Goals vs. Real Life



Ask any adult.  Life has a habit of playing with your hand of cards and changing your game.    Caregivers I would suggest experience that reality on steroids.  We make plans and then life, or our loved one, decides to change the rules.  Often.  In big ways. Learning to be flexible with myself and my personal goals has been a huge but important learning experience on my caregiving journey.


This morning I clicked the “accept” link for an offer of admission to a local doctoral program.  I am embarrassed to admit that this is the third time I will have registered in a doctoral program. Isn’t the classic definition of stupidity doing the same thing over and over but expecting a different result???


In the mid-nineties I completed a M.Sc. in Occupational Therapy.  I honestly never saw myself as an academic.   While I was a strong high school student, I was only a mediocre undergraduate student.  However I had the life-changing opportunity to earn a M.Sc. at Western University and there met some wonderful mentors who not only taught me to be a researcher, but instilled a sense of confidence in my abilities.  I will be forever grateful to these inspiring professors.  (I am looking at you JMP!).  I completed my MSc with plans to return and earn a doctorate in the not too distant future.


And return I did.  A few years and three children later I registered (for the first time) as a doctoral student at Western.  I knew juggling family and academic work would be demanding but working women did it all the time.  I could do this! I also knew that Matthew had been diagnosed with cerebral palsy, but I hadn’t yet wrapped my head around the medically fragile part of his diagnosis.   About a year into the program it became patently obvious that this was not the time in my life to take on a demanding advanced degree.  I can remember trying to work as I sat at Matthew’s bedside in hospital. It wasn’t sustainable.  I will never forget the telephone call with the academic advisor at Western.  I couldn’t speak I was crying so hard.

I ended up being at home living as a full-time mom/caregiver for about a decade.  While I missed my work I don’t want to suggest that that time was unhappy.  I had a decade of focusing exclusively on my kids and on Matthew’s needs.  I was able to function without the pressure of a job, which was a gift that I know many mothers would envy.


But after about a decade I knew I had to get out of the house if I wanted to maintain my sanity.  Along this journey I became pretty darn angry at God and established religion.  I decided to take some courses at the local seminary (affiliated with a local university) for interest.  Initially I did not see those courses as more than an interesting hobby.  However I found I liked theology and ended up completing a second Masters degree.  I also decided that I still had questions I wanted to ask and I enrolled in a doctoral program in theology (attempt number two) at a university over an hour away. What on earth was I thinking?!


For the most part I loved my time in this doctoral program. I learned much and had the opportunity to study and chat with some of the greatest thinkers exploring the topic of caregiving.  But as I began approaching the dissertation stage it became apparent that working  in isolation so far from the university was a liability.  I took a year leave to discern whether I wanted to complete the program rationalizing that at almost 50 years of age perhaps I could appreciate the journey of learning without actually needing the letters after my name.   I genuinely thought I was done.


But then I learned of an opportunity to finish my degree locally.  However there was part of me that felt that the idea of “trying again” seemed almost pathetic.  Didn’t I know when to give up?  But apparently I am thick headed because today I clicked that darned “accept” button.


I shake my head at all of this.  There is this chronic sense of anxiety that my journey was supposed to be that straight line even though rationally I know better.  As a caregiver who has tried to make Matthew’s care  a priority there was probably never any other way the story would unfold.  My narrative was always going to  be that really squiggly, dare I say chaotic,  line you see at the top of this post.  I hope that it is because of this squiggly line that my studies will be richer and the final accomplishment that much more satisfying!!!   I really hope I finish this journey.  But yet I know that if I don’t I will also be okay. I have learned that my goals and my real life aren’t always compatible, but that the story often turns out okay anyway.  And I have met some really amazing people on this journey so that alone makes it worthwhile.


But as I have said.  I really hope the third time is the charm!!!



Mundane moments: Laundry


I swear I was put on this earth to do laundry.  This was the pile that Matthew’s overnight caregiver left for this morning’s load.  For the record, in that pile under the comforter are two fitted sheets, two soaker pads, two pairs of pajama pants, one t-shirt, a towel, and a pair of sox.  In the end it will likely  be two loads of laundry generated by one person during one eight-hour night shift.  And it was a pretty normal night.


When we talk about the demands that caregivers live with we often talk about things like sleep deprivation, the need to manage medical routines and appointments, the demands of transfers and physical care, and the like.  We often don’t talk about the more mundane things that add to the chronic burden that can be extreme caregiving.  For me one of those demands has been wading through an obscene amount of laundry.  I often joke, that for me, my purpose in life was to manage laundry.  Lots and lots of laundry.

Matthew is incontinent and drools constantly despite having surgery to reduce drooling (to manage his aspiration risk).  This means that it is not unusual for him to require at least one change of clothing during his day.  Prior to his fundoplication, when his severe gastroesophageal reflux  remained poorly controlled, he would barf up to fourteen times a day.  All that projectile puke generated piles of laundry – linens, towels to mop up said puke, changes of clothing, bibs, you name it.  As an aside, there is no odour I hate more than the smell of puked Peptamen.  I swear Matthew (and me by extension) marinated in the stuff for more than a decade.


With kids like Matthew laundry is not limited to daily changes of clothing. Heck, that would be easy.  Matthew’s coat, mitts, hats, and so on are often laundered weekly rather than once or twice a season. Beds linens are almost always laundered daily.  Part of my morning routine most days is to strip Matthew’s sheets and change his bedding, including soaker pads (white pads we place under his butt for  damage control).  His comforter is usually laundered once or twice a week.  We also have to launder his wheelchair coverings once or twice a month because of, well, drooling and incontinence.   In an already very busy life these mundane chores can pile up and become overwhelming for many already overburdened caregivers.  And during stretches when Matthew is ill it is these mundane chores that are often ignored.  You should see my laundry room when a crisis hits.  You can’t enter.


So on that note the dryer just beeped.  I should go fold stuff.



Western University Talk

Several people have expressed an interest in reading the talk I recently delivered to occupational therapy students at Western University in London.  Conveniently the Waterloo Region Family Network published a link to an excerpt of the talk in their recent October newsletter.


For those who are interested, here is the link.  Be forewarned, it is a bit of a long read.


Click to access Extreme-Caregiving_The-Unspoken-Stories.pdf

Mothering doesn’t count.


A couple of days ago I was chatting with a friend who is the Executive Director of a non-profit agency geared toward supporting parents and families raising children with disabilities.  She mentioned that she had been recently asked to provide the name of someone who could speak to the issue of caregiving.  The agency requesting the speaker, to the best of my knowledge, was not looking for an international expert like Eva Feder Kittay, Jean Vanier, or Tom Reynolds. Let me start by saying that if they were I most certainly would not fit the bill.  Rather they were looking for someone who could speak with authority on the issue of caregiving.  The ED apparently suggested me to the agency and provided a brief list of my background and education.   The interested party declined stating they wanted an expert or professional, not a mother.


Really? Okay.  Let’s unpack this a bit.


First, the very idea that being a mother and the primary caregiver of a profoundly disabled child who is medically complex somehow makes me, or anyone like me, NOT an expert in caregiving is offensive.  Like, really, really, offensive.  Additional degrees and credentials should not be required to take the ideas and opinions of caregiving parents very seriously. As any parent in my position knows decades spent navigating complex, and at times hostile, social, educational, and medical establishments develops expertise very quickly.  Parents in my position are quite able to speak with considerable authority about caregiving.  Similarly many of us over the years have been required to become experts in behavioural management, medical care, educational inclusion, and so on, often more up-to-date about current research and practices than the involved professionals.  When it comes to a vast range of topics such as caregiving, disability, community living, and so on, virtually all seasoned and involved caregiving parents are experts.  FULL STOP.  Ignoring the experience and expertise gained via the lived experience of parenting and caregiving is condescending, patriarchal, arrogant, and often counterproductive to advancing the issues at hand.  The medical and health care community is beginning to wake up to the reality that ignoring the expertise, opinions, and ideas of primary parental caregivers can lead to troubling outcomes.


Before I go on, let me make it very clear that I do not believe that women and mothers should require any sort of advanced credentials to place considerable value on their experiences and expertise.  The world needs to listen to mothers because they can speak with authority on a broad range of topics, most importantly mothering and care.


But wait a minute.  Let’s carry on with this discussion for a moment.  To be fair, perhaps the agency wanted a more theoretical talk about caregiving.  You know, one that talked about current research and ideas in the area of caregiving – the sort of stuff that the lived experience might not always address.  Okay.   Conveniently,  I actually have both academic and professional credentials in the areas of caregiving and disability.   I have an undergraduate degree in occupational therapy.  I have worked clinically as a therapist.  I have two master’s degree exploring topics related to disability and caregiving via different lenses.  One degree is in sciences, one is in the humanities, meaning that I have explored the issues of disability and caregiving from a range of angles.  I am currently a doctoral student exploring and researching, wait for it, caregiving. This means that I spend a fair bit of my time reading and writing about caregiving.  I volunteer regularly with parental caregivers providing both 1:1 support, and group based support, allowing me to understand caregiving in a variety of contexts.  I have developed and taught courses at both our local community college and university.  I have spoken publicly about caregiving, most recently as the keynote speaker at a local university.  I like to think that I understand caregiving, both practically and theoretically.  But somehow, even though the local agency was provided with some of this information it wasn’t enough to qualify me as an authority on caregiving because I was a caregiving mother.


Why does being a mother discredit me and any experience I might have – professional, academic, or practical?  Why are the voices of mothers ignored? Why does being a mother discredit many women’s professional endeavours and valuable life experience?  Why does being a mother not count?  And on a more troubling not, why did being a mother count against me? Sadly, it is a question many mothers, in a variety of settings, ask themselves on a regular basis.  The voices and experiences of mothers are routinely ignored to the detriment of our communities.


Until key stakeholders understand that valuing the lived experience is an important part of truly understanding a key issue we will continue to live in a world where care and policies cannot truly match needs.  Similarly, until we begin to value the voices of the mothers who provide care behind closed doors our current caregiving epidemic will continue unchecked.