What will limit our ability to care?

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

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

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

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

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

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

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.

Managing Fang: My role

 

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It seems that my posts over the last week or so have addressed the inevitable conflict that many extreme caregiving parents find in their daily lives.  In a system rife with inconsistencies, fragmentation, limited funds, and sheer complexity, some conflict is unavoidable.  Parents often need to assertively advocate for resources and care for their children amid a system that drowns or dismisses our voices.  Sometimes the only way to be heard is to release our inner Fang.   However, constructive working relationships are universally less stressful for everyone and are much more likely to achieve the positive results that are in the best interest of our kids. For that reason alone I know I need to work very hard at keeping Fang under lock and key. When she is released situations often become conflict laden and very stressful.

In my previous post about why Fang remained sleeping during a recent, very stressful hospitalization I shared that I would discuss my role in Fang’s management.  So, for what it is worth, here is how I personally keep Fang under control. These are my priorities and strategies. Other parents may choose differently.

  •  Choose battles wisely.
    • A very helpful friend told me early on in my extreme parenting journey that there would be the possibility for battles everywhere. Holy cow was she right! She suggested that one of the most important things I could do was to be very selective about the battles I chose or I would become exhausted quickly.  I cannot tell you how important this advice has been.  Early on I decided that I would have a “priority” list, and only if the matter compromised something on the list would I make it an issue.  My personal list is the following, in order of priority: 1) Matthew’s health/safety/medical stability.  2) Matthew’s quality of life.  3) The family’s quality of life.  For #3 the matter has to be significantly serious that I am prepared to deal with the conflict that will inevitably ensue because that conflict will most certainly compromise my quality of life.  So, minor things like nurses telling me how to dress Matthew, homecare staff complaining about how I had shovelled the driveway, or staff reorganizing Matthew’s bedroom, while mildly annoying never blip my QOL radar enough to justify making it an issue.  I just shrug it off because the conflict is not worth it. Having staff in your home is a lot like a marriage – you need to choose to let the little things slide because the relationship is more important than the small bits.   It is only when Matthew’s care or QOL is threatened that I will say something.
  • Be prepared.
    • During Matthew’s most recent and eventful trip to the ER and the ICU Fang slept blissfully in her cage. One of the reasons that conflict or stress was minimized was that care unfolded seamlessly, which was significant when one considers that he was critically ill in the ER and things had the potential to become panicky.   Upon arrival at the hospital I handed the triage nurse, and later the ER treating physician, a one page summary of key information about Matthew. I always do this.  I have learned that in acute settings having up-to-date information at hand allows everyone to do his or her job more effectively. This one page chart includes information about Matthew’s diagnoses, important surgeries and medical history, all medications, and important information about his functional abilities and safety management.
  • Treat others with respect and always start with a fresh slate.
    • I like to think this one is obvious. Just like my mother always told me – treat others with respect if you also wanted to be treated with respect.  I make it a point to go into every relationship assuming that I will be treated with respect and that the professionals involved will view me as an important and helpful member of the team. Starting off on the right foot, even if there is a history of conflict with a team member, often allows us to continue walking on that “right foot”.
  • Set and enforce boundaries – particularly when situations have the potential for conflict.
    • I have learned that sometimes establishing boundaries early on in a clear but diplomatic manner prevents later conflict. A few months ago I was struggling with a matter with our local CCAC. It hit #1 on my priority checklist so it meant that I was prepared to deal it.   The CCAC knew I was concerned – I had made that fairly clear – so they called a meeting. I received an email telling me to come to the CCAC office on a certain date at a certain time – that was it. I was already feeling bullied and “in the dark” – feelings that can get Fang rattling at her cage – so I responded with an email indicating that I looked forward to a meeting to discuss concerns and solutions, but that I wasn’t prepared to attend a meeting unless I had been informed of the participants for the meeting, their role in the conversation, and the specific agenda for the meeting.  In the past, I  learned that without establishing such boundaries I might arrive at a meeting with an established team and a detailed agenda already in place which meant my voice and concerns would be quickly overshadowed.  In this case, and as diplomatically as possible, I told the CCAC that I would not attend the meeting without the requested information provided well in advance.  I know they don’t like it when I set those boundaries, but have learned that they usually respect them.  I have earned a reputation for being assertive and professional, but also unwilling to be bullied or “manhandled”.   For me, meetings that might have the potential for Fang to make an appearance start off more constructively if I am not blindsided.
  • Self-care.
    • I am almost hesitant to list self-care since it is both obvious, but also usually unattainable, for most extreme parents. I also don’t want to suggest that by taking care of ourselves we can avoid conflict and keep our inner Fangs locked up.   The system is sufficiently convoluted and unfriendly that that hope is purely delusional. I also don’t want to blame the parent/victim at all for much of the conflict we live with. That said, frazzled people can live in a perpetual state of fight-or-flight and battles emerge when in calmer moments they might have passed unnoticed. For me, part of keeping Fang quiet is doing whatever I can, whenever I can, to engage in self-care. For me being less frazzled means that I can usually keep matters, and potential battles, in perspective. So that means, for example, when Matthew is in hospital I make it a priority to eat and sleep. When Matthew is at home I try to structure my daily life so that I have windows of time each week to engage in self-care – not easy but a priority if I am to keep Fang at bay.
  • Practice self-compassion.
    • We are flesh and blood humans living every day in very stressful situations that very few can fully understand.  I have learned that I need to cut myself some slack when I do fall apart or lose my cool.  I am doing my best.  That is all I can do.  Asking myself to do more is unrealistic and sets me up for martyrdom and I don’t wish to be a martyr – only Matthew’s (and Robert and David’s) mother.