A word about guilt

Feeling guilty is a common emotion for dementia caregivers, and it usually stems from believing you made a mistake or did something wrong. It is also an extremely useless emotion EXCEPT when you use guilt as the impetus to NOT feel guilty. 

Dwelling in guilt keeps you stuck in a place where you will never feel better until you decide to turn away from it.  Just as you can never be poor enough to rid the world of economic hardship or hungry enough to rid the world of starvation, you will never feel guilty enough to cure your loved one’s dementia; which is why guilt can be a very unhelpful emotion.

You can’t just decide to not feel guilty. Turning away from guilt means you need to turn to something else to replace it. But in doing so, remember that you also can’t control your loved one’s response to however you choose to replace the feelings of guilt. The only person you can control is yourself, so let’s focus on that. 

An example: You constantly think, “I don’t visit my loved one often enough.” This creates a lingering negative feeling for you. There could be many reasons why you don’t visit your loved one more often. Maybe you are juggling a job and kids. Maybe your loved one tries to make you feel guilty when you leave, and you want to avoid that. Maybe you just don’t like visiting. All of those are valid reasons to explore the quality and quantity of your visitations (even the last one!) Be honest with yourself and explore what you enjoy and don’t enjoy about your visits. Write it down. Then look at what you have written and ask yourself, “How would it make me feel if I honored every one of these reasons as true and valid and did not judge them as “right” or “wrong?” Your reasons behind visiting (or not visiting) are YOURS, which make them the most important, and they should be honored above anyone else’s. Why? Because when you honor you and your reasons first, you then act from a place that is authentic. And when you do that, it invites possibilities to view your visits in a new way that could never come about if you stayed stuck in guilt. 

Practice making decisions based what makes you feel good. Doing this puts you in a place where you can see things in a new way.  You might be surprised how your overall feelings change toward your visits with your loved one when you decide to replace the unproductive feeling of guilt with the productive feelings that come from giving yourself grace, turning your attention to things that bring you joy, and allowing a situation to “just be” with no judgement attached to it. 

Easier said than done? Of course! But the gain and growth are in the practicing. And practicing replacing guilt with compassion and putting your attention on what makes you feel good can make the difference between a life of suffering and one of joy. And when you are in a place of joy, everyone around you – including your loved ones with dementia – will benefit.

"When we are no longer able to change a situation, we are challenged to change ourselves." These words by Holocaust survivor Viktor Frankl can offer brilliant guidance to those caring for someone with Alzheimer's or another dementia-related illness. There are more than 16 million dementia caregivers in the U.S. Not surprisingly, a sense of burden and depression are two of the most researched areas in the field of caregiving.1 Whether it's limited support, a response to their loved one's behavior or just a general sense of loss, it is not unusual for caregivers to wish things were different in some way. However, when a stressful situation offers no immediate solution, caregivers may discover a sense of hope and well-being not by changing their actual circumstances, but by changing how they look at their situation. » more 

In Finding Sanctuary, Dr. Shulman seeks to match church members’ gifts and caregiving families’ needs. Each party has the responsibility to come forward. Shulman’s guide makes it possible... While she writes from a Christian perspective, readers of different faiths and spiritual practices will derive benefit from her universal message: People come together—those who want to serve with those who have a need. 

~ Brenda Avadian, MA

Author, Finding the Joy in Alzheimer's

Founder of The Caregiver's Voice

Congregations are uniquely positioned to provide support for people with dementia and their spouses. Yet, many pastors and congregations feel inadequate to provide the spiritual and emotional support needed. Finding Sanctuary in the Midst of Alzheimer’s is an excellent resource for individuals and congregations who want to be in ministry with this growing population. It is more than a "how to" book; it is an avenue into the world of dementia where God's redemptive presence creates community and transforms both the care givers and those receiving the care. I highly recommend this resource to every pastor and local congregation!

~ United Methodist Bishop (Retired) Kenneth L. Carder, author of Ministry with the Forgotten: Dementia through a Spiritual Lens (Abingdon Press, 2019)

Williams Distinguished Professor, Emeritus

Duke Divinity School 

Elizabeth Shulman has written a compassionate and practical book to guide religious communities to support husbands, wives and all family caregivers struggling to understand and cope with Alzheimer’s disease. The number of family caregivers of someone with Alzheimer’s disease is growing rapidly as the population ages. Most family caregivers are overwhelmed and need the support of their religious communities. Dr. Shulman describes a program of Bible study that can offer help to congregants by preparing leaders to reach out to caregivers.  Caregiver stories set the stage for each section and promote deep insight and empathy. This book will help communities combat stigma and abandonment that is a common problem families face.

Sanctuary is an outgrowth of her research when she was in seminary. Her stories of families illuminate the journey of husbands and wives as they adjust to changes in a loved one who is ill. As a nurse researcher on family caregiving, I found her book fascinating and very readable-her work resonated with my own research findings. The outcome of the program she describes will likely be a more supportive community and personal and spiritual growth for congregants. I highly recommend it.

~ Christine Williams, DNSc,RN,PMHCNS-BC. 

Professor Emeritus Christine E Lynn College of Nursing

Florida Atlantic University 

Finding Sanctuary in the Midst of Alzheimer’s is a much-needed guide for family members caring for their companion or parent. In the confusion and anxiety related to Alzheimer’s disease, there cannot be enough guidance for the caregiver. They suffer tremendously in their need to care for their loved one.  Finding Sanctuary in the Midst gives them the spiritual guidance needed.  Caregivers, in times of stress, question many things, including their faith.  This program helps caregivers get on track with their own spirituality while caring for their loved one.  Excellent program, would recommend for any dementia caregiver.    

~ Mary Finn

Director of Administrative Services

Alois Alzheimer Center, Cincinnati, Ohio

    This study guide is a gem! It is just what a lot of congregations are looking for to engage hard-to-engage folks, build relationships among members, deepen healing ministry, and educate the whole congregation. Dr. Shulman brings decades of research and practical experience to bear in this approachable, user-friendly toolkit.
   It's a tough subject, one that most folks hope they never need to learn much about. The local congregation may be one of the few places in a lot of communities that is equipped to provide loving leadership in tackling the nuts-and-bolts information, busting the myths, and moving participants from fear and shame to compassion and action.
    On one level, this study guide is simply a practical approach to helping congregation members cope with a difficult family situation--but there's more to it than that. At a time when disorders impacting mental capacity are still stigmatized, this study guide can help congregations reconnect with their role as "sanctuaries"--safe spaces for those who are suffering. And on a deeper level, developing a ministry grounded in Shulman's process will allow people of faith to bridge the gap between its internal, member-focused ministries and the needs of the wider community.
    As someone who works with communities of all faiths on developing "justice" ministries, I am constantly struck by how congregations miss the opportunity to connect their internal programming to their prophetic activities." Finding Sanctuary in the Midst of Alzheimer’sis a perfect example of how providing comfort to specific individuals can build the congregation's ministry to a hurting world.

~ Bee Moorhead

Executive Director

Texas Impact and Texas Interfaith Center for Public Policy