One womans journey
One woman's journey
Remember your high-school yearbooks? Their pages sprinkled with hope, favorite quotes and future plans? Every year, someone would mention my mother’s chocolate chip cookies. Whenever friends would drop by the house, they would inquire about the cookies and wait around just in case there was a batch in the oven. One of these lazy Sundays, I want to spend the afternoon with mom and my daughters learning the art and craft of those delicious cookies so that we can bring those cookies to another generation. As easy as it sounds, there would need to be some planning. We will have to ensure that my dad is there to help, as he has become her anchor these days. The girls will have to be on their best behavior to not distract ‘nanny’ too much.
We knew something was different with mom for close to four years now. She struggled to notice objects that were directly in front of her. She was forgetful and found it hard to focus. She was keenly aware of these changes and they troubled her. Initially, the recent death of her father and a prolonged grieving period was thought to be the cause. After an exhaustive process to exclude all other causes, she was diagnosed with Alzheimer’s disease one year and three-hundred-fifty-five days ago.
The disease is devious; progressing at whatever rate it chooses that day. There are better and worse days but overall it moves forward with glacial determination. At 59, she is barely entering her golden years but instead of thoughts of lazy days and southern sunsets, she is fully aware of what this disease is doing to her. Typically, Alzheimer’s Disease robs the individual of insight into the degenerative process providing them with a built-in mechanism. Coping at our house is anything but automatic. The silver-lining is that mom continues to be a positive driver of change in our house. She continues to help us come to terms with what is happening in front of us. Her shift of focus away from herself continues to inspire us to raise the bar, just as she continues to do everyday.
When the diagnosis was established, the tears and denial were mostly ours. As always, she kept a cheerful head up and said, "It is what it is; I won't let it get me down."
Mom has always loved walking. She still does it at every opportunity, but follows a certain route that she is very familiar with. She recognizes days that are worse than average as ‘foggy’ and chooses to walk on the treadmill those days. When I call her in the morning, I find out if and when she plans to walk. Dad talks to her many times a day and, while he may not admit it, I know he checks in routinely to see if she has returned. As before, Mom thrives on routine but is becoming more dependent on it. Her sisters routinely call and text her and get together on Friday nights for a little shopping followed by a glass of wine. My siblings and I call at a specific time each day, everyday, so she knows it is us before answering. She encourages us to text her messages and photos, but we know not to always expect a prompt response. Typing a cohesive reply is easier some days than others.
She has always been a laid-back type of person and never let anything get her down. I can remember coming home from school and having to admit to doing something that I was not proud of. She said "Roseanne, you know better. I'm disappointed in you", and that was it. She would tell us how she felt and then moved on, encouraging us to do the same in our own families. If she is having a bad day, she chats with one of us about it, vents a bit, but then picks her chin up and says, "It is what it is, I won't let it get me down." My siblings and I take turns comforting each other. Some days, when I call crying, they find humor in the situation making it a little easier to cope. We all take turns tempering the tempest of emotions.
Even dad is learning from her. He is famous for planning everything and having to schedule his way through life – impossible with Alzheimer's. Every case, every day, every diagnosis is different. He now takes each day as it comes and enjoys every lighthearted moment. When she tells him to stop hovering, he does. When she tells him about the silly thing her grandchild did, he laughs, no matter the first or the tenth time he has heard it. When he gets frustrated, or lost, he talks to someone.
Our immediate and extended family has been very supportive. When I tell my husband that we are having a family night, it could mean many more children than just ours. Visiting would be some cousins, most of my aunts and uncles and a webcam set up on the kitchen table for those that live out of province. Mom is still at the heart of the party, but standing back you can see slight changes. Unknowingly, we orbit around her protectively, trying to let her be independent. We make more of an effort to speak one at a time, to slow down our conversation and to reminisce. She visibly relaxes when her brothers and sisters are around. I am so appreciative that they too recognize this because they now make an even greater effort to spend quality time with her and each other. Our extended family forms a strong network of support for us and checks on us frequently.
I have no doubt that we are going to be in for some tough times. Fortunately, mom’s positive attitude and all that she has taught us will give us strength and help us help her – as a strong family unit. It is what it is and we won't let it get us down.