"Is and Was:" Marjorie Rodgers Cheshire on Caring for Parents with Dementia
Marjorie Rodgers Cheshire
President/COO + Family caretaker
What's your G.O.A.T?
I recently watched the biopic “Harriet,” about the life of Harriet Tubman. She’s from my home state of Maryland, and I have always felt a tie to her. Seeing her life played out on screen reminded me we all have an obligation to take whatever freedom we have—physical, financial, emotional, spiritual—and “go back” for someone who has not yet achieved that freedom.
What makes you feel like a real grown-up?
Being able to pull off bright red lipstick with anything.
Best gift you gave or received?
My husband is VERY hard to buy for and I was determined to do something memorable and meaningful (and that he couldn’t return) for his 50th birthday, so I arranged for his best friend to travel to Baltimore for a surprise guys’ weekend. When he arrived, I sent my husband to the front door under the pretense of getting the grocery delivery— and he was blown away when he opened the door.
Is and Was: When Someone You Love Has Dementia
It started when my mother began repeating things, a typical sign. It’s so gradual: First it’s using go-to catch phrases, then retelling stories or asking the same questions, verbatim. At first, she was very adept at covering—if I mentioned I’d already told her something, she’d say, “Oh, that’s right.” Over time, it became clear that she didn’t actually remember. Once she was diagnosed and the disease progressed, it began to affect her executive function, so she stopped driving (thankfully, she made this decision on her own) and cooking. It’s strange to look back and realize how long she was compensating. Beginning many years ago, when my mother cooked a holiday meal, she would put yellow post-its in each serving dish to indicate what she planned to put in it. At the time, I just thought it was an organization trick.
One of the hardest things about dementia is that my mother is both present and not present; more spirit than body in many ways. It has become important for me to accept that, not fight it. I recently talked to someone who didn’t know my mother has dementia, and he pointed out that I speak about my mother in both the past and present tense—“is” and “was.” Both are true, and being able to hold both those truths at the same time requires a different way of being and relating. It is a prolonged slipping away, which makes processing the grief especially challenging, as what and who you are grieving evolves.
The obvious change is the swapping of the caretaker role. The difficult part is taking that on, with all of the added responsibility. The beautiful part is the opportunity to give back the wonderful parenting and caretaking my mother gave me as I grew up. I also get to honor and remember my mother by having a relationship with my 10-year-old daughter that, in many ways, mirrors my mother’s relationship with me. Doing many of the little, loving things that my mother did for me helps me remember her at her most vibrant.
If you, too, find yourself on this unfortunate path, try to resist anticipating the next stage at the expense of experiencing joy within the current stage (even if that joy seems hard to find). Because I’m a planner, I am conditioned to prepare for what’s coming, and that is important. But because dementia is a disease of cognitive decline, you don’t want to miss the awareness and abilities that your loved one has at the stage you’re in. Those abilities—the awareness, the memory, the recognition, the mobility—will be gone one day soon, and you will have regrets if you don’t cherish it. What you may wince at as a weakness now, you will wish you could have back later. So meet your loved one wherever they are, on any given day.
School up:
Read - The 36-Hour Day, AKA the bible for dementia caretaking
Consult - The Alzheimer's Association offers incredible resources for supporting people with dementia at home, work and in the community