Caring for a Spouse with Alzheimer’s

October 18, 2015 No Comments »
Caring for a Spouse with Alzheimer’s

By Paul V. Harrison

“He was my dictionary,” Peggy said. “Whenever I needed to know how to spell a word, I would just ask Charles. But eventually, he couldn’t spell his own name.” 

These words capture something of the tragedy couples experience when Alzheimer’s intrudes into a family.

Brilliant Mind

Charles had been brilliant. Graduating from Christian colleges in Nashville, Tennessee, and Shawnee, Oklahoma, he earned a master’s degree at the University of Oklahoma. He capped off his education with a Ph.D. in math education at the University of Texas in Austin. He delighted in complexity. Untangling a calculus problem made him smile, but he wasn’t a one-subject man. He loved Scripture and science and seemed interested in everything. He especially loved music and directed congregational singing for years.

Eighteen-year-old Peggy met Charles in Nashville in 1959, and they married a year later. Life unfolded over the years into five children, fifteen grandchildren, a stint teaching in Germany, and three professorships. Days and years were full and sweet for decades.

About 1997, things began to change. Not quite 60, Charles seemed off his game, forgetting a detail here and a memory there. The rheostat in his brain, always set on bright, began to dim. He got lost driving around town and had to call for help. By September 2000 he was diagnosed with early onset Alzheimer’s.

Slow, Steady Decline

Charles and Peggy’s world began to turn upside down, one bit at a time. At first little things began to slip. Charles’s computer-like mind no longer fired correctly, or at least not all the time. The doctor predicted “a slow and steady decline,” and that’s what happened. At church, after singing one stanza of a hymn, he turned the page. In prayer meeting, when he couldn’t find Acts, he slid the Bible to Peggy for help. Inevitably bigger changes came. He lost his job of 26 years. He had to hand over the car keys to Peggy.

From 2000–2002 Charles still had a reasonable level of functionality, and Peggy wanted to let him do all he could as long as he could. So he kept paying the bills until one day she noticed the checkbook wasn’t right. The apparent $2,000 balance was actually $14,000. Peggy started filling out the checks and had Charles sign them, since signing them made him feel better. Before long that wasn’t possible, so she spelled out his name on a separate paper, and he copied the letters onto the check. Eventually he couldn’t do that. In 2002, trading a hard job for a harder one, she quit as a director of college financial aid to stay home with him.

“Charles would just wander from the house,” Peggy said. “I would look up and realize he was gone. So I would get in the car and drive around looking for him. Once I found him in the middle of an intersection, directing traffic.” At the mall, like a child, he once escaped Peggy’s eye and made his way to the upper level. Peggy said, “I’m looking all over for him, and then I see him coming down the stairs toward me.” Frantic, he approached her and said, “Where have you been?”

Caregiving Challenges

Looking back, Peggy named some of the special challenges in handling the disease that more than five million American families face. “I became isolated. As his world shrank, so did mine,” she said. To keep him from wandering off, she sometimes had to lock him in the house with a deadbolt. Of course, this locked her in also. 

They had friends who cared for them, but somehow people seemed to react differently to Alzheimer’s than to other illnesses. Silence was the norm. “I sensed that people were talking about Charles and his struggles, but they weren’t talking to me.” She blamed herself somewhat for camouflaging his decline so well that others didn’t recognize how bad things were. Over several years, her pastor twice sat with Charles to let her have a break. Other than family, no one else offered.

Peggy also spoke of the loss of meaningful conversation. She and Charles had enjoyed a special intimacy, sharing the most personal aspects of life. These two highly intelligent people could talk about anything, and they did. Conversation with a trusted friend is a most sweet nectar. However, bit by bit, Alzheimer’s stole their verbal companionship. Early in the disease, he would cry and ask her to help. Eventually coherent sentences became impossible. The sweet talks of a couple in love came to an end.

Kindness and gentleness eventually also fell prey to the thievery of Alzheimer’s. One day he blackened her eye. Another time he shoved her into the bathtub. In later years, when she would bend down to put on or take off his Depends®, he would beat her on the back.

Peggy worked hard to be patient, but the disease was relentless. “I would wake up in the morning and say, ‘Today I’m going to be more patient.’” Usually before the day was out, she was praying for patience all over again.

In 2007 the illness struck its final blows. Ten days in the hospital were followed by six weeks in hospice. Amazingly, even in those last days in hospice, Charles could correctly tap time to music.

After crying “buckets and buckets of tears” over the years, Peggy wondered if she would cry when her sweetheart died. She did, but her tears were not those of one grieving without hope. In an odd way, death almost came as a friend, for it ended Charles’s and her family’s struggle with Alzheimer’s.

Support Team

When asked eight years after his passing to evaluate what her Christian community did to help, Peggy offered the following:

• Visits were refreshing but in short supply. Even small breaks breathed life back into her spirit. Friendly faces and caring conversations, when they occurred, were blessed relief to 12-hour days at hospice. Since Charles’s passing, several people have sought her out to apologize for not doing more.

• Support group was a huge encouragement. For the last 18 months, a daughter relieved Peggy so she could attend weekly meetings at a nearby church. There she found others who understood what she was going through. Shared burdens become lighter.

• Finding a go-to person was essential. With so many in the workforce, it was necessary to connect with someone who could consistently help out when called on. For Peggy, this was a daughter.

Faith in Christ carried her through the darkest days, but that’s not to say she didn’t ask “Why?” a million times. Her faith surely helped, but nothing in this broken world could remove the suffering inherent in Alzheimer’s. Peggy knew that “in all things God works for the good of those who love him” (Romans 8:28), but she also came to see that God didn’t always make clear what that “good” was. Only faith could claim that promise.

These days Peggy enjoys her children and grandchildren. She faithfully attends church and holds as tightly as ever to her faith. One other thing she does: alert to the suffering of others, she visits and spreads encouragement. Lonely souls regularly answer the phone or door and find a caring soul, willing to listen to their struggles. 

Paul V. Harrison is a freelance writer and creator/administrator of the Classic Sermon Index.

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