Crushed

When B was young, I began investigating residential options for her, assuming she would live independently once she was a young adult. Now I don’t trust anyone else with her care, and I expect to look after her until one of us dies. I had a fresh start and a good life planned for us both.

But those dreams are being crushed.

I’m now under pressure to maintain the status quo, and continue providing care to two young adults for the foreseeable future.

This is unsustainable, and I do not believe it will be good for any of us.

But I am being made to feel selfish.

Did the people who insisted on the closure of all residential accommodation for disabled people realise the consequences? That very few are given the supports to live independently in the community unless they are extremely determined and able.

Most are still living with their families well after the age when they should have left, and whether the family home is suitable, and whether their parents or siblings are willing and able to care for them.

Disabled people should not be seen as a ‘burden’ on society, but that mantra should not be used to guilt trip family members to give up their lives to care either.

I am not a natural carer. I do not intuitively understand the needs of one of my young adults, I am not practical, repetitive tasks bore me, and being stuck at home makes me depressed..

I need variety, a job where I am valued, paid and appreciated, where I can use the skills I still have, be around other adults, and feel a sense of purpose and achievement.

But I’ll be 60 soon, and eventually it will be too late for me to make a fresh start.

I know I’ve made my bed and should lie in it, yada yada, but I shouldn’t be left there alone. I know that services are provided, and more are planned, but they don’t fix many of the fundamental problems. The enormous workload associated with managing the care of two young adults, which I may write about another day. The emotional, mental and physical toll. And the other stuff  – I’m trying to get help with the housework, house maintenance and the garden, but I keep getting let down or ripped off. I can understand now why so many old people’s houses are in poor condition: eventually you just give up.

I’m tempted to let it all play out, and let someone else clean up the mess. I’m done.

Note: Now I’ve let that out, I will try and write a cheerful post later, even though I’m beginning to resent the pressure to present a happy and cheerful face to the world and to my family. Because this is my blog, and you don’t have to read it 😉 

 

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26 thoughts on “Crushed

  1. You are NOT being one bit selfish! You need support for at least one of your disabled children, and actually for both! You are entitled to have a life too and for them to suggest you leave things as they are is an absolute disgrace.
    Shame on them 😦
    Aud x

    Liked by 1 person

    1. As you know there’s so much I no longer write about at all, and it’s not just about me – the current situation is not going to work for all of us, and I don’t understand why the services don’t see that, especially as the recent ‘disruption’ worked so well x

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  2. It’s very hard. My 14 year old is completely dependent on us for all her needs. Her health isn’t great and my own hasn’t been good over the past few years. Some days you just want to cry. If there was just a plan in place where you knew your very precious child would be looked after if you needed a break it would give you some hope. This government has failed our children and ourselves.

    Liked by 1 person

  3. Thank you for sharing your sadness and frustration. My heart goes out to you and I wish I could help. I care for my mother and I know how hard that is – I can’t imagine the strain you’re under with two, especially with B’s physical challenges. I hope relief comes in some form soon. Take care.

    Liked by 1 person

  4. You are being let down despite all the lip service and supposed policies, the help you need is either non existent or almost impossible to access. All we can do is sympathise but that doesn’t get you what you need. It’s commendable that you try to maintain a can do attitude but also important to acknowledge when things are not fair or not right and that you are fed up of it.

    Liked by 1 person

    1. Thanks for understanding. I really believe it’s important to highlight the difficult challenges faced by families raising disabled children else why would anyone believe the need for change?

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  5. I’m so sorry. And you should share the hardships as well as the happy moments. I know you won’t just give up and just let it play out because you couldn’t, because the B would suffer. So they’ve got you trapped and they know it. My heart goes out to you. xxx

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  6. I’m so sorry. This is just so horribly unfair to you and your family. THere should absolutely be supports in place, short term, long term, residential, whatever is needed, that’s the Government’s job to provide. And you’re under no obligation to post happy stuff or to reign in your posts if they’re too unhappy or whatever, you’re entitled to write about whatever you feel. The way disabled people are treated in Ireland is appalling there has just been cut after cut. I can do nothing but ask, as I always do, those canvassing at my door during elections what they’re going to do about it. To be honest so far over the years I’ve gotten a load of waffle and not much else on this issue, but I keep asking and I try to vote for the least worst party or the candidate that might actually do something other than throw you an extra fiver every now and again. I wish there was more your friends could do for you, I really do. xxxx

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  7. I am so sorry Candi. This gives me the whole spectrum of rage. You are absolutely NOT being selfish and please never feel the need to present a happy face: this is your space to say what very badly needs to be said. Love to you xxx

    Liked by 1 person

  8. You don’t have to be cheerful; I don’t think many in your situation would find cheer. Keep shouting and banging on doors, someone has to listen. Unfortunately when they think you can manage they will do anything to save money. It’s not right that people should have to fail first before help is given 😟

    Liked by 1 person

    1. That’s the conundrum, isn’t it? It happens to children too – if they improve in school with supports, their supports may be removed, and there’s a good chance they will regress again. Madness!

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  9. You just cannot be cheerful all the time, you have so many challenges, let down’s, battles, hope raised and dashed it is bound to get you down. You are constantly fighting the establishment to get what’s right, to put in place the services you and so many others badly need. You never give up. You have every right to let out your frustration on your blog, sometimes you just have to let it out, take a deep breath and maybe even scream. Then on with the smile and onwards we go. Huge hugs xx

    Liked by 1 person

    1. I find it really helps to let it all out on here, I don’t know why, but from the start of my blogging journey (for want of a better word!) 10 years ago, it’s something I’ve done fairly regularly 🙂

      Liked by 1 person

      1. I’m finding the same thing, you can open up with your words, let out what you feel and it doesn’t matter if anyone reads it. You’ve released it and that in itself feels good.

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