Struggling to care…

Years ago I would read “inspirational” stories of carers and be in awe of how much of themselves they devoted to another person.

I would read of their struggles, the hospital stays, the sleepless nights, the physical and emotional strain and the total willingness with which they did everything and know that I was not reading a story about caring, but about love.

And that is my story.

My story is one of love.

I have heard people say “I couldn’t do what you do” and, whilst I know they mean that kindly, it is a comment which stings, because all I do is love my son. And he is easy to love.

Loving my son is easy.

Caring for him is often physically and emotionally exhausting but loving him is oh so easy.

Many carers will tell you the same. The struggles are not from caring, they are from the endless feeling that you have to plead, beg and argue for what little support you can get.

We couldn’t get our son’s need for a lightweight manual wheelchair met, so we found one ourselves. Likewise, when he needed a powered wheelchair to meet my health needs as well as his, we were left fundraising. Without the kindness of others we might still be housebound.

The school experience was not great so we home educate. It really is better for Adam and, even though it is not what we planned, we will continue with it because it is the best way to meet Adam’s needs. But we get zero support in this.

When he was at school the local authority funded two staff members at all times, just for him, because it was recognised that his care and learning needs required a very high level of support. This was in addition to the class teacher who was still responsible for his learning. The provision of two staff  was also meant to protect the carers – the risk of injury to them was high without two people working together. At home? Just me! Because I am apparently fine and it doesn’t matter if I get injured.

Therapy services are stretched well beyond what they can reasonably do. We are fortunate enough to have had some excellent physiotherapists and occupational therapists working with Adam over the years but they are stretched too far to provide the kind of service which I know they would like to offer. With physically complex children their allotted time is often spent arranging or altering equipment instead of working on new skills. A long time ago someone was going to work on self feeding skills with my son, but it didn’t happen. I do all I can, but there is a reason therapists have done all that training.

Physiotherapy exercises are shown to a parent but, when you have a complex child, quite often it takes two people. At school, his two staff were there to follow any programmes. It was classed as an educational need and met, as it should be.

Even when my back injury left me barely able to move, there was no practical help from any services. Despite the social care team knowing that the primary carer of a child who needs everything doing for them was struggling to move. I am very fortunate to have friends and family who did what they could to help but feeling dependent on others was not nice. And that hurts even more, because it gave me a sense of how my son might feel.

I have asked for an Education and Health Care Plan (the updated version of Statements for Special Educational Needs) and these plans are supposed to encompass ALL the needs of a young person. However, the first draft arrived and doesn’t even mention that Adam is a full time wheelchair user nor that he requires hoisting for all transfers.

Do I have the energy to battle for a document which will detail the support he needs when I know that they will do all they can to find ways to not actually give it?

Sometimes I drop a ball. Sometimes I forget to do things. Recently I even forgot that we had an appointment! Luckily it was at our home and with an excellent therapist who really does care and who actually understands the reality of our often complicated life and I know that she did not judge me for it. She knows that we are doing our best.

I can’t even attend a forthcoming meeting with a councillor about improving services for disabled children. It is in a café and children are welcome to come along, so it sounds very accessible…

Except there are no toilets that Adam can use at that café. So we can’t even be part of a consultation to help improve things for disabled children. Without a hoist and bench in the toilet, we can’t “go”.

And these things all make life so much harder than it needs to be.

And this is the difference between carers and services.

Some days I  do struggle to meet all of his needs but I keep trying because I want to be the best I can be for him, so that he can be the best he can be.

Whilst those responsible for the processes which could help seem to struggle to care at all.

 

 

 

 

 

Published by Ordinary Hopes

Cape-less Crusader, changing the world one toilet at a time.

22 thoughts on “Struggling to care…”

  2. I am in a similar situation. It is really so different in the details but exactly the same in the problem with getting support for my efforts. No one cares about me the caregiver in spite of all my efforts to do my job here. No one in the community care, agencies do not care, hotlines are abusive and or negligent but unlike you I have NO family and friends, and I am alone in the world with this work. It endangers my peace of mind and my own mental health. The silence is deafening. His own family does not care. The Clergy do not even care. Caregiver-support organizations do not care. Existing community organizations do not care. The medical/therapeutic community does not care. I need someone to call when I get overly challenged in this work and there is literally no one. I can’t leave or take a vacation. I am literally trapped. I don’t know how to go on doing this without some support and solidarity. Is anyone out there???? I will not read any more pamphlets when there is no one to really talk to.

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    1. I am very fortunate that I have a good network of friends and family.

      I feel for you, I really do. Carers are just people, we are not superhuman and we all have an end point of what we can take. A little support could make such a difference.

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  3. The funds for those resources that are so badly needed are dictated by the elected government, the government a minority of people have voted for. I think it’s important to encourage people to vote in their local elections to make sure that the government that’s in charge is the kind of government that cares about the issues you have raised. Change is definitely needed.

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      1. Which country are you in? I have been stunned recently to discover how little help is available to some families in the USA for equipment. x

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    1. I have saved the local authority a huge amount of money over the last four years. Home education is clearly the right thing for Adam yet the authorities don’t want to support it, despite not having enough specialist school places for those who want one. It is unfathomable really.

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    1. If only they would listen to us. The cost of a school place for my son would be massive, yet a few hours of support each week would enable him to continue with an education which works for him.

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  9. I can imagine how much that would hurt to have someone say they to you about your son, it may be a completely innocent comment but it wouldn’t be nice to always hear. Your son is still your son and anyone should love their child regardless like you do. When it comes down to it, they would do it if they had to.

    Jordanne || Thelifeofaglasgowgirl.co.uk

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  10. I can relate so much of this post! We are lucky in that EJ is flourishing at her school and that’s helped me with juggling therapists (I’ve also had a therapist turn up at the door when I’d completely forgotten about the appointment!) and fitting in all her programmes at home.
    General inclusion & accessibility is still an everyday struggle though.

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  11. Good for you to keep fighting. I honestly can’t believe how little help you are getting and why these people don’t seem to understand what you are fighting for. As parents, it is in our blood to do all we can for our children. #KCACOLS

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  13. Good for you for fighting his corner, that’s what we as Mums do isn’t it? I hope that you receive the support you need soon. Thank you for linking with #kcacols

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  14. I think all mums fight for their children’s best interests and that fight is powered by love. But some, like you, have a harder fight than others. It is a shame that those with the power to support you aren’t always engaged as they should be. I hope that this will improve. #kcacols

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  15. Pingback: Accessibility Stories 01.17 – our inclusive home

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