Posted By Les Conklin on Jan 27, 2016

by Kaye Baker

Mom after getting Yahtzee, which always calls for high-fives.

This story is told by the daughter of a mother with Alzheimer’s disease. It is shared in two parts. This is the first part. The next issue of The Peak will feature the continuation of “Our New Life with Alzheimer’s.”

Part 1

I’m sitting with my mom today and again wondering what can I possibly ask her that would invoke a conversation. Conversation…Webster defines it as, “the informal exchange of ideas by spoken words.” Hummm, I guess we still do have conversations. They are just different now.

They include “informal exchange of ideas with spoken words,” however the words now are scrambled and have no connection to one another. The brief sentences that do make sense are few and far between and thrown in just when I question what language we are speaking.

A simple “How are you today mom,” can solicit a number of responses. My favorite of course is, “Not worth a damn, have you seen this shithole and the bitches I live with?” See, there she goes making sense using words I didn’t even know she had available for grabs from her new vernacular. I try not to laugh as I ask, “Wow mom, what happened?” She replies without missing a beat, “Well when the big black desert came crashing through the roof, I wasn’t sure if I could jump over the paper or just bust through the center with my cart.” Obviously that cleared things up for me so I just nod and say, “I see.” Clearly, I don’t see. Every time I’m with my mom I am in the process of figuring “it” out. The “it” is Alzheimer’s.

Pictured from left to right are mom’s granddaughter, Amy, mom, and the author.

My mom is 86, and was officially diagnosed with Alzheimer’s in the past two years. She lives in one of the nicest assisted-living facilities in Phoenix. It provides “memory care” for about 30 residents, who have Alzheimer’s or some other form of dementia. They all live on the 2^nd floor in individual small apartments and share common areas. Most residents are out of their rooms and socializing with their new “friends.”

My mom’s new personality is that of a busy social butterfly interested and distracted by everything and everyone around her. Her room is small but adequate and filled with her things. The residents regularly sing songs, participate in exercise class, play kick-ball with beach balls, and enjoy entertainers who sing the hits of their younger days when music was impressionable. They go on bus outings and sometimes attempt bingo, which I can only imagine is a lesson in patience for the bingo caller.

Three of mom’s grandchildren playing practice games of Yahtzee with her between “Girl’s Night’s.” Pictured left to right are grandson, Brent, mom, and granddaughters Amy and Marcy

I love and I mean literally love the caregivers who are now my mom’s new best friends. She is mostly nice to them and tells them endlessly how much she loves them. She does the same for me. If ever I wonder how beautiful and loved I am, I just go visit mom. She is so quick to point out that I look beautiful and she loves everything I wear. She lights up when I walk through the door. I’m no longer her daughter, I am now here older sister. Somedays I’m not even that, I’m simply someone she loves and for today – that is good enough, she still knows she loves me!

She’s actually pretty funny and most of the time fun to be with. She loves to laugh and make anyone who will listen laugh too. It is a nervous laugh but if she thinks you like it – she can bring it!

She is willing to go anywhere and do anything. Often by the time we arrive at our destination for a meal she has no idea where we are or why we are there. She can no longer read a menu or know what to order so I order something familiar and simple for her. She sometimes forgets how to use her silverware and will tear her napkin up into a million pieces and then look at me and ask, “Is this right?” Of course I say yes and tell her what a great job she did tearing up the napkin. After all, this is her job now and she needs to feel validated. When we are caught with not knowing what to do next, we sing. She loves to sing and she can sing most any song from her younger days. Thankfully, I grew up singing – so this task is easy. We sing in restaurants, bathrooms, hallways and places where it probably isn’t appropriate but who cares? She feels a sense of accomplishment and for that moment in time, all is well in the world for her.

The last family photo before the author’s brothers and father passed away.

In all of this disease’s surprises, the biggest is how desperately scary and lonely it is to be her caregiver. I’m no longer a daughter who can talk to her mom about life. We lost her husband (my father), her two sons (my brothers) in the last two years and I can’t even grieve with the one family member I have left who knows their history and the impact they made over a lifetime. She doesn’t even know my older brother died three months ago and I’m glad for that fact. It’s tough, because most visits I brace myself for the question of why he doesn’t come to see her, but I guess the reality is she doesn’t remember anymore so the question has only come up once.

Part 2 continues to describe the daughter’s experiences with her mother with Alzheimer’s.

Read “Our New Life with Alzheimer’s, Part 2″

About the Author

Kaye Baker is Director of Project Development at the non-profit Area Agency on Aging in Phoenix. She is responsible for fundraising efforts including events, grant writing and solicitation of private donations to help eliminate waiting lists for senior services. Kaye is a mother of three and an advocate for her mother.