I asked my good friend Amy Olson, if she would share her experiences with her mother's struggle with Alzheimers Disease. Watching how Amy copes, and witnessing her mother's deteriorating mental health has been life altering for me. Last summer at the pool, Judy shared stories with us. She said that her Dad works at the firehouse right across from Wrigley Field. She takes the train to visit him after school where he would get her and her friends into games for free. She spoke as if this was happening right now, not 50 years ago. It's tragic watching the bright spark dim within an amazing person, and I love that Amy is sharing her story with us here today.
Living with or caring for someone with Alzheimer’s disease is really hard to explain to someone who has not lived through it. It is not about your loved one repeating the same story or asking the same questions over and over again. It really has nothing to do with them forgetting where they left their wallet, keys or forgetting where they parked the car at the mall.
Well, let me clarify, in the beginning that is what it is like, but those are just the clues that something is off and you are headed down a road that will take so many twists and turns, ups and downs that you feel like you are on a roller coaster ride that never ends.
Alzheimer’s disease is not forgetting where you left your keys, but actually forgetting what the keys are for. There is a distinct difference between those two statements. Everyone forgets things now and then, but we do not forget that deodorant is not face cream, body lotion does not go in your hair and that you drink soda, not pour it over your pasta because you are not sure what to do with the can and it seems to make sense at the time. As the disease progresses, there is nothing you can do but watch your loved one slip further and further away into a world that no longer makes sense to you and I.
My mom was diagnosed with early onset Alzheimer’s at the age of 65, and from what the doctors have told us, early onset can move very quickly from annoying forgetfulness to a dramatic decline in daily living. Boy, were they right. My Mom, Judy, has been declining rather quickly over the past five years as Alzheimer’s takes hold of her and not only robs her of her memories, but is unforgiving in taking away the basic brain functions needed to perform daily tasks that you and I take for granted. She is trapped in a world that doesn’t make sense to her most of the time, and it is our job to make sure she feels safe.
Someone asked me once how my mom was and I tried to explain it. I said, “ It’s like being dropped into a foreign country where you don’t speak the language, the surroundings and people don’t look all that familiar and no one has told you what you are supposed to be doing in this place while everyone around you seems to understand what is going on."
I can go on and on about all the different things Alzheimer’s disease can take away from a person, but I never expected or prepared for the disease to silence my mom. She is quickly losing the ability to hold a conversation, find words to express her thoughts and communicate her wants and needs. Worst of all, she really has no memories of our family anymore and is unable to grasp who we are at times, and that those adorable kids running around her are actually her grandchildren that she so adores. As we watch my son Jack play basketball I will remind her several times that #24 out on the court is Jack, her grandson, and for one split second her eyes will light up in recognition and then in a flash it is gone and she is again just kind of staring into space in her own world.
Over the years I have adjusted to my mom’s decreasing mental function, and we now spend our days coloring, stringing beads or doing some other mindless task that makes her feel like she is contributing in some way. She sees her coloring book as her job and is proud of her work. She likes to show off the creations she made with her beads and feels satisfied arranging a pile of buttons I have laid out for her to play with. She is always looking for validation for a job well done. I have learned that as long as she has something to do, she does not get as agitated. The trick is to continuously find things that her brain can master because with each passing week, more and more connections are lost and the tasks need to get more simplistic.
What I struggle the most with and was completely unprepared for, was the lost memories, her inability to make familial connections and the lack of conversation. Just a few short months ago she could at least recall certain past events and we would talk about those events which made our long days together not so bad. I didn’t care that the stories were sometimes made up because the people in the stories were our family or that two or three different stories now bleed into one. I didn’t care that she couldn’t remember the kid’s names, but she could still recall them playing at her lake house and loving splashing and jumping off the pier. It gave me peace that I could pull her out of this hazy fog and connect with her even if it was for a short time.
Now that ability is gone, and along with it, goes my mom.
I started seeing a therapist to help me cope with the wild mix of emotions that occur daily when dealing with someone who has Alzheimer’s. He told me that I am mourning the loss of my mom even though she is still here physically, and that that is a very strange place to live in. He advised me to try to make peace with this and to simply meet my mom where she is at in that present moment. Don’t force conversation, as that will only frustrate her. I was reminded that this is harder on me than it is on her. She is like a clock that is continually resetting itself where the past moments are gone, and she is reset in the present over and over again. So, Monday, I set my mom up across from me at the dinning room table with her coloring book and pencils and she colored as I worked on a sewing project. I continually resisted the urge to talk and connect with her in that way. We listened to music to break the silence, which she really enjoyed. What I learned that day is that silence can be golden and to live in the present moment with her. She talked about her coloring and swayed to the music, we even got up and danced in the kitchen to a Doobie Brothers song that she connected with. It was a much more peaceful day and I realized that I may not be able to connect with my mom via words anymore, but I can connect with her on different level, a level that brings us both peace. One day I will look back on these days and remember coloring with her, dancing, singing and just being with my mom in the present moment, wherever that may take us.
As I finish typing this, my stepdad has pulled into the driveway to drop my mom off for the day, a much needed and much deserved break for him. I promise myself that I will not force conversation. I will not force her to remember because it makes ME feel better. I will let her lead and follow her into her world and be happy and content because she is happy and content.
I love you Mom.