13 REASONS WHY
I’m grateful for my wife’s dementia
I’m grateful for my wife Janet’s dementia.
Did I just say that? I’m grateful that her mind is failing?
Well, look. You have a problem, you choose how to respond. I choose to appreciate the positives, including how Janet’s condition led us to an inspiring $1 million project for our public library. More about that shortly. First I’ll give specifics about Janet, because dementia follows many different paths.
Something went wrong with her brain well before age 60, on top of what had always been wrong: chronic depression and anxiety. These have long been treated and never held her back. She was an honor student right through grad school; an active church member; a long-time corporate manager; and for going on 15 years, she has been the director of our local public library, her service prized by the board of directors. She is a loving, attentive mother and wife, patient but with high expectations. Until recent years, she handled all of our home finances.
Janet’s dementia has no precipitating event such as concussion or surgery. We do think that stress contributed. Whatever the underlying reasons, Janet no longer forms memories reliably, and she’s lost much of what had been stored: our wedding, graduations, the funerals of her father and mine, trips around the country, wading in the Jordan River with her mother.
Yet I’m grateful for Janet’s dementia.
I’m not glad that she’s forgetting. Memory is not only a comfort in retrieving yesterdays, it’s a personal adviser that guides you places, advises you on established work procedures, and saves you from repeating discussions with your spouse about bank balances, home maintenance, and operating your Kindle. (sigh) Janet’s memory problem is my problem, too.
But you get used to it. Just like you would get used to your partner’s losing a hand, becoming lactose-intolerant, or getting an ugly tattoo. But I am not just accustomed to Janet’s dementia, I’m grateful for it.
I’m grateful for my wife’s dementia because there are upsides. I’m only half-joking. Me: “Dear, you forgot about my burning the pizza? Tracking mud onto your clean floor? Bleaching your favorite sweatshirt? Or that you had a favorite sweatshirt?” Alrighty then. I can work with this.
I’m grateful for my wife’s dementia because it could be something worse. There are harder problems. When I witness someone else’s trial, I often think that Janet and I have it easier. Virtually always.
I’m grateful for my wife’s dementia because it is within a lifetime of blessings. It’s just yellow snow. That’s how I think of it. A blizzard passes and leaves a blanket of white, the sun turning your lawn into a field of diamonds, and one little patch shows that a dog has lifted his leg. You’re going to get upset about that? Why? Look at the diamonds! Forget about the yellow. Piss cannot dissolve diamonds.
Janet and I have diamonds. Our sons and daughters-in-law and granddaughters—three of each—are bright, shining, multi-faceted diamonds. Our house is a short walk from a town square called The Diamond. We love this place. Our neighbors are friendly, our church is here, the boys’ schools are here. They all played baseball here … on diamonds!
We’ve been married 28 years. The 10th anniversary gift is diamond jewelry, so symbolically, we have those diamonds. Not in reality, but symbolically! Soon we’ll have our 30th anniversary, and once again the gift is a diamond. I’m not worried about Janet’s knowing that, because she will forget.
I’m grateful for my wife’s dementia because we can joke about it. Like I just did! I know what I can and can’t joke about with Janet. Never mice. She hates mice and never forgets that. Mice are what I’m taking care not to mention right now. But memory jokes are fine. Laughter helps.
I’m grateful for my wife’s dementia because it gives a reason to spotlight her. I am proud to tell Janet’s story, both present and past. Her response to the disease shows the same spirit that let her ace graduate school in her late forties, earning her Master’s in Library & Information Science in the nation’s earliest wave of online students (also with time on site at the University of Pittsburgh)(But her undergrad is from Penn State, local fans and worldwide alums!). Then she went on to build our new public library building.
Previous and current library buildings
I say that with only slight exaggeration. When Janet became the director of our library, it occupied a 36-year-old building with limited accessibility and no room to grow. The children’s room was in the basement: Safe and clean but windowless. After an exhausting capital campaign and building project lasting 11 years, the Library moved to a beautiful new $2.8 million facility with 80% more space, over double the parking, and complete accessibility—on time, under budget and mortgage-free. Not to take away from the active board and campaign chair, but all day-to-day matters for the campaign flowed through Janet, including every grant application and fundraising mailing. She put in more hours than anyone else to complete the project. She is a hero.
My favorite detail in the finished building is the placement of the interior signs. Janet delegated this to me, and I set them all at her height of 5 foot 1, rather than the standard 5 feet. The signs are one Janet high because in that library, she literally was and is (wait for it) the ruler.
But she is a benevolent ruler and down to earth. I also mean this literally: When the job demands it, Janet gets dirty sweeping, shoveling, or lugging books. In the library booth at outdoor festivals, she sticks it out rain, shine or cold. Then she’ll thaw out, clean up, dry off and go give a talk to the Rotary Club. That is why the library board continued to treasure her after she came out about her dementia.
I’m grateful for my wife’s dementia because of our learnings about it. Is a frightening health condition worth the knowledge that you gain? Well, at least it’s some compensation! It’s enriching to better understand a particular corner of existence.
Now we know up close what dementia can look and feel like. Janet first sensed problems about 9 years into her library career. It began with uncertain thinking that we initially attributed to stress and expected to fade after the building project. But what faded was her memory and other mental functions.
Janet’s first cognitive test with a psychologist was abysmal. She could not repeat back short lists of words or name more than a few items starting with the letter “F.” She had trouble connecting dots using a super-tricky sequence such as 1-A-2-B-3-C. She started forgetting to keep appointments and then forgetting the ones that she did keep. I’d go with her to a doctor visit or a movie, and a week later she would recall nothing about it.
I’m grateful for my wife’s dementia because it brings us unique delights. On one special car trip, Janet gave me a great gift. For three hours, she happily let me recount the entire plot of a long novel that I had written and she had already read. The story was all new to her. (More on that novel shortly.) She also repeatedly watched me perform a one-man play that I wrote, seeing it for the first time five times. The play includes a long poem about her, so that was a handful of nice surprises. I cannot return the same gift. On days when she tells me one story three times, I cut her off.
I’m grateful for my wife’s dementia because it shows her resilience. Janet keeps bouncing back from losses such as no longer being able to drive. This is not only due to concern about confusion, but because she began to have seizures, during which she goes vacant (this is now mostly controlled by medicine). On rare occasions, she blacks out completely and collapses. Doctors tell us that seizures and blackouts are not typical of dementia. This was just bonus neurological fun that confirmed that Janet’s driving days were over.
I’m able to make light of this now, but giving up driving was a blow to Janet’s sense of self. During the weeks after that decision, she lost 25 pounds. A few of those returned. Slowly, she leveled off emotionally. Now she’s a gracious passenger who doesn’t look back.
I’m grateful for my wife’s dementia because it has progressed slowly. This is a bright silver lining. Dementia is taking its time with her, and Janet has been able to keep working. At first, we could not conceive of that. She stayed strong on routine daily matters but became wobbly with people or matters that she encounters infrequently, including long-time acquaintances and operational processes that only arise quarterly or annually. Don’t ask about the circulation desk at the library. Occasionally that duty falls to Janet, and she has to start virtually from scratch, with little understanding of the procedures. With obstacles such as these, how could Janet continue?
She simply came to realize that she could. Completing each day taught her that she could complete each day. Making it through another week, another month, another season … showed her that she could make it through. And not just squeeze by, but continue to help keep the library strong. Her biggest fear is somehow causing harm. It took time to regain our confidence that, even at a fraction of her former self, she was still the best person to run our public library. The board of directors was thrilled to keep her on, and they gladly made accommodation by increasing certain duties of one staff member. At Janet’s request, part of her own salary was transferred to this helpful coworker. It takes lots of sticky note reminders, but Janet is able to keep on keeping on.
I’m grateful for my wife’s dementia because it made us join forces in a new way. Now on most days, I go to work with Janet. I retired early, after 29 years at the same corporation, to pursue a moonshot project with Janet: Raising $1 million for her library. It’s a big challenge that we made all the bigger by aiming to do it with proceeds from my debut novel, the one that Janet read and then forgot. (Well, one of many that she has read and then forgot.) I have been writing forever but have been published only in limited ways: In our local newspaper and some negligible forays into self-publishing. It has long been at the top of my bucket list to make a strong run at building an audience. I should say our bucket list, because Janet also wants me to have more readers. Her condition accelerated our bucket list. Someday became today. We didn’t want to look back and wish we had used time differently.
Aside from raising our sons, Janet and I have worked on nothing more important than this endeavor for our public library. The project is online at www.thisis.red, and we call it “This is RED.” That has multiple meanings.
For one thing, my novel is titled “Red” in Latin: Rubrum. It’s a good long novel, if I do say. I drafted it in 2014 in Facebook posts over 160 consecutive days. Then I set it aside for three years while I created the one-man show that I mentioned, as a way of bidding farewell to my decades-long corporate job. I needed to use art to manage all of my emotions about leaving and to pay my respects. Then during 2018, I reviewed and revised Rubrum once again on Facebook, this time through the entire year: 365 daily posts. This approach gave me objectivity about my own magnus opus. Now I experience it as one my favorite novels written by someone else. I discovered it like a fossil (an analogy from Stephen King’s book On Writing) and simply had the privilege of drawing it from the earth and introducing it to early readers, who received it warmly. Now I have the challenge of turning it into a bestseller to generate income for my wife’s library. This article is meant to help spread the word.
This is RED is a shared calling and destiny for Janet and me. I am now working full-time in my art because of her condition. She made it possible. I would not be pursuing my passion this way unless motivated by love for her and our mutual esteem for books and libraries.
This is the last big thing I want in life. Janet and I hit the jackpot in marriage, family and career. She is giving me my best chance at my final desire: Building an audience for a meaningful book. Her brokenness is making me whole.
I’m grateful for my wife’s dementia because it is making us reach for new connections. I don’t know yet whether I will self-publish Rubrum or find a traditional publisher. Either way, I’m trying to draw attention to the work and connect with readers. Part of this attempt is providing entertainment around the theme “This is RED.” It’s amusing to offer T-shirts and other merchandise printed “This is RED” whether or not the item is red. (See our shirts in the pictures above? You can get yours here.)
Our social media includes a daily graphic that plays with RED as an acronym. Examples: A toddler and his teddy bear have a Respectful, Earnest Discussion … a match is shown in three phases: Roaring, Ember, Dead … the Bible story of Goliath is labeled “Rival Encounters David.” We aim to continue the string of acronyms forever. As of this writing, we have posted 43. See all of them at www.thisis.red or on social media @thisisdotred. The site highlights Rubrum and offers it for pre-order.
Examples of the Daily RED
I’m grateful for my wife’s dementia because it is making her a video star. We are also posting videos on YouTube and on Facebook—15 as of this writing. My big sister Tina insisted that videos are a vital means of telling our story. She was right. Janet and I take pride in depicting our experience. We know that our videos will strike a chord with other dementia patients, caregivers and extended families.
Creating the videos has been one of the best surprises of recent months. Despite being a shy librarian, Janet likes making them. She is relaxed and natural in front of the camera, beaming earnestness and utter lack of guile. I declare her America’s new middle-aged sweetheart. The videos capture why I fell in love with her. I feel more attached than ever.
Meet America’s new middle-aged sweetheart
I’m grateful for my wife’s dementia because it has given us more of each other. I am grateful for our new life. I am grateful I am there in the mornings to make Janet oatmeal and pack her lunch. I am grateful I am there to drive her on errands. I am grateful I am there when she emerges from a seizure or blackout. And conversely, I am grateful that she is there when I look up from my computer at the opposite end of her office, or when I look into her office window when I’m working out on the main library floor.
Don’t get me wrong: This is not continuous bliss. Janet can be a pain in my bliss, and vice-versa. That has always been the case. Even a perfect partner is often the enemy you adore.
But the rough times are only patches of yellow snow. So I’m thankful for them, too.
These are good days. Not easy, but good. Now that I’m retired, money is tight, but that’s not all bad. We have ice cream less but enjoy it more. The work is slow and hard, but that’s also good. When you ache to make progress before it’s too late, everything you do matters. Our life could not be more full of meaning.
Life is better now. Before, I was fitting Janet around my work. Now I am working around her, for her, and with her. Her condition got us here. This is why I’m grateful for my wife’s dementia.
Janet Eldred is a former bookstore executive completing her 15th year as a library director in 2019. Keith Eldred is a writer, designer, marketing professional and long-time library volunteer. Janet has early-stage dementia. She and Keith are aiming to raise $1 million for Janet’s library while she can still contribute. Their website www.thisis.red presents a plan to donate all proceeds from Keith’s debut novel and attract direct contributions.