Bill told his Alzheimer’s caregivers support group, “My wife asked, ‘When are we going to see the grandchildren? We haven’t seen them in months!’ When I told her they were just here yesterday, she got mad at me. ‘They were not!’
“I even got out my phone and showed her pictures we took, but she dug her heels in and said that was last year. She was so mad, she refused to talk to me for the rest of the day.”
Tips for communicating with people with Alzheimer’s always include: avoid arguing. But they never include how to do that.
It is striking how hard it is for most caregivers to break out of old patterns of relating to their loved one. It’s not because they are uncaring or unwilling but because those patterns have been in place for decades—sometimes a lifetime.
And there the caregivers are, confronted with changes in the person’s behavior that were previously unimaginable and that catch them off guard. It takes a long time to internalize the reality of cognitive impairment, and family members are sucked into arguments in response to all kinds of new predicaments.
Sally is under a lot of strain. Her husband, Frank, has Alzheimer’s disease and can no longer do his accustomed jobs around the house. In fact, he’s driving Sally crazy by doing nothing but sitting in his favorite chair all day.
So when Frank looks out at the freshly cut grass and says, “I did a good job on the lawn, didn’t I?,” Sally explodes.
“You? You didn’t cut it. I did!” She knows better, but the wounding truth slips out before she can stop it. And the fight is on.
Exasperation can lead to outbursts such as, “Why did you …,” or “Couldn’t you see …,” which put the person on the spot and provoke defensiveness. No one does it intentionally; it just escapes, out of surprise and frustration, as when Margo says to her mother, “What were you thinking when you parked the car downtown and took a cab home?”
The universal impulse is to try to make the person with dementia see reason. After all, we rely on that in our other interactions every day.
Nora’s father insists on wearing his bathrobe wherever he goes. She tries to talk him into putting on a sweater instead. No luck. When he wants to wear the robe to church, she tries telling him the priest will be horrified. He doesn’t care. She tries hiding the robe, but then he refuses to go anywhere, until the robe magically reappears. Nora’s father has his own reasons.
As does Eve. She treasures an amethyst ring that belonged to her grandmother, and she often hides it to keep it safe. Then she forgets where she hid it and panics. That signals her husband, Joe, to get busy and find it. As often as not, it turns up in the wastebasket.
Joe, exasperated, says, “Eve, if I’ve told you once, I’ve told you a thousand times, if you put your ring in the garbage, it’s going to get thrown out!”
Eve defends herself: “I didn’t put it there. You did!”
Arguments erupt over resistance, errors, conflicting realities and more. But they never turn out well. In fact, there is a maxim in the Alzheimer’s community: If you argue with someone with Alzheimer’s, you get what you deserve.
Caregivers are better able to weather it and accept it when they understand what’s behind behavior that seems stubborn, selfish or senseless.
Bill’s wife couldn’t remember her grandchildren’s visit the day before, but it had left an impression that brought them to mind. Once they were on her mind, she wanted to see them.
Sally’s husband’s dementia has made him lose empathy and a realistic perception of the world around him. He can see that the grass was cut. He knows that’s his job, so he must have done it. Efforts to make him appreciate all that Sally does for him demand the impossible and make him defensive.
Clearly the bathrobe provided some security for Nora’s father as did the ring for Eve.
Understanding the behavior is only half the gift you can give the person with dementia. The other half is how you respond.
When it comes to arguing with someone who has cognitive impairment, there is an alternative. It takes objectivity, some detachment and loving kindness. And it’s simple.
Let the other person be right.
You don’t have to believe it. Just say it. And watch what happens.
Don’t say, “The kids were here just yesterday.” Say, “You’re right. I miss the grandchildren too. Let’s invite them over next weekend.”
Don’t say, “You didn’t cut the grass.” Say, “You’re right. It looks great. Good job!”
Don’t say, “Why on earth did you abandon the car downtown?” Say, “You were clever to think of getting a cab.”
Say, “I’m glad you have that robe. It seems to mean a lot to you.”
Say, “I’m glad we found your ring again.” Don’t count on teaching her not to put it in the wastebasket. Teach yourself to always check the basket before emptying it.
I know all this may sound like training for sainthood, but it saves so much wear and tear on you and your partner.
Some caregivers may question whether saying “You’re right” in circumstances like these constitutes lying. In my blog, “At the Heart of Dementia: A Challenge to Truth,” I came out firmly on the side of truthfulness in almost all cases. There is an imbalance of power in the caregiving relationship, and lying to people takes even more power away from them. Furthermore, deception undermines trust and demeans those who are lied to.
The issues I talked about in that blog were matters of consequence in which the person deserves to know the truth.
But when you allow people with cognitive impairment to be right in situations of lesser consequence, when they can no longer access reality, going along with it is a loving deception. You are returning power to them. You are preserving their trust in you by becoming their ally and protecting their self-worth.
That is the gift you give when you give in instead of arguing.
Power, trust and a sense of self-worth: to salvage these in the slowly deteriorating world of someone living with dementia is a precious gift indeed.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.