In my caregiving years, scenes like this played out too many times. Sometimes she responded defensively by saying, “You didn't tell me that,” and I insisted that I did. Other times, she became defensive and I would know enough to hold my tongue. Knowledge was never the issue. As a psychologist for 25 years, I had counseled hundreds of family caregivers of dementia sufferers that it isn't helpful to constantly correct their cognitive mistakes, such as forgetting appointments, misremembering conversations and being unable to recall whether they'd had breakfast. When confronted with their errors, those with cognitive deficits only feel flustered and stumble further. To bring out the best in your loved one, I've always told caregivers, you must be as patient and supportive as possible and let the simple, harmless mistakes slide.
But why did I have so much difficulty practicing this advice with my own mother? Like many other family caregivers, I was caught up in my emotions. My mother had run businesses and other organizations. She'd been ultra competent and very bright. It was painful for me to be a daily witness to her light's dimming. Correcting her repeatedly, I knew, wasn't going to change the course of her decline from dementia. But on a subconscious level, it was a refusal to accept the slow disappearance of the commanding mother I'd always known.
Family caregivers need to be vigilant about their loved ones’ short-term memory deficits that pose safety issues — for example, taking medications incorrectly. But they also must manage their own emotional reactions to a care recipient's forgetfulness in order to cease making critical comments. How can we roll with a loved one's memory loss? Here are some ideas.
Let go of your memories
Forgetting who our dementia-afflicted family members used to be isn't an option. We remember well their unique personalities, special capabilities and proud accomplishments, especially when we still catch small glimpses of who they were during their occasional moments of lucidity. But to accept them as they are today and help them do as well as they can, we must loosen the grip of those powerful memories. Consider using mindfulness practices, such as breathing exercises and meditation, to step fully into the present moments with them, even if their current condition pains you. We want to be focused and aware, so we can respond to them with compassion as they are, not as they were.
Modify your expectations
Expecting a loved one with memory deficits to remember the details of a conversation or plan is a setup for failure — or, possibly, a script for showing them up. It is futile and unfair. But that doesn't mean we should treat them as incapable children. Rather, we must remain aware of their growing weaknesses and provide them with just enough support to help them perform as well as they can — perhaps giving them prompts or gentle reminders to stimulate their recollections.
Think about the power of your words
People with dementia, particularly in the early stages of the disease, are often highly sensitive about the cognitive mistakes they make and feel vulnerable to their own and others’ criticism. Any negative judgments we render out of concern, frustration or thoughtlessness will instantly pierce them to the core, stripping them of their dignity. To support our loved ones and strengthen, not weaken, our relationships with them, we need to curb our corrections and instead point out whenever they perform adequately. Positive reinforcement is a better path toward solace.
Take time to grieve
As I learned with my caregiving struggles with my mother, it was far easier for me to identify her faults than deal with my feelings. What I was experiencing was sadness about gradually losing her. No one likes to be sad — I certainly don't — but it is the human emotion hardwired into all of us to help us cope with loss and eventually heal. It is also the emotion, unlike anger, that brings grieving family members to greater closeness, through communion and commiseration. To the extent that we can grieve the impact of dementia together, we can support one another to remember what matters the most: We're family.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.