While dementia may change someone’s personality and behavior, it’s important to remember that people living with dementia are still regular people. They are individuals with their own stories; they have feelings and are still highly conscious of the world around them. One woman shedding light on the inner lives of people living with frontotemporal dementia is Janice Swink, a wife, mother, music lover, and frontotemporal dementia warrior from Louisville, Kentucky.
Her short narratives of her day-to-day experiences with dementia on Twitter give a voice to those undergoing the same struggles.
Facing FTD
Living with frontotemporal dementia (FTD) began for Janice when she started showing symptoms at 62 years old.
“I started losing my balance, and my depth perception was way off. I also started having trouble getting my words out,” she shared. Janice immediately went to their family doctor for advice, and to her shock, she learned she might have early-onset dementia.
Later that week, while on a trip to Walmart with her husband Eric, she stepped out of the store and suddenly had no idea where they were. She decided to give up driving on that same day.
After consulting with two different neurologists, Janice was confirmed to have FTD, shortly after her 63rd birthday in 2015.
Janice’s reports of her daily experiences with dementia show the difficult side of the disease. Simple tasks like getting a glass of water can make her feel exhausted. Some days, she might lose her sense of self and forget who she is.
One of the most difficult parts of living with frontotemporal dementia, Janice says, is apathy.
“I feel totally empty inside. It’s like I know I should show happiness or sadness, but I can only act like that is what I’m feeling,” she said. “When we had to have one of our fur babies put down, I felt nothing inside. I knew I had to feel sadness and grief, but all I had inside was emptiness.”
The good fight
While dementia has taken a toll on her mind and body, Janice refuses to let it defeat her. Rather, she uses her experiences to tell the story of her life with dementia and finds ways to make things fun and add sparkle wherever she goes.
Janice takes her purple walker or medical scooter whenever she’s outside. The various ornaments that line her devices make them hard to miss. You’ll see stuffed animals, purple ribbons, and small tags bearing the words “Dementia Awareness”.
Strangers passing by would often give her compliments for it. She would always take the opportunity to educate them about dementia. “Because of my walker, I am able to educate people in person. I love that I can spread more awareness about dementia!”, Janice wrote on social media.
On Twitter, Janice shares stories that are real, raw, and honest. When she’s not sharing thoughts on mental health and her daily struggles with FTD, she would talk about her enjoyment of everyday things, like sharing a meal with her husband Eric, conversations with her family, or her admiration for the colorful birds frequenting their yard.
Janice also once went viral when she posted her dancing videos on Twitter, which have been viewed tens of thousands of times. While her condition is currently preventing her from dancing, her love for music has not wavered a bit.
“There’s something magical when I hear songs from when I grew up! It is being proven how those of us with dementia respond to ‘our’ music,” she shared in a tweet.
Enduring love
Eric is Janice’s steadfast partner and primary caregiver, and has stayed by her side throughout her journey with FTD.
The couple met on an online dating site in October 2010. They were married in September 2011, four years before Janice’s diagnosis.
“I was very independent until I received my diagnosis in 2015,” she shared. Since then, Eric took on most of the household responsibilities, including cooking, doing the groceries, and driving.
Going through the ups and downs of living with frontotemporal dementia takes a lot of work, Janice says. “You both will have to learn to laugh, cry and hold each other. We have gone through some very scary times with my behaviors, memory, physical problems, and the fact I was handed a terminal diagnosis.”
There are no regrets in their relationship; only love. Eric once told Janice after her diagnosis, “Even if I knew that you would have frontotemporal dementia, that wouldn’t have stopped me from marrying you.”
Eric’s support goes above and beyond the day-to-day. He also educates others and fights for change in the way people with dementia are treated.
Recently, he has spoken with health insurance companies to expand their understanding of how dementia affects people, so that they may receive adequate care. “My sweet Eric is a true champion for me and others with dementia,” Janice tweeted.
The dementia warrior
Through her advocacy, Janice hopes to dispel the many misunderstandings and misconceptions surrounding dementia.
“We still need love and physical touch. Don’t ignore us. Also, don’t tell us that we don’t see what we see when we hallucinate, because they are very real to us,” she said. “Don’t think we are doing things on purpose to annoy you. We might ask the same question over and over because we can’t remember we have already asked you multiple times.”
The worst thing that others can do, she says, is to invalidate their experience of dementia. “Stop telling us that we do not look like we have dementia. And please don’t tell us that you also ‘forget things all the time’ — this does not compare at all to our experience,” she said.
Connecting and understanding
For others living with frontotemporal dementia or who think they might be experiencing FTD, Janice says it’s important to do a lot of research and seek a second opinion. It took Janice and Eric a visit to a second neurologist before she received the diagnosis that matched what she was going through mentally and physically.
“Many of us with frontotemporal dementia have undergone neuropsychological testing. However, we are often told that we are just depressed. Many of the tests and tools used to diagnose us are actually geared for Alzheimer’s Disease and not FTD,” she shared.
Janice also encourages people living with FTD to connect with others online. “Post about your experiences on social media, or join a support group on Facebook. Telling others about what you are going through helps a lot, and your story will resonate with like-minded people.”
How to help people living with FTD
Like Janice, people living with frontotemporal dementia and their caregivers can find daily happiness in exercises – mental and physical – that keep them engaged and active. Joygage offers a wide selection of research-backed entertainment and activities, curated especially for people living with dementia.
Learn more by visiting Joygage’s website, or by downloading the Joygage app on the Play Store today.