Please don’t misunderstand me - I know Alzheimer’s is a horrible, devastating disease. It robs an individual of their golden years, the plans they spent their lives dreaming about and working towards. It cheats family members of time with their loved one; erasing memories and stories no longer available to be shared and passed down. Not to mention the strain of acting as a caregiver, watchdog and advocate and the toll it takes on everyone involved.
But, here I am. My mother, Joyce, was diagnosed in 2010, although it had started years before that. By late 2010 the disease had escalated to where she was no longer safe living alone and she was moved into assisted living. Mom had sacrificed throughout her life in order to save for more traveling in her retirement. Paying for assisted living hadn’t been the plan.
If I got to make the rules, of course I would rather Mom be healthy and have her full faculties; following her favorite tenors around the globe, listening to opera, drinking wine, eating carbs and enjoying everything she had worked for.
So, can there be a silver lining to any of this?
As long as I can remember Mom suffered with anxiety. It ebbed and flowed, sometimes better, sometimes worse - but always there. A sudden noise or unexpected touch would cause her to leap out of her seat and cry out with surprise. A change in plans or routine could leave her flustered and nervous for awhile. She lived in a cloud of worry and agitation - often tired, as it affected her sleep. And I’m sure there was more suffering that I was not aware of.
Along with the anxiety - or maybe part of it - Mom spent time re-visiting past mistakes, bad decisions and frustrations or nervously projecting onto future events. I do think this is a human condition and we all suffer from it to some degree or from time to time - but Mom lived it with little relief. I think wine helped - but that brings its own problems.
Now: Mom is calm, serene and smiling. She lives in the moment because that is all there is. She is (thankfully) unaware of what she’s lost and enjoys the activities of the day. She experiences life in a very magical, childlike way. She was afraid of dogs, at least throughout my lifetime. Now she lights up like a little girl when the therapy dog comes to visit; she can’t wait to get puppy love. When Santa comes to visit each year, she is an animated five year old - excited to tell Santa her wishes and dreams.
Rather than wallowing in past mistakes, she sometimes revisits very early memories - mostly of her childhood and teen years. In the last few years I’ve heard simple but heartwarming stories about my Grandparents’ lives and my mother’s childhood. Mom’s parents and a few siblings passed away long ago, but she “visits” with them in the present. I’m sure doctors would call these hallucinations - but I think they are all with her - loving her and keeping her safe.
So, could this be a “good thing”?
Growing up, my mother was very judgmental. Maybe because of her own esteem issues she was quick to judge others, dismissing people based on any number of criteria; appearance, lack of formal education, ignorance of “culture”, income level - a host of reasons. I don’t know if this constant negativity caused her discomfort or stress - but I would think it would require a lot of energy to maintain.
Now: Mom is happy to chat with everyone; everyone is a friend. She has wonderful talks with anyone she comes across and enjoys hearing their stories. It brings her joy.
So, negativity, prejudice and judgment is stored in the brain and can be “forgotten”?
A final observation: Mom has had many interests over the course of her life: art, sewing, traveling - but her passion is music. Growing up (and often to my dismay) the house was filled with deafening opera playing on the “hi-fi”. Both my parents played the piano; we had a concert grand in the house. As a small child I was excited to dress up in my fancy clothes and go to grown-up symphonies or small ensemble concerts: Peter and the Wolf was a favorite of mine. As I got older I wanted to escape it all - but I do appreciate the education and experience. (That is probably a separate post!)
On any given day Mom may recognize me as her daughter, her sister, her granddaughter or sometimes not at all. But, if you sit her at a piano - she will play…from memory. She can take requests - and play… from memory! Passion isn’t forgotten - and if that isn’t Divine Spirit - I don’t know what is!
So, I’ve grieved for what she’s lost, what her friends and family have lost - and for what I’ve lost. I’ve been angry about the unfairness of it all, overwhelmed with being the “responsible one”, and heartbroken over some of the decisions I’ve had to make.
But, if I step back just a bit and change my view, there are blessings here. Maybe that is the lesson - use a different lens, try a different perspective: You may find something good waiting.