A little while ago I was asked by an incredibly inspiring lady if I would consider writing a guest post from a slightly different perspective with regards to sibling young carers, or the impact me being a parent carer has on my children’s lives.
Recognition and Awareness for Young Carers and Parent Carers
I’ve been a parent carer for almost 16 years now, even though parent carer’s receive carers allowance we still find it extremely difficult as parents to also get recognition with in society as a carer. I know of the difficulties young carers can also encounter in being recognized as a carer. When caring for a close family member, or as I do, two of my children, it’s often deemed we are only doing what’s necessary as loved ones or in my case as a parent, as what any parent would do for the children they love, it’s what’s expected. Yes of course there is truth in this, however, no matter how much I love my children I can’t claim providing 24/7 care isn’t far more exhausting than performing ‘usual’ or ‘regular’ parental duties. I find providing care, physically, emotionally and mentally draining some days. As I have children that don’t have disabilities also I am able to make a comparison between being a parent and being a parent carer and I speak as I find personally and I find there to be a BIG difference.
I have spent a lot of years quite isolated, and friendships can be difficult to maintain when I am so absorbed with daily life caring for my children and raising my family. I wrote a post recently The Mechanics Of Caring, this explains exactly what it is I do all day. I don’t think my daily routine could be seen as ‘run of the mill’ day to day life as a parent (although obviously it has become so for me).
It is the same with young carers, being a young carer, taking on the role of ‘carer’ is to my mind more tiring, physically, emotionally and mentally than simply loving that parent or sibling. It brings a whole host of other things to the relationship.
I have had people argue that this isn’t the case, I think this only serves to prove the lack of awareness and the ignorance that still surrounds being a parent carer or a young carer.
When my first daughter was born and diagnosed with a sever disability I found myself unable to return to work. It was then I decided I would pour my energies and efforts in to my child and in to having my family. I have since gone on to have 5 other children, and my first born son also has a disability. He has ASD (low functioning), a speech and language disorder, hypermobility and dyspraxia.
Aside from the impact my children’s disabilities have had on my life, are the ways in which my other children and family member’s lives have been affected, and being honest, I do carry the guilt for this given it was my decision to go on and have had more children.
In families where a close relative has a disability it is not uncommon for the children in that family to become or to take on the role of a young carer. In my case it was my choice to have more children after my daughter was born and diagnosed. I faced much disapproval and accusations of being selfish in doing so. As a direct result of this I’ve always made a concerted effort to try to minimize the impact on the other children’s lives, that they took no active/physical part in their siblings care and that they would never feel their sibling is in some way their responsibility. I’m only human though and it’s been hard, and I am extremely lucky that I have had the support of my Mum (the children’s grandmother) and my husband (step parent to my eldest 4) in trying to do this.
That said you can only do so much, my other children have been and are affected on a daily basis, as is myself, my husband,my mother, my In-laws,my family and my friends. The ripples of disability reach far further in ways that are very rarely discussed.
I asked my children when writing this what they would say has been the biggest impact having a sibling who is wheelchair dependent has brought to their lives and all answered the same,’ lack of freedom as a family’.They didn’t use that terminology (they’re children), my daughter said ‘well we can’t go anywhere as a family unless it’s wheelchair accessible or Gran can sit with Paige’. My son said ‘you can never take us to the park on the way home from school because you have to get straight home to Paige’ and ‘we can’t just go on holidays wherever we like or for as long as we like even if we did save up the money’.
So many people who have never had experience of caring for someone who is wheelchair dependent often say breezily, ‘oh well so many destinations are wheelchair friendly these days’. I smile but don’t answer, because it’s simply not true. Things are improving, awareness is growing and campaigns are helping. The Changing Places campaign is a fantastic one. The standard disabled toilets are no use to my daughter as she has to be laid down to be changed (she is doubly incontinent and unable to do standing transfers etc). She requires a hoist and a bed to be changed on. Inevitably yes, in the past, at a cost to her personal dignity, I have lifted her out of her chair and on to a picnic blanket on to a toilet floor to change her. I got away with this until she was about 8 and just to big for me to lift and lay.
This all means that before we plan a family day out (when my daughter is well enough again). We have to consider the following,
How long she will be able to travel comfortably for?
How many hours we will be out and in turn she’ll be sat in her wheelchair for?
If there will be any suitable changing facilities, complete with hoist and a bed where we’re going?
Then we must ensure we take nappies, wipes, inco sheets, her daily medications, pillows and blankets and her special drink cup.
Lastly but just as importantly we must consider will she just be bored sat in her chair or will there be things she is able to partake in or enjoy?
We also have to think of our son, will there be much walking (his hypermobility) is there anything that’s likely to cause him a meltdown? (his ASD)
Then and only then, secondary to all these vast array of considerations do we then get to consider the needs and requirements of their siblings, our other children.
We all know that it is the person with the disability who the suffers the most, that goes with out saying, and this post isn’t about moaning about caring. It is about showing the impact of caring upon the family as a whole, parent carers or sibling carers.
If we are to put the other children’s wants and needs first we usually have to ask if my Mum could sit Paige that day. My Mum has a job and commitments of her own too.
Even a simple thing like taking all of the children to their grandparents (In-Laws) house is out of bounds with Paige. They live in a normal house that isn’t wheelchair adapted and there’d be no appropriate place for me to change Paige’s nappy. Equally we can’t pop round to friends houses as a family, for birthdays or BBQ’s etc. I never get invited to other peoples houses, even for coffee, because they know I have Paige to care for and that her chair is to big for their doorways etc.
The other children have learned to grow up in a family that is often fragmented I guess. Half of us here and half of us elsewhere when it comes to days out or even breaks away.I was fortunate enough to win a family holiday recently but I only got to spent 1 of the 3 nights with my family and I was lucky to get that (my husband took the other children and my mum helped out).
The children have also all grown up knowing Paige’s needs have to be seen to first given she is so physically disabled.
My son said it’s a bit like they’ve always had a baby sister rather than a big sister. I was a bit upset on hearing this but I guess it’s true in a way. My children are very used to having younger siblings (given there’s 6 of them :-)) but unlike most children whose siblings grow up and become less dependent of their parents they have 2 siblings who will always be dependent on their parents. In fact if anything their siblings needs and dependency on their parents have grown (and will continue to) rather than decreased.
My fourth child has definitely always had to take the role of big brother to his his big brother and to look out for him at school and help him with appropriate behaviors despite being 2 years younger. It has certainly shaped him as a person, he is old beyond his years and very astute, even teachers see this in him. He never switches of really though :-( he woke up yesterday and his first words to me were ‘ Mum, it’s distance week at swimming tonight, you mustn’t forget Owen’s inhalers’. Even at the start of his days he is thinking of what everyone else’s day will involve.
The children get told to be quiet a lot because noise annoys their brother and sister. They’re also used to being yelled at by their brother over nothing more than he’s tired and grumpy sometimes. Our 5 year old is still learning about her brothers ASD and what it means, that his disability isn’t as obvious as his sister’s. She LOVES to sing her way around the house, like a lot of 5 year olds do but this drives her brother with ASD to distraction and he’ll often end up screaming at her then running to retreat in his room.
She is also learning that although I may be a stay at home Mum I still actually have a job of sorts to do and I’m not readily available to attend all the family days her school host, I missed her first school sports day family picnic recently and she had to sit with a teacher.
This past year the children have had to endure my hands being tied a lot and with a lot of screaming from their sister and seeing her writhing and screaming in pain for hours each day.
They all appreciate that however hard it is for them at times that it’s always hardest for their sister, this is not to say they don’t find it extremely upsetting and difficult themselves.
Only when they grow up will I know exactly what they have made of all this, of their upbringing and of growing up with not one but two siblings with disabilities. I wish I could have protected them from more of the effects of disability but I could only do so much, even with help.
When I asked my 5 year old what having siblings with disabilities means to her she thought for a second then said ‘well it’s taught me to be kind and to care for everyone and that I am very lucky my legs and brain are OK’.
My catchphrase is ‘in a minute’ it’s what I’m always saying to my children when I don’t have a second adult or carer here to help me out. I sometimes lay awake at night with guilt that I’m not able to be the Mum I would like to be. That I’m often shattered and always short of time.
I hope that in the future when my children become adults they will feel lucky to have each other, that they’ll be there to support one and other. A time will come when I’ll no longer be here but at least I will have the knowledge that they will all still have each other. If I’ve failed in giving them anything else in life I’d like to think that them having each other will in some way make up for all the compromises they grew up with.
Every family is different, individual, this is just a snapshot of my families life and how my children are affected by me being a parent carer. There are other ways but this would be a very long post indeed!
I have been very fortunate in ways other parent carers or carers may not be. Many carers have no choice but to let their children take a more active/physical,/mental/emotional role in caring for a loved one. The magic safety net of ‘people coming in to help’ that people on the outside always imagine you have simply doesn’t exist. If you are fortunate enough to get help it’s usually in a very limited way.
I know of so many young carers, who quietly just get on with helping to care. It is so important that awareness is raised for young carers and that there is ongoing awareness and support for them.
It has been an honor to write this post as part of Caitlins Wish and the wonderful work Victoria does in raising awareness of young carers and IH (a condition her husband has) and I wish her and her family all the very best with all future ventures too :-)