Long term planning


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.

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