A loved one’s dementia diagnosis teaches us about peace, strength, dreams and reality

My husband was just officially diagnosed with dementia, and since then, I have learned some things.

I’ve learned about the sensation of receiving a diagnosis which confirmed what we already knew, but that hearing it out loud took my breath away.

I’ve learned about enacting powers of attorney and about incontinence, as well as how to lift someone twice my weight from the floor without breaking myself. Also, what calms as well as comforts him and what comforts me.

I’ve learned how not to curse back when he curses me, how to take care of things one minute at a time. And how to breathe in that minute.

I’ve grasped how keeping our home tidy keeps my mind in a good place, even when it’s only me here, as I’m making sudden legal and financial decisions alone, without my partner.

And how to do this while preparing for a wedding a year overdue, how to have a joyous celebration in spite of everything, and especially how to lose a husband as our daughter gains one.

I’ve learned that silver linings are real — they weren’t making that up — and about the power of family support, family reconnections, what is actually at the top of the important list and how to keep it there.

I’ve realized how easy it is to purchase a car with an expired license when one has no business getting into a car or driving it off the lot. How to manage red tape and pay taxes on a car I didn’t buy.

It’s wild that I voted as a legislator to update a law that I now have to use to protect myself.

Importantly, I’ve realized I’m finally old enough to drink bourbon. Alone, without caring a hoot what anyone thinks.

I’m mastering what being strong actually means. What to say when people tell me I’m strong and I’m actually not strong but they think I am and then how to pretend that I’m strong.

I have watched medical staff have endless compassion, patience and grace, which I’m desperately trying to model.

I’ve learned how to walk out of a hospital room, knowing it was the right time for me to just walk out, that I didn’t have to say anything or worry about being judged.

I’ve learned that I can’t stand the phrase “I’m sorry” but that yes, I say it too.

I’ve learned how to let go with tears in my regular hospital parking spot and how to gain my composure, however it long it takes, before walking into a grocery store.

I am learning how to take deep breaths without hyperventilating and how to recognize others who are also in pain because many are in this same wobbly boat.

I’m remembering to put me sometimes first, remembering to eat something and realizing that I can’t handle seeing other family members sad.

I’ve learned how to be open with myself and with the kids, and what being maternal really means.

I’ve learned how to watch the kids mature, grieve and accept stages of life when I can’t get a handle on it myself. With them, I’ve learned about how my body miraculously never runs out of tears.

Through the sadness, I managed to push joy up front, to be part of my little girl’s wedding as she unites with the love of her life.

I’ve learned how a roomful of love can envelope and warm and protect.

I learned not to look at anyone as I walked her — alone — down the aisle, fearful of losing control. That I could revel in her ceremony, focusing on every single detail of her wedding as I did every single detail of her birth. And watch with tearful joy as she experienced the same emotions with her mate that I did at my own wedding.

I’ve learned about hopes and dreams amid reality, watching our daughter begin her wedded life with her father absent.

I’ve learned I can find the right words to describe my many years of marriage and how to remember those good and fun times when days are dark and sad. I’ve learned the reality of mourning the partner

I’ve already lost and how to care for the one who is still here.

I’m still grasping physical suffering when it’s cloaked in belligerence, obscenities and the inability to follow medical orders. I’m learning about addiction and memory loss and compassion and all of it rolled together, whatever that word is.

I’m realizing how it’s odd to be alone but that it will be OK to be alone.

I will eventually learn I’ll be OK in the next days and weeks. I will, right?

The sun will rise and my potted sunflowers and tomatoes will bloom, damn it. Life will carry on. And I’ll continue to believe in it.

Stacey Newman, a former Missouri state representative, is the executive director of ProgressWomen, a statewide group focused on justice and equality issues.

This story was originally published July 18, 2021 at 5:00 AM with the headline "A loved one’s dementia diagnosis teaches us about peace, strength, dreams and reality."