Alzheimer’s, The Challenges of Finding Fun

As Alzheimer’s progresses, it gets harder to find fun.  One activity after another, Bill’s world shrinks according to what he (and I) can cope with doing. Last summer, he paddled with the Brave Hearts Dragon Boat Team. He loved being out on the water, and participating with the people on the team. He has always been strong, and has paddled canoes off and on over the years since he was a child. Paddling in unison with anywhere from nine to nineteen other people is a different skill, though, and took some learning. Fortunately, the team coach, Calvin, was always patient and encouraging. The first competitive event of the year was ‘Race the River’ right here in Campbell River. And that was when a whole new set of challenges appeared.

While I watched the event, it became clear to me Bill needed very strong support to participate. He needed someone to help him suit up, and to get to the start line for each and every race. Once when the team was called to the start, he headed off to look for a washroom and then couldn’t find his way back to them. He was rounded up, the team got there in time, and everyone enjoyed the day, but it was challenging. It let me know he would not be able to travel with them to other venues to compete unless I could go with him, and we would have to drive separately because there was no room on the bus for extra passengers. So, he continued to practice on Tuesday and Thursday nights, but he did not go to race meets, and that had other consequences. Sometimes it meant the Brave Hearts didn’t have enough paddlers to compete, and even when they did the dynamics in the boat were changed because he wasn’t in his spot. That presented challenges for them.

This year he’s become more confused and any changes in routine increase his problems with location and doing what is needed to carry out a task. So we’ve turned in his jacket and life-vest and he will not be paddling with the team this summer. That decision made us both sad. What now, I wondered? I’ve always believed the more involved with the community and activity he can be, the better.

Happily, there are still activities he can do, some of them without me along as driver or chaperone. We live close enough to the Eagles for him to walk there on his own, or take his scooter, whichever he prefers on a given day. There, he plays pool and chats with whomever else happens to be around. He loves the independence this affords him, he gets some exercise in the bargain, and he feels a sense of community. He’s an excellent swimmer, too, and for more exercise he swims at least twice a week at the recreation facility he managed for 26 years. His prior staff always greet him with warmth and make him feel he is still a part of that community.

Bill used to carve. He turned out dozens of loveable folk characters, and mythical beings inspired by his own imagination. Turning blocks of wood into 3-D characters has become too challenging now, but he still likes form and color. So, recently I signed us up for watercolor painting classes at the local art gallery. Demonstrations and instructions on technique largely went by the wayside for him when he sat down to his paints and paper, but he has such an instinctive sense of design the instructor asked him if he’d been an architect or engineer. She is a lovely woman, very encouraging to all the students, and her warm words gave Bill a new interest he now carries on at home and it’s very evident he’s having fun creating art. To me, it is truly art because, like his carvings, his drawings and paintings are generated from somewhere deep within himself and have wonderful flow and vibrancy. And his designs are truly unique to him.

What I’ve learned in the past few months particularly is that as it becomes more challenging for Bill to do familiar things, new activities can be explored, new communities established, and the results can be surprising. It’s easy to become complacent, or give up. But that’s depressing. Much more fun to search for and become involved in new things. That’s living. For both of us! So we’ll go exploring, take every new path we can that might lead us somewhere interesting, for as long as we can. We’ll keep finding the fun.

2 thoughts on “Alzheimer’s, The Challenges of Finding Fun

  1. jocelynm Post author

    Thanks to all who have submitted such positive comments. And heartfelt thanks to you, Kristin, for listening and for being you. I was just thinking tonight about the progression, worrying and fussing inside myself. I’ve been through something like this before with Bill’s Mom though her dementia didn’t really surface until she was into her 80s, and I lived with my own Mom in the months just before her death from cancer and was with her until the end of her journey. She wanted to die at home. Luckily there were two other sisters who shared the duties involved in taking care of her. I found it difficult, but we had laughs together and shared memories and I was so grateful I had the opportunity to be there. The only way I can cope with this is to keep telling myself it’s about the journey, and hang onto whatever moments bring joy to get through the tears. It’s not fun. But in life there is fun and I don’t want him, or me, to miss it.

  2. Kristin Butcher

    I see how difficult the progression of this disease is for both you and Bill, but instead of giving in and giving up, you find ways to continue to enjoy life and each other. That’s proof of the love and strength you share.

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