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 everyone’s 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 Pat’s 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 don’t know what you’ll 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 else’s 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 couldn’t 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 aren’t 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 Alzheimer’s Disease. Dr. Dexter explained that there were five primary symptoms of Lewy Body disorder:
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 couldn’t 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 Pat’s thinking, but it couldn’t be diagnosed. The Lewy Body diagnosis came six months later upon re-examination.
Regarding Parkinsonism, Pat moves slowly, and that issue is exacerbated by arthritis. Sometimes she uses a wheelchair, especially for getting through airports and museums. She also falls regularly, occasionally inflicting significant injuries to her arms, face or head. We’ve had both a stair climber and walk in shower placed into our home to improve safety.
The third symptom, fluctuation, is considered the main way that Lewy Body differs from Alzheimer’s. Pat has good minutes and bad minutes, good and bad hours, good and bad days. Every day is a roller coaster of physical abilities, emotions, and thinking ability. This is predicted to continue through the course of the disease although there will be a gradual overall increase of symptoms.
Pat’s hallucinations come mostly in the morning and I believe they are related to the REM sleep problems mentioned above as Dr. Dexter’s fifth Lewy Body symptom. The hallucinations usually involve people, young children at first but now more often adults. Lately she has been doing physical exercises in her head. The problem is that people with Lewy Body have difficulty recognizing hallucinations as unreal. For example, one time she went all through the house (with me trailing after) looking for a lost child. This has actually gotten better, though, since Pat began to take a generic brand of Aricept, the standard medication for Lewy Body; most of the time now we discuss what she was or is still seeing and Pat eventually agrees with me that it was a hallucination. It helps that I no longer panic and insist they are illusions. It’s not all that big a deal, so long as she stays safe.
The Lewy Body Dementia Association lists these seven cognitive symptoms of Lewy Body Dementia: hallucinations, delusions, aggression, anxiety, agitation, and apathy.
Pat definitely has anxiety. She frequently needs reassurance that all is well. An example is that we drove home recently in the dark after visiting our daughter Cindy in Rochester, MN, about 90 miles from home. Pat was scared we would have an accident and she was disoriented about where we were. Taken together, she came perilously close to having an anxiety attack.
Verbal aggression appears most frequently when Pat is having a bad, arthritic joints achy day. She doesn’t yell and never becomes physical. But she complains a lot and lets me know she is unhappy with me no matter what I say or do. Later she sometimes apologizes as she realizes she’s been crabby. I want to add that most of the time Pat is kind and lets me know she appreciates the ways I care for her.
Depression and apathy are closely connected. Blue days, sleep in days, feelings of hopelessness and despair. Pat wants to do more but frequently cannot find the energy to begin, much less complete, a task.
The only symptom I haven’t seen occur frequently from this list of eleven symptoms is delusions. However, Pat does ask me questions such as “Who is coming from that group for dinner tonight?” when there is no group. She is usually quickly reassured, though, and soon gets back to reality. As with hallucinations, these incidents are most likely to occur as Pat wakes up from nighttime sleep or a daytime nap.
There are other symptoms and issues such as reduced ability to smell, digestion, blood pressure, constipation and urinary incontinence and both hypersensitivity and hyposensitivity to medications.
There are many medications and over the counter drugs that must be avoided on pain of worsening symptoms, sometimes permanently. Information about these drugs is readily available from sources such as Mayo Clinic and the Lewy Body dementia Association.
Lewy Body dementia can only be detected in the brain at autopsy, although I expect this to change soon. Under the microscope the neurons in widespread areas of the brain contain small black specks called Lewy bodies. The “Lewy” comes from an early researcher in the field, Friedrich Heinrich Lewy, for whom the disease was named.
And here’s the most painful part: the average length of life after diagnosis is only 5-7 years after diagnosis, although the actual range of life varies considerably on either side of this estimate.
Purpose of this Journal.
Lewy Body dementia is amazingly poorly recognized or understood by the general public, given that it is the second most common form of dementia. I admit I’d never heard of it before Pat’s diagnosis. There are an increasing number of scientific research studies and clinical trials, indicating increased awareness by the medical community. There are also several good books written by the spouses of Lewy Body patients that offer insight into the painful but oftentimes rewarding journey of those who love and care for their partners.
One continuing challenge for people with Lewy Body is how to live a meaningful life. What can Pat do now that her physical and cognitive capacities have lessened? As we’ve searched for answers to this question, we came up with a fascinating possibility. We are both writers. Pat has co-authored perhaps half a dozen books with me and I’ve written several more. Books like Letting Go of Shame and Letting Go of Anger were written for the general public (these are called trade books). They have sold well and received positive reviews for their readability, lack of jargon, humor and helpfulness. So why not write a book about our own personal experience with Lewy Body? We could do this as a team, alternating my thoughts as a caregiver with Pat’s thoughts as a person experiencing the disease. And that is what we’ve decided to do together, with the dual purpose of working together once again in partnership and hopefully helping guide others along this difficult path.
We began this book on Oct. 15, 2018. It wasn’t an exceptional day although we had a good time slowly driving through our western Wisconsin hills with Pat taking pictures of fall foliage. It’s simply the day we choose to start. Pat’s been diagnosed with Lewy Body about six months now. She is considered in the “early stage” of the disease.
This isn’t a daily diary. It’s more a dialogue. Actually, we don’t know what it is yet. Writers must have faith: write first and structure will follow. One thing I expect we will do is to discuss common concerns and situations from both of our perspectives.
One concern is my need to protect Pat vs. her need for autonomy. An example of a situation we must learn how to deal with is how to handle noisy restaurants and people as Pat has become very sensitive to loud noises and even more so to chaotic situations. When, if ever, do we look at nursing homes and memory care places when neither of us ever want Pat to go there? How do we manage going from spending maybe 4-5 hours a day in each other’s presence to spending almost all our time together?
Perhaps more importantly, we want to help readers understand and empathize with the pain and joys of the Lewy Body experience. One way to do this is by taking turns describing bite-sized portions of Lewy Body life such as hallucinations, having difficulty getting started, and trying to say things when the right words just don’t want to come. And, hopefully, we will be able to share our love for each other that is still growing even as we encounter this unbidden intruder into our lives.
Every day with Lewy Body dementia is both a nightmare and a joy. Every day together is both a challenge and a blessing.
A Note on our Technique.
The original intent was that Pat and I would both type our thoughts on the computer. We started out well (For example, Pat’s part of Ch. 1 was typed entirely by Pat). But gradually Pat began having problems typing. Maybe she was just trying too hard but after she spent two hours on two lines, I offered to take dictation. Most of her sections since then have been dictated. I’ve tried to stay true to her thoughts, which can be a little tricky; even before Lewy Body Pat was not a linear thinker; sometimes you may have a little difficulty following her ideas but I urge you to keep going because they will make sense after a while. We’ve chosen not to edit Pat’s words to fit standard English composition rules because we think it’s more important for readers to discover how Lewy Body dementia affects a person’s phrasings.
This Journal is a Dialogue and a Trialogue.
I’m writing this note on September,2019, almost a year after we began the journal. I’d like to add two thoughts:
First, Pat and I have learned a lot about each other by writing this journal together. Each chapter has taught us what our partner thinks and feels about a particular situation related to Lewy Body dementia. I know that for me there have occasionally been big surprises, times when Pat mentioned an idea, wish or emotional response I hadn’t even come close to anticipating. Our writing has become an adventure in mutual intimacy.
Secondly, I coin the word “trialogue” here to note that you, our reader, have been part of this journal since its inception. We hope you will enter our conversations and add your own thoughts and feelings. And, if you are part of a Lewy Body care partnership, we hope you will consider beginning your own dialogue with each other. We can assure you it will prove rewarding.
A Note on Terminology.
We utilize the term “Lewy Body” throughout this journal. There are two more common usages: “Lewy” and “Lewy Body Dementia.” We chose not to adopt either of these terms. “Lewy” felt too friendly to us, as if one’s favorite uncle just showed up for dinner and decided to stay forever. “Lewy Body Dementia,” while technically accurate, just felt too gloomy to write repeatedly, too depressing. So, we settled on “Lewy Body” as our term of choice.