The With Grace Project
My mother lived a full life and was 91 years old when she died. In her final years and during a period of great difficulty for our family, I learned many things by her side. It is my honor to have been her Guardian, Witness and Daughter. Even when significantly compromised with Alzheimer’s, she lived up to her name: Grace. A teacher to the end, she showed me how to Let Go, Be Strong, Trust and most importantly, Love.
I’m currently writing a book about what this experience taught me and while that’s in progress, there are things I want to share with you now. This is the With Grace project.
You are not alone.
I wish I had that book now. That’s what I hear from friends who have a family member with dementia and are struggling to handle it, especially their own feelings and outlook on the situation. I’m often asked whether writing the book will be cathartic and while I’m certain it will be fulfilling on many levels, catharsis is not the driver. What compels me is the idea that others might benefit from what I gained from this experience. As you care for your loved one, let it comfort you to know that you are not alone.
What you’re doing is important.
In the last several months of my mother’s life, I wanted to spend as much time as I could with her. This meant putting other things on hold such as opportunities for my coaching business or travel plans with my husband. We were the primary points of contact and most of our family lived across the country. Even though we felt confident with the caregiving arrangement, there came a point where my husband and I no longer ventured out of town.
One day while having lunch with my friend Karen, she looked me in the eyes and said: What you’re doing is important. Karen’s words were especially poignant. She had a rare and terminal illness and this gave her the perspective that results from limited time.
What was important to do then, is important to share now. I do not offer these reflections as the one way to go through this with your loved one. I’m not an expert on this disease and this is not a “how-to” on dementia. The specifics of your situation will be different and every family has its own dynamics to manage. The restrictions of the pandemic have added another layer of anguish.
My intention is that by sharing what I learned, you will feel connected, affirmed and encouraged.
There is more than the sadness.
When people find out that someone close to you has dementia or Alzheimer’s, you’ll likely hear: Oh, I’m so sorry. That’s a terrible disease. Does she still recognize you?
These are natural reactions and sympathy is an understandable response. I appreciated it, but it wasn’t enough to sustain me. I needed to feel more than the tragic loss and sadness, which was undoubtedly ever-present. Through caring for my mother, I learned that there is more.
The lessons are universal.
Although the With Grace project is addressed to people with loved ones who have some form of dementia, the lessons are universal. I became keenly aware of this in my work as an executive coach each time I went from a visit with my mother to an appointment with a client. Many of the themes that ran through coaching conversations with executives and other professionals were strikingly relevant to caring for my mother. It all rolled up to the overarching theme of In the Current: A powerfully graceful way to move.
Now the question became: What was a powerfully graceful way to support my mother through wherever Alzheimer’s was taking her?
You are an encouraging presence.
One of the most difficult things to accept is that there is no taking any of it away. There is no fixing it. You can arrange for the best care that’s available to you and fix the little things that are fixable. Then what remains is to sit beside your loved one, to say: It’s good to be with you today.
As you do, you are communicating that they are important. Even if they cannot understand your words. You are an encouraging presence and that, they will feel to their core.
Your loved one is still teaching you.
Even through the range of emotions and behaviors that dementia produces including states of agitation, irritability, aggression, sadness and withdrawal, they are teaching us many things.
Today, if you are sitting next to someone dear to you – your friend, mother, your husband or brother – I offer you this question to take with you:
What is your loved one teaching you today?