Coping With a Disabled Husband
A devoted wife learns how to honor her husband while dealing with his disease.
by Marcia Alice Mitchell
Shortly after Lee and I were married, he began to lose his balance while walking. Initially, the doctors thought he might have Multiple Sclerosis. They later amended the diagnosis to Cerebral Atrophy, then Atrophy of the Cerebellum, then Alzheimer’s. The latest amendment is Progressive Supranuclear Palsy. Dr. Reed, one of many doctors who examined Lee, informed me, “Many spouses cannot handle this disease and end up getting a divorce.”
I was prepared to stay with Lee and care for him, but I wasn’t prepared for the continuous changes in him nor the changes this would bring to our marriage and family.
As each diagnosis was given, I searched for any articles I could find. I discovered many on Alzheimer’s but few on the other diseases. I was shocked to discover the changes this would bring to the man who loved and encouraged me to be my best.
When I was afraid to try something new, Lee was the first to say, “You can do it! I have every confidence in your ability.” Because of his encouragement, I became PTA president four times and often gave programs on the history of our antique bells to various schools, churches, and women’s clubs.
I loved to write, but for years every article and story ended in a drawer. Lee’s belief in my ability and his love for me gave me courage to submit what I’d written.
My favorite part of the day was lying in his arms at night while we discussed daily events and made plans. It was during these times we chose to adopt two more children, adding to the four we’d brought into our marriage.
In return for Lee’s love and devotion, I wanted to be the best wife possible. I took classes and Bible studies on being a good biblical wife. I learned and tried to apply the three A’s: admire, appreciate, and accept. But I didn’t realize how much I would have to accept when Lee’s health turned bad.
The news from Dr. Reed explained tLee’s strange and often unpredictable behavior in the previous years.
One that stood out was Mother’s Day a few years ago when my husband decided to take our children and me to a popular restaurant. He forgot to make reservations, and when we arrived we found we had a two-hour wait for a table. Lee asked me, “What do you want to do? Shall we stay here or go elsewhere?”
Since I knew he had looked forward to eating at this restaurant even more than I, I suggested we stay. He surprised me by becoming angry. Confused, I tried again. “Maybe we should leave.” Lee became angrier. Since he was causing a scene, we had no choice but to leave the restaurant.
A couple of years later while we were on vacation driving cross country, we stopped at a campground for the night. Lee took our two 11-year-old daughters with him to get hamburgers for dinner. They were two hours late getting back because Lee couldn’t remember where the campground was located. The girls said he kept yelling at them, but they didn’t know what to do.
After the diagnosis was given, Lee and I were able to discuss and plan some changes that would have to take place. It was Lee’s decision to move from Southern California to Oregon. God gave me the peace I needed to accept this decision.
Gradually, my husband became agitated if he was forced to make decisions. Often, his choices would be totally wrong for the situation. Once when I went back to work temporarily while we waited for the house to sell, the school called Lee to say our youngest son was sick. Lee refused to pick John up, and told the nurse it was her responsibility to take care of kids. The principal called me at work. “Why would Lee yell at the nurse as if John’s illness were her fault?” he asked.
A tough decision
The day came when I had to make a decision I knew Lee would not appreciate. My heart pounded in fear. He’d gone to renew his driver’s license, and I prayed he would fail the test, since I’d become afraid of his driving. I was shocked when he failed the test, but his license was renewed anyway!
Later that day I called the licensing bureau. “How can you renew his license when he failed the test?” I asked. “He has some type of brain disease, and I don’t believe he should drive.”
Lee did lose his driver’s license. I cried for this man who had always loved to drive. While I could tell he felt humiliated and angry, I also sensed he was relieved because he no longer had to fear getting lost.
I learned if I tried to leave a decision to Lee, he got upset. But if I made it myself, he often accused me of wanting to put him in a nursing home. It was a no-win situation.
I cried into my pillow late at night because I missed lying in his arms and discussing the day’s events. We were no longer able to share. Most of the time my husband didn’t even know who I was.
To add to the problem, I heard sermons on radio or TV exhorting, “Wives, submit yourselves to your husband. Husbands are to be the leader of the family.” I felt guilty because I now made all the decisions.
It was then I talked to other women whose husbands had become disabled. Grace’s husband had developed a brain tumor. Mattie’s husband had suffered a stroke, and Betty’s husband’s personality had changed due to a cerebral hemorrhage. Each woman also felt guilty about becoming head of the family.
One day after hearing yet another sermon that the husband should be the head of the household, I cried out to God, “You knew Lee would have this brain disease. You knew he couldn’t be head of the family anymore. What am I to do?”
I began to study the women of the Bible in search of answers. In 1 Samuel 25, I met Abigail whose husband wasn’t sick with a disease, but was probably an alcoholic.
It became necessary for Abigail to step in and do what she felt was the right thing. She used the wisdom God gave her because she believed in Him. The same wisdom was available to me. God didn’t expect me to force Lee to make decisions he was incapable of making, and God wouldn’t punish me for making the decisions myself. After I accepted this, I experienced God’s love and strength as I acted as both mother and father to our children and as the decision-maker of the family.
One verse that helped me was Psalm 146:9, where God promises to take care of the widow and the fatherless. This includes me as well as others in a similar situations.
I also learned I could still apply the three A’s I’d practiced years ago. I admired Lee for his courage in facing a future he knew would eventually leave him totally incapacitated. I appreciated his willingness to do the few things he could manage on the days he felt able, such as folding laundry. But most important, I accepted Lee with all his limitations. God whispered to me, “With My help, you can do it. I have every confidence in your ability to take care of Lee.”
Lee has always loved to massage my scalp. One day before it became necessary to put him into a nursing home, he invited me to sit at his feet so he could start massaging. He leaned over and gave me a hug and, with tears in his eyes, said, “Thanks for putting up with me. I do love you.”
It was all the encouragement I needed to face the day ahead.