by Kaye Baker
Part 1, first published in the February issue of The Peak Magazine, begins a daughter’s touching story of her experiences with her mother who has Alzheimer’s. Part 2 continues “Our New Life with Alzheimer’s.” To read Part 1, go to “Our New Life with Alzheimer’s – Part 1.”
Mom (with silver necklace), granddaughter, and author stand outside assisted living facility.
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 often times 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 are 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 to 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, now they feel like gifts. Then once again I realize, we did in fact have a conversation because we exchanged ideas through spoken words, jumbled or not, we are still talking. There will be a day that won’t happen.
Mom (center) out for breakfast with her grandchildren, Brent, Amy, and Marcy.
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.”
Mom and Dad on Patio.
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 40’s die, one cell at a time from prostate cancer. He was given 2 months to live and after 5 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 10 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 that 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.
Three of the author’s grandchildren playing practice games of Yahtzee between “Girl’s Night’s,”
As I get ready for another weekly round of “Girls’ Night” I am thankful for my 3 friends who have faithfully showed 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 on, 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!!!!
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.
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Our New Life with Alzheimer’s, Part 1
February 15, 2016
Wow you are too amazing for words you do make a difference in her world she is beyond blessed to have you for a daughter
Or sister
March 2, 2016
It’s amazing how each experience with Alzheimer’s is different. I lost my mom last October to it but mentally had lost her 3 years before. It completely changed her personality. A woman who was once so loving, kind and my best friend became hateful, angry, mean, and sometimes violent. I tried to mostly try and remember the good times we’d shared but some days it was so very hard. I’m amazed we were able to keep her at home where she finally went peacefully surrounded by her children and grandchildren after years of torment from this horrible disease. My heart goes out to all the families dealing with it. I pray for the day a cure will be found.