Living with and caring for family members who have Alzheimer’s is hard. It is as though the person you know is disappearing in front of you. They are there in body but no longer mentally and emotionally engaged. It is tantalising. Some days there’s a glimpse of the person who loved you, many other days, none.
Some people speak of personality changes. “It’s like having an angel in the house,” my friend said of her mother. “She floats around the house aimlessly, smiling.”
Others are less lucky. Another friend’s tall and heavy husband became aggressive as his Alzheimer’s disease progressed. Later, as incontinence set in alongside frailty, the challenges, both emotional and physical, to assist her husband in dressing or changing nappies became overwhelming. She was fortunate to be able to afford carers to help.
What can we learn from our shared experiences that can help us navigate the difficulties of living with a family member who has Alzheimer’s? I’ve come across three “kindness practices”.
The first is to practise an “improv theatre” dialogue approach – to make things up in the moment that can create a story flow. Many of us will have played that party game where someone starts the first sentence of a story, and then everyone, in turn, adds another sentence – and there’s curiosity as to where the story will go.
In 2020, I listened to a recording of a radio show, This American Life. Producer Chana Joffe-Walt interviewed actors Karen Stobbe and her husband Mondy on how they applied their acting training in real life when Karen’s mother, suffering from dementia, moved in to live with them. The challenge for families is how to have conversations. No point trying to go down memory lane – “Do you remember when you and dad met?” – when the person has lost their memory. And what do you do when the person asks for another bowl of ice cream, having forgotten that they just had their dessert half an hour ago?
The important clue of what to say is to go with the flow and avoid correcting the person. Imagine the scene below – a mother now permanently staying with her daughter and son-in-law.
Mother: “I want to go home.”
The corrective response, “but this is your home now,” may result in emotional upset.
So, what to say instead of correcting?
“What will you do when you get home?” or “What does your home look like”, “What do you like about it?”
And sometimes, your response will need to be imaginative. Mondy heard his mother-in-law say: “Look there’s a monkey in the garden.”
This might be true in South Africa but not in North Carolina. Correcting the error will upset his mom-in-law. Instead, Mondy replied: “Oh, they’ve arrived early this year. I didn’t see it. Let me know the next time you catch sight of one.”
My husband tells me how he wishes that listening to the American Life episode had happened earlier in his life. He travelled to visit his father just before he died. His father, a retired GP, fluent in conversing with his patients in English or Afrikaans, greeted his son: “Goeie more, meneer. Hoe gaan dit?” (Good morning, sir. How are you?).
His mother stepped in to correct her husband, to tell him this was their son, John. Both men were wrong-footed, not an easy start to one of their last times of being together. How might it have turned out differently if my husband, also a fluent Afrikaans speaker, had responded easily: “Ek is goed dankie, en jy?” And then where would the conversation have gone to? We will never know.
The Café of Mistaken Orders is the second imaginative act of kindness I just read about. (Washington Post 19 September 2023). The Café is in Tokyo. It is small with seating room for just twelve people. If you want a chance to be a server, you must have dementia, and you get a turn once a month. Things go wrong, but patrons do not complain. One server forgot his clipboard to take orders, delivered cake to the wrong table, and it took sixteen minutes to get a customer his cup of water.
The café’s owner is working with the local authorities to connect with people with dementia in the neighbourhood. Servers wear orange (the colour associated with dementia care) and use order forms designed for simplicity — items colour-coded to be marked – eliminating writing. For Toshia Morito, his monthly shift in this safe space with no fear of criticism is his favourite day. “It is so much fun here. I feel I am getting younger just being here.”
The Café of Mistaken Orders is not a standalone. Dementia cafés started as pop-ups in 2017 – since then, the concept has spread throughout the country, and now many establishments are permanent.
The third act of kindness is about doing less rather than more. I came across a doctor willing to let nature take its course. His patient, in her 90s, with dementia, had been frail and bedridden for months, no longer speaking. When she got an infection, the doctor’s trained, automatic response was to prescribe antibiotics. But he checked himself, and in conversation with her children and grandchildren, he listened to their request that he should not prolong her suffering by addressing the infection. He made sure she was comfortable and free from pain. She stopped eating and drinking, which often happens when a person is close to dying. Again, there was care not to interfere with the natural process – no one suggested intravenous hydration drip or that she be spoon-fed. Within a week, I received the message: “Mom passed away. She is at peace now.”
Worldwide, our longevity figures have improved. Quid pro quo, the number of people ageing with severe memory loss is on the increase. We’ve learnt how to care for newborns, now we need to learn new skills to care for those at the other end of the wonder of life.
Visit our website www.lovelegacydignity.com for information on our November 2023 workshop series, Live By Design – Finish Strong.