Who cares for the carers?

I have written a great deal over the last year about how isolating it can feel to be the parent of a child with special needs and I am certain that the stress of that experience impacts on the health of carers in many different ways. Being on constant red-alert, is bound to create anxiety beyond measure and having anxiety about the future may often stimulate depression too. I know that I personally try not to think much further ahead than a couple of weeks at a time, as imagining Joshua as an adult is just too frightening to contemplate, even though at 15 now, it is approaching and needs to be confronted. Carers often put their own needs after those that they are looking after and as such, they neglect themselves and their own well-being. They may not have the time to be physically active, to keep themselves healthy.

The stress and worry may cause parents problems sleeping, as well as disturbed nights as many children with special needs have difficulty sleeping. It is well documented that sleep deprivation can create both mental and physical health problems, so that alone may store up health issues. I am writing this at 3am as Joshua will not sleep tonight!  The demands of caring can be physical too, with lots of lifting , carrying and bending, which can develop into back problems as well as other aches and pains. I was once told by an Occupational Therapist that Joshua was heavier than the maximum recommended weight for me to be lifting, so I asked her what she expected me to do when I was home-alone with him and he had a seizure and fell to the floor?! She wanted me to leave him on the floor until he recovered and could get himself up, which I sometimes do, just sliding a cushion under his head and covering him in a blanket, but if we are in a supermarket, that is simply not practical.

Many parents of special needs children have low self esteem : they lose confidence that they can do little else other than care. Carers devote their lives to others and as such, they can feel that they are not worthy of any care or attention in their own right and they can become overlooked in society. Social isolation is a big issue as perhaps they are envious of the family lives of those with ‘normal’ children and they can start to find it difficult to socialise with those typical families, such that the gap grows wider.

Many parents give up paid employment to take up their caring role, so this could create financial worries as well as more isolation from others in the working world. Not everyone is as fortunate as I have been to have a flexible employer who can accommodate our endless hospital appointments during Joshua’s life, including some lengthy hospital admissions, and the occasional urgent need to drop everything and dash to school in the event of a seizure or injury.

For all of these reasons, and many more that I have not thought of no doubt, we need to take better care of the parents who have children with special needs. As if they are neglected, then they will become unwell and not be able to look after their children any more. I know from personal experience how valuable respite is as an opportunity to re-charge the batteries, to regain my equilibrium and to come out the other side, fighting.

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