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When your children are young carers

Sam_Alumni
Sam_Alumni Scope alumni Posts: 7,674 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.

family mum with chronic illness young carer children

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.

mum in wheelchair with young family

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.

kids visiting mum in hospital


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
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Comments

  • DawnTL
    DawnTL Member Posts: 5 Listener
    Your story is all too familiar just with a different illness. I became ill in 2004 when my gorgeous boys were just 6 and 4. They would go off to school in the morning often not knowing if I would be there when they got home at night or whether I will have been rushed into hospital. I spent months stuck in there. The little one would go to school in the morning, finish at lunch time, come and have lunch with me and then have an afternoon nap at the hospital with me before having to go and fetch his big brother out of school.
    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.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    Thanks so much for these responses, I have been off work ill for a couple of weeks so only just got the chance to have a look :)
    Scope
    Senior online community officer
  • CaderMac
    CaderMac Member Posts: 105 Pioneering
    @stomainateacup perfect Mums come in all different shapes and sizes - sounds like you're doing a great job to me. Parenting from bed is still parenting!!! 

    Keep up the great work supermums x 

  • Baby900
    Baby900 Member Posts: 1 Listener
    my and by two girls have hearing impairment when the girla leave my three year son becomes my ears he's ensure i hear the door bell hoose phone and other noise I dnt pick up. he's become a wee bit like a carer and it scares me as he so young xxx
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    @Baby900 welcome to the community.

    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!

  • louise1980
    louise1980 Member Posts: 6 Listener
    I'm 37 , chronically Ill and mum to 3.. 2 boys have disabilities and lil girl has so many anxieties! I'm in and out of hospital. Waiting for an ilestomy, I have weekly, monthly hospital admissions so  hectic hope everyone is ok x
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    My son is 18 and my rock, as I hope I am his. I’ve relied on him a lot to help me with my mental and physical health issues. He is such a caring young man and at the same time he is a regular hormonal teenager. I am so lucky to have him and he knows how much I love him. I often wonder what his life would be like with a regular mum but then I think we do the best we can with what we have. We have discussed this a lot and he thinks I’ve done a great job. So it’s just me beating myself up. He has also had personal experience of reactive depression as a young person which I have supported him through and which he has overcome. I am hoping that in his life he will have the skills to get the help he needs when I am not around. Or help his friends and family to do so. What worries me more is how my social isolation affects him as a role model as he spends a lot of time online gaming rather than going out with friends. But I think that’s normal these days for gamers. 
  • bevt2017
    bevt2017 Member Posts: 324 Pioneering
    Hi @Sam_Scope

    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
  • Apri54
    Apri54 Member Posts: 8 Listener
    edited July 2018
     Hi I am new, and this is the first item I have looked at, WOW,  your comment "so my kids don't remember a mum who was ever not ill" really hit a nerve with me and made me cry as this is my biggest fear.
    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.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Me too, totally get that
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    This post is so helpful
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Not exactly carers, but there have been times when my 4 grandchilren have helped me. They have only known me as disabled. They used to love a ride on my scooter or wheelchair. But they are now too big to be transported by me. They are 10 - 20.

    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.
  • April2018mom
    April2018mom Posts: 2,868 Connected
    I am a unpaid carer for my son. He has spina bifida and needs help in the bathroom. He does not walk independently either. Yet I believe in him. We are honest with him and his twin sister about his birth defect. My biggest fear was that people wouldn’t see his potential.
    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. 
  • Busynan
    Busynan Member Posts: 13 Connected
    It has been 2 years exactly since my now 50 year old daughter had her massive paralysing stroke.  At first  her 2 boys then 14 and 12 years and their adopted 5 year old sister coped with seeing her in hospital for 5 months then brought home paralysed completely left side and with no balance at all.and visually impaired.  They seemed to adapt to her sleeping downstairs, helping her to use a commode in the only space available - the sitting room etc etc. Just recently the local council prepared a larger house which they moved imto about 3 weeks ago. Since then they the two boys have been toxic and the little now 7 year old has reverted to bad toileting habits.
     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?



  • April2018mom
    April2018mom Posts: 2,868 Connected
    Busynan said:
    It has been 2 years exactly since my now 50 year old daughter had her massive paralysing stroke.  At first  her 2 boys then 14 and 12 years and their adopted 5 year old sister coped with seeing her in hospital for 5 months then brought home paralysed completely left side and with no balance at all.and visually impaired.  They seemed to adapt to her sleeping downstairs, helping her to use a commode in the only space available - the sitting room etc etc. Just recently the local council prepared a larger house which they moved imto about 3 weeks ago. Since then they the two boys have been toxic and the little now 7 year old has reverted to bad toileting habits.
     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?



    Can she afford to hire carers or not? It might be time to get help at least for some time. 

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