My interest in the topic of marriage and how it is impacted by dementia stems from my own experience working as a chaplain in both nursing homes and hospice, as well as from my experience caring for a spouse. It is important for me to note that my former husband gave me permission to share this story and that his permission was given during a period in time when he was compliant with his medications, in his right mind to make decisions, and was successfully working and caring for his family. This was a period of time that did not last.
I was hired in the fall of 2005 to design a pastoral care department for a large nursing care facility in Knoxville, Tennessee. During my time there I encountered many tearful visits with family members who had a loved one residing in the secured dementia unit. Family members struggled with such things as their loved one not remembering who they were, being embarrassed or uncomfortable about their family member’s behavior, and feeling guilty over not being able to care for them at home. Spouses in particular seemed to struggle with these issues while also grieving how their spouse “used to be.” Spouses spent a lot of time reminiscing about their years of marriage and asked questions such as, “How can I treat this man like my husband if he no longer treats me like his wife?”, “What kind of husband am I, that I can’t care for my wife anymore?” and “How long will this go on?” These were questions and emotions I had felt just two years prior in regards to my spouse.
In 2002, twelve years into our almost twenty-year marriage, (with four daughters!) my husband, a brilliant organic chemistry assistant professor, was diagnosed with late on-set paranoid schizophrenia and obsessive-compulsive disorder. If you’ve seen the movie, A Beautiful Mind, all I can say is Russell Crowe’s character, John Nash, absolutely captures the very same behavior and situations I witnessed in my husband. Unlike Alzheimer’s, a degenerative brain disease, schizophrenia is classified as a mental illness. However, many of the symptoms of the disease such as disoriented thinking and speaking, paranoia, personality changes and forgetfulness manifest similarly to those with Alzheimer’s and so caregivers of both types of patients may experience comparable circumstances.
Similar to the experiences of those I met at the nursing home (and later interviewed for my doctoral research), I suspected that something was not right with my husband long before he was officially diagnosed. Approximately four years before the diagnosis of schizophrenia, I observed sporadic personality changes in him such as increased paranoia and becoming extremely judgmental. At first, these changes were isolated and did not last long. However, over the course of the next four years and particularly the two years leading up to the diagnosis, his condition rapidly deteriorated. Forgetfulness, the inability to follow simple instructions and an unwillingness to attend to personal hygiene were symptoms evident in my spouse. As I discovered, many of these symptoms are also seen in persons with Alzheimer’s and other forms of dementia.
At first, I made excuses for these actions and at the same time hid them from many friends and acquaintances; both hoping they would not notice anything was wrong while at the same time explaining my husband’s behavior as “being under a lot of stress.” Hiding the problem is not uncommon for many spouses of Alzheimer’s patients, particularly prior to their diagnosis when one isn’t sure what is wrong and is trying to protect their loved one. A meaningful caregiver illustration told to me by my brother-in-law perfectly captured those years leading up to his major “break” or manifestation of the illness. The illustration comes from nature that a frog, when placed in scalding water, will immediately jump out. However, when the frog is placed in room temperature water and the water is gradually heated to scalding, the frog will continue to acclimate itself until it is burned. As a caregiver, I continued for far too long to acclimate to the increasingly odd behavior of my spouse. Not until his safety and the safety of our children became a concern, coupled with a visit from out-of-town relatives who were shocked by his condition and behavior did I become fully aware of his need for medical help. With a tremendous amount of emotional turmoil, my husband’s family and I sought hospitalization for my spouse against his wishes.
The increasing responsibility of caring for an ill husband changed the roles in my marriage. This is something experienced by almost all husbands and wives of spouses with Alzheimer’s, particularly if they care for their spouse at home. As the well spouse takes on more duties, he or she may feel overwhelmed. In addition to the physical tiredness that often comes as the result of caring for a spouse, the emotional toll can also be great. For spouses impacted by dementia, the familiar routines and behavior, the comfortable and predictable conversations and mannerisms and the shared expressions of love gradually disappear. Emotional and physical intimacy take on a new perspective when the role of husband or wife becomes more like a parent caring for one’s child.
Concurrent to the increasing obligation to care for someone so significant in one’s life is the diminishment of the very person to whom one would most likely turn for comfort and support. Author Helen Davies and her colleagues point out, “[Spouses] must manage their own grief and sense of loss while still maintaining constant devotion to the source of that loss.” (Davies et al.,1992) The experience of losing the emotional and intellectual intimacy of one’s spouse is a concern I heard countless times in talking with spousal caregivers. These particular losses are what compelled me to study the impact of dementia on marriage.
The decision to keep embarrassing behaviors a secret is fraught with second-guessing, and the decision to tell others is another parallel struggle I experienced similar to caregivers whose spouse has dementia. For years, I only disclosed partial information to a few close friends and family members. Following the advice of one such friend that my spouse’s condition was “his story to tell” inhibited me from talking more extensively about the oddities of my spouse’s behavior with others. In addition to that, I also did not want to inconvenience others and thought I could handle the situation on my own. Protecting my spouse from other people thinking he was acting strangely was denying what turned out to be obvious to most: he was, indeed, acting very strangely.
In their study, “Realizing Wrongness: Stories of Older Wife Caregivers,” researchers Janet Witcuki-Brown and Martha Raile Alligood (2004) found that many female caregivers know something is not right years before they seek help. Often, the wives tend to minimize the problems that are occurring as a means of coping. In their article they quote a woman whose response to her husband’s illness mirrors what I experienced:
"And I kept telling myself, ‘Well, it’s not Alzheimer’s. They don’t know what they’re talking about because this man is perfectly normal!’ When all the time I knew, but I just did not want to accept it. Because that is a very bad thing, you know, to come to accept (tears in her eyes). ‘Cause here, you know, you marry this real strong man that has worked all of his life, was active, and exercised, and walked. And all at once, you know, you see this man - you don’t know him!"
Throughout those years, I focused on trying to make sense out of what was a senseless situation. In seeking to recognize a person that, due to the nature of the illness, was not the same person I had married, I temporarily lost my own sense of self to caregiving.
It was not until I began my chaplain residency in a Clinical Pastoral Education (CPE) program that I began to value my own identity as a spousal caregiver. When asked by my supervisor, Sheryl, about my reluctance to share my experience with others, I recounted the words of my friend who had told me that it was my husband’s story to tell. The supervisor responded, “Yes, but it is your story that you are the wife of a man with paranoid schizophrenia.” Those words gave me powerful permission to begin telling my story. In turn, I have had the honor to listen to hundreds of husbands, wives and significant others tell their stories of caregiving for a loved one with Alzheimer’s or another form of dementia.
Their stories, coupled with research from literature and scripture that speaks to the challenges of caregiving became the backbone of Sanctuary in the Midst of Alzheimer’s: A Ministry for Husbands and Wives Caring for a Spouse with Dementia. A constant need that presented itself over and over in my interviews with spousal caregivers was the desire to have more support from their church. In talking with pastors, all of them expressed a desire to help but many didn’t know how. So, I designed the book as a 5-week Bible study to both educate churches and provide support for spouses who now provide the majority of care to Alzheimer’s patients.
In my 30s and 40s, I felt so much despair and hopelessness. I could never have imagined that all the challenges I faced in my marriage (which ended in 2008) would direct my life’s work toward making so many meaningful connections and preparing me for the work I now do with men and women caring for a spouse with dementia. Today I am on a journey with others with the goal to not only find “the peace that passes all understanding,” but to discover a peace so deep that it needs no understanding.
May you have that peace.
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