In March 2008, doctors diagnosed Karen with mild cognitive impairment (or MCI) — which is a slight, but noticeable decline in cognitive abilities, such as memory and thinking skills. According to the Alzheimer’s Association, MCI increases the risk of developing dementia. Karen’s doctor at the time, Dr. Jeffrey Gray, wrote in her medical records that “some 50% of patients with MCI go on to develop more of a dementia of the Alzheimer’s type.”
When Karen was diagnosed with MCI, she started keeping a journal to document her journey, hopeful it would help future generations. The journal begins in August 2008 and ends in October 2009 when Karen — who Ed says was “a smart lady” who could read people within minutes of meeting them — was finding it increasingly difficult to remember and write her thoughts.
“I know I am in the early stages of Alzheimer’s. I suspected it 6-8 months ago ... Not only was I forgetting, I was losing my vocabulary and if talking about a happening, I would lose my thought.” —Part of Karen’s journal entry on Aug. 6, 2008
Alzheimer’s disease is the most common type of dementia and gradually worsens over time. It affects memory, thinking and behavior. The Alzheimer’s Association estimates 5.5 million Americans were living with Alzheimer’s in 2017, almost two-thirds of whom were women.
It’s important to note that Karen was never specifically diagnosed with Alzheimer’s (dementia and Alzheimer’s are often used interchangeably outside of the medical world), but her symptoms did gradually worsen over time. In 2012, Dr. Gray noted in Karen’s medical records more of a decline in short-term memory as well as language deficits. He said her symptoms were “more consistent with a degenerative type of dementia.”
Ed tries to coax Karen into rising from the bed to bathe. When giving Karen a sponge bath, Ed wears medical gloves for hygiene reasons. Karen also needs assistance to use the bathroom due to incontinence. “It’s a terrible, terrible disease. It deprives you of life," Ed said about dementia. "It deprives you of your personality. It deprives you of just taking care of yourself."
Ed retired from Indiana Furniture in 2013 so he could be home full-time to take care of his wife.
In 2016, nearly 16 million family members and friends provided more than 18 billion hours of unpaid care to those with Alzheimer’s and other dementias, the Alzheimer’s Association estimates.
While Ed doesn’t take his role as caregiver lightly, it took him some time to accept his wife’s prognosis.
“Eddie had a very hard time wanting to accept it. He will not discuss it or mention it. He’s too scared to this day. However, early in the year, he would get upset every time I forget or whatever. I had to tell him, ‘I can’t take it anymore.’ That period was the worst period of our marriage. He was too scared and too worried.” —Part of Karen’s journal entry on Aug. 6, 2008
Ed remembers his frustration and says he even battled some depression at the start of Karen’s dementia. He’s never been one to like change.
“I can’t look back (to) then, I have to look at where I’m at today...,” he says. “Because (I) didn’t know what was going on.”
In her journal, Karen talks about her mind going blank, her head pulsating, short- and long-term memory loss, speech problems, weight loss, among other things.
She mentions praying to God and putting herself in his hands. The Youngs have always done that — put themselves in God’s hands.
When Ed was 59, he was diagnosed with prostate cancer and Karen — who once taught religious education classes at St. Joseph Catholic Church and volunteered with Stephen Ministry — was by his side every step of the way. She’s the one who found the surgeon who was able to rid Ed’s body of the cancer and send him into remission.
“I bargained with him (God),” Ed says. “I said, ‘I got a lot of things to do yet.’ And he said, ‘Yeah, you don’t know what all you’re going to have to do yet...I’ll fix you.’”
God knew Karen was going to need him.
That Monday in early January, Ed follows Karen from their room. She slowly walks to the front door and peers out across Jasper’s Mill Street. Ed then follows her to the back door where Karen also peers out.
With Ed supporting her as she walks, Karen peers out the back door.
“Sometimes if we have to get her ready for a doctor’s appointment or something, we would try to get her going, but otherwise, we let her do her thing,” Ed says. “We get into her world and let her make decisions when she’s ready. She can cope with it better than making her do things.”
Karen is ready to get dressed and prepare for the day ahead. Ed is alone with her that day, as he is every Monday and most mornings. A caregiver with Home Instead Senior Care helps with Karen during the day on Tuesday and Thursday through Sunday. The Youngs’ daughter, Dede Britzman, cares for her mom through Home Instead on Wednesday.
Ed takes Karen into the bathroom and helps her use the restroom (she has incontinence), sponge bathes her and brushes her teeth. He then dresses her.
Throughout the process, Karen screams out in defiance, but Ed never raises his voice.
“It was hard for me at first when she would scream and holler,” Ed says. “I don’t think she recognizes me as her husband doing it (helping her).”