Mary Margaret and Ken have been married for 50 years. In 2010 Ken was diagnosed with Alzheimer’s disease. Together they have worked to build community and support among Alzheimer’s patients and their caregivers. Their story has been featured in the New York Times and in the Lives Explored video storytelling project from the Collegeville Institute Seminars.
Mary Margaret shared the following perspectives on the calling of the caregiver as part of her 2014 Lives Explored interview with Diane Millis. This is the third article in our July series on caregiving (read previous articles—Caregiving—Why Should the Church Care? and Autumn Sage: A book excerpt from The Fifth Season).
The diagnosis of Alzheimer’s was extremely painful. Even though in my heart I already knew it was Alzheimer’s, to hear it named was very hard. It took a while for me to come to a place where I could see joy in the world again. But I know now that the pain was necessary for me to awaken an awareness of my calling, to learn about myself, and find the strength to carry on.
When Ken was first diagnosed, we were both devastated and very depressed. I forgot to call on God, initially. We were trying to figure out ways to survive this disease. After talking with our doctor, I realized I had a choice to make. Either I could continue to be in pain and suffering, or I could choose joy. I could find the joy in the pain and become an advocate, an educator, and an ambassador for helping Ken—and others—with Alzheimer’s. So for me the pain and suffering was necessary, to awaken me.
God has expressed to me that no matter what happens in this journey—a journey that has been devastating at times, especially at the beginning—he is always present. I find strength from knowing that, and from knowing I’m not alone. God’s presence became known to me. I realized I don’t need to worry about yesterday or today—just this moment. God will be there and we will know what to do.
I feel as though we’ve been stripped of so much of what was important to us. Now it’s important that we’re walking this journey together, that we’re of one mind to help each other and to help others with this. Our whole focus in life has really changed. Alzheimer’s is not a blessing, but many blessings have come from it. Knowing that God is with us every minute of every day is one of those huge blessings—the most important.
I feel called to be a caregiver. I’ve always been a caregiver, actually. A caregiver is someone who cares for others, who has compassion for others, who loves to teach others, who wants to be beside others. As an educator working with young children, I was doing that. Then I worked with adults with disabilities. So from the start of my career, I was a caregiver. I didn’t expect to be a caregiver in retirement, but I feel as though I had a lot of background knowledge. And I am called to do this.
As a caregiver I have to look down the road. It’s up to me to do a lot of the planning and thinking and preparing. God wants me—and I know God is calling me—to have the strength and the knowledge that he’s going to be beside me through the next part of our journey, which is going to be new for us as a couple. I rest in knowing that I will have the strength and I will have the courage, no matter how difficult it is for both of us.
I will be a caregiver with God’s help. That’s why I love our baptismal covenant. After every declaration that we make in the baptismal covenant in the Episcopal Church, we say, “With God’s help.” That’s the only way we’re going to be able to fulfill that request, that declaration. And that’s where I am. I am here with God’s help. I can’t do it on my own.