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 😉