The reality of being a stay at home carer to a disabled child.
Of course we carers are grateful to stay at home and still have our child to look after but a carer is literally all you become.
The mental health professionals’ advice is to talk but;
Nobody talks about the isolation.
Nobody talks about the loss of identity.
Nobody talks about the loneliness.
Nobody talks about losing your sense of self.
Nobody talks about how you had to give up your life and often your job to care.
Nobody talks about how you cry in the shower out of sight of everyone else because your day was overwhelming.
No one understands why you put your hand on your child’s tummy when they are asleep to make sure they are breathing.
No one understands the pressures of making sure they have all their medication and are given it at the proper times and proper dosage despite frequent changes.
No one understands the medical procedures you must learn and use daily to keep your child safe and healthy.
No one understands the scrutiny you are put under by professionals involved with your child.
No one understands why you only get 4/5 hours broken sleep every night even in the rare event your child sleeps all night.
No one understands why you’re always tired.
No one understands why you’re irritable.
No one understands why you need a mental break.
No one understands why you’re aggravated by your other children.
No one understands why you cannot take an active part in your other children’s schools.
No one understands why after you have been home all day your house is not spotless.
No one understands why you need just 5 minutes on your own.
No one understands why you’ve lost your sex drive or self-confidence to meet a partner.
No one understands why you are completely and utterly exhausted after all, you just sit at home all day.
No one understands the feeling you have when you are told you don’t have a “real job.”
NO ONE UNDERSTANDS!
Most of us carers have been in employment but gave it up to take on our caring role. When we gave up our job we also gave up our social interaction with other adults outside the family home.
I cannot tell you how many people have said to me “You have too much time on your hands. I wish I could stay at home all day.” I can guarantee after walking in my shoes for a couple of weeks they would soon change their minds.