What will limit our ability to care?


Those of us with complicated kids often know, deep down, there will be an endpoint to our ability to offer care at home. Many of us like to think we will be able to care for our kids well into adulthood, but in cases of profound disability that is both daunting and often unrealistic.

Many of know there will be an endpoint, but we are often left wondering what will dictate that endpoint.  Will we psychologically crash?  Will our child become physically or verbally abusive?  Will the medical care become too complex?  Will the sleep deprivation threaten to destroy us?  Will our spine crumble?

For me it will likely  be the last one.  My son is becoming increasingly heavy.  He is taller than me and weighs about 120lbs. My husband is 6’3″.  My eldest son is well over 6′.  My youngest son is taller than me as well.  I am doomed. The trained occupational therapist in me is loath to admit it, but I only recently stopped lifting Matthew solo. It was just easier to do so until my back and shoulders announced their retirement.

These days we use mechanical lifts for virtually all transfers, but that only  addresses one aspect of Matthew’s physical care.  Changing clothing, diapering, bathing, and repositioning him in his chair and bed all require lifting.  Pretty heavy lifting.  Ask your partner to lie on the bed and not help in any way.  Now change their clothes.  I promise you you will be lifting.  Add in the fact that you can’t really provide “bed-care” in a  way that is friendly to your back and it’s a recipe for back pain and injury.  Physical care is very demanding, and many of us parents have been lifting for decades without the lifting restrictions and protection that most workplaces demand.  You will find unpaid caregivers often performing physically demanding tasks that no reasonable workplace or employer would require.

I have had chronic back and shoulder pain for most of the last decade. The pain has a life cycle of its own and ebbs and flows, but it is never completely gone.  Pain is normal for caregivers like me, such that unless it really notches up I don’t even think about, nor do I really change my activity level.  I perform Matthew’s care, play soccer, attend karate, work on a computer, drive, knit, and read – all activities that stress the shoulders, neck, and back –  with chronic pain. It’s always there.  I only really notice it if it interferes with my sleep or notches up to the point I feel I need to take drugs of some sort. I know that this shoulder and back pain will only really get under control once I completely stop caring for Matthew, and all estimates suggest that we’re still a few years away from that happening.

As Matthew’s weight steadily notches up the scale I know, for us, that will likely be the end point in terms of Matthew’s ability to remain at home, and in our care. These are things society needs to know. That even if parents want to care for their child at home, it may not be possible.  Funding for out-of-home care will always be needed because there are very legitimate endpoints that are beyond our control.

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