Every parent knows how debilitating it is when you have a newborn who wakes you up multiple times every night. You find yourself begging the baby to give you just a bit more sleep. As the weeks wear on, you stumble around numb and incoherent.
Now imagine doing that for more than 20 years.
Our son, Deane, has trouble swallowing. He gets all his food through a g-tube directly into his stomach. But that does not deal with the saliva he produces. When he is upright, it is much easier to control. He can manage some of it and some of it dribbles out of his mouth. When he is lying down, it’s a different story.
The saliva and mucous pool at the back of his mouth creating the real possibility that he will aspirate it and develop pneumonia or worse it will sit there blocking his airway.
Every night we put him to sleep on his side, hoping gravity will prevent the liquids from pooling at the back of his mouth. Despite pillows propping him up and an adjustable hospital bed to keep his head elevated, every night he ends up on his back with stuff pooling at the back of his throat.
So we sleep listening for his breathing, coughing and gagging. On average, it’s 3 – 4 times one of us gets up and suctions the stuff out of his mouth and rolls him back on to his side.
For almost 21 years this has been our reality. We sleep while part of our brains are alert, listening for him struggling to breathe. Every night – no weekends or holidays off.
We’ve looked for help – for Deane’s health and ours.
We are supposed to receive 9 hours of personal support for Deane from the government. The workers (PSWs) who provide that support won’t suction and don’t work nights.
We would only qualify for nursing care if Deane had a tracheotomy. Parents, I was told, are trained to deal with anything less complex – regardless of how taxing it is on our health.
Yes, we have been trained to suction our son. We could train PSWs, many of whom have nursing backgrounds, to suction him. Unfortunately, at the going rate of $19/hr, we could not afford to have a PSW work overnights. Few parents have $152 a night and definitely don’t have the $39,520 a year for five nights a week.
I’m not sure what the solution is. More flexibility on the part of the home-care agencies that supply nurses and PSWs both in terms of their rules about who qualifies to provide this kind of support and their ability to send out people on short notice for even two or three weeks if person has a cold and is having a particularly difficult time sleeping. Maybe there needs to be a group of people, without a medical background, who could be trained – as are the parents – to provide some respite.
The current system is not working. It has been cobbled together over the years since the institutions that used to house disabled children were closed. The care of those children and now young adults has fallen to sleep-deprived parents who need partners to help find solutions that provide a better quality of life for everyone.