Caregiving sucks.

Caregiving sucks.

 

There.  I said it.

 

I was thrilled to see the Huffington Post article (link posted at the end of this post) hit my facebook feed this morning.

 

Short version of the article – caregiving sucks for lots of well-documented, very valid reasons and it is okay to say that.  Saying that caring isn’t much fun does not mean we love the person we care for any less.

 

As I have said a million times on this blog, it is non-caregivers who often paint caregiving as a rewarding, spiritual, gift-laden journey.  My response to that comment is that is it not the caring, but the relationship with an important other that is rewarding, spiritual, and gift-laden.   I don’t know about you but I haven’t found the last two decades of sleep-deprived, stress-laced care a picnic.  I care because I have to.

 

As the article suggests, performing demanding, exhausting, isolating, career-killing, injury-risking care day-in and day-out care for decades  – yes, in my case we can measure my caregiving in decades – ain’t a rewarding journey.   Painting it as a rewarding journey simply serves non-carers well.   Because if I am on this rewarding journey then I don’t need help, do I?  Painting caring as an ultimately rewarding journey lets the rest of the world off the hook.

 

I love my son and it is for that reason alone that I have spent the better part of the last two decades placing his needs above my own.  But just because I love my son doesn’t mean that I need to celebrate that I sometimes spend more time changing (adult sized) poopy diapers than I do engaging in my own self-care.

 

So you know what world.  If caregiving is such a fantastic deal I have an offer.  Come on over to my place.  I will private message you my address.  And for free you can spend a few weeks engaging in the spiritually-laced, infinitely rewarding journey of caregiving for a profoundly disabled teen who requires 24-7 care.  I will stand back and let you change diapers, and dress and transfer my 120lb son.  I will give you a crash course in g-tube care, seizure management, medication administration, and so on,  and I will stand back and let you vent stomach contents so you can get the full experience.

 

My theory is that after a few days of this experience lucky participants might be more willing to support more comprehensive home care and greater caregiver supports for those of us who spend the better part of our adult lives as extreme caregivers.

 

 

http://www.huffingtonpost.com/entry/no-caregiving-is-not-rewarding-it-simply-sucks_us_57621b3ce4b0df4d586f45a2

 

 

Breast feeding and trigger warnings.

Most mornings I take a few minutes and scroll through my Facebook feed.  I enjoy seeing what my friends and family are up to and I usually stop to read a handful of the interesting news and general interest articles  that appear on my timeline.   As a rule I make an effort to read articles that not only support my particular worldview, but also contradict my thinking.  I may not always agree with what is being shared, but I believe it is important to make an attempt to hear dissenting voices.  My husband is often entertained by my behaviour when I read any pro-Trump articles.

These days many articles come with trigger warnings. Trigger warnings, of course, inform a reader that the content of the article might be upsetting and for what reason.

 

Yesterday I was reading an article authored by a self-proclaimed “crunchy mama”.  Among the many topics covered in the article was  the “breast is best”  message preached with particular fervour.  By the end of the article, I found myself really wishing there had been a trigger warning.  I might have skipped the article if I knew the emotional firestorm reading an article that mixed a heavy dose of guilt and judgment in with the pro-breastfeeding message would precipitate. But articles advocating breast feeding are so mainstream and considered so affirming that the very idea of a trigger warning would seem absurd to most writers covering the topic.

 

I started my parenting journey equally convinced that breastfeeding  was the best.  I breastfed my first son. And while I like to think I wasn’t judgmental I am pretty sure I was less than sympathetic toward new moms who chose bottle feeding, or who offered “excuses” for why they didn’t breast feed.

 

And then life smacked me in the face and I learned a pretty important lesson about judging others and supporting other moms on their particular journeys and with their particular choices.

 

I really wanted to breastfeed my second born.  I loved the bonding I experienced breastfeeding my first son.  But as most readers know, my second child suffered a “catastrophic birth injury” and has lived ever since with a range of complex issues.

 

One of the challenges of parenting a child with disabilities is that you don’t necessarily know the extent of the disabilities early on in life.  When Matthew was a newborn he didn’t look profoundly disabled, he looked like a newborn. Since newborns generally don’t sit, walk, talk, and so on, the full extent of his disabilities weren’t yet evident and wouldn’t be for years.  Sure, we knew his birth history suggested that he would have disabilities of some sort but hope can blind even those of us who are  health professionals and should know better.  Yes, the professionals had told me that cerebral palsy was a likely outcome, but at that time my vision of cerebral palsy did not include a child who was non-verbal, living with a feeding tube, and so on.  For many years I lived in a form of denial that painted a much more optimistic prognosis for my son.  Can you blame me?

 

The idea that my son could not physically breast feed was not something I even considered.  Upon our discharge from the hospital Matthew and I took up residence at the breastfeeding clinic at our local hospital, where, and this is the kicker,  the staff had his chart and knew his birth history.    The staff that was “supporting” my breastfeeding journey knew that my son was at very high risk for feeding problems.  Despite this knowledge I had breast feeding advocates remind me that all babies can breast feed (spoiler alert: not true!).  I even had a nurse tell me that breast feeding was so miraculous that it can trigger neural plasticity and possible healing.  That comment, in hindsight, bordered on cruel in my current opinion because it became the foundation for all the guilt associated with failing to successfully breastfeed my son.  That particular message conveyed that if I could only  breastfeed Matthew I could start undoing the brain damage he suffered.  As a health professional I should have known better, but I was a new mother blinded by hormones and desperate hope.  I would do anything to try to improve my son’s prognosis.

For eight weeks I lived at the breast feeding clinic. All.  The. Time.  At the clinic I had nurses and breast feeding advocates, all of whom were utterly convinced that every baby could breast feed, try to analyze what I was doing wrong.  Because, you know, I must be doing something wrong if breastfeeding wasn’t going well.  The breast feeding advocates had me try every trick in the book.  I tried every few hours to feed my son and usually these sessions ended with me in tears pumping breast milk I would later feed to Matthew via a bottle. Which, by the way, he would choke down desperately trying not to aspirate.  Matthew was losing weight, was hospitalized at least once, and screamed constantly.  Things were pretty awful.

Seventeen years later I still mourn the loss of those early baby bonding days that many mothers talk about.  They didn’t happen for me. It was all about survival and tamping down my feelings of failure, guilt, and shame about not being able to do something as basic as feed my child.  Clearly I wasn’t good at this mothering thing.

After about two months of being told that it was just a matter of time and my son could breast feed I was beginning to reach my breaking point.  I hated the nurses and breast feeding advocates that kept spouting the party line of “breast is best” that heaped guilt upon my exhausted shoulders.  I was angry that I was constantly told that if I only did this or that my son could breast feed and that breastfeeding would, of course,  be in his absolute best interest “given all that has happened”.  The several-times-a-week breastfeeding sessions seemed less about trying to assess the problem and more about barraging me with the message the breastfeeding was the only acceptable way to feed one’s child  and that “giving up” was failing your child.  It started to feel like the team’s commitment to breast feeding somehow compromised their ability to truly assess the situation.  Knowing that the team knew my son’s birth history complicated the situation.  If the experts were convinced that my son could breastfeed even while knowing his eventful birth history then I felt I had no option but to keep trying.

 

As it turn out the experts were wrong.  Finally, after two months of trying everything that was thrown at me one of the breastfeeding experts finally sorted out that Matthew couldn’t breathe and eat at the same time. His oral motor skills were sufficiently impaired that he couldn’t coordinate the milk in his mouth with a swallow.  I was told to abort all attempts at breastfeeding and to bottle feed full-time in a desperate attempt to get Matthew to begin to gain weight.  It was only a matter of time until my son was switched to a feeding tube full-time.  In short, not only could my son not breastfeed,  he does not have the physical ability to eat or drink.  To this day I am amazed it took the experts two months of watching me struggle and my son fail to thrive before they could reach such a conclusion.

 

This all happened 17 years ago and yet I still harbour great anger towards breastfeeding advocates who are so blinded by the “breast is best” message that they fail to see that some babies and/or mothers genuinely cannot breastfeed. The guilt and judgment that was heaped upon me during the two months I attempted to establish breastfeeding were overwhelming.  During my attempts to establish breastfeeding there was a clear message that if I switched to bottle feeding I was clearly giving up and failing my already compromised child.  There was an absolute expectation that a mother should resort to extreme measures to establish breastfeeding with little sensitivity to, or even awareness of, context.

 

To this day I cannot read “breast is best” without getting angry because I do not believe it is universally true. I know firsthand that for my second son breastfeeding was physically impossible.   Breastfeeding for many mothers is a wonderful experience.  It was for me with my firstborn.  And yes, there is no doubt about the great benefits of breastfeeding for baby and mom.  But what would have been BEST for both me and my son was sensitivity to what was evolving into an overwhelming parenting journey involving a medically complicated child who could not eat.  What would have BEST was a team that could dispense with cliches and blind agendas and could truly assess what was going on with my child.  What would have been BEST  was professionals and a general public that supported my parenting decisions without guilt and judgement even when their parenting decisions differed.

Screw “breast is best”.  This mothering thing is hard work.  Supporting mothers to be the best parent they can be is BEST.

 

Should I stay, or should I go?

If you were to ask me to list the things I find stressful about parenting a medically fragile child it would probably be a long list and I am not entirely sure where I would start.  But one of the things I know would be on the list is the stress of chronically living with more questions than answers- of not knowing, often,  what to do, or how to proceed while simultaneously faced withe knowledge that your decision can have serious consequences.  Today has felt like one of those days where I am grappling with the not knowing more than usual.

 

On more occasions than I care to count Matthew has presented as “off”, or “not quite himself” immediately prior to a respite admission or a family holiday.  At times I have been convinced there is some sort of conspiracy theory going on.  The catch, however, with a kid like Matthew is that these moments can be nothing more than he is annoyed with your ongoing choice of cartoons on television, or they can precede a significant health crisis that lands him in the ICU, or they can fall somewhere in between and resolve with time and without much fanfare.  You just don’t know and it can be difficult to guess.   I take some comfort with the fact that trained health professionals get it wrong with regularity.  And, not knowing what to do makes it difficult to plan a life.  Should I admit the kid to respite and proceed with my own plans, or should I err on the side of caution and keep him home and cancel everything.  The latter, of course, is the logical answer.  But, if we did that every time Matthew looked “off” we would never go anywhere or do anything which is not in the best interest of our overall family health.  Over the years we have struggled to find that balance of making the best possible decisions for Matthew’s health while also trying to protect the family, the marriage, and in particular my sanity as the primary caregiver.

 

Since leaving the ICU two months ago Matthew has looked great.  He has been happy and healthy and enjoying a broad range of outings and activities.  And then this week, just prior to a weekend respite admission (of course), he started looking “off”.  In the last 24 hours we have had the classic presentation, for Matthew, of irritability and/or distress and GI symptoms.  CRAP.  (Literally).  Things seem to be settling, and his irritability is intermittent,  but I now find myself struggling with whether we send him to respite for the weekend, or keep him home.  On one hand if he is going to be miserable simply for the sake of being miserable for the whole weekend it might be nice to let someone else deal with him, particularly if there is nothing any of us can do.  Sometimes it is healthy not to torture myself with his distress and having a break from a screaming kid is a good thing.  However, if something is brewing sending him to respite and to caregivers unfamiliar with his routine can be problematic.  And then there is the fact that perhaps all the kid needs to do is poop, with some help, and he might be fine.

I started writing this blog post this morning, and is often the case, have worked on it off and on throughout the day as I deal with Matthew.  I spent the day waffling with my decision and uncertain how to plan my weekend.  Was I going to the cottage, or was I hanging here with Matthew? Should I pack, or not? Should I go grocery shopping for cottage supplies?  Matthew is now home from his day program and laughing hysterically, so as far as I am concerned the kid is going to respite and I am outta here in a few hours!

 

With any luck things will remain calm.

 

 

 

Talking about death: Fully living life.

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Canada is knee deep in the discussion about how to implement medically assisted death for terminally ill, competent adults who choose to end their life because of self-defined, intractable suffering.  The ensuing debate is complex and heavily nuanced.  One significant concern voiced by people with disabilities is that many in our society conflate disability with suffering, and as a result, people with disabilities have deep concerns that disability will become an appropriate criteria for requesting medically assisted death.  This is a legitimate concern and one I may take up at another time – but not today.

 

I will admit that I see the ensuing conversation a bit differently. As a rule I think open conversations about life and death can have unexpected positive results and I am hoping that the ongoing debate about death and suffering might actually encourage people to think more intentionally about life and living.

 

Living with a medically fragile child means that I have witnessed intractable, poorly managed suffering much more than I would have liked. I have first-hand experience with how ill-equipped at times our medical community  can be with handling such suffering. There was about a year of Matthew’s life where I genuinely questioned whether we were doing the right thing by intervening to the extent we did. During some of my darkest moments I wondered if his death would be a blessing. It is brutally difficult to watch someone you love suffer, particularly when that person cannot articulate or influence their suffering in any way. As a cognitively impaired, non-verbal child Matthew simply had to endure his suffering. It was awful.

 

I have often stated that while I worry about Matthew’s death, bearing witness to his ongoing suffering terrifies me a whole lot more. One result of my journey with Matthew is that I find I am sympathetic to the assisted death conversation and a person’s right to choose. I can understand how someone might wish to place limits on their suffering, however personally defined, and I can appreciate that by establishing such boundaries the individual might feel more able to live fully amid life limiting situations.  Because as far as I see it, living fully and how that is personally defined is an important part of conversations about death.

 

As the parent of a medically fragile child I have spent much of the last 17 years knowing the shadow of death lurks in the immediate vicinity. It is a pretty scary feeling. But living with full awareness of Matthew’s medically fragile status means that I am much more intentional about the life I create for Matthew, and by extension, I am also much more intentional about decisions regarding my own life. As people receiving palliative care will remind us, when you live in the presence of death the sometimes-surprising result is that you may live life with much greater abandon. Being aware of the finitude of our lives can actually be a great gift because it means we are less likely to take that life for granted.

 

In my opinion, this whole assisted death conversation provides an excellent opportunity for all of us to spend time clarifying what “quality of life” looks like for each of us. The current conversation about death and suffering, while frightening, can demand that we fully consider what living life to the fullest looks like. As Matthew’s mother I have learned that honest conversations about death, illness, and suffering (the kind I have with some regularity) have the unexpected result of encouraging me to live more fully and in the moment. I  am blessed because I live with the constant awareness of the profound gift of life.

 

The medical community predicts that Matthew will die before me. I say this knowing full well that people outlive their life expectancies all the time, and for my son’s sake I hope with every fibre of my being that he does. However living in the shadow of death means that while I will still no doubt grieve my son with abandon if he predeceases me, I will also be able to say good-bye to him knowing that I did everything within my power to ensure that his time here on this earth was lived to the fullest.

 

So perhaps as we approach this all-too-uncomfortable conversation about suffering and death we might wish to remind ourselves that such chats, while difficult, can have unanticipated benefits in terms of living.

Of hummingbirds and daisies.

 

I spent this past weekend unpacking our cottage.  We have recently had a fair bit of work done to the place to make it wheelchair accessible for Matthew.  Prior to the arrival of the contractors we were asked to pack everything away so they could rip and demo with impunity.  As I packed the cottage contents in anticipation of this work I purged what I thought of as the previous owner’s “clutter”.  But I found that as I unpacked the cottage this past weekend I was setting aside yet more piles for the local thrift store.  In fact I think I purged more this second time around than I did during the pre-reno packing.

We are the second family to own this cottage.  The previous owners built the place from scratch back in the sixties and owned the cottage for 50+ years.  It is a classic Bruce Peninsula cottage with all the corresponding charm.  The matriarch of the original family passed away a little over a year ago, well into her eighties, and the remaining family decided that their cottage era had ended and listed the place for sale.  Given the often very emotional attachment one can have for a family cottage I can image it was a heart breaking decision to finally sell the place. In many ways a cottage is not about the property, but about the memories that are created under its roof.  The sale of a family cottage in many ways truly ends an era and can be a grief filled moment.  However the adult children of the original owners, themselves now retired and looking to travel, sold the place to us after removing one or two treasured objects from the cottage and then handing us the keys.  Literally.

When we arrived at the cottage it was full.  Like full! The beds were made, knick-knacks were on shelves, the game cupboard was fully stocked, and there were even stuffed animals on the beds. Heck, there were spices on the spice rack and books on the bookshelves.  Walking around the place those first weeks after we picked up the keys was a lot like a treasure hunt.  You never knew what you would find and there was some pretty cool stuff.  The “fart” playing cards were a big hit with the kids!  So was the shoebox of vintage Matchbox cars.

A great many of the items left behind were incredibly useful and saved us a ton of money we might have had to spend stocking the place.  We didn’t have to buy furniture, towels, kitchen supplies, and so on.  But the place also felt quite cluttered – full of knick-knacks and cottage kitsch that wasn’t “us”- and LOTS of it.  In particular the place seemed full of items emblazoned with loons, hummingbirds and sunflowers.   Everywhere. This past weekend I packed many of these item into boxes and donated them to the local thrift shop.  Many are quite lovely and will bring someone some joy.  They just aren’t me.

However while the kitsch I was boxing up wasn’t me, it became increasingly obvious that much of it had been very special to someone and communicated a great deal about the woman she had been.  The treasure hunt evolved in a new manner.  As I wrapped and packed I became increasingly aware of the fact that I was boxing up 80+ years of a woman’s history.  For her this “stuff” likely hadn’t been dust collectors but were souvenirs from holidays and gifts from loved ones.  And as I packed I got to know more about the woman who loved this cottage before I did.  Based on her magnet collection that covered the fridge she travelled extensively.  Perhaps as her travelling wound down in later years family kept with tradition and brought her back fridge magnets when they travelled.  I kept some that I liked, but purged the rest.  The cottage had sunflowers everywhere – on vases, dishes, mugs, towels – everywhere. Obviously sunflowers were special to her.  I also know the matriarch loved the Bruce Peninsula as evidenced by  her book collection.  I think the cottage came stocked with an entire library covering anything one might want to know about the Bruce.   I also know the owner didn’t cook as evidenced by the one cookbook the cottage contained.  This absence of cookbooks was particularly curious given the abundance of books the cottage otherwise contained.  In the end it seems that loons, hummingbirds, and in particular it seems, sunflowers, occupied some special place in the previous owner’s heart.

We’ve kept those items that seem to belong in the cottage, and some that honour the woman who lived here before us.  But while we want to honour the original owner, it is also time to start filling the place with our memories and the things we love. I had to laugh since it seems that in many ways I am much like the previous matriarch.  She adored sunflowers and hummingbirds, so I chuckled as I replaced her items with the ones that I love – items decorated with daisies and owls.   I replaced her travel fridge magnets with the owl magnets someone gave me for Christmas, and the funky owl magnet/pencil a friend found.  Her sunflower cups were replaced with an owl teapot.  Her stuffed loon was replaced with the stuffed owl that sat atop my Christmas stocking this past year.  Her sunflower emblazoned crockery was replaced with some vintage bowls sporting daisies that I stumbled upon at a rummage sale.  The furniture is now draped with afghans made by myself or someone love.

In the end the cottage is evolving into an eclectic mix of Dodie E. and the MacGregor Clan. I like it that way.

Bessie and the Beast

Matthew moved from what is called a wheelchair-stroller to an actual wheelchair when he was about four years old.  This transition created a problem since his wheelchair, unlike the stroller, was not compact enough to fit in the trunk of our trusty Toyota Corolla.  Panic ensued and we quickly purchased a second hand, oversized van previously used by a group home.  The van was huge, but equipped with the necessary wheelchair lift and tie-downs we would need if we wanted to go anywhere.  And since I often struggled (and struggle) with cabin fever, and if I am honest, a healthy dose of resentment about our constrained life, getting out was a priority for my sanity – and likely my son’s as well.

This hand-me-down van was also cheap, a necessity at that particular stage of our life.  Did I mention that it was also hideously ugly.  And huge.  Did I mention huge? Wow, was it BIG!  My verbal kids who were fairly young at the time promptly  named her Bessie.  I am not entirely sure why, but the name stuck.  When we retired Bessie and replaced her with a mini-van we invited all the kids in the neighbourhood over to paint her from top to bottom.  We then donated her to a local church camp where she transported canoes until the camp closed several years later.

 

Philosopher Merleau-Ponty in Phenomenology of Perception (if you have insomnia you should sprint your nearest bookstore and buy the book, I assure you, problem solved!) discusses how vital objects can become part of one’s body.  He suggests that a white cane for someone who is visually impaired stops being an object for the user and becomes a necessary and functional part of the body – as sensitive and as necessary as fingertips for some of us.  I bring insomnia-cure Merleau-Ponty into the conversation because he beautifully captures how I felt as Bessie’s driver.  Driving the behemoth I had to accommodate this much larger bulk while moving around the community. Her size became part of me when driving.  Bessie became a significant part of how I perceived space and movement when behind the wheel.  When we finally moved to a wheelchair accessible mini-van Bessie had become sufficiently assimilated into my sense of space that it took me ages to stop taking wide turns and parking in the remote spots of the lot.

 

Let me tell you I celebrated when we purchased a mini-van.  I had a love-hate relationship with Bessie.  She got us where we needed to go, but WOW was she was clunky and ugly.

Last year Matthew got a funky new wheelchair.  It is a dynamic chair and is only one of two in Canada.  Basically when Matthew moves the chair moves with him. It is way cool!  But one BIG problem with the chair is that Matthew sits about 6″ higher than a standard wheelchair because of the moving parts.  Throw in the fact that he is growing like a weed and has a father who is about 6’3″ and his head was grazing the top of our mini-van.  I had to duck his head when loading him.  I was becoming worried that I was one rushed morning away from concussing the kid. Or worse.

So last fall our mini-van days ended for good.  <SIGH>  We purchased another oversized van with a power lift.  This one isn’t as ugly as the original Bessie but it IS about as large. My teens and I spent days chatting about an appropriate name.  Was she Bessie 2?  For a while we called her Bluebird.  But in the end “the Beast” is the name that stuck.

These days I am back to navigating parking lots with extreme care and driving with the spatial sense of a long-haul trucker.  The upside is that I will likely never be homeless since I think the Beast actually has MORE square footage than those new tiny homes that are very popular!

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