Tracy McGinnis is a mother of two boys, Declan (11) and Brendan Bjorn (15), who is profoundly disabled.
Diagnosed at one month old with congenital cytomegalovirus, which caused severe brain damage, Brendan has a myriad of health issues including “intractable epilepsy, severe cerebral palsy, unilateral deafness, intellectual disability, intestinal functioning issues, osteoporosis, scoliosis, lung disease, hip dysplasia and pressure sore issues”, his mum explains.
As a single parent, with no family in Ireland, Tracy bears full responsibility for her son's constant care.
Brendan attends school three days a week, but often misses a day or two per week because of illness or appointments. Each morning, Tracy administers five different medications to Brendan, changes his adult nappy – as he is doubly incontinent – dresses him, gives him his inhaler, brushes his teeth and packs his bag of supplies for school.
“Then, as I’ve yet to have a proper overhead hoist system put in the house as we are waiting on the modification grant to be approved by Wexford County Council,” Tracy explains, “I manually, which is very dangerous for us both, lift him into his wheelchair”.
“Everything as a single parent carer is exceptionally hard,” Tracy says. “We don’t have a partner to turn to when we would like to even go out for a walk to clear our head and recharge. If we’re sick or in pain, it doesn’t matter. No one is there to help carry the load of caring. When we go to bed at night exhausted and feeling burned out, there is no one to comfort us. Emotionally, physically, spiritually, it takes its toll all the way around.
That's not respite if a parent can't leave the house!
“People really don’t have the slightest idea unless they are walking in these same shoes. I wish to God that more people understood. Even doctors/GPs don’t understand. You hear, ‘well get out and go for a walk daily. It will help your health and emotions’. How are carers, especially lone parent carers, to do that when their child is bedridden or it’s lashing rain and you’d have to take your medically fragile child in the weather for a walk?
“The loco parentis rule the HSE has come out with, requires an adult stay in the home if a nurse is there to provide respite. That’s not respite if a parent can’t leave the house!”
Tracy is also acutely aware of the impact on her youngest son. “Declan sacrifices far too much,” she says. “If Brendan Bjorn is bedridden (he can only be in his wheelchair up to three hours a day) and therefore housebound, that means Declan is too. I can’t take Declan places when he wants, as he’d like – and as I desperately wish I could. When we are able to get out of the house with Brendan, it has to be somewhere we can wheel him. No hikes, no beach, no historical buildings or sites – and within a three-hour timeframe.”
Tracy’s worries extend beyond the here and now. “I worry a great deal about the future as my own health worsens and I’ve no financial security. When my role as a carer ends, I’ll be left in a state of grief while also knowing that I must find work after many years out of employment, as benefits will be lost within 12 weeks after he passes away.
“Professionally I’m no longer competitive or relevant. My health is not good now. I’m in chronic pain. I’m 54 years old currently. I’ve no savings, no pension.”
Carers “are suffering. We are burned out. Some of us even dream of getting sick and being in hospital just because it would give us a break from caring. How sad and telling is that?”
Read: When your child has a life-limiting condition