Focus on the Possibilities – Inspirational Stores of People Affected by Dementia
by Dawn Wiggins, RPN,
President and Director of Operations of New Dementians Professional Healthcare and PAC Certified Consultant, Trainer, Mentor, and Speaker
Please know that the person living with dementia is not giving you a hard time, they are having a hard time. – Anon
Storytelling is one of our oldest and greatest accomplishments as human beings. Stories can empower, inspire, motivate, and even change lives. Whenever we tell stories about taboo or stigmatized topics, we open up a world of possibilities. A story can bridge a chasm, normalizing the conversation and no longer making it about they and them but rather we and us.
Stories about dementia, and in this case, frontal temporal dementia (FTD), are no different. FTD is under the umbrella of dementia which is not one disease but a term that covers numerous medical conditions. With FTD, some of the brain functions that are affected include the ability to make reasonable, rational, and logical decisions. Impulse control and the ability to weigh options are also affected.
I have a dear friend, affectionately known as Hillbilly Jim, who is currently living with FTD. He is an incredible human who is doing his very best to cope with FTD every day. Hillbilly Jim admits some of his struggles include:
Sometimes I say things in public and the people I’m with tell me I shouldn’t be saying those things.
I get angry sometimes and I yell. I’m told I didn’t think it through before speaking my mind.
I’m not the greatest at remembering time periods and timelines in my life and I often get mixed up as to how recent or how long ago something happened.
Jim’s girlfriend also has a front row seat to the changes that Jim is experiencing and she does her best to support him as his Care Partner. She says,
Schedules can be the straw that breaks the camel’s back. If there is something that we have to get up early to do, it’s almost like he gets obsessed during the night and doesn’t sleep well because he is afraid, he won’t wake up on time. Recently, we had to be in town at nine in the morning to meet someone. The time kept getting pushed back until one o’clock. His brain was so tired by that point that he was almost shut down, which made him irritated and not very nice. It’s difficult to explain this to others so that they are aware and can help make it easier. He tries to hold his frustration in with others. Money wise, if we have it and we go to dinner or anything else he shows agitation when there isn’t any money left to spend. Usually, I just go with the flow because I want him to live his best life with the time he has left. I try to support him as best as possible. He has vocalized to me that what he finds supportive is me helping to make sure he gets enough rest, as well as having a plan, and (unbeknownst to him) me making sure that everything goes as planned.
I share both perspectives from Jim and his girlfriend because Jim still has many abilities and often can appear to function as the same old Jim to others. He has some limitations, but he should not have that held against him or be seen as less than. Once we’re aware of the limitations of a loved one, much like my friend Jim, we can use that as a set of boundaries to play within while continuing to engage the person around the abilities they’ve always had. Cultivating this kind of mindset around a loved one’s different abilities when diagnosed with dementia allows us to approach the person with empathy and curiosity, which, ultimately is how we would want to be treated in a similar situation as well.
Dawn is a Registered Nursing Professional in the province of Ontario and has over 20 years of frontline healthcare experience. She leads a dynamic team of healthcare experts dedicated to one thing, making a positive impact in the lives of people living with dementia and their care partners. Rather than focusing on tasks like most people, Dawn and her team focus on caring and bringing as much joy as possible to the lives of each client, every day. Dawn has served in several different capacities over the years and has a wealth of experience in acute care, long term care, psychiatric care, home care, rehabilitation, and palliative care. She has built and managed world-class dementia care neighborhoods at the institutional level.
Her greatest passion is caring for people living with dementia and their care partners. PAC skills help her have a deep and unique understanding of the disease that allows her to connect with her clients and their families in a very special way.