K

eith first noticed something different about his left foot while dancing with his wife, Bernice, in 1991.

Ever the perfectionist, he thought his dance partner was not following his lead.

But a sluggish foot progressed into leg tremors, and by 1995, he had been diagnosed, at the age of 65, with Parkinson's disease, a disorder of the central nervous system that can impact a person's ability to walk, talk, swallow and control body movements.

Thirteen years later, Keith's condition has worsened considerably.

"By the time the disease is diagnosed, at least 80 percent of the cells in the brain that produce dopamine are already gone," Bernice says. "The tremors gradually went up the left leg of his body and then crossed over to the right."

"His hands and head are better than his legs and trunk. He does not drive or go for walks. He cannot go to the movies and has not been able to read a book for several years. He cannot sit for very long; he needs to change positions often because his muscles cramp easily. If he takes too much medicine, it causes the muscles to jerk or cramp, causing tremendous pain."

Bernice has become the primary caregiver for Keith, who is now 78. For her, their retirement years have become a blur of medications, meals and therapy. She works diligently to find a balance between encouraging her husband's independence and offering the personal care he frequently needs.

"Some days I need to dress him and help him in the shower. Other days, he can do it by himself," Bernice says. "I administer his medication and put him to bed. He eats very slowly, and swallowing will increasingly become more of a problem. About once a week, we try to go out for breakfast because that is his favorite meal to eat out. He uses a walker in the house but doesn't like to take it to a restaurant. If he has to use it, he would prefer not to go."

Disability changes relationships

The disease not only robs Keith of his physical strength but also affects his brain function - and slowly takes from Bernice her companion and life partner.

"No two days are alike. Sometimes he still can be ‘on' for an hour or so and goes through old newspapers and magazines. He takes medication at night to cut down on hallucinations. His memory is not good, and his ability to concentrate is getting worse."

"We do have conversations, but he isn't interested in many things anymore."

To keep a positive attitude, Bernice waits until mornings, when Keith is typically feeling his best, and then leaves the house to go grocery shopping and have coffee with friends or to church to play the organ.

The caregiving spouse’s life becomes more stressful and complicated as the disease progresses.

She also started seeing a therapist three years ago, something her husband's neurologist had suggested.

"The doctor's rationale was that my life would only become more stressful as Keith's disease progressed," she says. "My life would never get any easier ... only more complicated."

A support network

While Bernice works to find balance in her relationship with Keith, their children also struggle with how best to support their parents.

"I am not always sweet, loving and patient," Bernice says. "It bothers me when our children question medical decisions we have made. I want them to help without making me feel like their child. We are still the parents and still in charge!"

"However, I realize it is difficult for them, too. We have great children. They all call each day to see whether we need anything."

In addition to their children, Bernice and Keith have witnessed the love of Christ through their network of friends.

"You will find that you have two different kinds of friends," Bernice says. "Some friends offer their support and come for visits. The other ones write you off when you no longer are able to go out to movies or to dinner. We have both kinds - but enough of the former to make us feel supported. Our circumstances are so much better than other couple's because we have God and a support network."

Amazing grace

Caring for a spouse who is very ill involves grieving the loss of their marriage as they knew it.

On that day of Keith's diagnosis, life was forever altered.

"Caring for someone who is ill is a very real grief situation," Bernice says. "I had to grieve the loss of my marriage as I had known it, the loss of our travel plans in retirement ... and learn to find a modicum of peace and acceptance with the reality of the situation. I could not do it without the grace and love of God, and the support of many people who love me."

"Because I am 10 years younger than my husband, I am still physically able to manage his care, which is a godsend. Keith rarely complains and always appreciates everything I do; and we both pray that I will always be able to care for him at home."

"Still, it is sad to see him lose interest and ability in all the things he loved to do. He did manage to go to church on Christmas Eve and sat with our son's family. But this will likely be too tough for him to do again."

In small and large ways, Bernice models Christ's compassion and patience to her husband. She makes sure he is well groomed, something which is very important to him. She encourages him to keep trying, even if it is something as simple as walking to the deck to spend time in the afternoon sun. She meticulously tracks the dosages of the many medications Keith takes to help control his disease.

And she keeps her faith in perspective.

"God's grace and forgiveness are wonderful," she says. "My biggest frustration is the overwhelming amount of work I need to do - there are not enough hours in the day. My job now is caring for Keith, and helping him adjust. It is hard to take one day at a time. I just have to remember that God will give me sufficient grace to meet the needs of the day."