My parents both had many siblings, so when we got together for a family picnic, the aunts, uncles and cousins were everywhere. We’d gathered at a local park, and plates of salads and desserts filled the wooden picnic tables. One of the uncles stood barbecuing hot dogs nearby. Happy chaos ensued.
Until it didn’t.
In my early 20s and newly married, I was dealing with many changes in my life, not the least of which was my mother’s Alzheimer’s diagnosis. We’d noticed differences for a while, and none of us fully understood the implications of this new diagnosis.
The aunts were gossiping, with my mother as the topic. As I stood near the food table unobserved, I heard them chewing over what they had seen and what they thought it meant. I felt like they were somehow disrobing her, and it made me furious.
Then the alarm went up. Where was she? In seconds, the aunts began rushing around, seeming to enjoy the drama. I’d been brought up to respect my elders, so I’m sure I used a restrained tone as I informed them she’d gone to the bathroom and would be back in a minute. For the rest of the day, I stayed close to Mom, keeping between her and her siblings .
It wasn’t until recently that I completely understood why I’d been so angry that day. My aunts had allowed the new diagnosis, perhaps fascinating and somewhat frightening, to take precedence over their relationship with their sister. They couldn’t see her any more.
As caregivers, the diagnosis can seem huge. It is huge. There is so much to understand and to figure out in terms of care and support. Care needs may change daily, and it can be overwhelming. As a friend or family member, not directly involved in care, you might struggle with questions like, “What should I say? What can we do together? How can I relate or maintain this friendship? How do I support?” All of these concerns are real, but they can also get in the way of relationship with the person behind the disease. Here are a few suggestions:
Don’t be afraid to go big
I’d been trying for a while to relate to Michael. He struggled with many physical issues 
beyond his dementia, and preferred to remain in his room except for meals. That would have been okay, except he clearly wasn’t happy. His wife said he used to socialize freely and had many friends, but they were elderly, too, and unable to visit him. He turned down any of the activities I offered geared to men. One day as I sat chatting with him in his room, I noticed a basket of magazines. They were all about trains. When I asked him, his face lit up, and we had the most meaningful conversation yet. I didn’t know much about trains, but it was obviously Michael’s passion, and his face glowed as he talked.
That night, I phoned a friend who was a train buff. Would he come in and chat about trains with Michael? He did much better than that. He brought his fellow train buffs and a section of what they took to malls on the weekends and did a presentation. Michael sat in the front row and engaged the men with questions and knowledge.
Sometimes, it’s an accidental discovery
Barbara never seemed happy. She made sarcastic, often nasty comments and wasn’t much liked among the other residents. When she came to a flower arranging activity one day, I didn’t hold out much hope. I got a surprise. The woman beside her seemed at a loss what to do, and I hadn’t gotten to that side of the table yet. Barbara began instructing her. At first, she used her normal, stringent tone, but her new friend continued asking her advice. Soon, they were working as a team. Barbara had been a nurse and had been in charge all her life. She felt stripped of that by the many medical issues she struggled with. When she could make a contribution and help someone, she blossomed.
. What brings out the sparkle?
For Michael, it was his lifelong love of trains. For Barbara, it was feeling she could contribute and make a difference. Here are some other suggestions:
- being asked for advice
- woodworking (even just sanding pieces to glue together for something simple like a birdfeeder)
- planting things
- watching a familiar movie together
- time with grandchildren
- some part of food preparation
- a chat with an old friend
- being a part of gift decisions
The list could be much longer. Look for the seeds of sparkle–activities which bring joy to your loved one’s face. In doing this, you are looking beyond the disease and seeing the person.