Alzheimer's Disease: Caring for Someone Slowly Going
By: Phyllis Ferrell
This guest post is written by Sara Corya, MD, a senior medical director at Eli Lilly and Company.
I almost always leave the memory care facility with tears in my eyes, confronted by the stark contrast between who my mom was, and who she is now.
Betty graduated from college at age 19 and IU Medical School at 22. She was a brilliant cardiologist who treated patients, conducted research, taught students, raised four children, and traveled the world. She loved all of her grandchildren dearly, and was particularly fond of my son, Adam. When he had migraines as a child, she picked him up from school and took care of him, inspiring him to want to be a doctor someday. She was so certain he would be a good one. She was my role model as well, and when her memory began to falter and she began to feel ‘less important’, I told her I needed her to be my role model still, teaching me how to handle the journey of Alzheimer’s Disease with strength and grace, just in case I should ever need to know…
That was about 10 years ago.
Now, Betty wanders slowly and aimlessly through nursing home halls, mumbling incoherently, and grabbing at nonexistent visions in the air. She smiles happily when she sees me, but it’s clear she isn’t sure why. She no longer remembers she was a physician; she doesn’t know what a physician is. She walks the halls alone because she and the other residents are all strangers to each other. They will be strangers forever, because they learn nothing, and they gradually unlearn everything, and everyone.
Betty raised us on nine beautiful acres near Eagle Creek Park, and her greatest wish was to live there always. As
her disease progressed, we took ever-increasing measures to allow her to do so, such as installing video cameras so
we’d know if she left the house, or fell.
We didn’t anticipate the quiet sadness of waking in the middle of the night to a black and white version of our mother struggling for 20 minutes to put on a robe. We didn’t imagine that she would run in terror and try to climb over the property fence to ‘escape’, believing her own children were strangers sent to harm her; or that we’d find a dead snake in her kitchen sink – which she herself had killed to protect her beloved dog, Amy, who we once found dressed in Mom’s pajamas.
People ask me what it is like to be a caregiver for someone with this devastating disease. Some of the challenges are easy to describe: taking away a driver’s license, rotating night shifts with siblings to ensure safety, and eventually hiring professional caregivers to manage meals and medicines. For us, caregiving came full circle when Adam began driving his “Oma” to the store and to her appointments.
But the real challenges of caring for someone with Alzheimer’s are often too difficult to share out loud: the gut-wrenching pain of seeing fear in a parent’s eyes as they grasp for words and thoughts that won’t come; watching them regress – bit by bit – to an infant in an 80 year old body, to a person with no memory of their own rich life.
About a year ago, Adam, then 20, captured it well. We were driving home from a visit, and I turned to see tears streaming down his face. He said that even though we had just seen her, Oma was already gone.
Alzheimer’s friends and family members spend an inordinate amount of time doing things that don’t fit neatly into busy lives, but that work pales in comparison to the heartache they feel every day - for years, and years, and years. Watching an independent, vivacious loved one slowly fade away, and being unable to do anything to stop it, is excruciating. And toward the end, when that person doesn’t remember who you are or understand the words you’re saying, you can’t even tell them you’re sorry it all happened to them.
Adam was accepted to IU Medical School in October, and the person with whom he most wanted to share the news was his grandmother. I offered to tell her, so I could spare him the uncomprehending gaze with which his excitement would be met. Mom was in a happy mood that day, for whatever reason, and of course she greeted the news with not a shred of comprehension.
But that was OK.
Adam and I both know that the real Oma would be so very proud.