This is life with alzheimer's
Every day, people ask me how I am doing. I almost wish nobody would ask. I hate the real answer so I make up a palpable response but – truly – how can anyone answer that question or really understand my answer?
Mom's favourit picture of her (the youngest) and her family - her sister, her mom and her dad. Circa 1936
I have lost myself in caring for my mom. I am slowly watching pieces of her disappear every day. Every memory I have is saturated with the fear of never having the same feelings again. Guilt strikes me as frustrations grow. Balancing work and home. I am losing myself and aging faster than I can explain.
Mom and I
Trying to provide the best care for the person who gave everything to bring me into the world.
Any normal reasoning doesn’t work. Explanations fall on deaf ears. Almost all of her is gone.
We are fighting against a monster with no cure.
I am begging for a glimpse of a mom I have already lost.
A grandmother who sometimes in the back of the twinkle in her eye can see her grandchildren. That love seems to trump this disease, although I wonder why she doesn’t know me or the painstaking caregiving I am doing – it is almost meaningless to my mom.
It is like I am a new mother with a baby or toddler. No sleep, up every two hours. Feedings and cleanings and, though I would never complain, I am exhausted and scared all the time. I am worried that the worst could happen in an instant all the while worrying about the division this disease is causing in my home - unintentionally
My dad, Hank, Mom and I
I see the love and kindness in my husband and my boys, and I wonder how this will change all of our relationships. My husband has shown me a heart of gold. Something I may have missed without this experience.
But I also see disparity and loss. What do we do? What can we say to her? Classes have been taken, words from amazing people have been offered with well-meaning advice. But - how to live with it?
Mom and my son Jake
My husband Kevin taking Mom for a walk in 2020
Mom and my son Rob on Christmas morning 2019
My sister is in pain. Dealing with sorrow. Unable to thrive in a hopeless situation. A woman who is usually a powerful force is now silenced.
... And then, after hours of frustrating repetitions or tears, my mom whispers to me – ‘I love you’ or ‘thank you for taking care of me’.
She might even say something like ‘Do you know my Jennie? She is wonderful!’
My love for her again clouds all the hard decisions ahead of me. The guilt of resentment returns often. I cry myself to sleep more often than I actually sleep at all.
How does anyone respond to that question? How are you?
It’s a roller coaster of emotions that nobody can understand. It is slow and painful.
Mom, the queen in red, with her children, son-in-laws and grandchildren in 2019
Mom, my sister Mary and I (in the middle)
Mom, Mary and I (in the middle)
It is completely unfair as it strips this brilliant and accomplished woman of
everything she once was. Most of all, of being my mom.
Maybe the world is falling apart just outside our window – people are heartbreakingly dying and fighting. But I just can’t see past what’s consuming me right here inside our home.
This is how I am, and this is life with Alzheimer’s.
And a picture to end, Mom's favourite one of herself.