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When your children are young carers
Sam_Alumni
Scope alumni Posts: 7,731 Disability Gamechanger
This week we are talking about Young Carers, if you are interested in finding out more about the support available in your area, take a look at Carers Trust. I blog about my illness at So Bad Ass talking about life with chronic illness, IBD, an ostomy and invisible impairments.
I was diagnosed with Ulcerative Colitis in 2004, it's a long term, chronic and debilitating illness that causes pain, bleeding, diarrhoea and many other symptoms, and so my kids don't remember a mum who was ever not ill.
In 2013 I started having surgeries for my condition, I had my large intestine removed and an ileostomy formed. I have had 5 operations in the past four years and it is likely I will need more. Each of these surgeries have required weeks in hospital and months in recovery and so my family life has changed massively and I have needed so much support from my family, including my kids.
I feel really guilty when I think about my kids as young carers, it worries me about what effect my illness will have on them as people and I feel sad about the stress and pressure that is put on them when I am very unwell.
When we think about young carers, we might think about a child or young person who is doing a lot of physical care for a person. Yet though my kids do have to do more around the home, they have to pull their weight, they do make me cups of tea, hot water bottles and will help me out with chores and whatever is needed, I think the biggest pressure for them is the emotional side.
Being chronically ill is hard work, I have extreme fatigue and many days I cannot manage to get out of bed. I am extremely lucky to work for Scope who support me fully and I work from home, I couldn't do my job if I had to go to an office every day, but the ability to work from home opens up the world of work to me.
Most days, the exhaustion and joint pain are debilitating, I have a permanent ostomy bag and so I have to deal with the consequences of not having a colon, the leaks, the bag emptying and changing, the pain, and the emotional impact that has on you. And this is what my kids see every day, and that makes me feel really sad.
They expect to see me in bed, they expect that I will be too tired to do things with them, they accept when our plans change at the last minute because I'm not well enough. They see me in and out of hospital and I know it scares them, they get upset if I go to hospital for a check up as they are frightened I won't come out for weeks.
But you know what? They are more empathetic, open, caring and loving. They have an understanding of illness and disability far beyond their friends and they have had to learn compromise. I do believe that their lives growing up with a mum who has a chronic illness has made them into kinder and better people.
I have always tried to be honest with them, I think that when we try to protect kids from the truth, it can backfire. They know more than we think and if they don't have the facts, they tend to make up their own conclusions which can be much scarier.
There are times when I wish I could be out riding bikes with the kids, or running about a laser quest but we have our own special times, they know I am there to listen and love, they come and lay in my bed with me, sometimes watching a movie, sometimes to talk and sometimes they just bring their laptops or books and we just sit quietly doing our own things but being together.
Being a good mum is the most important thing to me, and I have had to rethink what a good mum is, I can't physically be there for them all the time, I am not the one who gets them up in the morning, their dad often cooks tea and does the taxiing about, but I can be there for them 100 % emotionally, I can tell them every single day that I love them, that they are awesome and wonderful. I can appreciate them as my children and also as young carers and I am truly grateful to have three such amazing humans in my life.
Are you a disabled parent? How does it make you feel? Tell us about your relationship with disability and parenting.
I was diagnosed with Ulcerative Colitis in 2004, it's a long term, chronic and debilitating illness that causes pain, bleeding, diarrhoea and many other symptoms, and so my kids don't remember a mum who was ever not ill.
In 2013 I started having surgeries for my condition, I had my large intestine removed and an ileostomy formed. I have had 5 operations in the past four years and it is likely I will need more. Each of these surgeries have required weeks in hospital and months in recovery and so my family life has changed massively and I have needed so much support from my family, including my kids.
I feel really guilty when I think about my kids as young carers, it worries me about what effect my illness will have on them as people and I feel sad about the stress and pressure that is put on them when I am very unwell.
When we think about young carers, we might think about a child or young person who is doing a lot of physical care for a person. Yet though my kids do have to do more around the home, they have to pull their weight, they do make me cups of tea, hot water bottles and will help me out with chores and whatever is needed, I think the biggest pressure for them is the emotional side.
Being chronically ill is hard work, I have extreme fatigue and many days I cannot manage to get out of bed. I am extremely lucky to work for Scope who support me fully and I work from home, I couldn't do my job if I had to go to an office every day, but the ability to work from home opens up the world of work to me.
Most days, the exhaustion and joint pain are debilitating, I have a permanent ostomy bag and so I have to deal with the consequences of not having a colon, the leaks, the bag emptying and changing, the pain, and the emotional impact that has on you. And this is what my kids see every day, and that makes me feel really sad.
They expect to see me in bed, they expect that I will be too tired to do things with them, they accept when our plans change at the last minute because I'm not well enough. They see me in and out of hospital and I know it scares them, they get upset if I go to hospital for a check up as they are frightened I won't come out for weeks.
But you know what? They are more empathetic, open, caring and loving. They have an understanding of illness and disability far beyond their friends and they have had to learn compromise. I do believe that their lives growing up with a mum who has a chronic illness has made them into kinder and better people.
I have always tried to be honest with them, I think that when we try to protect kids from the truth, it can backfire. They know more than we think and if they don't have the facts, they tend to make up their own conclusions which can be much scarier.
There are times when I wish I could be out riding bikes with the kids, or running about a laser quest but we have our own special times, they know I am there to listen and love, they come and lay in my bed with me, sometimes watching a movie, sometimes to talk and sometimes they just bring their laptops or books and we just sit quietly doing our own things but being together.
Being a good mum is the most important thing to me, and I have had to rethink what a good mum is, I can't physically be there for them all the time, I am not the one who gets them up in the morning, their dad often cooks tea and does the taxiing about, but I can be there for them 100 % emotionally, I can tell them every single day that I love them, that they are awesome and wonderful. I can appreciate them as my children and also as young carers and I am truly grateful to have three such amazing humans in my life.
Are you a disabled parent? How does it make you feel? Tell us about your relationship with disability and parenting.
Scope
Senior online community officer
Senior online community officer
Replies
It's 13.00 and I'm in bed. I know I'm poorly if I'm still in bed when Loose Women come on the TV.....
Not ill enough to keep husband off work today so I'm gratefull for that. Just feeling very overwhelmed at having the whole day, till 12 midnight on my own. But at 3.30 my gorgeous girl will walk herself home from school. I've got emergency meals in freezer for when I need to make meal for us both. But she will be coming home to a poorly mummy and ill need to her fetch and do things....
Anyway,... I hate being grounded but I know I heal better when less stressed so am having a stroll round our lovely Scope community.
Love your post, obviously wish life was easier for you but lovely seeing more pics of you and the kids (cuties alert ⚠!).
Hope you're having a better week xx
"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"
I missed several birthday parties (although they would always come to the hospital to see me and open their presents beforehand and almost missed Christmas several times.
They became my little carers at home and are now still doing that at 19 and 17. I feel so sad that I have missed so much of their little lives although not a night has gone by when I’ve not said goodnight and told them how much I love them, even from HDU.
I was our bread earner and when I lost my NHS job we lost our house, car and way of life. We had to move to a different area to a bungalow which had to be adapted which they both hated but we got by and still continue to get by but I will feel forever sorry and guilty for the things they have had to go through at such a young age.
Having said all that I am immensely proud of both of them.
Although having disabled family members comes with its daily challenges, I think there is a lot to be said for the postive impact it has on younger family members - helping them to grow into adults who champion inclusion, who are patient, tolerant and loving.
Senior online community officer
I suppose at first, even I've assumed that you must be out doing amazing things with them and have been the perfect Mother because they do look so content....however you are just like me. So maybe I should stop fretting and see that my kids are healthy & happy and I'm giving them all they need emotionally. I've parented mostly from my bed this week but they're quite happy. Ergh parent guilt is the worst!
Keep up the great work supermums x
Senior online community officer
I would not let it bother you so much. One of the things I love about some of the recent posts here is how often these young people become wonderful adults.
The good news is there are a wide range of products that can alert you to different sounds, including some which integrate various products to alert you. Some can be very expensive.
Check out https://www.actiononhearingloss.org.uk/live-well/ this page has a number of links to other pages you might find useful. Click on the products and technology link to get an idea of the type of products out there that could assist you.
If you have a smartphone or tablet there are a couple of apps that may save you a small fortune: https://www.actiononhearingloss.org.uk/live-well/products-and-technology/apps/
I haven't used most of these so cannot comment how good they are. The first two though may be of interest to you.
As an individual I stood alone.
As a member of a group I did things.
As part of a community I helped to create change!
I think you are amazing!
I didn't know much about young carers? Has my husband is my main carer.
It was my daughters school who emailed me about them. They have carers going to her school every month and asked if it was ok for them to speak with her.
They wrote down what they talked about and came up with a plan for her. They also came to my house, and spoke with my husband to see what she does for me in the house.
The carers told me she had no problems in school, only that she worrys about me. So the school have given her permission, to ring my husband whenever she wants.
I've recently filled out some forms, so that she can start to go to the young carers club. (Its her first day tommorow) They have given her money, which helps towards trips out.
They also have constant communication with my husband, just to check she's doing ok at home (which i think is awesome).
It upsets knowing I can't do the things with her, like I did with my sons. But im happy she has so much support from her school and young carers.
She's a bit shy and nervous about tommorow. But I think once she starts to know the other kids, she will make some great friends.
Bev x
Looking at the picture of you and your kids made me see it as my kids must see it, "just helping Mum" but that isn't what I see, I feel that I am adding pressure to their hectic young lives and it makes me very sad. They have been brilliant over the last 15 months doing everything and anything with out question, reading the above posts has made me feel less guilty. I had worked with the young carers running crafts for kids when I worked but now as with so many things my situation has been turned upside down and I find it very hard to take rather than give.
I have a supra pubic catheter. I have never hidden my tubing or collection bag from them and have explained what it is and why I need it. They are used to me being in bed at odd times throughout the day.
When they visit us, they know that they can help by getting things for me, operating my hoist button, plus moving things out of the way...like their own shoes!!!
I feel sad for children who are carers for their parents and wish more help was available.
I encourage him to be independent as much as possible. Finding other carers to talk to has not been on my mind. I don’t feel the need being a private secretive person myself.
I am tearing my hair out with frustration as neither I nor my husband are physically able to help our daughter but I look after all her affairs, sort her banking and arrange hospital appts for eeryone. Oldest boy has ADHD. Girl has Hypermobility and suspected autism.
The middle boy who used to be so helpful and supportive is now using the phrase suggested by the Early Help worker "I dont feel comfortable doing this' and leaves his mum in the dark or waiting ages for help to get to the toilet?
The older boy just either stays in bed or just goes out all day and does not help at all.
Has anyone any idea for a solution tto this mess?
I am at present investigating where to get child care in the mornings for the youngest as she gets dla.
However the oldest boy as over 16 years is not considered a child, has lost his PIP payment and is being violent towards his brother. Who can I ask for help for him.?
Scope community team
Sorry I've not spotted your message until now. How are you and your family getting on? Have you managed to find any other support for your grandchildren? It sounds like a tough situation for you all.
I wondered if you may have been in touch with Stroke Association as they may have some ideas for help you can get for both your daughter and her children, or at least signpost you in the direction of some additional resources.
Action for Children, Young Minds and Honey Pot would be some good places for help for the children too.
I'm going to email you with an offer of additional support, so please keep an eye out!
Best wishes,
Adrian
Scope
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