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March 11, 2013

Continuing Care: Sharing Experiences with Dementia by Blogging

In August 2009, Katie Norris (known as Reverend Katie online) moved from Chicago with her husband and now 8-year-old son into her childhood home with her father and mother. Doctors had recently diagnosed her mother with dementia, and Reverend Katie was eager to help her father, a Kendal at Home member, help care for her mother. 

According to the Alzheimer’s Society, dementia describes a set of symptoms, which include loss of memory, mood changes, and problems with communication and reasoning. Dementia is progressive, which means symptoms will gradually get worse over time. In the later stages of dementia, the person affected will become increasingly dependent on other people. Dementia is not a normal part of aging. 

It’s estimated anywhere between four and five million U.S. adults have some degree of dementia, a sum likely to increase over the next few decades as baby boomers age. And while there’'s no shortage of scholarly articles outlining the basics of the disease, there are few sources that provide personal anecdotes detailing what those caring for a loved one with dementia can expect. 

That’s why Reverend Katie created Moving In With Dementia, a blog where she shares her and her family’s experiences with dementia. 

“Dementia is really isolating,” Reverend Katie says. “I wanted to make a place to go and see what dementia is really like. It’s an outreach for people to understand dementia better and to let them know they aren’t alone in what they’re going through.” 

Reverend Katie’s blog covers everything from her mother’'s recipes and creating art to accepting in-home caregivers and overcoming daily challenges of dementia. One of her most recent (and most popular posts) rationalizes why caregivers cannot leave their loved ones home alone, even when they are sleeping. 

“I just write about whatever is going on,” Reverend Katie says. “In ministry, you write a lot. In some ways, I just think it’s part of who I am and, in a way, it’s helpful for me to blog. It feels like you can actually do something about what you’'re going through. I’'m glad it helps people.” 

Reverend Katie says, on average, she’'s contacted once a week via phone or email by caregivers and children with parents with dementia. 

“I get a lot of phone calls or emails, mostly people asking for advice about things,” she says. “A lot of it is behavioral based. They don’'t really know why something is happening. I remember when my mom had hallucinations; we didn’'t realize that was a part of dementia in the beginning. I refer a lot of them to my dad because you need both of our perspectives. The experience is different for the kid and the partner.” 

Reverend Katie says she’'s most comfortable sitting and talking with her mother. She also says she’'s the one who usually notices if her mother is more agitated or anxious than usual. 

About a year ago, Reverend Katie, her husband, and her son moved from her parent’'s home to a new home just minutes away. In July 2012, Reverend Katie’s mother’'s condition took a turn for the worse

“All of a sudden, mom was bed-bound, couldn’'t walk anymore and couldn’'t feed herself,” Reverend Katie says. “Before, when she was more active, we could watch a movie or do an activity together. Now that she really can’t do a lot, sometimes I’'ll just be reading or talking with her. She will laugh about things still, which is so cute.” 

She continues to outline her mother’'s progression on her blog and on the Carolyn L. Foundation for Brain Health Facebook Page, an organization she and her family began in honor of her mother, reminding her family and readers not to get too caught up in what'’s happening right now, but to remember the good times had. 

“It takes a large community to care for people with dementia, “ Reverend Katie says. “That’s the point of the blog: to reach out to people. If they feel alone, there are people who will help.” 

Check back as we share Reverend Katie’s advice for moving in (and moving out) of parent's’ homes, and subscribe to Reverend Katie’s blog by visiting www.movinginwithdementia.com

Photo Credit: Katie Norris

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