When Norma said, “I think I’d like to come along” four years ago, we were both pleased and slightly terrified. We entered our unplanned caregiving-odyssey feeling a bit overwhelmed and under qualified. We also knew, however, that we were probably the best people to provide her with a quality end-of-life experience.
As we jumped into our new role, we began to sort out our own priorities. But what were hers? She was not very forthcoming with ideas, and she certainly did not want to be a “burden” to us. We had to figure it out for ourselves. It then dawned on us that maybe we should think about how Norma and most people experience the world.
We began to consider what senses — sight, hearing, smell, touch, taste and touch —were the most important to engage. Would sight be more important than hearing? Smell more than touch? Fortunately, Norma still had all her senses, and our plan was to try to engage as many as we could on a daily basis as we traveled across the country together.
The view of the Grand Canyon at sunrise or a newly-transformed butterfly both yielded wide eyes from Norma. The sound of a gently babbling Colorado stream or the tones of a New Orleans brass band were both music to her ears.
A blooming rose could tickle her sense of smell, and the aromas from any bakery seemed to always draw her wheelchair through the door. The tartness of Key lime pie and the briny bite of raw oysters elicited reactions that let us know that her tastebuds were still good.
Running her hands through Ringo’s soft curls seemed to calm Norma, and it was easy to see that holding her son’s hand provided a sense of comfort and safety. Touching a real moon rock was just plain exciting.
Although these sensuous encounters allowed Norma to experience the world around her, it occurred to us that there are other “senses” — perhaps more important ones — to be engaged.
What about the sense of dignity? Everyone has the human desire to be treated as something of value, even at the age of 91, and we always tried to honor that. And when her dignity seemed to be fading, Norma taught us that a sense of humor can be helpful.
A sense of purpose is certainly important to most people, and Norma was quick to grab needle and thread to mend a torn garment or peel apples for a pie to demonstrate this need.
A lightweight, ergonomic wheelchair and her trusty sidekick, Ringo, gave Norma a sense of freedom. A beauty shop visit for a nice perm or a visit to The National WWII Museum equally yielded a sense of pride.
And of course, we were all up for fostering a sense of joy!
As her caregivers, it was essential to lose the sense of control, guilt, and frustration that we sometimes clung to when things were not going well — something we are sure that many other caregivers can relate to.
Norma chose quality over quantity for her end-of-life journey, and by engaging all of her senses we were able to help her achieve that. This is something that any caregiver can do on a daily basis in their own environment — not everybody can or wants to go on a road trip like Norma.
Caregiving is hard, and it is oftentimes difficult to see life’s simple joys while in the midst of it. Stimulating your loved one’s senses purposefully can be helpful for everyone involved. What may have started as a sense of obligation eventually allowed us to tap into a sense of creativity, purpose, adventure and connection.
Recognizing that caregiving is one of the greatest honors someone can be entrusted with, we are now left with only a sense of gratitude.
How do you define quality of life?
Get the conversation started:
The Conversation Project - Dedicated to helping people talk about their wishes for end-of-life care.
Aging With Dignity - Advance care planning tools for you and your loved ones.
Share your experiences and learn from other caregivers in our Facebook group, Miss Norma’s Caregivers Retreat. Join the conversation by clicking here.