Help and Encouragement for Spousal Caregivers

sanctuary-in-the-midst

Today’s guest post is by Elizabeth Shulman. She shares her personal story about caring for a spouse with mental illness. While caring for him, she met others caring for loved ones with Alzheimer’s and learned that many of the challenges are similar. She eventually wrote a Bible study addressing those challenges.

Please click on the book image (left) to learn more about Elizabeth’s Bible study. “Sanctuary in the Midst of Alzheimer’s” is the only Bible study specifically designed to help churches provide support to now the largest group of dementia caregivers – spouses. Experiencing scripture through the lens of personal stories, participants get to ‘walk in the shoes’ of husbands and wives caring for a spouse with dementia. The result is a greater understanding of the caregiver’s role and a deeper empathy upon which an effective ministry can be built. You may visit Elizabeth’s website here.

And now, Elizabeth’s story . . .

I was married for 20 years to a brilliant, kind and loving man who was diagnosed with paranoid schizophrenia 12 years into our marriage. The depression related to trying to manage my husband’s behavior and adherence to his medication regime, along with raising four children under the age of 8 was overwhelming. I had sought help from support groups such as those sponsored by NAMI (National Alliance on Mental Illness); however, I did not meet other spouses in these groups, only siblings and parents of persons diagnosed with schizophrenia, and their issues and concerns were not the same as mine. My concerns centered on the commitment of marriage, questioning God’s presence in the midst of my turmoil and finding meaning in a relationship where my husband’s ability to function as a spouse, father and professor was dependent upon medication that he would repeatedly discontinue taking because in his mind, “he was fine and did not need it.”

A few years after his diagnosis, I realized we could not depend on his employment at the university as a guarantee for income, and I went back to work as a healthcare chaplain. I eventually became the pastoral care director for a 600-bed skilled nursing facility, and that is where I found my purpose in life that has directed my work the past 14 years.

What inspired me during this time was observing the husbands and wives who came to the nursing home where I worked to visit their spouses in the Alzheimer’s unit. Just to differentiate: Alzheimer’s and many other forms of dementia are a brain disease, whereas, schizophrenia is a mental illness; however, many of the symptoms such as disoriented thinking and speaking, paranoia, personality changes and forgetfulness manifest similarly, and so caregivers of both types of patients may experience comparable circumstances – which is why I identified so strongly with these dementia caregivers!

I will never forget Frank, a husband who visited his wife in the Alzheimer’s unit every day. One day he walked in and found his wife sitting on the couch holding hands with another man, and as Frank walked over to her and introduced himself (she had long since forgotten who he was), she smiled and introduced Frank to “her husband.” I could tell Frank was taken aback from this, but he quickly recovered and when I asked him about this encounter later, he said, “this disease may be robbing my wife of how she is, but it can never take away who she is: my wife and God’s child.”

Frank was just one of many spouses that I met while working in the nursing home. After some time, I began working in hospice and also encountered caregivers whose loved ones still lived at home. Their struggles were often compounded by the physical challenges of caregiving. I discovered that spouses’ approach to caregiving was as diverse as the caregiver. However, most struggled with coming to terms with how they viewed their commitment to marriage and all expressed profound feelings of isolation.

It was during this time that I decided to go back to school for my doctorate. My dissertation was on the experience of marriage for Alzheimer’s patients during which time I reviewed literature and interviewed spousal caregivers. As with the spouses I met in hospice, the theme of isolation came up in every interview, and – probably because I lived in the Bible belt of Tennessee – feeling isolated from their church in particular was a significant issue. In talking with pastors about this, it became obvious that church members wanted to help, but they didn’t know how. So, I used the findings from my research and wrote Sanctuary in the Midst of Alzheimer’s: A Ministry for Husband and Wives Caring for a Spouse with Dementia.

This book can be used many different ways. It is a written in the format of a Bible study using personal stories to guide discussion.  Anyone can lead it because the directions are embedded within the lessons. It is made up of two parts, one section for spouses and the other section for those who want to “walk in the shoes” of spousal caregivers to better understand their needs and discover ways they can provide support. In a church setting, a congregation ideally conducts this weekly program with both groups running simultaneously for 4 weeks, and then in the 5th week both groups come together to create a dementia ministry for their church using information gathered during the previous four weeks.

However, I have found that the parts of the book can be separated and used as either discussion guides for dementia support groups or educational programs for assisted living facilities or other communities that want to provide education as a form of outreach with a spiritual component. Additionally, spouses can go through the spousal section on their own, using it as a personal workbook to help them process their feelings and hopefully, find inspiration.

Jesus’ words, “You shall know the truth, and the truth shall set you free” (John 8:32) has been my foundation as I work with spouses to find meaning in their marriage and to help them make sense of a situation that often makes little sense. I have found that when spousal caregivers are honest about their feelings and their goals for caregiving, it allows them to express their love in the most honest way possible. (For example, when making decisions that they know is best for them and their spouse even if their children or friends disagree.) My hope is that Sanctuary in the Midst of Alzheimer’s will help guide spouses through the difficult terrain of dementia caregiving while also educating others on how they can best support these caregivers. When we are able to love openly, honestly and completely, we truly do experience the freedom that Jesus promises.

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