December 9, 2019

Tables Turned

The sometimes painful transition from spouse to caregiver.

Nancy Vyhmeister

It all started in 2007. Werner and I traveled to Chile and Argentina to meet with his relatives. After seeing two batches of them, we took a bus from Bariloche to Buenos Aires—18 hours! By the time we got there, I knew something was wrong with my husband. He seemed confused, unsure of himself, lacking his usual leadership abilities.

Beginning My Takeover

I decided I had to do something. His sister, with whom we were to spend the weekend, had not yet come back from the family reunion, so without asking questions, I made new plans. The next morning we took the ship across the river to Colonia in Uruguay so we would not have to meet people at church on Sabbath. There we found a simple hotel by the river’s edge and settled into a calm weekend, where no one knew us. We slept, took walks, picnicked, and read. By Sunday Werner was his usual self, and we continued our trip to Montevideo.

I had no idea what had happened, but I realized that whatever was wrong, I had to make decisions. That was strange, because on family matters Werner, my husband of nearly 50 years, always made decisions. Little did I realize that one of the important parts of caregiving is making decisions—rapidly deciding what to do, even if that had not been your task before.

God has allowed me the privilege of being my husband’s caregiver, but I so much wish for some of his old friends to visit him.

The following year Werner and I were in northern Brazil by request of the General Conference, to put together the proposal for a new Adventist university. That was something both of us had done before; we felt comfortable doing the work—in Spanish, English, and (with help) in Portuguese. All went well for the first three weeks. But during the fourth week Werner suddenly couldn’t put words and ideas together. My caregiving task was to take over his writing and complete the task.

Full Caregiver Status

This time I worried about what had happened and determined to seek medical help as soon as we returned to the United States. That was the beginning of my “medical career”! As a caregiver I have learned more about all aspects of medicine than I ever wanted to know. Besides, I had to organize medical visits, treatments, medications, and the long drive to our chosen physician.

Little by little our trips to the doctor came more often; and I was the driver! Then Werner’s doctor declared that Werner was suffering from dementia, and Werner lost his driver’s license. Caregivers become drivers—even if they (as my problem was) do not like to drive.

Late in 2012 I realized I had driven as much as I wanted to drive. It was 20 miles from our house in Yucaipa to the doctor’s office in Loma Linda. Suddenly, as a caregiver, I was in the real estate business. Of course, God joined the party, and it took only two months for us to sell our house in Yucaipa and buy one only one mile from the doctors’ offices. I had never done that before, but as a caregiver you have surprises.

For three years in our new home we took long walks every morning. Then, as his steps became shorter, we stayed closer to home. I found some exercise videos, and we did easy exercises every morning. I became a physical education coach as part of my caregiving task.

For years Werner had done the dishes after every meal. Now he was forgetting how to put things into the dishwasher and wipe up the sink. He also stopped running the vacuum cleaner. Fortunately, about that time I met Toni, who took over some of my household tasks, giving me time to deal with Werner’s issues.  Caregivers get tired and need to get help, lest they themselves get sick.

Yes, I knew how to write a check. I had learned to use an adding machine. But neither finances nor bookkeeping was my forte. One day the church treasurer’s assistant called to tell me that Werner had written a check to the church, but had not signed it. This caregiver obviously had a new job: family finances.

Decisions! Decisions! Decisions! What doctor to go to. What medications to give Werner. How much outside help I needed to have. Which instructions regarding diet to follow. The hardest one came when, suddenly, one afternoon, he sat down on his walker and had to be pushed home. His blood pressure was way too high. With the help of his brother, a physician, I decided to call 9-1-1.

In the hospital Werner could not feed himself or walk. Thank God, our medical daughter was there with us. She helped us locate him in a memory care facility. The family decision to place him there was supported by a decision some 15 years earlier—before there was any Alzheimer’s diagnosis—to purchase long-term-care insurance. It is a true blessing for us.

Sharing Caregiving

Supposedly, the girls at the facility were taking care of Werner, but I found myself caring for him anyway: seeing that his hearing aids were in right, that he had his reading glasses, that he brushed his teeth. Then I was answering questions: “Why am I here?” “When can I go home?” “Why can’t you stay here with me?” That brought about the battle over how to tell the truth and still be reasonable. It also brought about tiredness—from giving the same answer 25 times.

Another important issue of caregiving is the “I have to go” problem. Fortunately, today there are appropriate undergarments; however, there are few appropriate bathrooms—ones that allow for a female caregiver and a male patient. That did away with church attendance—a great grief for us.

In January 2018, when we were flying home from a Chile family reunion—probably his last such privilege—Werner quietly told me “I have to go.” I knew it would happen someday, yet I panicked. We both squeezed into the airplane bathroom, with hardly room to breathe. The Lord helped me play my caregiver role, and we both came out alive and dry. The “I have to go” story repeats itself daily. There is a clear preference for my care rather than that of employees at the facility.

He has been in memory care now for more than a year. I go to see him daily, usually for a total of three hours. I read to him, run TV programs or videos he might like, take him for walks—shorter now than before. Sometimes I get him into the car and drive to a shady place where we have a “picnic” in the car. The facility caregivers do their best, but—like an infant—he needs more attention. Many days I leave the facility in tears, wishing for the man he used to be, but knowing that will happen only when Jesus returns.

Caregiving: Any Takers?

God has allowed me the privilege of being my husband’s caregiver, but I so much wish for some of his old friends to visit him and take him out for a ride. He enjoys the visits of family and friends, but most of them seem to be too busy for that. Paul says, “Carry each other’s burdens, and in this way you will fulfill the law of Christ” (Gal. 6:2). I know I’m privileged to bear my beloved’s burden, but I’m still praying for the burden-sharing experience. Could it be that some of our friends are afraid of dementia? Perhaps we need to have a training course for church members to learn how to visit the dear ones whose physical strength and mental clarity are on the wane.

Meanwhile the wonder of heaven and the new earth have become more real to me. Then we will care more fully than ever. Yet I can hardly wait for that glorious day when caregiving days, as I know them now, will be over.

Nancy Vyhmeister, a specialist in theological research methods, retired to Loma Linda, California, after decades in classroom ministry all over the world.