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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is MrsMwa! Just looking to meet other carers who understand this unique journey…

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chiarieds

Hi @MrsMwa - & welcome to the community. We have many members who are carers, & perhaps looking through one of the categories here on Scope may prove helpful. Please see: https://forum.scope.org.uk/categories/carers-of-disabled-children-and-adults

Please do say if you have a certain set of problems, or need help/advice that isn't covered in this section, as we have members that may be able to advise.

janer1967

Hi and welcome to the community Feel free to join in or ask any questions

Ross_Alumni

Hello @MrsMwa

Happy Halloween!

Welcome to the community, I hope you are well. We have many users on the community who are carers or have past experience of caring, so I'm sure they'll be happy to answer any questions you may have.

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Ross_Alumni

Is there anything in particular that you are struggling with at the minute @MrsMwa?

I'm sure you will get used to using the community and enjoy being here, reaching out for peer support is always a good way to help people feel a bit less alone and learn from the experiences of others.

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Adrian_Scope

Hello @MrsMwa, it's nice to meet you.

I have three kids and I'm also a carer. So, I know it can certainly feel tough and incredibly isolating at times, but it sounds like you're doing an amazing job for your son and younger child.

One of the most important things we can do as a parent is to love and support our children and, to be honest, it already sounds like you're doing both of those.

@MrsMwa said:
I am trying but I am unsure a lot of times what to do.

I'm going to let you in on a secret - I think most parents always feel a little bit clueless, I certainly do. How you're feeling is completely normal.

With regards to the friends and birthday party, it sounds like you already have quite a lot on your plate but would be possible for you to invite someone from his reception class over for a play date? A lot of kids around his age still play alongside each other rather than having friends and there will definitely be other parents worrying their child has no friends.

How is your little boy getting on at school? Does he enjoy going?

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Daniel_2021

Teddybear12 said:

Hi @MrsMwa I was a carer for seven years for my daughter. It was the hardest job I have ever done. She was fit and healthy when at the age of 25 she was diagnosed with IPAH which is where the blood vessels in the lungs narrow no cure transplant her only hope. Very rare one in a million. She was super fit went to the gym everyday, was in her first teaching job and was engaged to be married. Within three months she could not walk from the front door to the end of the drive. She could walk but not breath and walk. We went private for her diagnoses as she was deteriorating before our eyes. Within three months she had a Hickman line fitted and was on 24 hour IV medication which we made up everyday. I gave up work to look after her as I told her we were in it together. Then the fight began for everything we needed with funding for the medication, and benefits. I sometimes think it is just as hard if not harder for the carer as I had to look after her physically and deal with her mental health. I am also a very private person and very rarely ask for help. No one I knew was a carer and it was a difficult curve. The thought of going to a Carers meeting for tea and toast was a nightmare I was not prepared to go through, plus I could not leave her as she had blackouts. My whole life and hers changed overnight. We are all stronger than we think even when we are on our knees we carry on. We never looked at what might have been and just concentrated on what we could. She ended up in a wheel chair and on 24hr oxygen but we still went out when we could. She loved the theatre and no matter how long it took to get ready and how much stuff we had to take we went. My daughter was on different medication for three years then it stopped working and she went on the transplant list after 2 years she got a double lung transplant but only got one year of good quality of life and then she kept getting infections although you could have your dinner off my floor it was so clean. We made the consultant laugh as on her line was a black line where we had to clamp the line when we changed the valve after three months we had washed it off the consultant said it had never happened before. Unfortunately she died of sepsis. I do not know what it is like being a carer for a young child with learning difficulties but I do do know about being a carer and a mother. If you want to talk anytime please email me and I will help if I can. Being a carer can be a lonely time and sometimes we all need someone to talk to. Take care and Good luck.

@Teddybear12 I think you are so brave for firstly sharing your experience and secondly it's clear the love and devotion you have for your brave daughter. Although it had an utterly tragic outcome you can see the love you had for your daughter at the time, it's simply sobering.
I completely agree that I think it's more difficult for carers. I've recently become a wheelchair user and have FND, I get plenty of support regarding meds, physio, mental health etc. My wife who is completely amazing and my carer gets zero support. We are new to all this so she is being assessed to become my "official" carer whatever that means, apparently she will hopefully get some support.
As a carer I feel you take on the physical and mental pain of the person you are caring for whilst having to deal with your emotions seeing that person change and have the dynamics of the relationship change. I think carers are angels, I would do anything for my wife and I feel so guilty that I put her through this on a daily basis but she just gets on with it. Although we may not say it as often as we should I think we all love and value our carers so much, in my case if I didn't have a wife I wouldn't be here.
I know that doesn't follow the thread and people may differ from some of my views but we can all agree carers do so much more than just care for us!

chiarieds

@Daniel_2021 - I find your post as always so compassionate. I've hesitated to respond on this thread, as I didn't consider myself a carer. Our youngest daughter had breathing problems when she was born; one of her lungs collapsed, which was successfully re-inflated, but her breathing problems continued necessitating a tracheotomy at one week old. We had good bits that happened..... the night after she had a tracheotomy a nurse came in to look after her. By coincidence she was on her first night back after having a road traffic accident many months previously, where she'd needed a trache herself; I can't say how helpful she was in so many ways. After 3 weeks we went home (normally 3-4 months, but my physio training perhaps helped).

Anyway our little one needed suctioning to keep her lungs clear 24/7. We had others comment, how do you cope? It's just something you do without thinking about it as a parent, partner or spouse; it's just natural to do the best you can for those you love, is all I can say. When we went to Gt Ormond St I was questioned how often our youngest daughter had been hospitalised....never after her first 3 weeks as I looked after her day & night when she had a cold, etc. Like Teddybear12 you could have eaten off my floor as had to minimise any potential cause of respiratory infections.

My story doesn't end any better than Teddybear12's unfortunately, as we lost her when she was 23 months old. She was an amazing little girl, & because of her I've tried to help others after researching her problems, & finding out more.

Don't feel guilty Daniel, you would do the same for your wife, & I'm sure she knows it.

Daniel_2021

@chiarieds Hi, thanks for saying that. Everything that has happened this year has been overwhelming, some of it in a negative way and some of it hugely positive...i'll be honest I currently find it easier to see the negative but I guess that's just part of the journey.
I'm so sorry to hear about your daighter. Again when you hear the sheet tragic circumstances it is massively overtaken by the love shown, I find it beautiful to the point of heartbreaking. I think anyone who cares for someone is amazing but when a child is involved more so given the communication barrier due to their age.
I now understand why you are so supportive on here and what drives you, what a lovely legacy and selfless way of spending your time. It also makes me more grateful for the responses i've received from you in the past.
Thanks,
Daniel

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L_Volunteer

Hi @MrsMwa

Welcome to Scope's forum. It is great to see you have joined us. I am really pleased to see that our amazing community was able to support you. It is absolutely fine to be negative or positive about caring responsibilities. Caring absolutely does come as a rollercoaster and people will be in different circumstances and time periods in their journey of caring. Though, you can still empathise with one another and support each other which is incredible to see. Lived experience is so valuable. I'm not a carer but I use my own experiences with living with autism to support others with SEND and it has indeed got me to where I am today which currently involves studying for a Masters degree in SEND. Keep following your passions and be determined. Sending hugs your way too

eilishandliam

Hi @MrsMwa

We are new to the community also.

I won’t go into too much detail but we have 3 children with learning disabilities.

Like others have said feeling negative is ok. Nobody prepares you for being a carer and to a certain extent you have to learn as you go.

We found at the start we had a whole swirl of emotions including sadness, fear and anger. This can also lead to guilt about feeling that way. I think that is normal for everyone.

We love our kids to bits and there are lots of good times with fun and laughter but you can also feel pressure to constantly show a “positive” outlook to friends and family.

Having someone you can share your feelings and experience with in an honest an open way we found helpful. I am sure this community will give you that outlet.

Also we found some of our friends were really keen to help but felt unsure how to do so. With our children’s needs they can’t really be looked after by people who don’t know them well. However this week a friend dropped off a casserole so we didn’t need to do dinner. These small kindnesses go a long way. So if someone says “how can I help” don’t be shy in asking!

Some people though I agree it’s maybe easier just to say things are fine as you know they just don’t get it.

in terms of birthday parties, like others said we always found other children the most accepting of all, particularly at a young age.

One thing you must remember is to also think about yourself and your wellbeing. Your child needs you to be the great parent you are.

Sorry if my thoughts are bit random.

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