Virginia and Keith Laken open up about Virginia's experience with mild cognitive impairment.

Silence ‘doesn’t serve us well’


(2/12/2018)

by CHRIS ROGERS

Virginia Laken was angry. Her family had confronted her with their concerns. She did not want to hear it.

But Laken knew something was not right. Lately, she found herself unable to remember the names of people she had known for decades. What was her daughter’s mother-in-law’s last name? It was the same as her daughter and her grandchildren. “How can I not know this?” Laken asked herself.

When someone brought her flowers at a family gathering, Virginia graciously accepted them, and tried to play off what happened next in her home of many years. “I was trying to remember where we keep our vases, and I was just quietly opening cupboards,” she said. Her son gently approached her to help.

Another day, Laken went to see a play at Winona State University. Getting lost on campus is one thing, but for anyone who has ever visited Winona, the campus itself is hard to miss. It is a 23-block edifice in the middle of a small town. Yet Laken, who has been to the university countless times, found herself driving all over in search of it. She wound up by the river somehow. “Are you kidding me?” she thought. How could she not remember? Laken put her back to the water, and struck out southward. The campus was somewhere that way, she knew. “That really shook me,” Laken said.

Two years ago, Laken was diagnosed with mild cognitive impairment (MCI). The Mayo Clinic defines MCI as “an intermediate stage between the expected cognitive decline of normal aging and the more serious decline of dementia.” People may forget names or appointments, they may lose things, and they may have trouble with judgment, but unlike Alzheimer’s, people with MCI usually retain their personality and are often still able to carry out daily activities, according to the Mayo Clinic and the National Institutes of Health. These experts say that MCI puts people at greater risk for developing dementia or Alzheimer’s, but that does not always happen and sometimes people with MCI get better. Nobody can tell Laken what is going to happen down the road.

Deciding not to drive was a big deal. “It’s that independence and the spontaneity that I don’t have anymore,” Laken explained. Laken’s husband, Keith Laken, said she is sometimes reluctant to ask him for rides. She does not want to impose. “It makes you feel vulnerable and not capable,” Virginia stated.

It is not Virginia’s fault that she has MCI, but she still felt a lot of shame. To explain, she pointed to her career. She has a master’s degree in business, she ran a business consultancy for years, launched a successful business with her son-in-law, and served on many boards. “Those are all losses,” she stated. Like many, Laken’s sense of self worth was wrapped up in how capable she was. Keith explained, “Virginia has always been the caregiver in our family — a super caregiver for anyone in our family who was sick or needed support.” He added, “The reality is, our roles have changed.” She still is capable, astute, and articulate — she is writing a blog about her MCI journey, for example — but a week later, she might not remember that she met with a business partner. “I’m concerned that I’m going to embarrass myself, and that I’m going to look foolish,” she said.

Virginia is nervous about this story. She and Keith are exceptionally open to talking about things that most people are not. They honored her mother’s wish to die in their home on Christmas Eve — a beautiful way to go, Virginia said — they witnessed the home birth of one of their grandchildren, and in 2002, they published a book about the impotence Keith suffered after surgery on prostate cancer and how they regained intimacy in their marriage. Still, admitting that she has MCI to her small town might be harder than talking about their sex life with a national audience, Virginia said.

For many, admitting memory problems to anyone is difficult. When the Lakens attended a support group for people with MCI at the Mayo Clinic, they were the only ones in the group who told their children about their MCI. Virginia can remember a time when some people would not tell anyone that they had cancer. People talked about it in a whisper.

The news was just too bad. For Laken, admitting her diagnosis was difficult, but once the people close to her knew, she felt like a weight was lifted. She did not have to try to hide it anymore. She is going a step further by sharing it publicly now. “Whatever people think, they’ll think,” she stated.

“I was embarrassed, and I was ashamed, and I didn’t want anyone to know,” Virginia said. “And then I got to thinking about it — it’s another topic that people don’t talk about openly. Sex and mental health aren’t things people talk about openly, and that doesn’t get us anywhere.”

It is not easy, but people with memory problems and other mental health conditions should share their stories, Virginia believes. “It’s really important to me that we talk so we understand the variety of mental conditions,” she stated. “It needs to come from the people who have the condition,” Virginia added. “If people with these conditions don’t talk about it, then it gets talked about in — not abstract terms — but maybe clinical terms or unfeeling terms,” she explained. Virginia and Keith’s book about intimacy after impotence was snapped up by national health experts because nobody else was sharing their experience, the couple said. They wrote it, in part, because they had such a hard time finding first-hand advice themselves. “If people don’t talk about these things that are so important, how do people learn how to cope?” Virginia said.

Virginia is quick to stress that her experience is not the experience of everyone with MCI, and it is not the same experience as people with dementia or people with Alzheimer’s. There are common threads, but also a great diversity of what happens to people and how they experience it. “This is just my story,” she said.

“[Stories] validate our emotions and our experience. You read a story and think, ‘That’s just how I feel.’ … It just makes you feel not so alone,” Virginia said. She added, “When we keep things silent, it doesn’t serve us well.”

Virginia blogs about MCI, aging, and intimacy at http://virginialaken.com.

Chris@winonapost.com

 

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