I’ve been thinking a lot about my Mom. It’s been about six years since she was diagnosed with Alzheimer’s Disease. Mom had been ignoring our words and repeating the same questions over and over and over. Thankfully, my sister put the pieces together and convinced her to see a neurologist.
So much has changed in those six years. I’ve seen my beautiful, bright Mom go from knowing the quickest route to any place to being unable to find her bedroom in her home of nineteen years. From cooking the world’s best carrot souffle and brownies to not being able to comprehend a simple recipe. It’s been a painful journey for all of us.
For me, the worst moment came about three years ago. I was visiting my folks, working remotely, using her office as my base. I slid out the keyboard shelf on her desk and saw it. A handwritten note to herself:
My children are Lauren and Andrea
My grandchildren are Ben, Hilary and Jamie
I remember tears falling down my cheeks. I wondered how it must have felt for her, knowing she needed reminders of such ingrained information. The next time she asked the same question over and over, I tried to keep that note in the back of my mind, so that I wouldn’t get irritated in my responses.
This summer, due to a convergence of things horrible, we made the decision to place my Mom in a Memory Care unit. We were fortunate, my folks have long term insurance which made it less of a financial burden, but it was still an emotional clusterf*ck. No matter how good the reasons are and the place is, institutionalizing someone you love is brutal.
It’s been difficult. I miss my Mom, even though she’s pretty much been gone for six years. When she lived at home, I spoke to her daily; I tried to make her laugh and answered her repeated questions about the weather. Now, our daily connection has been severed. Each trip down, I wonder if she’ll know who I am without her little note and without that daily reminder.
There are times when I think about the woman my mother was before she took ill. She was, and remains creative. She was a leader in many spheres. She could meet someone in a supermarket line and become friends with them. She has a memory that allowed her to remember faces and places better than most. She was also highly critical and quick to tell me to brush my hair. She still does that. She also kept a lot of secrets, especially about the time before she met Dad.
The disease has taken most of that from her. She’s still eager to prove herself and is active in all the programs the home provides. Sometimes, I watch from a corner where she can’t see me, trying to telepathically communicate the answer to a question about the sound a sheep makes. When she guesses wrong, a little part of me dies inside.
I wish things had played out differently for her. No one deserves to be left a brittle shell, empty of all those things that made them human. I remind myself she’s happy where she is – surrounded by people like her, having the same conversations over and over again. But I wish it were different. I wish she’d told me all those stories. Shared her childhood with me so that I could better understand the woman she was. That’s all lost now. I’d give a lot to see the sparkle back in her eyes instead of the dull thud of dementia.
My Mom’s disease has changed me. I hope it’s taught me to be more empathetic and patient, but I’m not always sure that’s the case. I know it’s renewed my belief in the power of stories, of sharing and recording their stories before it’s too late. In their stories, we learn who we are and where we come from.
We are one of the lucky families. She’s in a good place, with great caregivers. Dad, my sister and I are able to breath again and live our lives without the stress of caring for her disease. We’re still involved in her life and visit regularly. Every day, the home sends me an email with a list of the activities she participated in, so I know she’s keeping busy.
Just about every day, I encounter someone else who loves someone afflicted with this disease. I try to stop and listen to their story, hoping I can help them in some way. I know how difficult it is. There are no easy answers, just a deep sadness. The best advice I can give anyone is to take care of themselves. This disease takes its toll on the caregivers as well as the patient.
If you need help, reach out to these agencies, they may be able to make a difference for you.
Alzheimer’s Association: they have a 24/7 hotline that can direct you to caregivers and other resources
Women’s Alzheimer’s Network: A group with caregiver resources as well as an active advocacy group
National Institute for Aging: links to clinical tests that may be available for your loved one
Ciao for now,