“There is just such a silence. If you turn on the TV or the radio it just forces more of a silence.” Reflects Mary Lee Fulkerson, an expert on the lived experience of Dementia in Nevada, about her experience with the pandemic. “I don’t interact with that well. I get depressed watching the news so I just quit watching it. I can’t help, I can’t do anything. Which is awful because I have always done things.”
Mary’s experience echoes the helplessness and loneliness of this time of pandemic. “ I have always gone to protests and wrote letters to the editor and campaigned for the rights of people and all of that is gone, I can’t do that…And that makes it more lonely, a new awareness of what is impossible. It is just the stillness I think I can just feel my brain not engaging. I can just feel it. I can feel the weight of it in there.”
This pandemic has separated us all from each other. Forced physical distancing increases isolation. While we as a world grapple with this, there is a group of people with more experience than most who we can learn from. People living with dementia.
Nevada CAN Builds Reciprocal Relationships
There is a tendency to separate and segregate people living with dementia from mainstream society. Because of this, many people living with dementia have already mastered the challenges currently imposed on us alas we practice physical distancing. The NEST Collaborative, part of the Nevada COVID-19 Aging Network (Nevada CAN) rapid response, is drawing on this wisdom while offering supportive services. They are connecting elders with younger volunteers in reciprocal relationships. The Dementia Engagement, Education and Research (DEER) Program at the University of Nevada, Reno provides a home base for this statewide effort, supported by more than 30 aging and social service organizations.
“The NEST Collaborative aims to combat loneliness by providing free, volunteer-hosted, virtual social support opportunities,” DEER Program Director Dr. Jennifer Carson explains. “We keep the same volunteers with the same elders over time in an effort to foster authentic relationships and trust. It’s not just about what our volunteers can do for elders, but what elders can do for our volunteers and for each other!”
The focus on reciprocity in The NEST Collaborative comes from a deep belief in the value of dementia. Dr. Carson and her partners believe dementia offers wisdom on how to live well at any point in life. This becomes even more poignant during a pandemic.
NEST is an acronym for Nevada Ensures Support Together, and underpinning this collaborative effort is a commitment to create reciprocal relationships and support the important roles that elders play in their communities. This started with the creation of the Nevada CAN website and the development of the NEST Collaborative programs. Dr. Jennifer Carson and her partners sought counsel from self-advocates, people living with dementia who advocate for themselves and others. This counsel ensures the resources are accessible, inclusive and engaging. Staying true to the homage “nothing about us, without us”. The NEST Collaborative fosters mutual support through this pandemic and beyond.
“The way that Jennifer did the Nevada CAN I think this will be something that will continue…this bridge that everybody has a story to tell and all you have to do is listen to them.” Says Chuck McClatchey, one of the experts living with dementia Dr. Carson worked with.
“Over the years, people living with dementia have taught me so much about how to live a meaningful life focused on the present and on relationships.”, shares Dr. Carson. “They have influenced my journey to becoming more of a human being than a human doing. The NEST Collaborative provides an opportunity for our volunteers to also tap into the rich resource that elders provide. They have a lot of life experience to share, including wisdom about how to live well amid adversity.”
Dementia Can Help Us During This Pandemic
Throughout the pandemic things we all took for granted have been taken away. This experience, unfortunately, is something those living with dementia are all too familiar with. “Anything that happens to someone living with dementia is like 10 fold to the normal person, because we are already dealing with a lot of anxiety and frustration and fear and anger, all of those different emotions.” shares Chuck. “Then when something more is taken away from you where you don’t have the freedom, you can’t just go to the store or enjoy a walk in the mall or even going to dinner we cannot do that. It has been a lot tougher.”
Systemic isolation and discrimination make the effects of the pandemic more acute for those living with dementia. The flip side of this? Those living with dementia have more experience with what all of us are facing right now. If we choose to listen and engage in reciprocal relationships, like those The NEST Collaborative and other like-minded organizations are forging, we can all live a little better in this challenging time.
“Okay, I Want To Do This. How Can I Do This?”
The 2020 we all planned for is a fantasy that will never materialize. This experience, of a planned future that will never be, is common with a dementia diagnosis. “I was only 61, when diagnosed, I thought I still had years and years to work and then retire and play and this and that. When all of that is taken away from you, you kind of have to rebuild yourself.”
After diagnosis, Chuck focused on what was possible. “You have to have the mentality of ‘okay I want to do this how can I do this’ and not the mentality of ‘oh well I really shouldn’t do that so I won’t.’ I think that same mentality can help people going through it now. You don’t want to hurt anybody or spread the virus or anything like this but if you take that attitude you will be receptive to more.”
The bottom line? Rather than focusing on what you can’t do, focus on how you can still do what you want. For example, you want to see your family and you can’t in person but you can on Zoom. “It really makes you understand the importance of being able to do things you want to do and what happens when those things are taken away from you which is something people with dementia deal with everyday.” explains Chuck.
Not only can we improve our quality of life with this perspective, but we can grow our empathy for those living with dementia as well. “It [the pandemic] kind of gives a touch as to why we [people living with dementia] react sometimes the way we do,” shares Chuck, “you know with, sometimes it is anger and frustration and people do not realize what it is like. You get a taste with the fear with everything from the pandemic right now.”
Be Here Now
The future is extremely uncertain, focusing on this can send even the most grounded person on an anxiety spiral. Focusing on the moment and what is here and what is possible offers a respite from worry. “I went on a long walk this morning. When you have dementia you can’t think about the past. Well you can but there is not much of it left and it is shrinking. And then the future, its, with this pandemic and everything, there is no controlling the future and so you are right here. I am right here with you.” shares Mary Lee Fulkerson, another advisor for Nevada CAN and The NEST Collaborative.
Besides focusing on what we can do, Mary teaches us how dementia has shifted the way she sees the world. And how that helps right now. “I notice that when I go for walks I listen to that wind blowing through the leaves of the trees and the leaves are such a beautiful green and the blossoms and the little birds cheeping. And I think how could anyone put on those things [points to ears to indicate headphones] while they are walking because it is so beautiful out there. That has been good for me…There is a pleasure and a richness that you do not get otherwise, I never did before [living with dementia]…That’s major. I wish I could have that and then go back to the way things were because I would probably be more appreciative of the things people do and of everything, that’s big…Nature never stops, the rest of our lives have but nature never stops.”
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