Journeying with memory loss

According to Baycrest Health Sciences in Toronto, around half a million Canadians aged 65 and over have mild cognitive impairment (MCI). Ten to 20 per cent of those will develop dementia. And currently there are some 772,000 Canadians living with dementia. As the Baby Boomers age these numbers will climb, and more and more of us will find ourselves either living with MCI/dementia or supporting someone who does. For my husband David and me this has been a challenging journey, but, like many travellers, we have discovered gifts and grace along the way.

This is how it all started.

David: I have long been a commuting cyclist. I had an inbuilt compass: I always intuitively knew which way I was going. But then, one day, pausing at a four-way junction, I had to stop. I went through this junction three or more times a week, but on that day I stopped, feet down, unable to remember which way to go. I looked for the sun to get my bearings, then I could carry on, shaken and confused by this. I felt as if I had been mugged.

I had noticed some other worrying signs, such as forgotten conversations, difficulty multi-tasking and diminished awareness of time, so David saw his family doctor, who referred him to a neurologist, who ultimately referred him to the Toronto Memory Program. David’s MCI was confirmed, and we were given information about its symptoms and how to manage it. There is as yet no cure, but David was given the opportunity to participate in a clinical trial aimed at slowing any progression. And he is assessed every three or four months to monitor his condition. So far it remains stable, but living with cognitive impairment is frustrating.

David: Without a reliable memory I lose track of myself. Most of us need to remember what is coming next. We have a memory of having done this before. With a failed memory, trying to do something that was recently familiar may mean you have no idea how to do it now. Memory loss is often a complete deletion, and it makes me feel helpless. I have to do it from scratch, and that is hard work. Asking someone to explain yet again, “How do you do this?” feels shameful.

While I am grateful for the mild in David’s MCI, I am all too aware that as I step in to manage many of the details of daily life now, I can easily overstep and thus disable or infantilize David. So I need to practice more patience, more gentleness, less taking of control. We were colleagues in ministry for more than 40 years, as well as marriage partners, and just as we had to learn to navigate each other’s different styles and goals over those years, and weave in our parenting of three children, so our challenge now is to work together to navigate this disability gracefully and with trust that the Spirit will give us the gifts we need in the years ahead.

David: I do not trust myself to lead worship alone now. I need us to do it together. Preaching works well, as I have total control and a text that I wrote. Sometimes I think to myself, “I know I can lead a full Sunday service in church.” But another part of me quietly says, “Actually, no, you can’t anymore.” And this fills me with grief.

There is no way of knowing what the future holds. David carries the gene associated with Alzheimer’s disease, and his mother died with dementia, but neither of those factors means he will inevitably deteriorate. The clinical trial gives us hope, as does his steady cognitive scoring so far. He is more careful with what he eats and drinks and is taking a natural supplement that our younger son is adamant can make a positive difference. But we do not know. And at times David has spoken of his desire to choose an “off ramp” if the prognosis becomes darker.

David: Cognitive impairment is an ongoing condition, and not a good one. It feels as if someone has hacked my mind. In the long run I have little hope. Not only do I want to spare my family and friends from watching me deteriorate, I do not want to experience it myself. But meanwhile I will carry on and trust the Holy Spirit’s gentle hand at my shoulder. And I know She will have a gentle hand on my family’s hearts as I leave. Since my teens I have tried to be a disciple of Jesus. I have trusted Jesus so far in life. I will follow him willingly into death.

For now, we are both learning to live in the sacrament of the present moment and not to get ahead of the grace, as a wise spiritual director of mine used to say. We are cherishing the simple things and living quieter lives. Extravagant vacations and lengthy trips for their own sake are not necessary and would add an unwanted layer of confusion and disorientation for David. But time spent with family and close friends is priceless, and we are continuing to make memories, even if they fade.

Sharing this journey with others in the same circumstances has been particularly helpful. They understand about the frustration and impatience. They know that sometimes there is comedy, and sometimes there is an upwelling of grief. They recognize the fatigue and the fears. In small, informal support groups, we have been able to share experiences, resources and way markers.

Ultimately, we are all learning to face our own and our loved ones’ mortality. We live, we age, we surrender our health and independence, and we die. This is the normal trajectory of human life, not a rude interruption or malfunction. And at some point, we might realize, as a friend of mine put it, “They’re calling our row.” I picture us all, one by one, making our way out of our pews and down the aisle towards the altar for communion. Some of us will be limping and holding onto others’ arms; some of us will go swiftly and eagerly; some will need encouragement. But we are not alone, and we move towards a banquet.