What to Expect from Cindy

I denied my Mom had Alzheimer’s while we were taking care of her. Back then people expected that advanced Alzheimer’s patients stopped recognizing the people around them. I concluded that Mom must have senility dementia instead, because she always recognized her family up until the end. Our society (and me in particular) have become better informed about Alzheimer’s since then. In response to some concerns raised by my previous post, and in prelude to Cindy’s upcoming birthday party, here are some reflections to separate the expected from the unexpected.

The cause for concern was the implication in my previous post that this could be the last birthday party for Cindy. What you can expect from advanced Alzheimer’s is a continual, irreversible decline, similar to cirrhosis of the liver once that organ degrades to a certain point. What is unexpected is how that decline will take place. My Mom, who exercised little, was ambulatory until the last few weeks of her life. My oldest brother Pete, who exercised regularly, was confined to a wheelchair for his last couple of years.

Which way will Cindy continue to decline? I have no idea. Her ability to walk has declined steadily, as I’ve reported on this blog. Applying simple math to the trajectory of this decline suggests she will be able to walk very little, if at all, by the time of her birthday next year. Whether this means she will be like my Mom and not even reach her next birthday, or like Pete and continue on for a couple more years confined to a wheelchair or bed, I don’t know.

In either case this Friday likely will be the last chance for a birthday party where Cindy’s friends celebrate her life, with her being able to appreciate that. As for now she is physically healthy and happy; nothing new is wrong with her outside of the inevitable decline that comes from advanced Alzheimer’s. Hopefully everyone can adjust to that reality for the party and accept Cindy for where she is in her life now.

The birthday party is potluck, starting at 6:00 pm in our church’s dining room. We will take care of desert and encourage everyone else to bring appetizers, sides or a main dish. To start out our family will eat at a corner table, with Cindy facing away from the crowd. This is to avoid her becoming self-conscious that I am assisting her with eating. Normally this occurs without a second thought from her, yet in front of a group of people she can feel embarrassed.

I encourage people to greet Cindy even while we are eating, but only a few at a time. A crowd of people surrounding her will confuse her. No one, not even family members, can expect Cindy to be able to say, or even remember, our names. Yet if you have been a big part of Cindy’s life you can be sure she knows you, knows of the connection between you. You might want to say your name as you greet her. You cannot expect Cindy to remember the name, but you can expect her to smile and appreciate that you have greeted her.

I encourage you to share a memory with her, perhaps even with the gathering as a whole. Awhile ago I asked for people to share such memories with me. A few of you replied and I might read some of those responses at the party. It’s not too late to send me something for Friday, though I think sharing something with her in person would be best. Full disclosure: any nice story I hear may be material for the blog. We will also have a makeshift kiosk with photos of Cindy’s life looping through.

Cindy, along with most Alzheimer’s patients I’m sure, are affected tremendously by “vibes.” If you give off a vibe that celebrates her life and who she is, she will pick up on that and be happy. If you give off a vibe of woe for the inevitable, she will pick up on that as well. Please folks, let’s make this a joyful celebration of her life. It has been a wonderful life, after all.

Photo by Mike Hinckley