Most caregivers live a double life.
They have homes, families, jobs—more than enough to fill their days with responsibilities, joys, and problems to solve. But in their caregiving lives, they take on a second load. They assume some if not all the responsibility for the loved ones they care for. They’re faced with solving a completely different set of problems. They’re often the only ones who can provide their loved ones opportunities for joy, and most often they’re the only ones who get to share that joy.
I know from experience how easy—and understandable—it is to get caught up in the negatives of caregiving. The juggling act can be overwhelming, with huge demands on our time, energy, and patience. Even worse, for me, is the double dose of guilt: we feel we’re not fulfilling our duties to our own families, but neither are we confident we’re doing enough for those we care for.
So what are we doing for our loved ones? Caring, yes…helping them to not simply survive Alzheimer’s, but, we hope, keep living in the midst of it. Is that all? Keep living? It may appear to be, if we look at our caregiving tasks only from our perspective. Hmmm. Have we ever thought of looking at our role from the perspective of our loved ones?
My cousin Karen, the primary caregiver for her mom, introduced the idea to me with these words she posted recently on her Facebook page:
Can you fathom the feeling of sitting by the door waiting for a loved one to take you away if for only a short time? Then the sense of total freedom to see the trees & greenery, the sites you don’t get to see on a daily basis? To be so entirely grateful for the time someone else takes, knowing that it always takes someone else to take you away? The sheer knowledge of the word “burden”? To know enough to realize you do not know nearly as much as you ONCE did?
After work I think I have so much to do, yet I know the chore ahead is stopping at the store for the precious few items to make MOM feel safe & sound in her surroundings…. My family is waiting for me yet I know someone else depends so on me. I think this is just a detour for me; it is truly nothing compared to what she must feel. I know that caring for a loved one with memory issues is a challenge, but I am reminded of her gratefulness when I receive these words, “Thank you so much for my evening–it was WONDERFUL!”
I am doing God’s work. I know I am. — Karen H.
Karen’s mom is still in the earlier stages of Alzheimer’s. Aunt Sylvia is aware she must depend on Karen to do many of the things she used to manage on her own. Karen drives her where she needs to go. Karen shops for her. Karen takes her out, away from her assisted living home, to places where Aunt Sylvia can see the world is still turning, the trees are still growing, rain still falls, clouds still move across the sky, shop doors open automatically, and waiters ask you what you want for dinner. So many of Aunt Sylvia’s smiles depend on the actions of her daughter; Aunt Sylvia’s aware of that and she’s willing to wait. But she’s also aware that one of the words for needing so much help is “burden.” And she remembers it’s a not a happy word.
So how does Karen feel about her double life? “My family is waiting for me yet I know someone else depends so on me. I think this is just a detour for me; it is truly nothing compared to what she must feel.” Karen understands the benefit of looking at life from her mom’s perspective. As a daughter, she bears the sadness of knowing her mom still understands the word “burden.” But as a caregiver, she feels the sweet reward of her mother’s gratitude.
I know of nothing here on earth that can lessen the pain Alzheimer’s brings to its victims and their families and friends—except, perhaps, the love expressed in caregiving. Yet we’re so used to looking at what our loved ones need, we may miss the beauty of what they receive from us. We shouldn’t ignore it. That beauty is a tool, a strength that can keep us going beyond the limits of time and energy and patience.
Why not try taking Karen’s perspective? Let’s take time to acknowledge the splendor of what we can give and the grand-ness of our opportunity to truly help someone who will never be able to repay us. We’ve been given the immense privilege of sharing in—yes, Karen, I agree—“God’s work.” Let’s take strength and hope in that.
Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory…in Christ Jesus throughout all generations…Amen (Ephesians 3: 20-21 NIV).
Father, we can never do enough, but with Your guidance, we can always do something. Thank You for taking our human efforts and using them to bring about more goodness than we can ever ask for or imagine. And thank You, Lord, for caregivers like Karen who share their thoughts and feelings so openly. They make the path through Alzheimer’s smoother for all of us.