I was a family caregiver for over ten years as my mother moved slowly through the stages of Alzheimer’s disease. As most baby boomers do, I jumped online to become educated about this horrible disease as soon as we heard her diagnosis.
I found many ideas about beneficial activities to do with loved ones in the early and middle stages of Alzheimer’s disease, but found very little written about how to create quality times as they decline and their abilities become much more limited.
As she entered the late stages, in order to figure out how to have meaningful interactions with my mom, I relied on three things – my instincts, my knowledge of her lifelong hobbies and interests, and how I’d want to be treated if I was in her shoes.
My Mindset about Late Stage Alzheimer’s Disease
Because a care recipient’s abilities to process or recall thoughts, walk, and speak diminish greatly, some family caregivers think there is no longer a “real person” left to relate to. I always disagreed with that point of view and continued behaving as if my mom was a full participant in our activities.
Another strong belief I held was that even if she didn’t recall an activity minutes after we finished it, while she was immersed in it her quality of life improved.
Our Activities List
Here are some things I did with my mom to create quality time together when she was in the late stages of Alzheimer’s disease and could no longer walk and hardly speak:
Because she was previously an avid gardener with a green thumb who could make anything grow, I would take her out in her wheelchair to a park near the residential care facility (or board & care) where she lived. As we strolled along the paths, I observed her head turning side-to-side, with her eyes darting everywhere taking in her surroundings. Various clouds in the sky, the seasonal changes of the trees and flowers, and children playing on the swings, slides and other playground equipment always brought definite, although fleeting, smiles to her face.
Arts and Crafts
Mom and I spent many hours during my childhood doing various arts and crafts projects. She was also a Girl Scout leader in charge of weekly arts and crafts for our troop. Her hobbies included oil painting and all needle crafts. She was a fabulous seamstress who could sew anything – with or without a pattern.
She couldn’t manage even the most basic art after a while, so I’d do them with her “help.” For example, while I was creating a collage from magazine clippings, felt, buttons, and other odds and ends, she would watch attentively and reach out to hold the raw materials I was working with. [Note: I was always on guard to be sure no art materials ended up in her mouth.] I believe just being near and observing the creative process was bringing her joy on some level.
Magazines and Photo Albums
Mom was an avid photographer – not in the professional sense, but as a recorder of family events, trips, and special times. During my visits, I would place a large photo album in her lap made from pictures she took. She would slowly look through it (I needed to turn the pages for her), often stroking the photos lightly. Since she couldn’t converse, I would “talk at her,” describing the people and scenes before her, even if she didn’t remember who the family members were. I believe by the tone of my voice and words spoken that she might have grasped, she knew that what she was looking at was somehow significant and special.
I would do the same thing with two of her favorite magazines, “Woman’s Day” and “Better Homes & Gardens.” We would look through them and again she’d “caress” their pages. Decorating and antique hunting were two other lifelong hobbies, so looking through these magazines may have partially fulfilled the desire for those activities she could no longer do.
My mom instilled a love of reading in me, and I read aloud to her until close to her last day on earth because I knew she valued the joy found through books. Even when she couldn’t read the words, she still enjoyed the photographs and illustrations. I bought an over-sized coffee table book with close-up, detailed photographs of beautiful flowers that she looked at (again while stroking the pages) until the book’s binding completely fell apart.
I also shared children’s books that I had fond childhood memories of her reading to me, such as “Horton Hatches the Egg” by Dr. Seuss, “Caps for Sale” by Esphyr Slobodkina and “Goodnight Moon” by Margaret Wise Brown. Sometimes she’d have a bemused expression on her face that seemed to say, “Why are you reading this children’s book to me?” But then she’d fix her eyes back on the pages and never closed the book nor stopped me from reading them to her.
My parents both loved music. We had a piano in the living room I took piano lessons on, they took me to Broadway musicals starting when I was in first grade, and they often played records we’d sing along to at home.
While we weren’t anywhere close to being professional singers, I learned music was a high priority.
While she was living in the care facility, I brought CD’s to play for her based on what holiday was coming up or her favorite songs, such as patriotic themes, Big Band music, and favorite musicals. I’d also sing lullabies to her that she sang to me as a child. During our musical times together, her eyes would sparkle, she’d smile slightly, and nod her head up and down. She was totally engaged!
Even if sometimes one-directional, I truly believe my mom got great happiness from the various activities we’d “do together.” I wouldn’t have missed these special times for anything.
Don’t think because a loved one’s abilities decline as a result of Alzheimer’s disease or dementia, they can’t continue a life filled with sensory richness and beautiful moments in each day. Please give it some thought and try doing some of your loved ones’ favorite things together. See how they respond. They may surprise you with a beautiful gift that’s one of the best parts of family caregiving.
Linda Abbit is the author of The Conscious Caregiver (Adams Media, September 2017), and a family caregiver with twenty-five plus years’ experience. Linda is the founder of Tender Loving Eldercare, an online community that provides information, support, and inspiration for family caregivers. She is a prominent contributor to SeniorPlanet.org, where many of her stories remain in the top thirty articles read on the site. She holds a master’s in education, has worked in the eldercare industry for many years. In 2009, she received the Caregiver of the Year Award by Caregiving.com, and her website was nominated for excellence by Best Senior Living Awards in 2012, 2013, and 2014. Join her online community on Facebook, and follow Linda on Twitter at @LindaAbbit.