I met David and Anne in 2015.
As a couple they “re-met” at their 20th high school reunion, married the following year, and raised two boys. They loved to dance together, and were outgoing and active members of our community. Although Anne suffered with mild cognitive impairment, she was able to visit with neighbors and attend community meetings.
But David knew her condition was worsening.
Anne started getting lost in the bathroom in the middle of the night. And when she took Bella, their Portuguese Water dog, for a walk, David relied on Bella to bring Anne home. The doctors confirmed his worst fears. Anne had Alzheimer’s disease.
David became a caregiver for his wife.
To hide his grief from Anne, he would often sit in the car and cry. Used to doing everything together, Anne’s confusion made it difficult to cook or socialize with friends. Neighbors helped by sitting with Anne while David stole a moment for himself for a bicycle ride or a hike in the foothills.
David joined a spousal caregiving group, which focused on the caregiver’s needs, rather than the patient’s, and included time for sharing as well as companionship with others in the same situation.
Anne’s illness progressed quickly.
David hired aides to help with her care. He did what he could to keep her safe such as installing bolts high up on the exterior doors to prevent her from wandering. Over time David realized that Anne needed more care than he could provide and thus placed her in a nursing facility not too far from their home.
Like many Alzheimer patients, she had a difficult time adjusting to the constant noise and activities. Every evening David visited Anne for several hours. They took walks in the gardens and danced to their favorite music. She often asked to go home.
David didn’t think she remembered home, so one evening he said to her: “Finish this sentence for me. Home is…” She replied, “The silence of the atmosphere.”
With the COVID-19 shutdown, David now relies on phone calls and FaceTime to communicate with Anne. On occasion he realizes that Anne is not responding to him, but rather, thinks she is speaking to her brother.
Due to social isolation, Anne’s behavior has become difficult to manage. As restrictions have eased up, the nursing facility staff have asked David to come in to help redirect Anne’s aberrant behavior.
David has been grateful to be allowed to hold Anne in his arms and simply sway.
Both husband and wife have gotten what they needed.
For a caregiver, a practice of gratitude can help relieve the stress of the day.
Tips for keeping yourself and your relationship healthy.
Spousal caregiving can be a deeply meaningful and beautiful experience. It can provide you a feeling of purpose and bring you both closer in unexpected ways.
It also comes with challenges.
The old ways of being a couple, even in the most well-adjusted relationships, will eventually change. You may find you can longer socialize with other couples, share a meal, or travel as you once did.
Finding a new, healthy “normal” is both vital and possible.
These tips can help navigate the way:
Practice daily self-care: Commit to a sacred pocket of self-care every day— a cup of tea, a call to a friend, some time in nature, or making your favorite lunch. Doing one thing a day just for you can help you to re-energize and fill your caregiving well.
Create new ways to bond: Shared interests may need to be replaced by new ones to accommodate your partner’s declining abilities. Sharing memories, quietly holding hands, or reading a favorite book aloud to your partner are ways to create connection and intimacy. Get creative and find things that speak to your uniqueness as a couple.
Find emotional support: Talking to others about your relationship may feel like a betrayal. Yet, as fear, resentment and grief are common emotions to experience, it’s important to have a healthy outlet. Find a confidant or support group that allows you to explore (and vent) your feelings. Practicing gratitude can help to release negative emotions and make room for positive ones as well.
Caring for the Caregiver: The Spousal Caregivers’ Journey Video
Well Spouse Association Resources
10 tips for Spousal Family Caregivers
Practice Gratitude – A Network for Grateful Living