be really stressful at home sometimes but we do have our fun times, like singing together and dancing to music. :blush:

I hope to find some advice so i can prepare myself for if something happens to my parents (like a divorce) or for when i get a lot older (since my older brother doesn’t want anything to do with my sister). Or even some advice on how to deal with things better at home.

2

Good morning Kira & welcome

What a good and caring sister you are. The size of your home - I guess there isn’t much room for chill out me time. Is there a particular reason you are all living in a two bed accommodation.

Your parents are very lucky you are at home to help. And I hope you are appreciated!! You should not be worrying at your age. About your sister’s future. Your parents should be taking appropriate long term steps.

As there every be a needs assessment for you sister.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment

As any family member had a carers assessment.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

Are you attached to any local carers groups.

https://www.carersuk.org/help-and-advice/get-support/local-support

rare chromosome disorder

This website maybe able to give some help and/or refer you to someone who does.

3

Hello Kira, welcome to the forum.

You sound like a very caring sister although it sounds stressful for you. I’m sure many people on here can relate to how you feel and will offer support

Following on from Sunnydisposition’s advice, you should have a look through all our help and advice pages and check you and your family are getting all the support you’re entitled to:

It’s important to look after your own well being too, I know that’s harder now with social restrictions etc but I hope you can find some time for yourself, to go for a walk or read or follow whatever interests you have.

Best wishes

Jane

4

Afternoon sunny and Jane :blush:

Is there a particular reason you are all living in a two bed accommodation.

Its the house my parents bought when we were younger. My mum was thinking that we should moved to a bigger house but my dad and brother didn’t wanted to move, so we stayed at this house ever since. My parents just paid off the house earlier this year.

Its been quite difficult for my parents and sister since both me and my brother moved back in from uni (i dropped out/failed in 2018 and my brother dropped out/failed in 2020 during the whole pandemic). I used to share a room with my brother and sister but then when i was 10 my parents gave me and my sister their room while they slept in the living room. After me and my brother went to uni (i was 19 and my brother was 21) my parents made my brother’s room into their own room. Since my brother (age 25) moved back in he’s been sleeping in the living room.


Your parents are very lucky you are at home to help. And I hope you are appreciated!!

I am, the other day my dad said “i dont know what i wouldve done without you” :blush: my parents argue a lot (mainly my dad against my brother and mum) but i try to be the middle person and help both my parents.


You should not be worrying at your age. About your sister’s future. Your parents should be taking appropriate long term steps.

They are but i feel like my parents are starting to crack a bit from stress and lack of sleep (same for me aswell). My mum spends all day with my sister (and all night once a week) and my dad spends all night with my sister (since he doesnt go to sleep) while also working a small part time job and taking care of my grandma once a week.


It’s important to look after your own well being too, I know that’s harder now with social restrictions etc but I hope you can find some time for yourself, to go for a walk or read or follow whatever interests you have.

I mostly look after myself, i get space to myself when im working from home and i have so many hobbies to keep myself busy (drawing, skating, sewing, dancing, gaming, watching tv shows). Its just the nights that get tiring or when my sister gets home from going to youth club… She cries, shouts, kicks, bites and scratches for hours until she falls asleep or calm down. When my sister goes to bed i try to keep an eye on her so she doesnt bite any material (since my dad sometimes falls asleep) and when my sister gets home from youth club i try to help my mum calm her down before my next zoom meeting for work. I just wish she didnt get so upset everytime she comes home. Nights weren’t that bad years ago but its recently getting worse, shes much calmer sleeping in the living room but thats where my brother sleeps. My sister nearly always cries when we get home, since our early teens.


I will check some of these links out and show them to my parents.

I do remember when i was a little girl my family would go to this yearly conference called “UNIQUE” i used to have so much fun there but then we stopped going. Im not sure if my mum is connecting to any carers group but i will find that out.

Also the main problem my family is having with getting some help is that so many of the people we have take care of my sister can’t handle her like social workers and people at respites. Most of the time they would say my sister is okay in their care but they struggle etc

5

Well Kira

Considering all the challenges you and your family are experiencing - I take my hat off you you all!!

https://www.challengingbehaviour.org.uk/about-us/about-challenging-behaviour/what-is-challenging-behaviour.html

Regardless how agencies find certain clients challenging. There is a duty of care of Social Services. To find appropriate ways to help and assist families. And I know that sounds simplistic. I have work history of working for an independent care agency. Only dealing with difficult clients. Those where social services conceded and had to bring in outside help. So there are agencies who provide and deal with complicated care packages. And carers keep needing to knock on doors.

What verbal skills does your sister have. The fact she is distressed on returning home. May suggests many reason I am guessing many have be explored.

Accommodation - have you parents consider or have an option. To extend the property as funding can be sort for such a project.

6

Your sister needs to move out, to somewhere that can meet her needs, it’s not fair that she kicks, scratches etc. That is physical abuse!

7

HI Kira,
does your sister have a diagnosis of autism too?

Eating non foods is called Pica - have your parents had any information on managing this?

What sort of youth club does she go to? I wonder if she is getting over stimulated there and ‘holds it together’ until she gets home? Have your parents talked to the club staff about this?

It does sound like you all need more support, especially since you are trying to manage her challenging behaviour with limited space.

Has she had a sensory assessment with an OT? This might really help manage the Pica and the behaviour you all see when she gets home from club.

Melly1

8

What verbal skills does your sister have.

She doesnt have any verbal skills other than “ugh” and “ah” to things she wants, she has learnt some Makaton from school, my mother (she studied sign language for a year when i was younger) and from the cbbies show something special (she loves hearing me sing the songs and she even had some of her school friends on the show). She also sings “ah” or “wah” but other than that she can’t talk words or sentences.


Accommodation - have you parents consider or have an option. To extend the property as funding can be sort for such a project.

I think my mum decided that she wants to extend some rooms of the house and i think shes using some of the funding she had saved from my sister to help with that. And then hopefully me and my brother moves out. my brother is already thinking of moving even though he has some huge financial problems. Even though i currently earn the most out of my whole family, im nervous about moving out mainly because i’d need to find someone to move in with and i wouldn’t be there to assist my mum and dad.


Your sister needs to move out, to somewhere that can meet her needs, it’s not fair that she kicks, scratches etc. That is physical abuse!

Its comments like yours that is the reason me and my family don’t reach out for help or to talk to someone. :roll_eyes: My sister gets upset like this because of the uncertainty of whats happening around her. And its not that my sister needs to move out she just needs calming down and to be away for the house at least twice a week, which she has been. Though tbh i feel like my sister got into this biting habbit because i would always hide under a blanket or sheet when she would try to bite and scratch me (sometimes id find it ticklish and laugh which probably makes my sister more angry with me…) So then she started chewing the blanket instead…


does your sister have a diagnosis of autism too?

No she hasn’t but i could ask my mum


Eating non foods is called Pica - have your parents had any information on managing this?

Yes, i think my mum found out about it last year and did her research, we was going to work with a someone who specialise with pica but they couldn’t handle or help my sister.


What sort of youth club does she go to? I wonder if she is getting over stimulated there and ‘holds it together’ until she gets home? Have your parents talked to the club staff about this?

I dont know but i can ask my mum (as you can see my mum deals with a lot of the details and information about my sister). All i know is that its a 8:30am - 2:30pm youth club, so it isn’t like an after school thing

9

Hi Kira

Thanks for answering the forum members questions. Sometimes these type of questions can seem daunting and possibly overly intrusive. There is always a strong willingness to help everyone. Don’t feel you have to answer. It’s certainly OK to say nothing or tell us what is most useful for you and your family.

10

Kira, read your post through again, as if it was written by someone else.
You are crying with stress, hopelessly overcrowded, no peace or privacy.
What would you tell someone in that situation?
If your sister has high care needs, are you aware that she could have her own place, funded by Housing Benefit and/or Social Services? With an extra room for a carer, you, or someone else?
Your parents could have the house extended, in some cases free of charge, with a Disabled Facilities Grant.
LD comes with huge challenges. I found my husband DEAD IN BED, and I’ll always believe the stress of caring was responsible. I used to be fit and healthy, but couldn’t look after myself properly with a brain damaged son. In the end he had to move out, I was so ill.
How do you see your own future?
Married, kids, own home?
How are you going to get there?
You gave up uni, so you must have had a good secondary education?
How about a part time degree?
Things will only change for you, if YOU change something.
In your tears, what did you want most of all that is acheivable???