REMEMBERING TO FORGET

 

by Donna McBride

I remember drawing pictures in grade school that ended up on the refrigerator, no matter how ugly they really were. As a teenager, I tried other ways to score some points with my mom so I could stay out late on Saturday night. And as I moved into my twenties, I just wanted to gain her admiration and respect.

DonnaMcBride

My mom (known to most as Mama Tess) said something recently that brought a flood of childhood memories back. She looked down at her hands and replied, “Look at these wrinkly old hands.” All she saw were the wrinkles. I saw the hands of a wise, proud, hard-working woman.


I grew up in West Virginia, where my own grandparents didn’t have running water until my mom helped equip their old farmhouse with indoor plumbing. My dad died at 34 years old, leaving my mom with three kids (5, 10 and 12 years old). I’m sure, at times, she wanted to give up. But she didn’t.

Instead, she taught me about having values, respect and working hard. She inspired me to volunteer and share our blessings with people not as fortunate as we were. She wouldn’t let me feel sorry for myself because I didn’t have a dad like the other kids. She made me work hard to earn my allowance. I had chores, was grounded when I did wrong and had to study for my grades. But most of all, she never made me feel like I was a burden to her. Ever.

Fast-forward a few decades. I moved to Arizona, got married and started a family of my own. Mama Tess ended up coming out as a “snowbird” for several years until she realized the snow was for the birds and made Arizona her permanent home.

There is no any secret lotion that will remove the wrinkles from her hands or face. And I admit, I’m glad. It reflects the woman that I’ve loved my whole life. Every day of my life she has been there for me – good and bad. Those hands tell a story of working in the garden, cleaning up after me when I was sick and helping me when I was learning how to be a mom to my own two sons.

The wrinkles on her face remind me of those smiles she shared with me, the frowns I deserved a “few times” along the way and the kindness she shared with others. Mama Tess was an independent woman before most people realized it was possible.

There’s no getting around the fact that Mama Tess is aging. I knew a few years ago something was going on, but couldn’t quite figure it out. But then it hit me faster than a dust storm in the desert coming out of nowhere. She had made the trip between Casa Grande and Florence hundreds of times. But one day, something went terribly wrong. She got lost. The fear in her voice was as severe as the fear in my heart of not knowing where she was. She called me and kept saying, “Just come find me.” I felt helpless.

I kept calm as I had her tell me about her surroundings, street signs…anything I could think of. After several tries and too many agonizing minutes, I took off and found her sitting in a hospital parking lot in Queen Creek. But the woman I found was not my mother. The dazed look and frazzled state was that of a stranger. After locking up her car, I took her to her appointment with plans to pick her up when she was done. I remember going back to my office, shutting my door and crying. Trying to soften my sobs behind closed doors, I knew it was time.

A few weeks later, medical tests told the story. We had Dementia. I say “we” because I am on this journey with her. Even when she doesn’t understand, when she doesn’t remember, I do. It is a family disease.

I immediately jumped into action to “fix it.” I scaled back on my own activities to give more time to her. I tried organizing her life with calendars, reminders of appointments, pill boxes with timers. Looking back now, I think I did more damage than good, especially for our relationship. I wasn’t thinking like her daughter, but instead a caregiver. In trying to fix things, I only made more stress for us both. I was losing her, and as selfish as it sounds, losing a bit of myself too.

I needed help. And I found it at the Pinal-Gila Council for Senior Citizens (PGCSC). They are a local nonprofit agency that develops community resources to address the unmet needs of the elderly and seniors. They offer a variety of services and resources. I had driven by their office almost daily to and from work. I remember pulling into the parking lot and sitting there for a long time, willing myself to get out of the car. Putting one foot in front of the other, I made my way to the door. Opening that door was one of the hardest things I have ever done. It was finally admitting I needed help – that I wasn’t in control and had failed Mama Tess.

What I found was understanding, warmth and hope with staffer Carol Wilson. She equipped me with good, solid information on Dementia, resources for patients and caregivers as well as local support groups. For the first time in nearly two years, I felt I wasn’t alone. Just as important, I didn’t feel like I failed my mom.

Not long after that, I attended a support group. I expected to find a room full of depressed people, but instead I found people laughing, having a few private conversations and the welcoming smile of Carol. I didn’t talk that day. I listened. I heard some of the same struggles, anger, guilt and even some funny stories about dealing with their loved ones. Between the support group and resource information, I learned that we need to work together to make things easier for her to remember. We now try to keep her on a schedule that eases anxiety. I learned, as a caregiver, I am never alone as long there are places like PGCSC.

Mama Tess just celebrated her 80th birthday. Still living independently, but no longer driving, she realizes she can’t do all the things she used to do. She is determined she doesn’t want to be burden to me. It is hard to explain to her that she will never be a burden, ever – just the same way she has tried to convince me over the years that I wasn’t a burden to her. Perhaps it is a moot point trying to convince each other anyway.

There continues to be hectic moments. I get discouraged. She gets angry when she can’t remember. But I keep the attitude that “every day is a new day.” I cannot let Dementia define her…or me. On her good days, she is spunky and fun to be with. On her bad days, I look at her beautiful wrinkles and let them take me back to a time where I remember good times. I know it will never get better, just different.

I will continue to make mistakes as I love her and care for her, but I am always thankful that she is my Mama Tess. And nothing will erase that memory.