Editor's Note: This is a Top 15 CBE Writing Contest Winner.
Imagine this scenario with me: A husband in his sixties hurls physical threats and curses at his wife daily. She walks a fine line to avoid aggravating him to the point of violence. The empathy and thoughtfulness that had long been natural between them evaporated. She celebrates important dates without his acknowledgment. He is demanding and seldom shows appreciation; he never says, “thank you,” nor considers the stress he creates. He regularly threatens divorce. He called 911 to have them “take care of her.” This situation escalates over ten years.
Would you stay in this marriage?
This is my story, but the man I describe is not the same man I married, even though he appears the same and recognizes the same name.
When we married in 1974, my husband and I both came from patriarchal church traditions—what else was there in the seventies—and we innocently repeated the traditional “love, honor, and obey” vows. Several years later, when our children were still young, we left church after yet another sermon on women and their “biblical” status. He asked me if I was bothered by the sermon content. At the time, I was only familiar with the traditional interpretations. He was insightful enough to note the dissonance for me and our kids—surprising, considering his Catholic background. His remark gave me incentive to look into feminist theology. In about 1994, I stumbled upon authors from the CBE catalog in a secular bookstore. This newfound knowledge was in line with what we already practiced in our marriage. We switched churches and continued to enjoy many years of a marriage that I would consider better than average.
After so much positive life experience together, how is the first scenario even possible?
As we approached our forty-fifth wedding anniversary, my husband was no longer the kind, sweet man I met in college many years before. That man would have been aghast at the very thought that he was capable of laying hands around my neck or calling me filthy names. There is no way that he or I could have imagined our marriage ending so tragically. What went so wrong?
A third party had entered our marriage; it wasn’t pornography, boredom, or an affair. Our world collapsed when he was diagnosed with Alzheimer’s disease. Long before his professional work was impacted, I noticed the changes in our marriage. We started marriage counseling and he finally agreed to see a neurologist. Then we were greeted with the news that all the testing indicated Alzheimer’s. The only hope was that the decline would be slow. Death will bring the only relief. Even the most mature faith will break. One can only cry in despair amid such cruelty, “Where is God?”
Soon I was no longer a wife; I was the caretaker of a bitter, resentful, volatile human who used to be my husband. Any personal convictions that I may have had concerning roles in a marriage or who the decision-maker was were of absolutely no consequence. I was never asked if my increasing responsibilities were counter to my beliefs concerning any hierarchy between husband and wife. It was all on me, and only me, to take over the responsibilities and decision-making for both of us.
On top of the increasing workload in the household, his decreasing ability to be a capable adult added yet more challenges to my already steep learning curve. He became unhappy to be left at home alone. He resented the activities and friends that took me away from him. I had to watch him like a toddler in public or he attracted disapproving looks. Soon he could not tell time, keep a schedule, remember appointments, take his medications, make change, or perform dozens of other everyday skills we take for granted.
My husband also had prior military experience during the 1991 Desert Storm in Iraq. As his brain weakened, PTSD symptoms flooded his memories. He was plagued by nightmares, poor sleep, and suicidal ideation. He hated loud noises and wouldn’t let me play the radio in the car, turn the TV on, or play musical instruments. Family conversations were usually too loud for him, and he could not participate. About seven years into the disease, it was difficult to go to movies, restaurants, and concerts.
To answer the question above, I did stay in the marriage. I could not desert or divorce him. He was a good man. We had many adventures together and raised two fantastic kids. It was that devil of a disease, Alzheimer’s, that made him volatile. His later violence was not really him. He would abhor the thought of being remembered as cruel and heartless. He did nothing to deserve what happened to him. He loved to help people, and he spent his life serving in the military and in medicine. I reminded him frequently of what he once did, who he once was, and who we once were, but it made no impression on him due to his memory loss.
In these circumstances, all the assumptions of shared responsibility in an egalitarian marriage crumble. When the husband is the spouse afflicted, his wife must make decisions that he will resist. The complexity would be compounded if he had been the kind of person who insisted on taking the lead all the time. She will be the one to take the car keys away, hide his credit cards, make financial and medical decisions, lock the doors, and may, as I did, decide whether to prolong his life. Even the most egalitarian-leaning husband will protest these decisions as he is losing his grip in understanding common-sense safety.
I can talk about this experience in the past tense now because by God’s mercy my husband died after a serious stroke in April 2019 at age 69. He could have easily suffered from Alzheimer’s another five years because he was still in the moderate stage. Until the stroke, he was physically capable of many activities. He recognized his family and friends, enjoyed our new granddaughter, and mostly could handle his personal care, which was just beginning to deteriorate. The stroke he suffered spared us both the additional misery that many spouses go through as the disease progresses. When one can say that suffering a stroke is merciful, the preceding years were horrible.
What have I learned from this experience that I should share? All the prayers did not take away the Alzheimer’s. A cure did not come in time to help him, and there wasn’t a wrong diagnosis. But I experienced prayers answered in the form of many blessings from family and friends surrounding this life change. During the two months after he had a stroke, he only barely expressed himself with his eyes and hand squeezes. It gave me time to find peace and return our relationship somewhat back to what it was. I started praying with him again, telling him that I loved him, and how much I missed him. This made him cry. I could forgive him for the past years of cruel behavior. I hope he forgave me.
Even if cognitive or psychological issues are not (yet) impacting you, it could be impacting the marriages of your parents or grandparents. Any couple at any age could be faced with similar devastation, but the likelihood of this tragedy increases as the years pass. In 2019, there still is no cure and medications only provide a temporary reprieve. Respite for the caretaker depends on hard financial decisions. A bad day with dementia is a good as it will ever be. Tomorrow can only be worse.
Should a wife risk her own health, sanity, and even safety by caring for and living with a man who is severely impaired? How seriously must we take “in sickness and in health”? Do the vows still apply when Alzheimer’s and similar diseases invade the brain? Of course, a couple supports each other through physical trials, but dementia is suffering that puts the caretaker at risk in ways other diseases do not. For the caretaker, either husband or wife, the emotional and verbal abuse is hurtful enough. In addition, a physically weaker woman can be in bodily danger. If you are unfamiliar with the horrors of this illness, sample the numerous Facebook pages or blog sites written by spouses of Alzheimer’s patients: “I have to get out!” is the most common cry.
I certainly do not judge spouses who simply cannot keep up the rigor of the full-time physical and mental toll of being a caretaker. About one-third of spouses do not outlive the patient. I had resources and help that many couples lack. Many caretakers are older than me and have their own medical cares. I do not advocate for doggedly staying together no matter what, but desertion is also not always the only option. Intermediate steps can be taken to protect the wife and protect the patient from himself, while she can still support him emotionally. Every marriage and every illness create unique circumstances.
No one is getting younger. Most likely death will end a marriage, leaving one spouse widowed for a few years or decades. The issues of singleness, calling, career, courtship, young marriage, and family are important. But as the decades pass, life happens. We live in a fallen world. Only a few blessed couples will grow old together with the love of their lives and die within a few years of each other. Women must be prepared for the end of marriage, long terminal illness, and widowhood. These life stages leave women vulnerable if they have leaned on their husband to do the decision-making. Forging ahead in singleness after marriage is hard, but the woman who was led since youth to believe she is lesser will sink.
How does CBE support couples in this stage of marriage? CBE exists to empower women to be educated decision-makers and confident leaders. The issues related to caring for a spouse with Alzheimer’s, or any other debilitating disease, is one more reason for women to develop all their God-given gifts so that they will have the confidence to meet these challenges. Since no one is exempt from the possibility of this experience, spouses must plan and discuss it while they are still healthy. Talk with your spouse about the eventuality of death. Write a will and an advance directive, including directions on what medical procedures each of you is willing to endure in serious illness. Plan for the eventual possibility of living without the other. This is not for the faint-hearted. Then embrace your life and fully live together for as long as God grants.