A Mother Managing Lewy

Michelle Pagans, a 53-year-old mother to a teen daughter and 27-year-old son, is taking on motherhood and Lewy body dementia (LBD) at the same time. In 2018, she started experiencing cognitive issues and was diagnosed with mild cognitive impairment (MCI).
 
Her physician thought Michelle had a B12 deficiency and given injections, which improved her condition. Of course, with LBD, it is never that simple and her symptoms progressed. 4 to 6 months after being diagnosed with MCI, Michelle started experiencing muscle twitches and her walk slowed. Her daughter, Sarah, would say things like “mom, keep up,” or “why are you walking like an old lady?”.
 
During that time, Michelle was seeing things out of the corners of her eyes that were not there. Usually the hallucinations were things like animals or people staring at her – they were not disturbing, but they did not exist. An experience with a cat hallucination prompted her to seek a neurologist who quickly identified her symptoms as LBD.
 
Though just 53, her diagnosis did not surprise her. Her grandfather had Parkinson’s and dementia, and she survived a previous battle with breast cancer. Although she was not surprised, she was devastated because she always appreciated the mind God gave her and her cognitive abilities.
 
“I would rather have cancer again than to lose my ability to think,” she said. She believes that cancer is definitive and something that has a possibility of being defeated while dementia is a condition that will be with her for the rest of her life.
 
Her diagnosis touches all areas of her life, including her identity as a mother. Raising a teenager is not the easiest thing by itself, but couple that with LBD and it becomes somewhat daunting. Her daughter, Sarah, is most affected by Michelle’s diagnosis on a day-to-day basis. Her husband, Steve, works outside of the house and is often away on business so the mother-daughter duo are mostly home together by themselves.
 
This frequent time together is punctuated by repetitive questions or statements that might frustrate Sarah. Her daughter has witnessed Michelle struggle with saying and thinking things that are not entirely accurate. Her husband, Steve, serves as a moderator and will sit down with them to help Michelle realize how things really are. Michelle’s son, Patrick, is home less frequently but will serve as a buffer between her and Sarah when she is experiencing a “Lewy moment” and Sarah is experiencing a “teenage moment”.
 
The relationship the Michelle and Sarah share has shifted. Sarah is no longer just the daughter, but she now serves as Michelle’s care partner. Sarah’s responsibilities include chauffeur and managing her mom’s schedule. Sarah helps keeps all of Michelle’s appointments and schedules them in her phone. Their sense of humor is still very much alive, and they will frequently joke that Sarah has become her “personal assistance”.
 
She recalls the moments she shared with her kids before Lewy and how they used to go out to the park, hike, or shop. Now, those moments are few and far between. Michelle is a people person, but she no longer wants to go out as much, and COVID-19 has not made things easier.
 
To combat the deterioration of her mind and keep neuropathways active, she took a part-time position in retail. Being so early in the diagnosis, Michelle felt it was necessary to keep her brain active and she can do her job without much difficulty. Unfortunately, the recent outbreak has put an end to that for now. It also prevents her from attending church service, something she enjoyed to express her faith and socialize with familiar faces.
 
Fortunately, the early diagnosis and the medications she has been prescribed have “improved [her] quality of life tremendously”. She felt like she was losing herself before being placed on medication and since, she feels she is getting herself back.
 
To guide her on her Lewy journey, she ordered materials from LBDA. She read the materials and shared them with friends and family. She supplements her support network through membership in LBDA’s Facebook group, “Living with Lewy”.
 
Her advice to mothers with LBD is that they should not attempt it alone. She does not think that had she not had the support she does, that she would not have the same relationship with her children.
 
Her advice to caregivers is to give those with Lewy a certain level of independence. They are “just like everybody else and you need to have patience with them”- do not try to do everything for them because, she said jokingly, “they’ll get spoiled and lazy”.
 
She also advices those with LBD to take someone without the disorder to physician meetings. They will be able to ask the right questions and advocate for the person with LBD in the doctor’s office.
 
Michelle’s final words to those with LBD is not to view the diagnosis as an end-all-be-all. It does limit some aspects of life, but it is important to keep living it and having fun. Michelle had the opportunity to go to Thailand, prior to the outbreak, and she had a blast. She made new memories and met new friends that she continues to keep in contact with via social media.
 
LBDA is proud of Michelle’s strength and resolve. She continues to be the best mother she can while facing Lewy.