Hard Lessons and Grace

This editorial by Kathy Schoonover-Shoffner, from the October-December 2018 issue of the Journal of Christian Nursing, previewed the issue’s feature article on Alzheimer’s Disease.

dementiaI've cared for patients with dementia, but never anyone close to me. My father died at age 82 from a catastrophic cardiovascular event. I talked to him on the phone just hours before he went to the emergency room and died; his mind was perfect. My father-in-law died at age 94. He, too, was in his right mind until just days before his death. My grandparents maintained their mental capacity until weeks before death at ages 95 and 99.

A few months ago, I moved my 87-year-old mother from a 6-hour drive away to where I live. She had become increasingly anxious about her finances and health, and it was becoming difficult to manage daily problems from a distance. An unnecessary visit to the emergency room could have been prevented, if I had been close by. She made the choice to move.

Mom is now 10 minutes away, and I'm closely watching her mind deteriorate. I'm personally experiencing the frustration and pain of caring for someone with dementia. And, I'm being faced with some hard lessons.

Lessons in Patience

I find myself feeling impatient with mom. I tell her something, and a few minutes later she doesn't remember what I just told her. She calls me in a panic about a letter that has come to her apartment that I explained only hours ago. We go through the contents of the letter again. I tell her it's all right and nothing to worry about. The next day, we go through the same process one or two or three more times.

Sometimes I get angry with mom. She tells my brother and sister that she doesn't like where we moved her, that she was better off before, and most hurtful of all, that I ignore her. I go to visit her every few days, take her to the YMCA to exercise, bring her to my home for dinner regularly, and take her to church on Sundays. It makes me angry that she talks about me to my siblings. It hurts that she forgets all I am doing for her.

I get self-conscious when mom says something inappropriate in public. She can't hear well, and we can't seem to get her hearing aids working properly. The hearing loss, combined with cognitive decline makes for interesting comments. I am embarrassed for her and find myself wanting to be patronizing, and even belittle her by saying something like, “Oh, you know how old people are; just ignore her.” I haven't said that, but I've thought it.

Living the Commitment

I am committed to caring for my mom, to honoring my mother and father (Exodus 20:12). I realize this is my last act of honoring my parents. But the truth is, God is showing me my impatience and self-centeredness. I am full of myself, instead of being full of his Spirit. Galatians 5:22-23 reads in the Amplified translation: “But the fruit of the Spirit [the result of His presence within us] is love [unselfish concern for others], joy, [inner] peace, patience [not the ability to wait, but how we act while waiting], kindness, goodness, faithfulness, gentleness, self-control.” How am I going to choose to act while waiting with and for my mother? Verse 25 goes on, “If we [claim to] live by the [Holy] Spirit, we must also walk by the Spirit [with personal integrity, godly character, and moral courage], our conduct empowered by the Holy Spirit.” Can I show unselfish concern for others under the stress of a heavy work load and caring for my mom? Can I love my mom with integrity and moral courage? Can I walk by the Spirit?

Caring for someone with dementia is an opportunity to discover grace, to learn about God's infinite graciousness toward me. This is a time I can learn more about what Jesus has done for me, about how he forgives me again and again, about how he loves me more than I can understand. It is a time to learn how to be a more gracious person to others—my family, my colleagues at work, friends, and strangers.

This is a time to learn how to abide in Christ in deeper ways (John 15).

Kathy Schoonover-Shoffner, PhD, RN
NCF National Director and JCN Editor-in-Chief


Additional Resources

The Long Journey of Alzheimer's Disease

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Comments

I truly empathize with Kathy. My husband and I are helping our nephew care for my husband's sister who has vascular dementia, and we see similar episodes of anxiety, inappropriate behavior, and confusion. My dear sister-in-law can no longer dial the phone or remember what day it is, but she is cheerful on the phone when we call to say hello. As my husband says, after hello the conversation "goes up in smoke." We live 5 hours from her, so visiting regularly is a challenge. Kathy has expressed exactly how we often feel, impatient, angry, embarrassed, frustrated and sad. We also struggle as a family to communicate well about making sound decisions about her care. Only prayer and God's grace keeps us on the right track! We pray for wisdom, patience, and compassion for my sister-in-law and for each other. We are so thankful for caregivers who are there when we can't be!

Your story is very close to mine. Caring for a loved one with dementia is harder than I ever realized. It hurts so much to see the personality changes and the confused expression. It hurts so much to feel the anger and lack of love. So many days I don’t see the grace but only the challenge. Thank you for sharing your thoughts. I know I am doing the right think for my MIL, I just wish I could handle it as well as you are.

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