Dementia- A disease that affects the brain of one but breaks the hearts of many

Remembering my mother-in-law and how she made me feel like part of the family

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget.

• Arundhati Roy, The Cost of Living

I’m not about to pretend I’m the only one who’s lost a loved one, but for me, the pain’s still fresh, and writing is one of the ways I process pain. Having just been initiated into a fraternity I never asked to join, I think I can speak for and to a large portion of that membership.

Since dementia claimed my mother-in-law on Thanksgiving night, I’ve spoken with many people who have similar stories to tell. To a person, they’ve been kind, sympathetic, and understanding. We’ve all traveled the same road, though perhaps not in the same manner. The details may differ, and maybe the things that stand out hit in different ways, but the story writ large is the same, and it invariably and finally ends the same way.

It’s been good for me to talk to others who’ve traveled similar paths and to hear about their experiences. I know I’m not the only person to have this experience, but it’s still been good to compare notes, especially in light of what the past year has been like.

This past weekend, I went on a guy’s weekend trip with six friends to a condo in Government Camp, OR, just below Mount Hood. I almost decided not to go at the last minute. I felt so emotionally drained after realizing how heavy life had felt for the past few months, particularly over the past 4-5 weeks. I wasn’t sure I was up for it.

Thankfully, I decided to go, and it turned out to be the best decision I could’ve made. While our trips are normally a chance to leave the wives behind, be slovenly, drink excessively (I don’t, but everyone else makes up for my relative sobriety), watch too much soccer, and generally indulge, we do talk about things when times call for it- this weekend called for it. I needed to talk- quite a lot, actually- because I hadn’t allowed myself the opportunity.

It was one of those times when I was grateful to be reminded that there are people in my life who care about me. They were there for me when I needed someone to listen, and unlike most of the times when we’re together, we weren’t bullshitting one another from start to finish.

For months, everything had been about my wife and her family, which was precisely as it needed to be. The family matriarch had gradually disappeared over the past two years, her memory stolen by a disease that knows no cure and shows no mercy. It had been a terrible time, and I’d done all I could to be as supportive and loving as possible.

During that time, I barely thought about my state of mind. Perhaps that felt selfish at a time when I didn’t believe any of the focus should be on me. I wasn’t the one losing my mother, after all. There was enough pain and loss to be dealt with on Erin’s part, and I wasn’t about to add to that.

Once her mother passed, though, it finally hit me, and harder than I thought it would. I felt close to Barb; she was fun and easy to talk to. She always inquired after my family, and she’d been the one to make sure that I felt like part of the family when Erin first introduced me. I never forgot that, and when I think of Barb now, I think of a Maya Angelou quote:

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Barb was many things to many people, and while I could describe that to you in considerable detail, I think that’s best left to the obituary written by her husband, Gregg. I wouldn’t normally share something so private, but since this went into the Longview (WA) Daily News today, I think I can safely say that privacy isn’t a primary concern.

Besides, it’s a beautiful thing that deserves a broad audience.

This is how I’m choosing to remember Barb. The person dementia left behind was still Barb, but the disease robbed her of the ability to communicate with and love us as she had before. And she was full of love, like few people I’d ever known.

I knew her for only the last 12 years of her life, but for most of that time, she was the “fun-haver” we’ll all remember her as. Her memory issues would begin to be apparent within about 3 1/2 years after I met her, but even after Barb became aware of what was happening to her, she was always smiling and trying to make the best of things. Perhaps things may have been different in her more private moments, but around her family, she did the best she could to enjoy the life we shared.

I don’t want to write about my mother-in-law as if she was a “victim” of dementia. Yes, dementia claimed her life, but she would never want to be thought of as a victim. She didn’t do victimhood, and she didn’t tolerate that mindset in her children or grandchildren. If I’d tried to play that card, she probably would’ve kicked my butt, as well.

Erin’s holding up pretty well, all things considered. She misses her mother, but more than anything, she’s relieved that Barb’s finally at peace. I think that holds for the family as a whole; we’re sad but relieved her suffering is over. The final few weeks were painful and unpleasant for everyone, but they had to be awful for Barb.

We’ll have her memorial on Dec. 30th; by then, I think most of us will be in a frame of mind more attuned to laughing than crying. At least, that’s the hope. I don’t believe Barb would’ve wanted a somber end-of-life memorial.

There’s one thing I do know- there will be no shortage of good memories, and I suspect I’m not the only one who will never forget how Barb Myklebust made them feel. There will be a lot of that going around.

She was the best mother-in-law a man could ask for, and I miss her, but I’m going to do it with a smile on my face and in my heart.

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