Our New Life With Alzheimer’s
by Kaye Baker
I’m sitting with my mom today and again wondering what I can 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 the “informal exchange of ideas with spoken words;” however, the words are now 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 shit hole 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 clears 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.
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 that provides “memory care” for about 30 residents who have Alzheimer’s or some other form of dementia. They all live on the 2nd 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 kickball with beach balls, and enjoy entertainers who sing the hits of their younger days when music was more impressionable to them. They go on bus outings and sometimes attempt bingo, which I can only imagine is a lesson in patience for the bingo caller.
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. Some Days 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 ordered something familiar and simple for her. She sometimes forgets how to use her silverware and will tear her napkin up into a million pieces. Then, she looks at me and asks, “Is this right?” Of course, I said yes and told her what a great job she had done 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 almost 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.
Of 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 about that fact. It’s tough because, on 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.
Life isn’t always happy or fun for my mom. Her common theme is, “I’m gonna just quit this job, they don’t even pay me.” I’ve learned this is her way of asking for money, but the last time I gave her $150, it was gone without a trace. Every time I leave her, it is painful. She never wants to say goodbye to me, and she does her best to come up with reasons for me to stay. It’s oftentimes like dealing with a child who will do whatever it takes to get that one thing that they just can’t live without! “Please, please, please, can I come live with you?” she will say, “I will be good and take care of you.” How do these painful sentences come out so clear when we were just talking about “the chief swamp crow swatting the arm sleeve so that it could bring October for a bunny party?” The upside of short-term memory loss is that if you wait a second or two, this too shall pass, and you will be on to a whole new topic. That’s good for me because I rarely can keep up with the topic at hand. I’ve gotten pretty good at our childhood memories. Since we are now sisters, when questioned, I often use the line, “Doesn’t he live down the lane?” That brings a smile to her face because we are connected in a faraway land. I agree with everything, and I do my best to make her feel happy. I’ve promised we can live with Mother and Daddy. We can go on a trip to see aunts and uncles I’ve never even heard of, and, of course, we can get her a dog and a new pair of shoes every single day. At first, these felt like lies, but now they feel like gifts. Then, once again, I realized we did, in fact, have a conversation because we exchanged ideas through spoken words, jumbled or not, we were still talking. There will be a day that won’t happen.
Please don’t misunderstand. Alzheimer’s is terrible. I don’t like the way that my mom can no longer brush her teeth and doesn’t want anyone else to either. She would never have done that in former days. She can’t dress herself or make any personal decisions. The sparkle in her eye is often replaced with twitching which I know indicates she is searching for words to fit in and be a part of the whole. She has always loved clothes and cared so much that her outfits were perfectly put together, and now she wears whatever her caregivers put on her. She still admires her purses stacked in the corner of her room that she can no longer use and the many pairs of shoes that she loves. She has spent her lifetime giving to anyone who comes into her life. If she has something you admire, it’s yours. That has not changed. She gives away everything. The other day, she had a bag prepared for me, which included a hearing aid (the other is long gone, along with the charger), her jewelry, a nightlight, some batteries, a few pieces of plastic silverware, and a pair of glasses that someone probably gave her. She couldn’t wait for me to get the gift. As I started to look through the bag, she edged in close and said, “I want to see what you got.” When I picked out the box with the jewelry inside she said, “Oh can I look first, I love jewelry.”
It’s impossible to pinpoint when my mom’s dementia really began. There has been so much tragedy in our lives over the past several years that I think the pain slowly ate away at her ability to deal with the reality of watching my brother in his 40s died, one cell at a time, from prostate cancer. He was given two months to live, and after five years of tremendous pain and suffering, I think pieces of both of my parents died along with my brother. I can’t help but think the pain of losing a child would throw anyone into a jumbled brain trauma. When my dad was diagnosed with a blood disease that caused him to have blood transfusions every ten days, my mom’s strange behavior became more noticeable. She had to watch her amazing husband of 66 years die a slow and painful death, just as my brother did. He spent his life on earth making sure she had the best life could possibly offer. As his health dwindled and even in his most desperate days, he cared for her, and she spent those days trying to find a place in her brain where some of this pain could be stored so she could go on.
For as long as I can remember, I thought that when one of my parents passed away, the other would wither up and die within a year. I never factored dementia into that scenario. With these diseases, sometimes comes a sense of peace for the patient. Not peace in where they are or who they are living with, or the moments in life that cause angst, but the bigger picture of peace. The one that doesn’t cause long-term worry, such as financial woes or mortgages to pay. That is gone, and so the heart takes a great big break, and a person can slow down and sometimes live way longer than they ever had imagined in the “map of life” they had laid out for themself in their younger years.
As I get ready for another weekly round of “Girls’ Night,” I am thankful for my three friends who have faithfully shown up with me at my mom’s every single week for a year and a half to play Yahtzee and eat dinner. She asks me each time I see her, “Is tonight Girl’s Night”? The game of Yahtzee we first played a year and a half ago is very different from today’s game. She can no longer keep score or follow along very well, but no matter what form the game takes, what really counts is that my amazing friends show up each week and give my mom a sense of family and belonging. So to each of my friends – Amanda, Eileen and Jim (yes he’s included in Girl’s Night)…To the world, you may be just another friend, but to me and my mom…you are the world!!!!
