Where I am we teach English in contexts rather than units, though they amount to the same thing: a selection of outcomes or skills, set in some kind of themed package – we try to make everything relevant. And those relevant contexts sometimes come in the form of “essential questions”. EQs. I don’t use them 100% of the time, but quite frequently, and my students eventually get used to thinking about EQs as we look at different texts.

Recently, in my ELA 9, we’ve been looking at the essential question of survival: is it more important to survive physically or emotionally? The question might change, depending on what is being survived. Surviving war can be quite a long haul, and requires a whole other set of considerations compared to surviving a carwreck, which lasts only a few moments in time, and then comes recovery. The effects of both emotionally can last a lifetime, but in terms of physical survival, one is determined in a matter of days, while the other may take years before the final outcome is known. There is no point in trying to manage your emotions in a carwreck situation, if you aren’t going to survive physically. On the other hand, where is the victory in physical survival if the rest of your second-chance days are spent in emotional turmoil?

It makes for some great discussion.

Yesterday evening I attended the Christmas Banquet at my mother’s longterm care home. It was a lovely event, and Mom, on our way back to her room, commented, “Well, that was a nice way to spend the evening!” It really was. Splendid food, fun entertainment, music, Christmas trees, Santa Claus, presents. It was delightful. I posted pictures on Facebook for my friends and family to see.

This morning Mom couldn’t remember any of it. She said, “I remember there were a lot of people here…?” She ended with a question mark, as if to ask, “Is that right? Can I trust that memory, at least?” I showed her the pictures of us at the table, us watching the entertainment, us helping the fellow who was seated at our table who had no family to join him this Christmas …. and when we got to the video where Santa and Mom had a conversation and he handed over a gift she said, “How could I forget a conversation with Santa Claus? How come I don’t remember any of this at all?” This is an improvement. Last time I showed her pictures of a good time we’d had she accused me of making it up and setting up the photos to deceive her. Trickery. Her mind can’t be trusted, and she struggles to trust even her own family.

Today, I received a text from a long-time friend whose father passed away shortly ago, after suffering from Alzheimer’s for a few seasons. She commented on the pictures I posted, and mentioned that we should have some discussion about it when we get together next. Immediately, I was hit with angst.

I don’t want to talk about it.

I don’t want to feel like I’m whining. Do you know how many people have lost parents and siblings and friends to this disease? I am no different from all of them. My story isn’t more or less dramatic. Caregivers don’t die from this disease – beloveds get buried, lives get picked up, life is re-activated. I will not die from this experience. I, like every other caregiver, will walk the journey, and be there at the end to bury my mother and face the rest of my own road with the people who are with me then. There’s nothing to say.

I don’t want to hear how lucky I am to still have my mother. I have students – many! – who have lost their parents. I can count five without trying who’ve lost a parent within the last year. They are reeling in my classes – one spent the whole of September crying at every turn. Their journals are filled with their grief. My own mother lost hers when she was nine. I have only a very few friends left who have parents left with them. I still have both of mine and how did I land a jackpot like that? I am fortunate – wildly fortunate! I know, but I don’t want to hear it just now.

I don’t want to compare situations. I don’t want to permit myself to start thinking about those people whose parents may have succumbed to Alzheimer’s but are still physically well. They can still dance and go for walks. I watched a video posted by Jann Arden in which she’s walking her dogs with her mother – she posts regularly on Facebook about her journey with her mother. I watched and brooded, “She gets to still go for walks with her mom.” Stupid. Of course she does! And she should! And why not? Another friend just posted a video of her mother, also with Alzheimer’s and in a care home, learning to dance! I have to resist comparing. I can’t. It’s not fair. The suffering is bitter-sweet no matter the circumstances. And comparing only indulges the bitterness in me without acknowledging the sweetness.

I don’t want to hear how good I have it. I recognize that I have a blissfully supportive family surrounding me. I hear nightmarish stories about families breaking up over disagreements about care. Another friend of mine is right now managing a family situation in which she is the primary caregiver, but her siblings from out of province are, out of anxiety and concern, advising her on how to best deal with the situation. This adds such stress to an already ridiculous situation, and I know I’m not dealing with that kind of pressure as well. Thank God for a supportive network of siblings. I do hear from friends how jealous they are of me: “You have such a supportive family! You don’t have to deal with that at least!” I smile (albeit quite weakly). I agree. I have no business complaining. I have it good.

I don’t want to hear “now you know what it’s like”, which is what one well-meaning and dear friend said to me eight months ago when the diagnosis came down. Oh dear. Was I so calloused when she was managing her parent’s illness that she felt I didn’t understand? The truth likely is that I didn’t understand, and a worse truth is that I likely was that calloused. Although it would not have been in my heart to be, but without experiencing something first hand, who among us can understand another’s struggle? I have to let myself off the hook a little, but I have to admit my culpability there too. And frankly, I’m facing enough that facing that too is a little overwhelming. I’d like not to. But burying my guilt in a matter doesn’t accomplish much. I know that.

I don’t want it to consume more of my life. That sounds so selfish – this disease is consuming my mother’s brain and I’m concerned about my hours? I don’t think about it during work hours and I do have distractions. Truly. But the moment I leave the school and get into my car I pause to think, “What tasks and errands do I have for Mom and Dad today? What kind of day are they having? Maybe I’ll just drop by for a quick visit.” I have not mentioned my father. He is a changed man. He needs love and care and attention too, in all this. My brother attends to him diligently while I run after Mom and thank God for that because this is a busy stretch of road and when I’m out with friends it’s so pleasant to talk about all the things that we used to talk about. It’s like turning off a multiple lane highway during rush hour and finding a lovely bench under some shady trees.

So I don’t want to talk about it. But I will. You know why? Because physically surviving being a caregiver for someone with a terminal illness is absolutely dependent on emotionally surviving it.

This is a crazy honour. To walk a beloved through their last years, months, days or hours on earth; to hold and comfort and care for someone whose life is slipping out of their grasp; to keep and to care for those things which they can’t keep or treasure any longer – these are honours. High honours. If I am trusted with my mother’s soul – her mind, such as it is, and her emotions, as fragmented as they are – until such a time as they can be handed over to the angels that come to collect them for the Lord’s keeping …..

Furthermore, surviving emotionally isn’t a solitary endeavor. There’s the survival of my mother as well: what can I do to serve her, physically and emotionally? Her brain is being eaten by a disease, not literally of course, but effectually just the same. Her emotions, in as much as they are products of her brain, are also somewhat out of her control. My emotional survival is linked to hers in many ways.

And there’s the survival of all the caregivers I’m finding on this road: friends who are currently in the middle of the same journey, and whose need to talk and to process and to share agonies is sometimes urgent. And ghosts! I find park benches on the road; and on them sit the ghosts of friends who have made it to the end of this road, and who are moving on, but remnants of them exist here and there along my way. Such is my friend – the one who called, whose parent is gone, whose life is re-activated, but whose ghosts sit on many of my park benches. She wants to talk. She wants her ghost to talk. And those reflections may serve both of us well for her emotional survival, and mine. Who is to say that survival is a singular landmark, that having passed it, one can consider the work of surviving done?

Then the essential question is not, “Do I want to talk about it?” Phht. Want?? What does want have to do with anything?? Who wants anything to do with terminal illness? Does my mother want any of this? Do my orphaned students? Have any of my friends asked for their struggles in caregiving? Want. No, that’s not the question.

Rather, the EQ here is this: “What does it take to survive?” I mean, in order to tend to this honour well?

I need to be both physically and emotionally well. Both, and the one depends most certainly on the other. I choose to face the road before me. I choose to find the joy. I choose to acknowledge my mistakes. I choose to cry the surfeit amount of tears. I choose do this well.

I will talk about it. I don’t want to, but my own survival depends upon this.