Left behind…..

IMG_1040Last week was really busy.  Wednesday evening I played soccer.  Thursday evening I attended a play with my youngest son and husband.  On Friday I ate my fill of spaghetti at our sons’ school’s annual spaghetti supper.  After dinner I watched our eldest play in the alumni basketball game.  On Sunday my husband and I shared soft baked pretzels while watching our local OHL team beat North Bay.  This upcoming weekend I will be away for an annual retreat of “special needs” moms.


There was a time in my caregiving journey where one of those outings in a six month period would have been a rare treat that required significant planning.  Multiple outings in the span of a few days were as rare as a winning lottery ticket.  It just didn’t happen.  EVER.   A weekend away usually required making a respite request at least four months in advance – so forget spontanaiety.   An evening outing required organizing a caregiver and planning for contingencies – which inevitably seemed to happen.  If I knew that I had a few activities on the horizon, say a weekend retreat AND a family wedding or gathering, I often had to choose between the two activities because of caregiving and respite restrictions. Remaining behind to manage Matthew’s care while others in my family attended events, and continued on with their lives, was a common theme.



I lived with these limitations for years.


While the first ten years of Matthew’s life was mostly a chaotic blur of caregiving and little else, there are a few significant memories that stand out.   One particular memory involves Canada Day fireworks.   We are fortunate to live walking distance from a fantastic local display of fireworks planned annually for July 1.  One particular Canada Day we had friends over for a barbecue and then planned to walk to the nearby open field that offered a great view of the fireworks.  As it turned out Matthew was having a lousy evening and as the evening progressed it became patently obvious that he was not going to be “up to” attending the fireworks.   So as dusk settled on our neighbourhood I watched our friends, my husband, and my eldest and youngest sons, head off to the fireworks.  I waved good-bye, walked back into the house, and burst into tears.  By the time the group returned a couple of hours later my pity party had ended. I had planted a smile on my face and was settled in the chair next to Matthew’s bed drinking tea and reading a book.  I don’t think the group ever knew how sad I was to miss the activity.


I don’t think it was missing the fireworks, per se, that really upset me as much as it felt like, once again, I was being left behind as I watched everyone else head off to have fun.  Feeling left behind was a common theme during that stretch of my life.  I often felt that everyone else in my world was heading out the door to live a full and adventurous life while I remained at home to provide care.   I lived with the chronic feeling that both the years, and many of life’s opportunities, were passing me by never to be recaptured.  While I loved Matthew and was devoted to his care, I struggled with regular feelings of resentment and almost constant feelings of isolation.  It wasn’t a fun time.


Which is why I found myself on Sunday reflecting on the relative busy-ness of my life as I drove home from the OHL hockey game.  This freedom to re-join a busy life is one of the great blessings that emerged as I was able to increasingly share Matthew’s care with others.  Our new model of shared care with a local group home allows Matthew to live a vibrant and busy life, while allowing me some of the same opportunities.


The radical restriction of caregivers’  lives is one of the concerns that I think requires attention moving forward as we think more and more about how to ensure people with disabilities are fully included in community.  While people with complex and severe disabilities live increasingly full and vibrant lives in the community, which is a wonderful and important development and I want nothing less for my son, we sometimes forget, that at times, inclusion comes at a very steep cost to their family caregivers who remain behind the scenes to facilitate that involvement.   There are moments that I worry, that for extreme caregivers like me,  it often becomes a sum zero game.  As my son’s involvement in community increased, mine correspondingly and significantly decreased.  I worry this is a common theme.


This isn’t okay.  We need strategies that not only promote the full inclusion of people living with disabilities in our communities, but corresponding strategies, supports, and resources to ensure that inclusion doesn’t come at the cost of a family caregiver’s isolation. This means that things like respite services, home care supports, community supports, and so on, are vital resources that need to be generously offered to people living with disabilities and their caregivers.  In cases of extreme caregiving I worry that caregivers will continue to be left behind as they wave good-bye to everyone else in their family.  It means that in these “left-behind” situations, we’re still failing at inclusion.  It just looks different.

I am guilty of being “okay”.


As most readers know, my husband and I began transitioning Matthew, our severely disabled 18-year old son, to group home living about ten days ago.  I say “transitioning” because while officially he is a resident of a group home,  he still spends a fair bit of time at home with us and I remain actively involved in all aspects of his care.


I expected to be devastated.  I expected to be non-functional for days.  Everyone who knows me and knows how committed I am to Matthew predicted my utter collapse.  My sons, Robert and David, anticipated that I would spend days moping around the house periodically falling into fits of uncontrollable sobbing.  Thus far that hasn’t happened.  I am surprisingly okay.


I have spent some time thinking about why I am okay.  During my bleaker moments I wonder if it is because I have become a callous, hardened mother who is resorting to a coping mechanism of muting my feelings in order to survive.  And while there is no doubt that on the day he moved I was more numb than anything else, I don’t think this is what has happened.   I think my coping is largely due to the fact that this transition has been years in the making and has been intentionally structured to be as successful as possible.  It also helps that I am working with good people at the group home who are equally committed to making this transition healthy and successful.


But then there is the guilt. Holy crap, do I ever feel guilty because I am okay.  While we spend a lot of time talking about ensuring caregiving mothers remain healthy, there is an alarming and deeply destructive undercurrent within our larger society that expects mothers of complex children to be a sacrificial group of untold resilience.  Society sends this damaging mixed message to overwhelmed, exhausted mothers that offers (token?) sympathy, while simultaneously expecting moms to be these sacrificial super martyrs who have virtually no limits.  In fact Facebook is inundated with inspirational stories (inspirational porn!?) that honours mothers who have set aside all sense of self in order to care for their child.


Stop and think about it for a moment.  How often do you see memes, or Facebook click bait that celebrates mothers of complex children engaging in self-care.   How often do we see a video montage of a mother of a child with complex needs taking a nap, attending a yoga class, reading a book,  or having coffee with friends, all while allowing someone else to care for their child?  I haven’t seen any of these on my my FB timeline!  Rather, I am more likely to see memes that comment on the difficulty of life and the supernatural ability of caregiving mothers to keep putting one weary foot in front of the other over and over and over and over…..as a sign of their utter devotion to their child.  It is unfortunate that we don’t also share the message that devotion to a loved-one can also involve self-care and self-preservation.


And while I know how utterly damaging and unrealistic these messages of seemingly superhuman strength are, it is hard not to take them to heart at times.     I find that during moments of self-doubt I begin to wonder if I am somehow less of a mother to Matthew because I am okay –  because I have taken the time and energy to not only protect Matthew, but to protect myself.  How freaking selfish can I be?


There is this nagging sense that if I was truly a devoted mother I would be destroyed by his leaving.  And that his leaving would have only  happened because I was utterly spent – having reached the utter finite endpoint of my ability to care.  The message that society subtly sends is that good mothers of complex children need to have reached utter collapse before entertaining the notion of allowing someone else to care for their child, and when that happens they are expected to be a sobbing mess unable to cope with the separation.   Anything less means a less than committed mother.


Years ago I promised myself that I would not allow that to happen.  I promised myself that I would not allow myself to reach collapse before I contemplated Matthew’s move to alternative living. I truly  believed, and continue to believe, that it is in  Matthew’s best interest that I remain healthy enough to manage the transition constructively.   And rationally I know that I am doing the right thing for everyone – me, my family, and most of all, Matthew.


But as I sit here and reflect on the messages of  weary super mothers scrolling across my FB timeline juxtaposed with my “okay-ness”, I find I am struggling with a profound sense of guilt.  Am I really a good mother if I have allowed someone else to share in the care of Matthew in a more significant and permanent way?  Can I really be a good mother if I am okay with this move???


Of course the answer is yes.  But I don’t just want a ‘yes’ for me.  I want  yes for all mothers out there contemplating how to care for their high-needs children over a lifetime.   I want society to not only celebrate when women work hard to care for their loved-ones. I want society to celebrate,  heck I want society to jump for joy, when women and mothers also work hard to care for themselves.



Morning care calamity and chaos!

With our new schedule Matthew returns home every other weekend from thursday evening to monday morning.  This means that on Friday and Monday mornings I do his morning care and get him ready for his day program.  Something I have been doing for years and could probably do in my sleep.


This weekend is the first where Matthew is home for his bi-weekly 5 day stretch.  This morning started like any other morning in my journey with Matthew.  At 7:30am  I went into Matthew’s room and started making noise and turning on lights to let him know it was time to get up.  I primed the feeding tube line, measured and administered meds,  dressed Matthew, and so on.


To transfer Matthew between chair/bed we use a ceiling track lift.  This handy device hangs from a track in the ceiling and allows us to lift and lower Matthew with a sling.  I have been transferring Matthew with this lift for years without incident. Heck, I am an occupational therapist (officially retired for the record)  trained in transfers. I have taught transfer safety and transferring techniques to clients, staff, and students.


But this morning Matthew decided that he didn’t feel like being cooperative.   A split second after I lowered him into his wheelchair seat he used his wheelchair footplates to launch himself half out of his chair and sling.  Rather than his bum sitting on his wheelchair seat, his shoulders were.  This was NOT GOOD.   He has never done this before and it happened so fast I couldn’t respond.  Because he was no longer safely contained within the sling I couldn’t simply raise him and re-position him in his chair.  For a split second I honestly didn’t know what to do.   I was stuck trying to sort out whether lowering him to the floor was safer, or whether trying to hoist him back up into his wheelchair seat made more sense.  Both involved me lifting 130 lbs of uncooperative, wriggly weight, and neither lift would be pretty.  Anything I was about to do would certainly earn failing grades in the lifts and transfers class I used to teach back when I still practiced as an OT.


I will admit that I stood there for a minute or two simply holding Matthew in place while I tried to sort through my options.  Lowering him to the floor seemed more dangerous.  He is long and lanky with arms and legs everywhere.  Matthew also has virtually no head control and I didn’t know how I could cushion his head while also managing four wildly wriggling limbs.  To complicate the situation the wheelchair was tight to the bed and there were lots of obstacles we could hit on the way down – bed, wheelchair, and bedside table.  Eventually I grabbed Matthew’s sweatshirt and wrapped an arm under both legs and hoisted him back into his wheelchair seat.  It took a few tries but I eventually got him back sitting in his wheelchair.


Did I mention I was home alone.  This was about 8:30am and the rest of my family was long out the door.


After the failed transfer, as I stood there trying to get my racing heart to return to its normal cadence, I reflected on the fact that this transfer was one of the reasons I have consented to moving Matthew to a group home.  While we still can (and do) care for him solo, there is no doubt that extra bodies are a good thing when it comes to ensuring Matthew’s safety, as well as the safety of his caregivers.  Indeed at the group home Matthew is a mandatory two-person transfer – with good reason.


This morning’s transfer was a brief reminder that we are probably doing the right thing by beginning to work through Matthew’s transition to a group home.


PS:  My back and shoulder are killing me!

From caregiver to mom.


So Matthew transitioned to group home living last week.  Despite the official change in his address he still spends a lot of time at home.  He was home for a few hours last night between his day program and choir activities.  Every thursday he spends the evening at home hosting a music therapy group and hanging out with family.  And as part of our transitional arrangement with the group home, Matthew will spend every other weekend at home – from thursday evening to monday morning.


During these “home” weekends I have organized a skeleton crew of support including night nursing and morning support on saturday and sunday.  In particular this skeleton staff ensures I still sleep at night, and builds in time for me to continue with my Saturday morning breakfast date tradition with my husband.   However from late morning to about 7pm on Saturday and Sunday time with Matthew is specifically reserved as family time, or “mom and Matthew” time.


In recent years, despite having a fair bit of in-home support, I still provided a fair bit of Matthew’s care.  I covered missed PSW and nursing shifts.  I provided care whenever Matthew was home sick, in the hospital, or was “grounded” because of equipment or van issues. I attended all organizational meetings and health professional appointments. I spent hours troubleshooting equipment and medical issues.   In short, I did a lot of the “work” of Matthew’s care, but often missed out on the fun stuff. Our evening staff would take Matthew to his plethora of activities which included choir, colour guard, swimming, music  therapy, and OHL hockey games.  On weekends nurses would spend hours in the community taking Matthew shopping, attending community events, and viewing the latest (appropriate!) movie.  I rarely participated in these activities because these windows of  time were my respite time.


So the nice thing about our new arrangement is that I have a balance of time when Matthew’s care is totally the responsibility of others, but there are also windows of time specifically designated as “family” and “mom” time.  These “Mom and Matthew” times have been intentionally structured to allow me to enjoy some of the fun outings with Matthew.   In the next few weeks I am looking forward to taking Matthew to see My Little Pony -The Movie (well, looking forward to MLP might be a bit of a stretch, but you get the gist), as well as taking Matthew to an OHL Rangers game.  Over the next few months we’ll spend Saturday afternoons visiting the butterfly garden, doing some Christmas shopping, attending Christmas parades, and exploring all the wheelchair accessible recreational opportunities KW and area might offer.  I am hoping from time to time Matthew’s brothers might join in as well.


While the idea of Matthew living elsewhere still feels very uncomfortable, I am aware that there is much about this living arrangement that might better nurture my relationship with my son and foster family time.  A big part of this new arrangement is that it not only provides time for me to enjoy Matthew, but also ensures that I have the energy to do so by sharing the demanding aspects of his care with others. Reflecting on this transition I am aware that group home living might ironically allow me to be less Matthew’s nurse and caregiver, and more Matthew’s mother.  And weirdly enough, that by allowing my son to live elsewhere, we might have richer family times.  Something I didn’t think would happen with his departure.  And I think it is for this reason that I am not, at least not at this moment, devastated by this transition, but hopeful and optimistic.



Since Matthew’s move to a group home last week I have spent a fair bit of time thinking about the notion of “being ready”.


The truth is, I was not ready for Matthew’s move to a living arrangement outside of our home.   We were perfectly happy with Matthew at home.  At this point of our journey raising Matthew we were coping well.  We had excellent nursing supports and generous access to respite.  I was still young enough, and healthy enough, to manage his complex and physically demanding care.  We had all the necessary equipment and supplies.  Matthew had been medically stable for over two years.  Things were good.  Indeed, the last two years were probably some of the most stable, least stressful, years of our journey with Matthew.


So why on earth would we we place Matthew in a local group home when we weren’t ready and things were going so well?  Because I know, through experience and observation, that this “coping” can vanish in a moment leaving families struggling and in crisis.  Personal illness or the illness of a family member, a sudden shift in nursing or personal care workers,  policy changes, funding changes, staff resignations, job loss – all of these can compromise the ability to care for a complex care child at home and/or spiral a family into crisis.  And I was worried that if I was in crisis I wouldn’t be able to make the best decisions about Matthew’s care.  It was inevitable that I was  going to have to let go someday, and I wanted to make sure, if I had the opportunity to do so,  I could work through Matthew’s transition when I had the time, energy, and optimism, to do it well.  This likely meant that I had to do so when a good opportunity presented itself, regardless of my readiness.


So why now?  Because a very wise mother of a complex child once told me that the best time to transition your child, if you have the opportunity,  is when it is developmentally appropriate to do so.  In other words, at roughly the age and stage of life when other young adults are transitioning to new living arrangements.  For us, we figured that would be somewhere between 18-22.


It often seems that parents of complex kids need a crisis – need to reach a place they simply CANNOT CARE – before they are often able to let go.  To complicate this scenario even further, the Ontario long-term care and housing situation is such that families often need to be not only “in crisis”, but “in extreme crisis”, before  placement might be realistically explored.  Our situation, where we can intentionally and gradually transition Matthew from home to group home, is rare, and I assure you we are grateful.   And even when families are in crisis it doesn’t mean that their loved one will be offered an ideal, or even appropriate, placement.  I could write a dozen blog posts about the housing crisis for young adults with complex disabilities in Ontario, and not even hit the tip of the iceberg.


Which is why we placed Matthew at a time when, honestly, it feels premature for me to let go, but is age appropriate for Matthew to move.


I was so not ready for this move. Truth be told, without a crisis I would likely never be truly ready.  So rationally I knew the fact that I wasn’t ready was irrelevant.  I knew I wanted to have the time and energy to invest in making Matthew’s transition as smooth and as healthy as possible, which meant that I had to do it when I wasn’t ready to let him go (ergo I wasn’t in crisis).


And really, what does being ready look like?  When my eldest left for university three years ago I wasn’t ready to let him go.  After all he was only 17, and had yet to develop all sorts of independent living skills in my maternal opinion.    But HE was ready to go and was prepared to develop necessary life skills as he needed along the way.  When any of us left home for university, college, or jobs, were any of us truly ready for the transition, or did we figure it out as we went along while our nervous parents watched in the wings?    We are often asked to let go before we are ready.  Indeed, it seems a fundamental part of parenting.


I often remind myself that Matthew is almost 19, and were he able-bodied I would have likely already moved him into a university dorm, whether I was ready to let him go or not.  And similar to the situation with his older brother, whether I am ready to let him go or not, it is my job to let him go and to then figure out what this life of parenting adult children, regardless of ability, looks like.





Yesterday my day started like any other.  I walked the dog, made coffee, and tossed a load of laundry, left by our overnight caregiver, into the washing machine.   I chatted with our morning nurse, and later in the morning, had coffee with friends – all of whom are moms of kids with complex disabilities.  In the afternoon I worked away at the proposal for my doctoral research.  Last evening I attended a meeting at my son’s school to learn about international trip opportunities for senior students.  My youngest is applying to be part of the European exchange and he’s pretty stoked.  In short, it was a day a lot like any other day in my suburban, extreme caregiving existence.


Except it wasn’t.  Yesterday marked the day that Matthew moved to a group home.


Because Matthew has been spending time at this group home for respite he already had a stash of clothing and supplies at the home.  Other than packing meds, we didn’t need to spend a lot of time yesterday moving him or his belongings.  Over the next month or so I imagine that we will spend some time making his bedroom more “him”, but yesterday Matthew was simply picked up from his day program, and instead of coming home he went to his group home.


People keep asking me how I feel. The truth?  I don’t know.  Right now I seem to be in that initial shock stage of grief.  At least that is the stage I learned about years ago in undergrad.  The stages of grief may well have been modified by now!   There is a sense of not feeling anything at all.  I can recite all sorts of rational reasons why this move is the the good and right thing to do at this stage of our journey with Matthew.   And honestly, that is what I have been doing when people ask me how I feel.  My guess is there will probably be a blog post about group home placements, transitions, and all that stuff, not far off in the future.  You all can look forward to that!


But feeling something?  Nope.  I don’t seem capable of that today.


One of the challenges of caregiving is that care providers spend a great deal of their time doing repetitive, unseen, physically demanding, and at times thankless, work.  Caregiving can start to feel like a hamster wheel existence of feeding, diapering, medical and physical care, and so on, where you NEVER, EVER finish work.  Caregivers provide this care because they love their family member.  After all, care isn’t just an active verb, it is a profound feeling as well.  But that doesn’t mean that the days aren’t exhausting, and often mind-numbingly, never-endingly repetitive.


One of the challenges I have struggled with is that my days often provide(d) no sense of a job well done.  We all, at some point or another, need some positive feedback in our life.  Getting up and tackling a demanding task is easier, if at the end of the day, you can look back and take some satisfaction in what you have accomplished.


Now that isn’t that I don’t feel good about my caregiving.  If I consider the last 18+ years of Matthew’s life I take satisfaction in the knowledge that my caregiving has largely kept Matthew healthy, and ensured he continues to enjoy excellent quality of life. Some days I can reflect back on the day and glow in  the happiness of a good day spent with Matthew.  There is no doubt that my caregiving has had a positive effect on his life.


But as most caregivers know, many days conclude with a sense of emptiness, exhaustion, isolation, and the knowledge that in a few hours you are going to get up (likely still tired) and do it all over again.  No one will say thank-you.  No one in the community will tell you that you are doing a good job.  Your caregiving will remain largely hidden and unappreciated.  You often don’t SEE the results of your work – beyond a great big pile of laundry.  Really, as a caregiver, you just survived another day.



Which is why my most recent monday was a gift. I got to see a task to completion!  I spent the day finishing up the staining of our cedar cottage exterior.  To keep the cedar planks of our cottage looking decent means that they need to be re-stained every five years or so.  This past summer, as the staining chore dragged on,  I threatened to slap aluminum siding on the cottage so we could forego this ritual.  My husband told me I could do that over his dead body.


In order to get the staining done my husband and I took turns heading up to the cottage separately.  Matthew’s weekend nursing schedule these days was such that finding a weekend we both could be up was impossible.  We did find one monday to be there together to tackle the two-person jobs.  But for the most part one of us would head to the cottage for a day or two and spend a decent chunk of the day with a paintbrush in their hand.


This past monday I went up to tackle the “ends” of the cottage since they were a job my shorter stature could handle without climbing tall ladders – something my husband and I prefer to avoid when solo.  At about 2:30pm I put the last few splashes of stain on the side of the cottage and I realized I had reached the end of the cottage.  And it felt GLORIOUS.  LIKE AMAZING!!  I cannot tell you how excited I was to be able to stand back and see the results of my work.  I know.  WEIRD.  But there you have it!!!!  I was positively giddy.


And it occurred to me that that my elation was likely in part due the fact that the last almost 20 years of caregiving has offered little opportunity to see a task done to completion, and to get to celebrate that conclusion. Years of demanding, never-ending caregiving meant that I had rarely reached the end of a task.  There was/is always more of the same waiting for me tomorrow.  Similarly, as a PhD student, I spend a lot of time reading and writing and only produce a finished project once, or twice, a year.  Some days I measure progress in sentences written and little more.   And I am aware that as I move to the research and dissertation stage of my degree the length of time to produce something that is “DONE” will only lengthen.


Which is why it was fantastic to tackle a chore where I could see, and celebrate, a finished product at the end!  And also lament my terrible selfie taking skills!!!