Photo of the author and her Mum, Betty Wilson in 1980
Just focus on being present.
As I wrote in Part 1, rather than give up and abandon people suffering cognitive decline, I endeavour to meet each person exactly where they are today. This takes planning and practice but can lead to rewarding moments for both of you.
A list of some principles which have for me worked so far.
1. Honour the patient’s emotions.
The last time I interacted with mentally confused Mum when she lived at home, I learned an important lesson. When visiting with my sons of 11 and 14, I’d taken over all meal preparation and
household organization. After a few days Dad took me aside and explained she was feeling hurt.
“You’ve taken over all her tasks and hardly ever speak to her,” he said. “I’ve been told that a patient’s emotions are the last thing to go, so they can still feel ignored and offended.”
Once I admitted how right he was about my take-charge attitude, I softened and actively sought her opinion. Because her reasoning was now impaired, I didn’t implement all her ideas, but she was happy to be consulted. We both felt more relaxed.
2. Laugh whenever you can.
At the end of that same visit, the boys were settled in the car for our drive to Toronto. When I popped back inside to retrieve something, Mum said to me, “It’s been lovely having you here. Next time bring the boys.” They’d just been living in her house for a week! It took me a couple of weeks to be able to recount her statement to others and laugh about it.
Two years earlier, my parents took the train from Montreal to visit us for several days. When they were about to depart, I went to help Mum pack. Lying in full view in her open suitcase were my Birks silver dresser set and a framed sampler embroidered by an ancestor in 1818! I secretly removed the items she was about to “steal” and managed to laugh with my family after my parents had left.
3. Prompt recall with photos.
When mailing a letter or card to friends with Alzheimer's Disease (AD), I include a couple of photos to remind them who I am. A photo of us together, with date and description of the occasion, brings comfort and prompts recall (which may be fleeting, but gives pleasure). Caregivers tell me these photos are often kept on display.
4. Verify plans repeatedly.
After planning to see each other, I send an email to the caregiver to be sure it’s clear what will happen and when. Then I telephone my friend a couple of hours beforehand to repeat exactly when
to expect me and what we’ll do together.
5. Accept superfluous help.
Putting myself in my friend’s shoes, I thank him when he tells me how to drive to our destination. Even though I know the way, he feels knowledgeable and useful when telling me precisely where
to turn and where to park. So much of his day involves feeling foggy-brained, clearly recalling a familiar route brings him joy.
6. Stay in the now.
When reconnecting with a fullyfunctioning acquaintance, you likely ask plenty of questions: “Do you remember the time…? How’s your daughter doing?What are your plans for the summer?”
Questions can threaten the AD patient because they seldom know the correct answer and worry about getting it wrong. I try to avoid putting them on the spot by using statements. Instead of “How are you doing?” I say, “How lovely to see you again!” When describing a person or place she previously knew well, I overexplain – to pre-emptively fill in the details.
When I hear my friend searching for a word, I guess and try to supply it. You need to listen carefully and be completely present to be helpful.
Isn’t that what a social interaction is all about? Nobody knows whether you two will ever see each other again. What matters is your time together today. To keep it smooth and meaningful for your friend, just focus on what will give your loved one the most delight.
The AD sufferers I’ve spent time with enjoy talking about concrete, visible things (like a necklace I’m wearing) in lieu of abstract ideas or opinion we would have discussed when healthy.
If you manage to stay relaxed and flexible as conversation ebbs and flows, chances are they will, too. If you sense that your friend isn’t exactly sure who you are, don’t worry about it. Don’t put them on the spot by asking outright, “Do you remember who I am?” Just drop lots of clues.
Be happy that you are in each other’s company and able to share a goodbye hug before they disappear completely.
“Watching Loved Ones Disappear” was published in its entirety by the Alzheimer’s Association of Northern California and Northern Nevada. My version was edited to meet their publishing standards.