Beautiful essay. I am now the full-time caregiver of a spouse with dementia. I do this with great love, and gratitude for 60 years of a rich and fulfilling marriage. Still rich, still fulfilling, but sometimes taxing, and often dependent on the memories of earlier and more laughter-filled times. Your essay— by including the work of caregivers — restored something to me that goes missing whenever I cannot take part in the protests and quite passionate campaigns we once participated in together. Not whining. Just wondering sometimes — as a dear friend recently asked — who am I now? Certainly I am no longer the woman arrested over the KXL pipeline. Certainly I am not the woman who (backed by the group then called ForestEthics) sued the government of Canada over the right to comment on the Line9B reversal and expansion. As I say, I’m not whining. I am magnificently supported by a remarkable family, a dear congregation, and a superb local Alzheimer’s society. All good. And that small phrase in your essay reminds me of the dignity of my labour, and the worth of who I am now. Thanks, Leni.
Donna, I hear you with my whole heart. Caring for a spouse with dementia is such a profound act of love, but I know from experience how heavy and isolating it can feel. It is a roller coaster of emotions — some days full of gratitude, other days overwhelming with exhaustion and the question of who we are now, apart from the care we give.
I’ve been in that role three different times since 2011, for years at a stretch, and I know the toll it takes on energy and identity. We go into caregiving with full hearts, often assuming the supports will be there, only to discover how thin and patchy they are, and how little room there is to recharge. It can be draining in ways that are hard to put into words.
I hope you have caregiver community groups nearby, and that you can lean into them whenever possible. And I hope you can claim space for self-care, because it isn’t a luxury — it’s what makes caregiving possible. Those moments to recharge are what keep us whole.
Please know I applaud the many small, often unseen things you do, day after day, that hold everything together. They matter more than most will ever know. For what it’s worth, I don’t regret a minute of the time I gave as a primary caregiver. I would do it all again. But it is hard, and my heart goes out to you.
Thank you for trusting me with this glimpse of your journey, and for the reminder of the dignity and worth in this labour of love. I, and I am sure all who read your words. both see and applaud you. A woman of character, strength and empathy.
Such a tender response, and inspiring. And I do have recharging time, very dear friends who provide it, for instance: the same take-spouse-for-lunch day, week after week, as dependable as the sunrise. As you say, sometimes exhaustion. But no regrets.
Beautiful essay. I am now the full-time caregiver of a spouse with dementia. I do this with great love, and gratitude for 60 years of a rich and fulfilling marriage. Still rich, still fulfilling, but sometimes taxing, and often dependent on the memories of earlier and more laughter-filled times. Your essay— by including the work of caregivers — restored something to me that goes missing whenever I cannot take part in the protests and quite passionate campaigns we once participated in together. Not whining. Just wondering sometimes — as a dear friend recently asked — who am I now? Certainly I am no longer the woman arrested over the KXL pipeline. Certainly I am not the woman who (backed by the group then called ForestEthics) sued the government of Canada over the right to comment on the Line9B reversal and expansion. As I say, I’m not whining. I am magnificently supported by a remarkable family, a dear congregation, and a superb local Alzheimer’s society. All good. And that small phrase in your essay reminds me of the dignity of my labour, and the worth of who I am now. Thanks, Leni.
Donna, I hear you with my whole heart. Caring for a spouse with dementia is such a profound act of love, but I know from experience how heavy and isolating it can feel. It is a roller coaster of emotions — some days full of gratitude, other days overwhelming with exhaustion and the question of who we are now, apart from the care we give.
I’ve been in that role three different times since 2011, for years at a stretch, and I know the toll it takes on energy and identity. We go into caregiving with full hearts, often assuming the supports will be there, only to discover how thin and patchy they are, and how little room there is to recharge. It can be draining in ways that are hard to put into words.
I hope you have caregiver community groups nearby, and that you can lean into them whenever possible. And I hope you can claim space for self-care, because it isn’t a luxury — it’s what makes caregiving possible. Those moments to recharge are what keep us whole.
Please know I applaud the many small, often unseen things you do, day after day, that hold everything together. They matter more than most will ever know. For what it’s worth, I don’t regret a minute of the time I gave as a primary caregiver. I would do it all again. But it is hard, and my heart goes out to you.
Thank you for trusting me with this glimpse of your journey, and for the reminder of the dignity and worth in this labour of love. I, and I am sure all who read your words. both see and applaud you. A woman of character, strength and empathy.
Such a tender response, and inspiring. And I do have recharging time, very dear friends who provide it, for instance: the same take-spouse-for-lunch day, week after week, as dependable as the sunrise. As you say, sometimes exhaustion. But no regrets.