Am I a caregiver? Or his mother?

 

IMG_1739Yesterday I was listening to CBCs The Current where a panel of three individuals was discussing how the word “disability” is used, and not used, in current discourse. One of the participants was Ian Brown, author of The Boy in the Moon: A Father’s Search for his Disabled Son. For those who don’t know, Mr. Brown’s son, Walker, as described in his book, lives with severe disabilities and is medically fragile and technologically dependent. As an aside, I loved Mr. Brown’s book. For me, it was the first book that adequately described the chaos of my life without sugar coating the story with some mandatory happy ending. He let the story stand in all its chaos while still conveying his profound love for his son. That is a caregiving story that resonates for me.

During the course of the program Mr. Brown suggested that when caring for his son the bulk of one’s energy is devoted to managing chaos. I think the phrase he used was something like preventing fires, but I would have to re-listen to the podcast to be sure! However, what caught my attention was when Mr. Brown suggested that it was when his son, now 19, moved a to a group home he was able to more fully develop a relationship with his son because he could hand off caregiving responsibilities.

As someone who is only beginning to entertain Matthew’s residence in a home other than our own this idea is fairly new to me, but makes a great deal of sense. For the past 17 years my “mothering” role has included being an advocate, a nurse, a diagnostician, an ethicist, a human resources manager, and a case manager in ways that are generally not required of the typical parent.  In many ways I see myself as a caregiver first, and a mother second.  If I think about that for any length of time it will make me sad.

It also seems that in recent years our caregivers and nurses are the ones who tend take Matthew to the movies and his various evening activities while I manage the ongoing demands of Matthew’s daily life and care. In other words, staff often get to do the fun stuff with Matthew while I wash the laundry, manage his funds, advocate for services, meet with health professionals, and organize his staffing needs. I am the one who is with him constantly during illness and hospital admissions. These days the bulk of my time with Matthew is providing care, or managing that care when not provided by me. There are many times I wish it were different but I am only human and I can only accomplish so much in a 24 hour period.  There seems to be little energy left for fun.

Like Mr. Brown has pointed out, it is beginning to dawn on me that once Matthew lives elsewhere and others take on those management and caring roles I will have the time and energy, perhaps for the first time in his life, to be Matthew’s mother first and foremost. To be sure, parenting any child involves elements of the responsibilities I noted above, but for extreme parental caregivers these roles reach the point where they can essentially replace all other parenting experiences. While Matthew lives at home and is primarily in my care my mothering experiences cannot be separated from these other overwhelming responsibilities.

As someone beginning to contemplate long-term care for Matthew I find I am increasingly attracted to the idea that others will be the one’s changing his diapers and managing his staffing schedule while I am the one who might take him to his evening activities and the movies.  It will be my turn to have fun with him!

Don’t worry. Be happy. And other lies.

It seems that every day I am bombarded by memes and messages on Facebook that suggest that world peace and a cure for whatever ails me is just a cup of tea and a few positive thoughts away.  Today a good friend (hi Gary!) posted a message that tells me that if I am too busy loving life I can avoid anxiety, worry, drama, or regret.

Baloney!  And that is using my polite voice.

Fortunately Gary, in additional to being a good and thoughtful friend, is a good sport and accepted my comment about the fact that such posts royally piss me off with his usual good grace and humour.

A few weeks ago I stood in the emergency room of our local children’s hospital having a conversation with a doctor about my expectations for life support should Matthew’s condition further deteriorate. To translate for those of you who don’t spend time in the ER having chats like this, the conversation was about how far the team should proceed with medical intervention before we all simply accept my son’s inevitable death.  For the record, if I presented as happy during that conversation the team would have reasonably suggested a psych consult for me.

Unlike what Facebook tells me, thinking happy thoughts was not going to reduce the drama or the anxiety that filled every inch of that moment, or the ones that followed.  There are simply times in life when it is acceptable and appropriate not to be happy.  There are times in life when sadness, anxiety, fear, despair, and anger fill us and all the spaces of our lives.  Saying these things does make me a pessimist.  It makes me a realist.  I accept that suffering is a fact of life and that happiness is not necessarily an achievable state at all times.  In the end I think I am a happier person because I am realistic about the elusiveness of perpetual happiness.

Suffering is unfortunately a part of life.  Sadly, our Western society is desperate to do everything possible to drown out that idea.  There is this sense that if we just keep talking (screaming?) about how we can be happy all the time we can keep suffering and difficult moments at bay. If we read enough Facebook messages about how to be happy then we will miraculously be happy. All. The. Freaking. Time.

It doesn’t work that way.  Life isn’t fair.

There are moments in life that are genuinely awful. To suggest that we should walk around being robots programmed exclusive to the happy mode all the time is ridiculous. This constant pressure from our prosperity gospel society that tells us that a happy life is the only way to live and is only a few happy thoughts away does an incredible disservice to all of us, particularly those who for whatever reason are suffering or who are clinically depressed.  There are many situations in life when happy thoughts do not help and telling someone to think themselves happy compounds suffering.

Even among those of us who are not struggling with depression or who are not suffering, this blind adherence to finding unending happiness not only sets us up for constant disappointment when we cannot find perpetual bliss, but it mutes the full range of human emotions because we are told that only one emotion counts – happiness – particularly a warped form of North American happiness that values fleeting attributes such as youth, health, beauty, wealth, and influence.  There is so much wrong with this thinking that I am not sure I could contain it to one blog post.

As an extreme caregiving parent I have found that this crap about constantly striving for happiness is just that, crap.  In my view we ought to be striving for different experiences such as contentment, community, hopefulness,  and gratitude, while acknowledging that the full range of human emotions are both appropriate, but also acceptable.

Somewhere along my journey of life I was offered some excellent advice.  I cannot remember now if it was actually a person, or book, but it doesn’t matter.  I was advised not to strive for a “cup of life” that overflows with joy and happiness, but rather a cup that is full enough.  A metaphorical cup that is so full that it overflows is defined not by me, but by the size of the cup.  The bigger the cup, and we in North America insist on some pretty damn big cups, the harder it is to make it so full it overflows. Our expectations for joy become so overwhelming that it becomes very difficult to find “full”, much less overflowing.  Enough, however, is an elastic measure. Full enough is defined by me and can change to accommodate the bumps of life. Enough also reminds me to adjust my expectations to acknowledge that many would be grateful with my cup even if only containing a few drops.  Enough allows me to find and define contentment even during difficult moments.

Like the days when Matthew is in the ICU and I allow myself the daily treat of a latte. Those are the days that hot coffee fills my  metaphorical cup quite enough.

 

Garbage Day

 

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Monday is garbage day in my part of the world and what could be more mundane than garbage.  The extraordinary waste produced by extreme caregiving is rarely discussed, but as municipalities start placing stringent limits on waste disposal it is something that the general public needs to be more aware of.

My kid produces a LOT of garbage.  Our region has yet to charge for garbage bags and garbage removal so we have been able to get away with putting more garbage at the curb than the average suburban family.  Those days will be ending soon and I am not entirely sure how families like ours will be accommodated.  Families with young children will have a time-limited allowance for increased garbage during the “diaper years”.  But, what if those diaper years never end?  Or, what if you are providing end-of-life, or eldercare at home?

During my early mothering years I attempted to be environmentally friendly.  I used cloth diapers and tried to make sure my environmental footprint wasn’t ridiculously large.  But these days I am beginning to think that we might need to name a landfill after my son. During an average week my 17 year old son produces at least one full garbage bag of of diapers – adult medium sized at that. The days of cute little diapers with bunnies are well behind us.

Matthew goes through about 55-60 diapers a week.  Every week.  And will continue to do so indefinitely. That’s a lot of diapers.  He also uses a range of incontinent products like adult sized wipes.  Baby wipes just don’t cut it these days.  Throw in the fact that, weekly, we also dispose of syringes of various sizes, bags for his feeding tube, tube extensions, medicine cups, oral swabs, gauze and other assorted and sundry medical supplies (all of which are individually wrapped) and Matthew alone produces a lot of garbage.  Garbage that we cannot avoid producing by reducing, reusing, and recycling.  Many of these supplies have been contaminated with body fluids so for safety reason we cannot just toss them in the recycling bins.  Similarly, for safety reasons, we cannot re-use many of Matthew’s medical supplies for any length of time.  We do re-use syringes and feed bags for several days to try to minimize garbage.

But, in the end, lots of stuff ends up at the curb, and in a landfill, because, in essence, our home is a mini-hospital that generates a lot of biohazardous waste.

As someone interested in environmental issues I am all for reducing waste wherever possible.  But there are some situations where reducing waste is very difficult, even impossible.  Will families raising exceptional children with the exceptional garbage that goes with that task have to bear yet an additional cost – the cost of increased garbage disposal.  In many cases exceptional families are already coping with a reduced income and increased costs.   Ideally cities will provide some form of compassionate exemption for families in situations like ours.

Something to think about during municipal discussions and voting.

My crappy life. Literally!

I will start off right away by saying if you have delicate sensibilities you might want to skip today’s post.   And then there’s part of me that thinks, heck, get over it, welcome to my life. Delicate sensibilities are luxuries not extended to extreme caregivers.

I always seem to be up to my elbows in bodily fluids, often excrement. If you hang around this blog long enough you will notice that theme. I wash my hands so often that for most of the winter they are a chapped, bleeding mess – and these days I glove for the messiest jobs to try to protect my hands. My darling husband gave me the super-strong fisherman’s hand type lotion for Christmas. Despite practically bathing in the stuff my hands are still cracked and bleeding.

Yesterday morning was like any other day. By 7:30am I had already had a fairly crappy morning. Literally. I start every morning by walking our dog. That involves crap. Yesterday morning was no different.

Then I returned home from my dog walk to a pile of VERY soiled linen on the laundry room floor. Clearly the child had exploded during the night shift. Matthew is on antibiotics after all. Diarrhoea is a normal result. Please bear in mind that my son is now 17 years old and quite large. We are not talking adorable little newborn diapers and stuff here.

I tackled the laundry.

And then, about ten minutes later, Matthew had a seizure. Seizures in the morning are not uncommon and we don’t get too excited. Matthew’s seizures, at least right now, are brief, self-limiting, and not too concerning. We just keep an eye on him and make sure he’s okay. But one of the consequences of a seizure includes a loaded brief. And this time “it” evaded the brief and was everywhere.   All over him, his bed, his linens, his pjs. AAAAAAAAARGH.

So I started round two of the morning clean up. The kid. The bed. The clothes. The linen. Me. By this time I have been awake for less than an hour, for the record, and for most of that hour I have been elbow deep in poop. It’s going to be an awesome day.

My husband, who throughout all this had been reading the Globe in the kitchen while sipping coffee (not bitter here, nope), walked into the laundry room in his tidy suit to say good-bye before heading to work. I forget how it came up, but I admitted that most mornings I can laugh about spending the first hour of my day dealing with poop, but today seemed a little less amusing. He cracked some joke about my crappy life and thought he was very punny.

I love him so I don’t actually plan to strangle him.

 

God and What We Can Handle.

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Many parents of special needs children are told that God won’t give them more than they can handle. It is one of those common phrases that parents hear with some regularity. I personally believe that, as a rule, it is a sentiment that comforts the person offering the advice more than the person receiving the advice. It allows for others to retain faith in situations that might challenge their faith. If the special needs parenting blogs are to believed many parents raising complex kids find the comment troubling, and at times even offensive. But that isn’t always the case and it is important to remember that this journey of extreme parenting can have as many different variations as there are parents.

In the very early days of parenting Matthew I actually remember finding some comfort in the idea that God would never give me more than I could handle. The idea that I was never going to be tasked with too much was assuring. The idea that God had very carefully chosen me for this job of parenting Matthew because I was somehow special and unique was a powerful thought. In the first year or so of his life I clung to that idea.

But then life happened. And, boy, did it happen. There seemed to be years where I was constantly dealing with this rapidly escalating journey of complex care. I was caught up in a juggling act where outsiders kept throwing balls at me that I somehow had to keep up in the air. Outsiders would watch the juggling act and comfort themselves with the knowledge that I could do it all, because, you know, God. I would juggle harder and faster, but I knew it was just a matter of time until everything came crashing down on my head. At the time God seemed remarkably absent. No one was placing limits on that juggling act and no one was helping me with the routine. It was so much more than I could handle and if God was part of the story then I didn’t want a whole lot to do with God. My kid was suffering. I was suffering. The whole thing sucked and God, to me, was nowhere to be found.

As someone who embraced the Christian tradition I left church. I walked away from God. Well, actually, I believed She had walked away from me. Not only did I abandon my faith, but I became angry. I was angry about life, about my situation, and boy, was I pissed off at God. Really, really angry.  As an aside, God can handle extreme anger, just read the Laments. In hindsight it tells me that I didn’t totally abandon my faith because you can’t be angry at something you don’t believe in.

Part of my particular journey back to faith, granted a different type of Christian faith but faith nonetheless, included studying theology at a university. I am a geek by nature, what can I say. But it worked. It allowed me to unpack God and faith and find different pathways back to spirituality and God that made sense in my particular context. Others might choose a different journey. In my view they’re all good as long as we’re respectful of each other’s particular story.

But now back to what we can handle. By this point in my journey I had firmly rejected the notion that God would never give us more than we could handle. And then, as part of my MA in theology, I did a study exploring the spiritual journeys of parents like me. I met many parents who shared my particular philosophy – that God wasn’t part of this handling it all thing. And I also met parents who believed, with every fibre of their being, that God was in this journey and would never ask for more than they were capable. I had to start incorporating this radical new idea into not only my study results, but my own understanding of God and faith.   Several parents in the study were absolutely convinced that God would never give them more than they could handle. That even when the journey was brutally hard God was there and would assist in some way. God was always with them and this idea brought amazing comfort. It was the only thing that allowed them to continue. For these parents the statement that I found untrue, and that some parents found offensive and angering, was the source of enduring comfort.

So in the end I would suggest that it is very helpful to know another’s theology and faith before you comment on their journey. And even then be careful because one’s belief and faith can be radically revised during crises.

During difficult moments it is better to offer words that bring comfort to the one suffering rather than to support your own particular theology or ideology – which may mean you don’t say a whole lot, but rather listen. Better yet, rather than interpreting their journey for them, ask them to tell you what they believe and what ideas bring them comfort. Be secure enough in your faith or thinking that you can accept differing beliefs about God or the journey. There has been a strong backlash in some special needs and faith communities against some of these commonly held beliefs and sayings. I will admit to being one who has actively pushed back against these ideas on a regular basis because the ideas didn’t work for me. But yet, several people have stopped me in my tracks and reminded me that some of these beliefs, some of these theodicies that protect God amid suffering, work for some people. Beliefs that might make me want to scream are a source of enduring solace for others. We are all different.

So does God give us more than we can handle? Isn’t that one of the great mysteries of life! Let extreme caregivers let you know what they think on the subject. I bet there will be lots of interesting answers and I love a great theological conversation.

 

Long term planning

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Once people understand that I am open to being asked virtually any question about extreme parenting it is amazing how inquisitive they can become. I have been asked fairly blunt questions ranging from my marriage, to finances, to Matthew’s life expectancy. With the odd exception I am usually happy to talk about my experiences. As this blog attests, I am committed to honest and open conversations about the reality of extreme caregiving. I think it is important that we replace many of the more public and popular narratives of  the virtuous and saintly caregiver with stories that are more realistic and nuanced.

One of the questions I am often asked, particularly now that Matthew is in his later teenage years, is what will happen when Matthew is an adult. Where will he live? Will he live that long? What is the plan? These are all good questions.

First off, yes, Matthew could live well into adulthood. His life expectancy, statistically speaking, is about early thirties. However, people who are medically complex outlive their predicted life expectancies all the time so we’re making plans for Matthew to live a long and happy life. That said, Matthew is also considered medically fragile which means that something very serious could happen tomorrow that could threaten his life and well-being. This uncertainty is all part of the emotional roller-coaster involved in caring for a medically fragile child. My son could die tomorrow from a severe seizure or he could live well into his thirties. Both are considered within the realm of possibility, and neither would surprise his medical team given his medical fragility. It is a disquieting reality.

Yesterday Matthew’s paediatrician asked me point blank what plans we had for Matthew’s long-term care.  He gently, but appropriately, reminded me that I could likely not live this life forever. For the first time in Matthew’s 17 years I am beginning to understand that the endpoint to caregiving may be looming closer on the horizon that I might be willing to admit. The idea of Matthew’s care being out of my control terrifies me. It is actually quite traumatic to think about. I have no idea how I will cope. However, I also know that the idea of Matthew’s daily care being out of my control is also the source of great relief as well.

Long-term care, at least in Ontario, is spiralling into a crisis situation. There are fewer and fewer publicly funded beds for the population of young adults, like Matthew, that require ongoing 24 hour complex care. Many families spend years on wait lists only to find that virtually all beds these days are being offered to children where the family is in crisis and are no longer able to care for their child due to age, illness, or emotional stress. This means that any real planning for long-term care, while desirable, is often impossible. You take what you can get, when it is offered, and right now it is usually not offered until a family is well-beyond coping.

Our situation is a little bit different so I am more hopeful.  Without going into details Matthew will qualify for a privately funded bed. This makes Matthew privileged in many ways and we are grateful. But it also means that most long-term care facilities are not quite sure how to include Matthew since virtually all their beds are publicly funded. Matthew falls well into a grey zone that makes long-term planning difficult and unclear.

While we don’t know where Matthew might end up what I do know is that he will need to eventually move to some form of long-term care.  As his paediatrician pointed out, I simply don’t have it in me to provide the level of complex care he requires for his lifetime. Yes I can, and do, hire caregivers and nurses to assist with his care – to change diapers, manage his feeding tube, and assist with the long list of care he requires daily – but the fact is that as long as he is in our home I will always feel profoundly responsible for his care. I am the “go-to” caregiver for those days that staff call in sick, book time off, or simply cannot be sourced by the agency. I feel psychologically responsible for Matthew’s well-being at all times. Add to that the fact that we wonder whether Matthew might actually prefer to live in a community based home with similar aged peers rather than in an increasingly empty home with his boring middle-aged parents, and long term care planning is a necessary conversation.

But then there’s the other, equally important, part of the story. Not only is it unrealistic for me to provide this level of care indefinitely, but I don’t want to provide this level of care indefinitely.

There. I said it.

While it is hard to admit, I don’t want to be a caregiver for my entire life. Now that I am dancing around middle-age I know there are a list of my own goals and dreams that I would like to explore.  The only way to do that will be to relinquish primary responsibility for Matthew’s care.

Do I feel selfish for saying such things? You have no idea.

I love my son.  So much so that I have given up many opportunities and dreams over the years to be his primary caregiver. I have walked away from jobs, foregone educational opportunities, missed holidays and social outings, and watched friends continue on a life path that was never a realistic option for me as long as Matthew was in my care. Even more difficult, there have been times when Matthew’s overwhelming care interfered with my marriage or my ability to parent my other two children. I thank God that my husband and two other sons are remarkable, resilient, and forgiving souls.

By this point in my life extreme caregiving is thoroughly embedded in my psyche and in my sense of self-identity. It has become a large part of who I am and how the world sees me. So much so that once this journey of caregiving ends I am not quite sure how will I cope or how I will define myself. It will likely be a difficult transition. But, I also know that if I don’t have an endpoint for this caregiving journey it might only be a matter of time until I resent my son , and I NEVER want that to happen.

Caring for Matthew has exacted a very high price. Caregivers rarely talk about the price of caring because I am not entirely sure the world wants to hear that part of the story, and as parents we feel deep guilt for even thinking some of the thoughts I have had the audacity to type. The physical, emotional, and personal toll of chronic extreme caregiving is profound. To be sure there are joys and rewards along the way as there are in all important journeys and relationships. I don’t want to leave that part of the story out. But, the overarching theme of many untold caregiving narratives is one of personal sacrifice, quiet loss, and ongoing difficulty. As I have said all along, this blog is about telling the untold story of caregiving. And personal sacrifice is a significant part of that story.

So the answer to the question of where Matthew will go as an adult is that I don’t know. But what I do know is that he will likely go somewhere because I will need this  caregiving journey to end at some point. I cannot provide this level of care forever.  There is relief in saying that out loud.

Complex care

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I swear that my son has spent a significant chunk of the last month screaming and I am ready to join him.

I am pretty sure he is in pain. I say that to every health professional we talk to these days. And since he has had two recent admissions to the ICU via the emergency room lately I have talked to a number of health professionals. But once we again we return to the age-old problem of pain and profound disability. Because my son is non-verbal and profoundly developmentally delayed he cannot communicate the details of his pain. He can only tell us he is in pain. Unfortunately, assertive pain relief is often not offered until the medical team understands the pain – regardless of how long that might take and how profound his suffering. The fact that during the last month what I believe is pain has become so severe for my son that he can become medically unstable isn’t enough justification to manage his discomfort it seems.

When Matthew’s pain becomes severe he cannot coordinate his breathing. This poorly coordinated breathing, we are learning, seems to lead to (very) poor oxygenation levels which itself is a problem. By the time we get to the emergency room he is usually so unstable that the team needs to respond this evident medical instability and difficulty breathing. Fair enough.  The problem, however, is that the reason for that medical instability, meaning suspected pain, becomes lost in the acute moment even though I keep trying to bring the team back to that issue. Late last week Matthew was, once again, rushed to the emergency room with difficulty  breathing and unfortunately this time was no different. Matthew is back on antibiotics to treat a pneumonia I confidently told the both the ER and  ICU doctor wasn’t the source of his breathing difficulties. We’ve done this before and I am pretty good at reading Matthew’s sypmtoms. And sure enough, his lungs are fine once objectively examined. Apparently, when it comes to my own kid, I can be as accurate as an x-ray!

What I keep telling the team, and only now do they seem to be hearing me (after two ER visits and corresponding ICU admissions), is that Matthew’s acute presentation is the result of an evolution over several hours, or days, of irritability and suspected pain. We need to, ideally, find the source of the pain and irritability and manage the situation. At the very least it would be nice if we could, when necessary, treat the pain to prevent the complex spiral that can then ensue and lead to the medical instability. Because once he’s unstable and at the hospital the situation gets very complicated and the initial reason for his instability gets lost in the acute management of his condition. During these acute episodes drugs, sedation, and interventions are thrown into the mix that themselves create problems. I worry these interventions begin to obscure the initial source of discomfort we are trying to identify. Is Matthew upset now because he has GI pain of some unknown source, or because the antibiotic he is on, and really didn’t need, is causing severe diarrhoea and general stomach upset? The source of his initial pain response gets lost in this explosion of medical intervention that is happening to Matthew’s already very complicated body and medical status. There are times when I want to remind the team that they labeled my son “complex care”, because he is complicated!  Let’s stop and think a little more deeply about the issue.

So we now have a situation that when Matthew starts spiralling into this pain response we are doing everything we can humanly do to avoid going to hospital. The people at our regional children’s hospital are nice and all that, but I really don’t like the team enough to want to hang out with them regularly. But more importantly, trips to the ER and hospital add a needless layer of complexity and fragility to an already very complicated and fragile kid.

I feel like I am caught between a rock and a hard spot. Something is wrong. Perhaps very wrong and the system, once again, is ill equipped to adequately assess and respond to a child with this level of complexity. It is further complicated by the fact that some medical professionals struggle to hear the voice and assessment of an experienced parent who knows their child. So I am left with the impossible decision of deciding whether a trip to the hospital will help, or hinder, my already very medically fragile child. These brutally stressful conundrums, with very real life and death consequences, are the stuff of life for many of us who care for medically complex children.

My kid is very, very unhappy some days. When Matthew is irritable we cannot care for him. It takes three people to change a brief or give him medication, and even then someone might get inadvertently hit. As his mother I am forced to stand and bear witness to my son’s pain and suffering, knowing the medical community not only may not address his pain, but that they might complicate finding and treating it. It is an endless source of suffering for both Matthew and me. That whole porous boundary thing. It is an unsustainable situation that seems to have no immediate answer.

Fang is awake. The cage is still locked. But, she is awake.