My favourite times at work were when I could step away from the computer, the meetings and all the other responsibilities and sit and chat with the ladies. We were doing just that one afternoon when the conversation turned to Christmas cake. A long-ago memory bubbled to the surface for me, of a time as a nine-year-old when I visited a cottage. During my visit, on a scorching August day, I saw fruitcake being constructed and it made an indelible impression on my young mind. The hugest bowl I’d ever seen, so many ingredients and the mounds of batter almost too heavy to stir. As I shared my memory, eyes brightened. They’d made fruitcake in the summer and stored it away, soaked in rum and wrapped in cheesecloth, until the time for unveiling at Christmas. I saw faces alive with animation as they discussed family recipes, and the germ of an idea began to form in my mind.
Could we make fruit cake?
Long-term plans generally don’t work with people with dementia, but I steered the “long-term” aspect. To them, the project turned into a series of experiences which all reminded them of aspects of preparing the fruitcake which made Christmas complete. I searched through recipes, online and in old cookbooks. I knew the rum wasn’t a possibility. I wanted to keep my job at the end of the day, and that wouldn’t fly among the administration. I finally found one which soaked the cakes in pineapple juice. We met one day to put together and bake the cakes, and a lady living in one of the independent living apartments took them to her place and faithfully soaked them for us. In December, she brought them back and we spent a day cutting and wrapping. It resembled what you used to receive at weddings, and that brought another round of reminiscing. A fair bit of snacking occurred that day, and even the fruitcake haters in the group agreed ours tasted superb.
Then came Open House, the day when Christmas decorations hung from every corner and each resident and staff member wore their finest. In the afternoon, family members and other guests arrived and we partied. At the elevator, the gateway to our floor, sat Edna in her wheelchair. A former nurse and a commanding personality in her day, she suffered from dementia and anxiety. However, today she had been put in charge of the fruitcake, and her shoulders squared with the importance of the responsibility. Each time the elevator opened, she pointed to the wrapped and ribboned slices arranged on the tray in her lap. Her voice carried more command than invitation. “Have some fruitcake. We made it.” In a short time, not a slice remained.
Edna didn’t remember the process of baking, soaking, cutting up and wrapping the fruitcake. She had a job, and with an immense sense of purpose, she carried it out. All the ladies who participated along the way only vaguely understood that we were making this for an event, but they knew they were doing something important and needed.
Purpose for people with dementia often comes down to support. Given support, they can experience purpose in many aspects of their lives.
How much support?
Because Alzheimer’s and other forms of dementia are progressive diseases with good days and bad in all stages of the journey, the challenge comes with knowing how much support is enough? Too much becomes suffocating and patronizing. Too little can be a safety issue or allow a sense of purpose to fail like a deflating balloon. What works today might not be good for tomorrow. How do you know?
The short and the long answers are, you do your best. For me, working with people with severe dementia, major support was usually needed. Even then, though, I got their input and involved them in the process. Sometimes, especially in the early days, I did too much and had to learn to back off. Sometimes, like the day a resident swallowed a purple oil pastel, thinking it was a candy, I probably should have provided more support. (The resident survived just fine. I almost had a heart attack.)
A story of respect
A woman with mild to moderate Alzheimer’s went out for a walk. She wanted to visit a specific destination which she knew well, and felt sure she would be able to find her way. She’d done it many times. However, as she walked, she discovered construction and a detour preventing her from going the most direct route. She tried a few things, but realized she was lost and getting tired.
At home, her husband followed her movements from the GPS on her phone. He could tell from what he saw that she had lost her way. However, he waited. She eventually phoned him, and he went and found her and together they went to the place she’d wanted to visit.
The wisdom and respect of this man blew me away. He didn’t come to her rescue until she requested it. Because of technology, she remained safe, but because of his attitude, she had control.
To maintain a sense of purpose with someone with dementia, give support with an undergirding of respect. Most times, this will lead to the right amount of aid. And if not, forgive yourself and move on.
CLICK TO TWEET
Yes…we used to do baking with our residents too. One day one of the ladies told us about a recipe she used to make that was a favourite with her family. I asked her if maybe she could get the recipe from her family, and we could make it. She replied “I have made it so many times, I think I can remember” …and she proceeded to dictate the recipe to me. I was a little skeptical, but decided to give it a try…and it turned out to be amazing. We had a great time recreating her recipe…she was so proud that she had remembered it correctly, and was able to share it with her friends. I have it written in my book of handwritten favourites, and always think of that dear little lady when I bake it!
What a sense of purpose that lady had!