IN SICKNESS AND IN HEALTH

Of late, one of the major ‘talking points’ with parents of children with disability has been concerns with regard to caregiver burn-out. The phrase “in sickness and health” has no more significance than when it is put into practice, not just spouse to spouse, but parent to child. Put into practice not just through a bout of flu or recovery from a surgical procedure or other such malady, but for the long haul - often for life!

Since my personal experience has been that of living since birth with cerebral palsy, I have an acute awareness of what parents, particularly mothers go through on a daily basis — for days, month, years, decades;  sometimes, until the death of the child who may or may not to live into adulthood. My mother readily and without complaint, at least not much, charged herself with my daily therapies - lots and lots of it. There is no question she experienced cycles of burn-out but she kept on going. She ‘had’ to - there were 7 others who required her care and attention. I cannot imagine how life must have been for her. Now that I’m a ‘big kid’ I am able to reflect on those times and fully appreciate what she did and what she sacrificed in the doing.

Historically, the mother has been the nurturer and nowhere is this more evident than with the mother whose role has become layered with the learning of skills that go far beyond that which is often the ‘typical’ for new Moms. Caring for a medically fragile child is physically, emotionally, mentally exhausting. For some, it can be spirit-breaking and they are forced to make the difficult decision to surrender their child to the care of another (specialised foster care, group home care, nursing home care).

Those who are challenged from the moment they first draw breath rely immediately on a medical team to keep their bodies alive, but it is Mom who is the backbone of the whole scene and often goes for days without rest. She takes this nurturing/nursing/caregiving task away from the clinical setting and goes home with her baby who will never in his lifetime be independent of her and others threaded through the family dynamic. She asks for help and many hands are available — at least in the early days, weeks and months. Over time, the hands of both family and friends slip away. They don’t have time. They lose interest. They are embarrassed by their own healthy children and distance themselves. Alas, that does not change the fact that Mom still needs help and will always need help for HERSELF. She helps her child, but who helps her? 

Government funding agencies support a range of goods and services for a child with disability, but what is available for the caregiver, for Mom, the nurturer? Imagine for a moment moving 90-100+ pounds of ‘dead’ weight around from point A to B, not just once or twice a day, but several times a day! This is the routine of thousands of mothers and other caregivers, day in and day out, month after month, year after year! The human body was NOT meant to do that! The government needs to finally wake up and address the REAL needs of caregivers and not make it so difficult access to therapies and aides that will HELP them HELP their child.  A therapy tub might seem a luxury, but for a physically exhausted caregiver, it most assuredly is a NECESSITY. A one-time acquisition that will go a long way to ensuring Mom can keep on keepin’ on. Then there’s weekly massage that would relieve those aching muscles that are stressed beyond all imagination. 

Jumping through bureaucratic hoops is not something to which they should be subjected; that is a huge slap in the face when their at home care of their child with disability is saving the government purse thousands upon thousands of dollars a year. Compare that to the cost associated with a few ‘Mom specific’ therapy/health/wellness devices. It’s a drop in the bucket. It’s about time the government stopped raining on the parade and instead showered families in need, families in crisis, with the things that they truly should have and deserve to have to enhance the quality of THEIR lives, as parents/caregivers. After a much needed rain, the sun comes out again and a new day begins. If you’re a caregiver on the edge of that burn-out cliff, don’t be afraid to make ‘the call’. Shaking up the system may well be part of waking up the system.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca