Monday, 9 June 2014
What Will Happen When I Am Gone?
There is one secret fear that burns in the heart of every parent who has a child with special needs. What will happen when I am gone?
It is the natural way of the world that parents die before children. Generations after generations have followed this natural progression. Occasionally things go wrong and children die before parents and it devastates the parents and unbalances the natural balance of life.
However from time to time some parents wish their children would pass before themselves and it isn't for a selfish reason, in fact it is for a very unselfish reason. If they die first who will care for their disabled child who is now an adult and unable to care for themselves.
Every now and then you see news stories of parents taking the life of their child and then themselves and it is not uncommon to then read that the child had special needs. That parent was so desperate they didn't see any other way. They didn't believe that anybody else would love their child the way they loved their child. They didn't believe that anybody else would take the time and make the sacrifices that they had made to care for and love their child. They believed that their child would be worse off if they were alive without them and they felt they had only one option left but to die together on their own terms.
This is an understandable belief that all parents have. All parents feel this way when their children are children. Nobody can parent your child as well as you nor love them as much as you do. The problem is that our children with special needs grow up but we still parent them as we were when they were children because that is what they need and therefore those intense feelings do not go away.
It is a devastating turn of events when a parent double suicides but when you stop and think you really can't blame the parent for their beliefs because where is the proof that they are wrong. Where are the incredible care homes full of plentiful staff with realistic staff to client ratios so the clients are cared for as they would be in their own home. Where is the funding so care homes are set up as comfortable, homely environments where people can live meaningful, fulfilling lives to the best of their abilities with all their individual needs met and every effort made to improve that quality of life and ensure social interaction with the world at large.
Where is the social attitude that everybody regardless of their lot in life deserve comfortable appropriate housing full of every resource that each person needs. Why does society still turn a blind eye and pretend that nursing homes are only full of old people and not people of all ages requiring nursing care plus adults with special needs who require high care but not necessarily nursing care. Why does everyone think that nursing homes are sufficiently funded so everyone is living a comfortable, happy life? It's just not true.
Yes, you are right, there are some facilities set up for adults with special needs to live in. They have appropriate client to staff ratios and care is provided in a home environment. However there aren't enough of these facilities and sometimes what is available isn't suitable for the needs or wants of the person with special needs.
Every parent with a special needs child spends countless hours pondering the what will happen question. It scares us at night and bring tears to our eyes during the day. If your marriage has been fortunate enough to survive the test of a child with special needs then your child has two parents which will hopefully give them more time living at home but so often the stress of raising a child with special needs destroys the marriage. And then what happens as the parent ages and can no longer physically cope with the physical demands of caring for an adult who needs lifting, showering, changing, controlling, etc, etc, etc.
When My Little Angel was born one person announced that they were relieved she was a girl because now there was someone to care for Cameron when we were gone. I was aghast..Why couldn't a brother look after him as well as a sister but that sexism argument can wait for another day. The real reason I was horrified was because I didn't bring MLA into this world to be a carer. That isn't her lot in life. She is here to live her life and if that takes her around the world or just next door that is her life to live and she shouldn't be tied to her brother because it was her lottery win to be born with a brother with special needs. I hope, and truly believe that she will, care about her brother and look out for him and ensure he has a good life but it's not her job to physically care for him.
So then I come full circle back to the initial question - What will happen when I am gone? And still the question is unanswered and I am just one of thousands of parents asking the same question, and worrying the same worries and losing sleep over the same nightmares. We will of course make plans and hopefully create a good life plan for Cameron but what about the thousands of other parents who don't feel they can? What if there are no care homes available and what if the care isn't good enough? What if the home is a long way away and visiting is difficult and what if Cameron isn't happy? What if we can't find the money to make plans on our terms?
What will happen? We just don't know so for the moment we just won't die - problem solved.