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I'm new so I'll introduce myself - Carers UK Forum

I'm new so I'll introduce myself

Tell us a bit about yourself here.
Hi All,

My name is Katie, I am 25 < 26 in 4 days>, I have been a carer for more than 8 years for my mum. At first it started off with helping her around the house, whilst everyone else worked as I found it hard to find a job full time, getting her to take her meds at the right time, helping her to and from appointments as her arthiritis made it hard for her. But that all changed on 6th October 2017, my mum had a severe stroke that affected her entire right side, we were told after further tests, that she had suffered two mini strokes that were masked as artheiritis pains. She was a type 2 diabetic and was told that the diabitities had caused the stroke.
I had come home from work and was told by my sisters and brother that mum was tired and had been asleep most of the day, I went up to take her tea up, as I was helping her up for the toilet, she stumbled a bit, thought nothing of it till she fell down and couldn't get back up fully...I lay her on the bed and dialed my dad to come home saying theres something wrong with mum.
I noticed that her speach was slurred and her face was droopy. As dad called 999, I asked her to lift both arms up, she couldnt, the lady on the phone was a great help, there was a medic on the way and was asked to get her dressed. which between my dad and myself was a hard experience. but evenutally we got her dressed in pj pants, top and gown with slippers, but mum being mum didnt want them to see her bedroom and she managed the stairs with dads support.
The medic got there within minutes and he did the FAST test and within two seconds there was an ambulance coded red lights and sirens on its way. To me it felt like ages, but in fact was only five minutes.
Life got stressful, i quit my full time jobs, let my sister and brother go back to work.

now a year on with mums stroke, I enjoy caring for her, but the income is bad, she gets a care team in the morning to help bed bath her, as we are on a waiting list to get a new house specially adapted for mums needs. There are days where she sleeps for hours on end and I would deep clean the house, sort the dirty and clean washing out, prepare her outfits for the carers the next day, pre make tea so dad comes home to a cooked meal and to take over me. then there are days where mums depressed and it affects everyone. There are days where i sit and watch mum struggle to eat the cornflakes in the morning, making little notes to tell her care team in the next reviews. there are days where i want to scream and shout and cry because i feel excluded. i feel left out. my sisters both have social lifes and are out daily, one with work and the other because she doesnt have to work due to mental health and enjoys spending her income. there are days where i just want to be me and go Harry potter shopping as its my hobby and my love. but i have to hold it in till i can speak to someone usually my doctor because my mum struggles with words and then i remember if its hard for me its hard for her.

But then I found this website. So I signed up and now i actually feel a tad bit better as i got to rant and rave in words and angry typing on the keyboard to everyone on here.

Hopefully I can have a day off next week aka bday and spend my money on things for me for once and not worry about mum for the day and just focus on me. the next few days will be hard as all i could remember at work was parents asking me what i wanted for my birthday that year and all i could say was my mum to come home and be well...shes home and shes going strong for now x

thank you for letting me rant and rave

Katie :)
Katie, hi and welcome. Glad you found us.

I would delete your surname, as this is a 'public' site (except the members only section)....just a precaution.

May I ask how old you are?

It's important, as of course you do not want to spend the rest of your mum's life doing nothing but looking after her, much as you love her. You can't give up on education, social life, a job/career, a home of your own, boyfriends, husband, children, etc etc etc.

So you need to 'plan ahead'.

How old is your dad - how far off retirement? How long are your parents likely to have to wait till they get their new modified home, etc etc.

While you are 'at home', don't just clean the place etc, use the time for something for yourself - whether it's 'working from home', or your hobby, or, perhaps most useful of all, doing some academic work or whatever to improve your job prospects and so on. (I'm sort of assuming you are young, as your dad is still working??)

One thing is absolutely for sure - much as you love your mum, and your dad, you were NOT put into this world to spend your life as her carer. Why are YOU doing this, and not your sisters? Are their lives 'more important' than yours?.........???????!!!!!!!

Answer. No.
Hi Katharine
That must have been a terrible shock to find her having a stroke like that . You probably don't realise that it will have affected you for quite some while, but it now sounds to me if you are coming through that and your inner voice has started reminding you that you too have a life.

Just because you had trouble getting a job when you were younger doesn't mean that you can't get one now, and indeed I think you should. As a parent myself I would want each of my children to be out there as adults, working and living their lives rather than stuck in looking after me. I'm sure your Mum would want the same.

It's not your fault she had the stroke, and its not just down to you to be stuck in looking after her.

You need to find a job and then tell Dad, siblings and social services that you are not available to look after Mum so much. You might want to perhaps say you'll do one day at weekend's for example, but NO MORE.

It's not fair that so much falls to you, so get a life out of there and start having some fun!

Hi again
I don't mind my surname being on show. I can't even find my surname on the post as I'm using my mobile.im 26 in a few days. I take time for myself. I do get help from my brother and dad. Dad's 55 this year and he's got a lot long left in his contract at work. My brothers 28 and he helps when he can aka lifting and helping her walk. My younger sister was caring for her but it got too stressful for her and she's no longer caring she helps but she doesn't do all it. My older sister is 31but she fractured her ankle in November in several places and can't weight bare but she helps when she cans. But mental health isn't a good mix. We have help off the social but as she's got reliable people near by at all times and there's someone in at all times we just get care in the mornings. We are on a 18 month waiting list
Mum got a car on motorbility so dad learnt to drive and we go out on weekends when mum feels like it or when we have the god children round which pleases mum.
I've started painting and drawing again. I'm doing more charity work now and that's a fun for me as I like helping overs. My brothers got a new job now. Just been told so I will have more days off. I so cannot wait for that to start. Dad's booking a few days off work to help around the house. Sisters can do their own thing. They can get really annoying if they try to help as they do things in own way for example. We went york for a bit and came home to the kitchen being reorganised. They got bored. The house was clean tho
I'm starting to take time for myself. But this carers allowance needs changing too :?
I was in full time work for three years came home did jobs around the house as well as looking after mum. It got too much so I gave work up, got a part time job as a mascot on home games only entertaining the children and football fans. And I'm doing more volunteer work with younger children with messy play therapy which is a new one for me.
Let's see what mums review does in a few weeks time
"My younger sister was caring for her but it got too stressful for her "

Hmm, a bit of a 'sensitive flower' is she?? Convenient! However, maybe that's too harsh a judgement on her (though it remains convenient for all that!)

However, the situation you describe does sound like quite a good 'joint effort', but just make sure everyone is pulling as much weight as you. Remember, you did say in your opening post you envied your sisters having their social lives......that 'unhfairness' remains. YOU have as much right to a social life as active as theirs!!!!!!!!!

I'm glad you are finding time for arts and volunteering and so on. Have a think though - IF you were not helping/caring for your mum, what would you be doing now?

It's important to think what your life WOULD be if, say, your mum were perfectly fit for her age, or conversely (horrid to say it, but for the purpose of this exercise, set it down), died tomorrow.

Only then can you really assess the impact that caring for her is having on YOUR life. So, if she didn't need care at all (let's say for the 'nice' reason that she never had a stroke etc etc), what would you be doing with your life, and where would you be living?

Think, too, and it's important this, even more perhaps, what is going to happen when you meet 'the one'? How are you going to marry someone, set up home together, have children together ....if you are still looking after your mum?

What is the situation with your siblings? Where are they living, and are they with partners yet, children, etc etc?

At the moment, it sounds like you are all 'adult children but no other commitments'.....that won't remain indefinitely, so you do all have to 'think ahead'.

Stroke is a nasty, nasty thing (and your description of how you coped, and the application of that FAST test)(those TV ads are really scary and always make me automatically check I can still smile and lift my arms up high!), BUT, it is sometimes 'improveable' and more work and research is going on to help improve patients, even months and years after the stroke. So DO ensure your mum is doing everything that can be done to improve her health. I know it is very variable (like cancer, you can have it 'mildly or terminally' etc etc), but make sure your mum MAXIMISES what improvement she can make, to become as independent again as possibly can be.