Chapter 53: ‘Tis the Season…?

Growing up, I was always jealous of people who would tell the stories of too many people in the house over Christmas dinner – the craziness, the too many hours of clean-ups, even the fights! I don’t know, I guess it just sounded so exotic to have such a large family and to spend the major holidays with 40 or 50 people all in one place.  I was therefore all in when mom first organized this group about 20 years ago.  I finally felt like I had my own big fat Goan family – and even with all of the stress (and sometimes just a little bit of drama), it felt like we were finally celebrating Thanksgiving, Christmas and Easter “properly.”  Now that the original set of kids have grown up and many of us have children of our own, each of our gatherings can be between 30-45 people, depending on who is in town, and every time we get together, it’s a tonne of fun.

Not insignificantly, as we have started to talk a bit more often about some of the struggles that mom is going through with her memory, this group has also been a really big source of support for dad and me.  We don’t need to put on appearances with anyone or make excuses for anything that happens. And that can be a form of relief just on its own.

I suppose that’s why today felt a little weird.  This is mom’s group – it exists because SHE made the effort to get all of these families together and start the community building that has now turned into a can’t-miss tradition of a whole lot of family-by-choice.  Yet today was the first time she really didn’t seem to participate in many of the conversations at all.  She certainly seemed happy enough to be present, but…something was off.  She just isn’t her usual, bubbly, chatty self.  There may have even been times where it looked like she couldn’t wait for my dad to say he was ready to go home.  This apparent personality change is going to be such a difficult aspect to navigate – especially since it looks like it’s definitely here to stay.

I’ve started to talk to dad more about additional supports we can access.  Last week, he and I didn’t tell mom that we snuck off to the annual community lunch put on by the Alzheimer’s Society.  I had asked dad if we should take mom but he said no – he didn’t want her to feel stigmatized by attending.  Which was fair enough.  But then we got there and experienced what an amazing event it was – and I immediately felt guilty for mom not being there.  She would have loved it.  When I went over to speak to one of the senior leaders to express my thanks about the work they do and their continued check-ins, I completely broke down in tears.  Was not expecting that!  Anyway, she told me about some of the resources they offer, including a tandem support group where the people living with dementia participate in one room while caregivers are in a separate one.  I wonder if that would help?  Mom would get some socialization and I might be able to learn something from the other caregivers.