25 Years of Alzheimer’s Disease

God's help in human frailty.

by LeAnn Campbell

I peeled a potato while Mother watched. “Is this how you do it?” she asked.

What was wrong here? Mother, a farmer’s wife, had peeled thousands of potatoes for big bowls of mashed potatoes and platters of French fries or potato chips. How could she forget this simple task?

I got a clue when my aunt sent a newspaper clipping and wrote, “I believe Mary may have this disease I’ve been reading about called Alzheimer’s.” This was in the 1970s. We did not know about Alzheimer’s but kept the clipping and read it occasionally.

Mother’s memory problems grew worse. One day we commented that my niece, in the hospital for treatment of a broken arm, would be dismissed that day. We mentioned it several times, yet each time Mother said, “I wonder why nobody told me she was coming home.”

Later I told my father-in-law, “I believe my mother is losing her memory.” In saying the words aloud, I finally admitted something was wrong. Mother knew, too. One day she touched her old piano and said, “I used to play it, before my head got like this.”

Steady decline

The next stage of the disease brought more memory loss and confusion. One day Mother drove the familiar road from the house to the field where Dad was farming. She got lost and was gone for hours. We never knew where she went or how many miles she drove, but she proudly pointed out later that she found her way back home.

She loved to bake cookies but sometimes left an unfinished bowl of dough for days on the kitchen counter. The one household task she remembered longest was how to do laundry.

Mother’s beloved sister, with whom she shared so much, died during this stage of her disease. Though she was aware of the death, she later had trouble remembering. One day we took flowers to the grave, and Mother read her sister’s name on the tombstone. “Now I remember Etta,” she said. How sad to have only a fleeting memory of one she had loved dearly.

As Mother’s thinking and social skills disappeared, our conversations no longer existed. She never telephoned for mother-daughter chats. I learned not to call if I knew she might be in the house alone. She seemed unaware of the ringing telephone.

Gone was her memory of how to do everyday things. Because she could no longer bathe herself, I stopped on my way home from work to give her baths and shampoo her hair. Sometimes we struggled because she did not want her privacy invaded. She often forgot how to climb into or out of the bathtub.

Her eating habits also changed. If Dad gave her a banana, she would bite through peeling and all. If she ate chicken, we might hear a crunch and realize she was eating the bone as well.

Need for support

As Christians, we knew our strength came from God. We could say, as the poet David did, “Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you” (Psalm 9:10). We trusted His promise to never forsake us.

But we needed support from others, too. We found it by helping each other through small deeds. Sometimes it was just a day of freedom for my dad to attend a cattle auction while I stayed with Mother. Other times I took comfort in a few words from a friend. One night at a church party someone asked, “Is your mother having problems?” It helped just to acknowledge that others were concerned.

Another comment came a few days before Mother died. “I am going to pray that your mother will live until after December 25,” a friend said. “It will make your memories easier in the future if she doesn’t pass away right before the holiday.” This lady had experienced a holiday death in her family and knew the difference a few days made. Her prayer was answered: Mother lived until the 28th.

More challenges

Our days of living with Alzheimer’s disease did not end with Mother’s death, however. My mother-in-law had experienced memory problems since the death of her husband about four years earlier. On a 70-degree October day she called and said, “I have been shoveling snow off the sidewalk.” Mom was confused; it doesn’t snow on warm autumn days in Missouri. Then she began burning her pans because she forgot the stove was on.

We took her to the hospital for testing and observation. When the physician called and confirmed Alzheimer’s, I gripped the telephone receiver and wanted to scream. This can’t be! My mother-in-law’s symptoms didn’t match my mother’s; the doctor must have been mistaken. But he did not back down. “I believe it is Alzheimer’s disease or a senile dementia. I suggest you put her in a home.”

All our family struggled with the decision to put Mom in a home. Though it was no longer safe for her to live alone, the guilt we felt at taking away her freedom tore us apart. With heavy hearts, we chose a boarding home. Just as we feared, my mother-in-law did not want to go. My husband and his siblings took her to the home on the appointed day, and they returned a short while later in tears. Although we would visit often, we felt we were deserting her.

While in the boarding home, Mom had freedom to roam and sometimes disappeared. Eventually, we found a more secure environment a nursing home whose special care unit had locked doors and an enclosed courtyard.

“How can we possibly put her in a nursing home?” we asked each other. “She will put up such a fight that we may never get her inside the door.” A locked unit in a nursing home would take away nearly all her freedom. Knowing how angry she would be, we made plans for the family to transfer her together. After lunch one day, we drove the dreaded two miles into town with my mother-in-law. We anticipated rebellion, but she walked in calmly, never voicing objections. Although we thought she was too confused to understand, she told somebody in the nursing home that her family was taking her there to live. Typical for an Alzheimer’s victim, she was alert one minute and totally confused the next.

Seeking support

As my mother-in-law’s disease progressed, we took advantage of sources of support not available to us when my mother was alive. The nursing home started an Alzheimer’s support group where we could meet with other families for informative programs and discussion. The National Alzheimer’s Association provided materials about how to recognize the disease and how to cope.

A few years earlier my husband’s family had formed another support system without realizing it. We started getting together once a month to eat and visit. Our monthly suppers developed into an invaluable closeness that helped us when we had to make tough decisions about Mom’s care.

Sometimes all we could do was cry. When we punched in the special code that opened the door to the nursing home’s dementia unit, my mother-in-law sometimes came to meet us, sobbing and trembling. “They are going to kill me,” she said, looking furtively out the door.

We saw only empty lawn chairs, but she envisioned enemies. We held her close and spoke soothing words, trying to calm her; but we felt like sobbing, too. At times she became agitated and difficult for the staff to handle, and she fought with other residents. Often she turned angrily on us, and we had to walk away, leaving the staff to calm her.

In these dark hours, we felt like crying out as David did, “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from the words of my groaning?” (Psalm 22:1). But though we felt deserted in times like these, we always rallied because God promised that He would never forsake us if we trusted in Him.

Cherishing memories

God didn’t forsake us but filled our hearts with memories to cherish. Now when my husband and his brothers and sisters sit around a campfire and tell stories from their childhood, I turn on the tape recorder. Our children and grandchildren need to know family stories, like the one of their grandmother tossing dirty dishwater out the door. The water went straight up in the air and came down on her head. How my father-in-law laughed at Mom’s poor aim that day!

We have more good memories when I bake squash (or pumpkin) pie from my mother’s recipe. As the spicy aroma fills the kitchen, we laugh about the time she fixed it for the threshing crew but forgot to add the squash.

My mother loved to make embroidered pillowcases. I recently took these yellowing creations and made pillowcase dolls for her grandchildren. They loved the tangible reminders of their grandmother’s handiwork. The other grandma crocheted red coats one year for our four little daughters. Now they are visible evidence of the beautiful work she once did.

These memories are precious to our family. My daughter said recently, “I have an inheritance from Grandma: her recipe for Mississippi Fudge. That’s what I make every time I need a dish to take to a dinner.”

Nearly a quarter century passed between my mother’s first symptoms in the mid-1970’s and my mother-in-law’s death in 1999. In that time, I learned more about God and His faithfulness than I ever had. Whatever challenges await us, I know God will not forsake us.

Scripture quotations are from the New International Version.