Waking as the sun rose, I turned over and saw that my husband still slept. I felt an appreciation that he was still with me, shadowed by the deep ache of knowing that our days together would end soon. I touched his shoulder lightly and listened to his breath, taking in the moment and remembering when we would lie in bed talking and laughing with each other as we planned our day ahead. 

I knew that when he woke up, it would begin another day of guiding and assisting him with simple tasks and guessing at what he would be asking for if he still had language at his fingertips. 

Frontotemporal dementia had stolen my husband’s ability to speak, understand much of what we said, and the coordination to care for his own hygiene, dress, and navigate a fork to his mouth. We were mired in a rut of decline.

I am well aware of the downward pull that day to day sadness and worry had on my wellbeing, as well as my children’s. All these layers of responsibility to care for a partner who was now completely dependent, our three kids who watched their father vanish bit by bit, and myself. This heaviness of the ongoing journey to my husband’s eventual death led me to moments sitting in the car, parked in the garage, crying and sometimes, screaming. 

There were times that it all felt impossible and incredibly unfair.

After a good outburst, I was better equipped to face the day ahead and searched for lightness to balance things out. At this point, I truly believe that these were the glimmers of joy that helped me through the experience of walking my husband to the end with love. As if deposits for an account from which to draw strength, the gifts scattered throughout the days kept me going. 

I would be grateful to know about your glimmers that buoy you as you walk the path of caring for a loved one too.

My go-tos have been:

• Turning on music and dancing it out. 
• Finding awe in a sunset, a good storm, or even celebrating a new bud on a plant.
• Cherished and funny movies. 
• Soaking up moments that reminded me my husband was still in there. Unable to communicate much, he once looked at me with love and managed, “you look like a person.” It made my day.
• Savoring a home-cooked meal when other tasks took up time to cook. The meals gifted by my mother or friends made all the difference.
• Taking a walk, chatting with a friend, looking at the ocean, reading a book, and let’s get real here – indulging in time to shampoo, condition, and dry my hair.

Shine a light on those wisps of beauty or opportunities to laugh. They are there, waiting to lift you if you look for them. Wishing you days sprinkled with glimmers to refuel and delight you!