Lessons Learned from an Alzheimer’s Caregiver – Part Three

by Cynthia Fantasia, author of In the Lingering Light: Courage and Hope for the Alzheimer’s Caregiver
This is the last article in a three-part series on Alzheimer’s caregiving. In the past few weeks, I have shared thirteen lessons I learned (and am still learning) as I cared for and walked alongside my husband through his journey with Alzheimer’s Disease. May these truths strengthen you for your ongoing journey. Because one thing I have come to realize: God doesn’t waste anything. Lessons will come at the end of the journey. So let’s wrap up with a few, final lessons.
In my first article, I shared these five lessons:

1. People grieve differently
2. Accept reality
3. Life is short. Be kind.
4. It’s the disease talking.
5. Build holy habits.

In my second article, I shared these four lessons:

1. Have “the conversation”
2. Keep short accounts
3. Keep your eyes on the road
4. Live an openhanded life

Here are four final lessons to help you or someone you care about walk through a season of caregiving.

Intentionally Pursue Gratitude

During our long walks together over the years, Bob and I would talk about our kids (and eventually our grandkids), discuss our lives and our plans, work through hectic schedules, solve our problems (and, often, the world’s problems). I loved those walks and always returned refreshed.
As Bob’s illness increased its grip, our walks became shorter and our conversations became simpler. Oh, how I missed those stimulating conversations. We kept walking, though, sometimes just to the corner of our street and back. The shorter walk was okay with Bob—he was content. I, on the other hand, was gaining weight from lack of exercise.
When Bob entered the memory-care facility and I was faced with doing life alone, walking wasn’t something I looked forward to. After a few days of resistance, however, I started out on the old route. As I stood at the end of our driveway, wanting so much to turn around, I decided to thank God as I walked. Hard as it was to get started, I began to walk and talk. I talked with God about everything I was thankful for: a loving family, a safe place for Bob, the beautiful summer flowers, our church, my faith, a car, the sunshine—you name it, I thanked God for it.
That first day, what I thought was going to be such a hard walk became a holy experience. I literally walked past our driveway because I was so caught up in the things for which I was thankful. God became my walking companion. When gratitude seemed challenging, I thanked Him for who He is. I thanked God alphabetically: Almighty, Beautiful Creator, my Deliverer, my Eternal Father, a Good and Gracious God . . . all the way to X, Y, and Z. Gratitude became a holy habit. It made me aware of God’s presence and His faithfulness, it drew to my mind the many ways God had intervened during the past months, and it refreshed my mind and heart.
Following Bob’s death, I thanked God each time I drove by a nursing home, grateful we didn’t have to make the torturous decision to place Bob in one. I continue, even now, intentionally pursuing gratitude. Why? Because gratitude is a game changer, a heart changer, a life changer.
There are times when I feel myself starting to grumble. Yet gratitude rushes in like a minesweeper, and my attitude changes. A lesson learned at a time when the world wanted me to believe that I had nothing to be thankful for.

Learn the Power of Presence

My first day at church after a three-month absence, I wasn’t ready to face many people, and I was concerned about too many people talking to me. What would I say? What would they ask? How would I feel?
I sat in the balcony with a friend. It seemed safe enough. The benediction was given, and I walked out, eyes down, emotionally exhausted and just wanting to get to my car. But I felt a tap on my shoulder. When I turned, a man was standing there, his arms opened wide. I knew him: I had served on teams with him, and he was a casual friend. There were no words; he just wrapped me in a big bear hug, then let me go. Such a warm and comforting moment!
The power of presence—it was life-giving. Too often, we worry about saying the right thing to someone who is hurting. Words aren’t necessary. Presence is!
I have pondered this concept, and as I reflect on those who spent time with me, I see that the most helpful were the ones who said very little. Sometimes, they just sat with me and let me talk. They didn’t give answers, solutions, or formulas. They just listened. They invited me into a holy place—a place where I could be myself, a place where I didn’t have to say anything, a place where I knew I was understood. They pointed me to God just by their presence. “Be still, and know that I am God” (Psalm 46:10) was the gift they gave me.
All too often, people stay away, because they don’t think they have anything of value to offer. This is more painful than anyone can imagine. There were many who helped me, though: Team Bob folks who took Bob for walks or for lunch, who spent time with him; those who occasionally brought a meal; those who sent notes to remind me they hadn’t forgotten us; and those who sat with me on the “mourning bench,” knowing there were no answers, no quick fixes.
There is a ministry of “presence.” The fact that you are there with the one who is suffering can often help more than any words you say.21
Give someone the gift of yourself. Stay for a short time. Bring some flowers from your garden, a cookie from the bakery or your own kitchen, but most importantly, bring yourself. A lesson learned by the example of those who gave me themselves, their time, their love, and their presence.

Do Your Job

I don’t know much about football, but, since I live in New England, I am a die-hard Patriots fan. Coach Bill Belichick is known for constantly reminding his team: “Do your job!” I interpret that to mean stay the course, do what you are called to do, and don’t give up.
This is similar to the caregiver’s journey through Alzheimer’s. All the lessons above hinge on focus: Stay the course, keep on keeping on. God will supply what you need. And then, when the journey is over, we—you and I—still have a job to do.
Throughout Scripture, God asks, “What is in your hand?” Moses had a stick, and he used it to part the Red Sea. David had a slingshot and five smooth stones, and he used them to slay Goliath. The little boy had five loaves and two fish, and Jesus took them and fed over five thousand people. And he asks us today, “What is in your hand?” What will you do with the lessons you learned and the growth you experienced in the Alzheimer’s valley?
For me, writing this book is my gift to the Alzheimer’s world. I pray that through reading about my experience, others will be encouraged and strengthened.
Jenifer’s mother, Linda, died of Alzheimer’s disease in 2012. Jenifer and her mom loved to go out to eat, but as the disease took over Linda’s mind, eating out was too much for her. Jenifer now hosts “Linda’s Lunches” at her restaurant, The Red Raven, in honor of her mother. Caregivers and loved ones with Alzheimer’s come together for lunch on the first Saturday of each month. There they enjoy fellowship and socialization.
Jenifer is also the founder of “Purple Table Reservations.” When you call the restaurant and request a Purple Table Reservation, the host knows you are coming with an Alzheimer’s patient. Upon arrival, you will be seated in a quiet area of the restaurant, away from the TV, and near the restroom. Your server, trained to care for an Alzheimer’s individual, will carefully explain the menu and give attentive service. Jenifer is “doing her job” with what has been placed in her hand.
What about you? When this portion of your journey is complete, what will be in your hand? What will you do with the gifts He has given you? A lesson learned by trusting God for the beginning, middle, and end.

It’s All about Love

We usually think of love as a two-way street, but as Bob retreated deeper into his own world, he was unable to show his love. I would hug him, but he wouldn’t hug me back. He no longer spoke the words of love that had been such a natural part of our relationship. Love now felt like a one-way street. Yet, showing Bob my love brought me joy. Love is not about what I get, it’s about what I am willing to give.
To my friends caring for a loved one who may not be as pleasant as you think Bob was, please understand that he certainly had his moments. I learned early on that living in his “Disney World” was far easier than trying to correct him when he became agitated or downright fresh. If he believed that green was red and up was down, that was the final answer. I had nothing to prove to Bob except that I loved him and he was safe with me.
This is what it’s all about. As I reflect on my journey with Bob through the valley of Alzheimer’s disease, I know that God walked with me (with us) through it all. Yet He didn’t force me to acknowledge His presence and guidance, to lean on Him for every breath I took and every decision I made, to trust Him through it all. He didn’t force me to love Him during those dark, difficult, and seemingly impossible seasons. Nevertheless, my love for Him brought—brings—Him joy.
God is the only One who knew the twists and turns of our uncertain road. And He is the only One who can now heal the sadness of Bob’s absence. The implications of this truth are new and remarkable, and they give me hope. A lesson I learned by giving my love with no expectation of anything in return.
What was the totality of the lessons I learned during that season? That I didn’t have to make plans, that I didn’t have to know what the next year would bring, that I didn’t have to cling to the dreams of what I had thought life would be but would rather cling to the truth that God knew, and that was sufficient. This perspective brought me a new freedom.
My journey had begun with a single step. And as I ponder, even today, my identity, my life, and my journey, I am reminded that “God is taking care of me” and I’m “a pretty girl.”
I shared this prayer in my first article, and I’d like to circle back to it again, in closing.

A Prayer to Guide You

Dear Lord, I thank You for Your constant companionship, for walking with me through the valley of the shadow of death, and for bringing me out into Your light. Thank You for blessing me with the freedom to trust You, to lean on You, and to receive Your loving care each moment. When I felt I couldn’t go on a minute longer, You carried me until I received strength again. When I wept, You reminded me that “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book” (Psalm 56:8, nlt). There truly is no one like You, and I love You with all my heart. Amen.

You have just read an excerpt from the book, In the Lingering Light: Courage and Hope for the Alzheimer’s Caregiver by Cynthia Fantasia. Read the first chapter here. Or buy at NavPress.com or your favorite retailer.