Patricia Potter-Efron - Lewy Body Dialogue: A Couples Conversations as they Encounter Lewy Body Dementia

Preface

Ron Potter-Efron contacted the Lewy Body Dementia Association in June of 2018 asking if there were any support groups for persons with Lewy Body Dementia (LBD). He was in a group for caregivers, but his wife Pat, who had been diagnosed with LBD in 2018, was interested in attending a group that included people with the disease. His email was forwarded to me. I am a Lewy Buddy volunteer, responding to phone calls and email inquiries from people asking for support and information. I emailed Ron and told him that although there were no such groups in Wisconsin where he and Pat lived, I had started a group in Minnesota where both the person with LBD and a caregiver, friend, spouse or partner were welcome to attend. I was also a facilitator for a group of LBD caregivers, but I had seen a growing need for a group that included people who had LBD. In 2017 I was able to get the group going and it was attracting a good group of people. Pat and Ron attended their first meeting in July 2018, traveling for several hours and staying overnight in order to attend the group meeting the next morning. They have been regular attendees ever since.

The focus of the group is on the person with the disease, providing an environment where they can support one another and share experiences that are unique to LBD. The main intent of the group is to reduce the isolation that people living with the disease would often feel, making it possible for them to help one another through the challenges and issues. When the group first started, I had planned to have caregivers and persons with LBD meet separately, at least for part of the meeting. The first few meetings only had one or two couples attending so that idea was left for when the group got larger. The dynamics of the group conversation continued as more people started coming to meetings and it became obvious that the group was working really well as a whole. The group evolved into becoming not just a patient support group but a team support group with couples, family members and friends learning from one another and interacting with each other. It became a group of care partners, where everyones viewpoint was carefully and nonjudgmentally listened to.

I see this group dynamic at work in the chapters of Lewy Body Dialogue. Pat and Ron do not always see eye to eye concerning Pats disease and her care. They are open about this and their ability to express their different perspectives helps others to recognize that there are two sides to the caregiving experience.

Being in a relationship that involves caregiving changes things. The roles and expectations that develop over many years become different, sometimes suddenly, and most of the time not willingly. Care partners must adjust and learn as needs evolve. Finding ways to be independent while acknowledging what limitations have to be accepted is a constantly moving target. It is even more of a challenge with Lewy Body Dementia. Fluctuations in physical ability, cognitive abilities and emotional personality make things easy one day but extremely difficult the next. How do you set boundaries or make plans when you dont know what youll be capable of? How do you trust someone to help you pursue your own desires when it seems they are always afraid for you? What if you experience something that your partner just cannot understand? We talk about these things during our group meetings. Pat and Ron relate their personal examples in this book.

The Lewy Body Dialogue project was first mentioned during a group discussion about maintaining meaning and purpose when dealing with a disease that makes everything more difficult. People talked about being overwhelmed by the loss of their abilities and not wanting to do things that they can no longer do as well as they used to do. Caregivers talked about becoming exhausted by everyday tasks and the worry of being responsible for someone elses well-being - of always being on-duty and not being able to enjoy life together the way they used to. And yet people were finding ways to have fun and talked about what activities brought them joy. There were a wide range of examples - from fishing to cookie baking. Many people drew upon what they liked to do in the past and made it work in the present. Some found that simple things like taking a walk or watching a musical or nature program worked well. One person with LBD was surprised when they discovered that although they couldnt do the activity when it was presented to them, they could show someone else how to go about doing it, step by small step.

Pat and Ron talked about how writing, specifically writing to help others, was something they had done during their careers as counselors. This had been very important to them not only as individuals but as an activity that strengthened their relationship. They had co-authored several books, some of which are still widely used in their specialty fields of anger management and addiction. They discussed how they had revisited the idea of once again writing as a team and had come up with the idea of Lewy Body Dialogue as a new project that used their skills and enabled them to once again work together. The project ended up not just being an activity with meaning for them, but with meaning for the many people who now follow their story.

I am very grateful for the effort that Pat and Ron have put into creating this dialogue, being willing to expose their thoughts and fears, pain and joy so that others can realize that they arent alone in their own struggles to deal with Lewy Body Dementia.

The story that they tell has ups and downs, insights and misunderstandings. By reading it you will get to know them as wonderful people who are very much in love and want the best for each other in the midst of a disease that continues to challenge them.

I invite you to travel with Pat and Ron Potter-Efron on their journey. If you are in a care partner relationship, consider becoming part of the dialogue. Talk to each other about what Pat and Ron have experienced and what you have encountered in your own journey together.

Paula Rice Biever

December 2019

Facilitator of the MN E Metro LBD Caregiver Support Group

Facilitator of the Twin Cities Support Group for Persons with Lewy Body Dementia

Lewy Body Dementia Volunteer of the Year 2017

Introduction October 2018.

Pat Potter-Efron is a recently retired mental health counselor and co-author with her husband Ron of several well-received books on shame, anger and addictions. Pat is a highly creative individual with a special gift for counseling people, the ability to connect with people that others had been unable to assist.

In April 2018, at the age of 73, Pat received a dreaded diagnosis from her neuropsychologist Dr. Donn Dexter. She has Lewy Body Disorder, a form of dementia -- the second most common dementia after Alzheimers Disease. Dr. Dexter explained that there were five primary symptoms of Lewy Body disorder:

1. Cognitive decline: confusion, loss of sequencing ability, less problem-solving ability, etc.
2. Parkinson-like symptoms: slow movements, difficulty initiating behavior, facial rigidity.
3. Fluctuation of mood, thinking, physical wellbeing: hourly, daily, weekly.
4. Hallucinations: especially in the morning, varied ability to recognize as unreal.
5. Sleep problems: especially REM sleep difficulties resulting in fatigue.

In terms of the Big Five above, Pat has had all of them to some degree. The cognitive decline showed up slowly. She had several urinary tract infections in 2017, an illness well known to cause confusion in older women. But even after the UTIs cleared up she still could no longer keep up with her paperwork, she couldnt keep track of her schedule, and her colleagues at work became concerned. So did her family, including me, Ron, her husband of 53 years. This led to her first meeting with Dr. Dexter in December 2017, who even after testing could only say that something was affecting Pats thinking, but it couldnt be diagnosed. The Lewy Body diagnosis came six months later upon re-examination.