A Multigenerational Conversation between Ellen Sue and Tiffany

Tiffany: How would you like to introduce yourself? 

Ellen Sue: My name is Ellen Sue Moses, and I am an ambassador for people experiencing cognitive change. I am a retired pharmacist and have been living with vascular dementia diagnosed seven years ago. I attended pharmacy school at the University of New Mexico College of Pharmacy. Over the years, I have lived in several states and gained a broad range of professional experience, including working as a pharmacy consultant for skilled nursing facilities.

These days, I live with my partner, Mark, and Oscar the Cat. I also love gardening and growing orchids, reading and taking walks.  

Tiffany: What do you believe are some misconceptions about how people view life with dementia? 

Ellen Sue: One of the biggest misconceptions is a dementia diagnosis means you can no longer have a full and rewarding life. The stigma created by family and friends, the media, physicians and well-meaning professionals often assume that we can no longer safely socialize with family, continue to learn, and participate meaningfully in the world around us.

I encounter people who do not understand that it takes me longer to process information and create a response. Sometimes, instead of allowing me that time, they repeat themselves, speak loudly as if not heard and get impatient. I have even had a family member become angry, yell at me, and walk away. Experiences like that can be very painful because what I need instead is patience, understanding and respect.

People often think that a diagnosis is the end of their life. Instead, it is the beginning of a new adventure for me in a life filled with adventures

Tiffany: How do you manage or respond to those situations?

Ellen Sue: Sometimes I tell people directly that I have cognitive change, and I try to help them understand what that means and how best to communicate with those of us with cognitive changes. I have spent a lot of time speaking to groups about my journey through cognitive change because I think education is the best way to combat stigma.

Sharing my story helps people see dementia differently. We are still people with skills and ideas. relationships, personalities, and lives. We need to be included and encouraged, not hidden away. 

Tiffany: If there was one (or a few) pieces of information or wisdom you wish you could impart to everyone, what would it be? 

Ellen Sue: Everyone has differences, and we need to see those differences as normal and celebrate them. Everyone deserves to be treated with respect and dignity. For me, the most important part of that is inclusion. But my definition of inclusion is not simply having a group and inviting someone into it. Real inclusion means that everyone has equal roles, equal responsibilities, and an equal voice.

People living with cognitive change need to be involved in the conversations and decisions that affect them. That includes research, programs, services, and anything else being developed for our community. These things should be created with us, not just for us.

I have had the wonderful experience of working in research as a co-researcher on studies at Yale University. That has shown me how meaningful it is when people with lived experience are treated as partners, not just participants.

Tiffany: What is a difficulty in your life with dementia that you wish more people were aware of? 

Ellen Sue: I’ve already mentioned that it takes me longer to process information . Reading books is impossible now, I can’t follow the story line or characters anymore so short reads are the most I can handle. I also have a very difficult time sequencing. In cooking a meal, for example, there are so many steps that must be coordinated. And it comes up in other situations too. I get lost easily, even in familiar places.  I cannot keep my calendar straight and miss appointments.

I need people to speak slowly and clearly. If I am in a meeting, I need each topic completed, not have people interrupt each other, and be sure what was discussed is understood before moving on. When things move too quickly or jump around, I get lost and tune out. Large social events can also become overwhelming. And I get distracted and overwhelmed in restaurants with big screens everywhere.

One thing I want people to understand is that I only have so much cognitive energy in a day. Every task, every conversation, and every decision uses some of that energy. Once it is used up, I am done for the day. Some people call that energy “spoons.” By late afternoon, I am usually out of spoons.

Tiffany: What is your favorite thing about life today? 

Ellen Sue: The best thing about my life today is my partner, Mark. He is incredibly supportive and understanding, and he has helped me recognize that living with dementia has brought positive changes into our life. Mark does not finish my sentences—unless I want him to.  If I become angry or confused, he asks whether I want to be heard, helped, hugged, or have some space. It is a system that works well for us. He is very patient and provides me with the opportunity to express what I need. 

At some point, you realize dementia is not going to go away, so you learn to roll with the changes. I have integrated dementia into my life and into my being, but I am not identified by it. It informs my life, but it does not define me. By accepting it as part of who I am, I can continue doing the things I love to do.

One of those things is talking to people about living well with dementia. I want people to understand that life is made up of many journeys, and dementia is another one. We are on this journey together.

When I tell people I have dementia, they usually say, “Oh, I’m so sorry.” And I say, “Well, I’m not, so you don’t need to be!” Of course, I do not go around advertising it, but I share it with people when I feel they need to know.

One of the sayings that is important to me is, “Nothing about us, everything with us.  It connects to what I said earlier about inclusion. If you do not give people agency, respect, and inclusion, then you are missing the valuable contributions we can offer. When everyone is not included, your perspective becomes narrow and full of bias. 

We want dementia to be seen as and treated like a disability instead of a disease, so that legislation would give people greater access to support and resources at both the state and federal levels. It could also help strengthen research funding, which is already very limited.

Dementia is not a single diagnosis. It is a broad term used to describe many different diseases and conditions that involve cognitive changes, including but not limited to, Alzheimer’s disease, vascular dementia, frontotemporal dementia, Lewy Body, traumatic brain injury, and Parkinson’s disease.

I prefer the term cognitive changes because it is a continuum. Dementia is a static term. Cognitive changes affect everyone differently. It affects different parts of the brain, and each person experiences different changes and deficits. If you have met one person with cognitive changes, you have met one person with possibly one or more cognitive changes.

Tiffany: I didn’t know that, thank you for teaching me. 

Ellen Sue: Well, of course–that’s what I’m here for!

Tiffany: What is a day in the life of Ellen Sue like?

Ellen Sue: I spend the day working on my orchids. Orchids are quite easy to raise, despite their difficult reputation. I like to buy the ones that are wilting, the ones nobody wants. People do not always understand that no matter what condition they may look like they are in, they will always bloom. So I take them home, baby them for a while, and then they bloom fully and beautifully. I also like to name my orchids after inspiring women. I have one named Frida Kahlo and one named Maya Angelou. 

I am often in zoom meetings working on research projects, developing classes at LiveWell, writing my personal story or sitting on my deck enjoying a short read.

On other days, I play Mah Jong with friends, go to class, attend meetings, and spend the day at LiveWell in Plantsville, CT. I might go for a walk and I love pampering myself by getting my nails done.

Tiffany: Finally, is there anything that you would like to add to conclude? 

Ellen Sue: My conclusion would be that people with cognitive change need inclusion. We need to be an integral part of everything, especially anything that is done with us in mind.

We do not want people to simply do things for us, because doing something “for” us is infantilizing us. People with cognitive changes are not reverting to children.  We are adults with life experiences which enrich everything we are involved in.

We also do not want to be included just as a token person in a group. We want to be part of the whole process from the beginning. We want to be seen as valuable, capable, and equal contributors.

Ellen Sue Moses is on the Editorial Board of Perspectives 2.0. Tiffany Zhang is a co-facilitator of Perspectives 2.0