There can be joy in sharing life with a loved one who lives with dementia. Moments of happiness can be found in acts as simple as brushing your loved one’s hair, giggling over old photographs, dancing to music from years gone by. Contentment may be as simple as having a good day, discovering a food that your loved one enjoys or hearing a song that sparks a memory.
The truth is, dementia caregiving is difficult in the best of times, and we often find ourselves forced to make choices that we don’t want to make. Some are small decisions that further limit the freedom of our loved ones (like taking away your father’s car keys). Some are bigger decisions that upend their lives, like changing where and how they live. None of our decisions are easily made, and all are made with love at the forefront.
The COVID-19 pandemic complicates things even further, separating us from loved ones who find themselves isolated and confused. Finding ways to connect is vital to them and to us. Alexandra Heishman, a Gloria’s Way volunteer, and Alicia Heishman, her mother, describe this dilemma of love and pain and persistence in their blogs for Gloria’s Way. You’ll find Alicia’s’s story below and her daughter Alex’s story here.
I have always been very close to my parents, both of whom were born in Ecuador. My siblings and I, also very close, were raised in three different countries. We’ve always loved our parents and each other. That love continues, but Dad’s death almost 14 years ago from Idiopathic Pulmonary Disease, followed by Mom’s subsequent struggles with dementia, changed everything.
After my dad died in 2006, Mom spent more time traveling and more time at her home in Ecuador. She would travel there twice a year and was very independent. We missed her during her months in Ecuador, but we were happy for her, too.
Around 3 years ago, though, we started noticing alarming changes in her temperament. She would become upset and claim that some of her belongings were missing. Her moods became inexplicably changeable, sometimes up and sometimes down, for no apparent reason. These changes worried us, so we arranged for someone to live with her on weekdays. To cover weekends, the four of us siblings who lived in the area took turns having her stay with us.
Ultimately, our efforts weren’t enough. Last year, we could see that Mom had become very anxious and sometimes even paranoid. To make matters worse, going up and down the stairs in her house became more challenging for her. Home no longer seemed the best place for her to live.
In August, 2019, we helped Mom move to a senior living community, accompanied by her companion. Her apartment was beautiful, and staff members were kind and helpful. We hoped so much that she would be happy living there.
Culturally, though, it was hard for my mom to adapt. She seemed unable to embrace her life in the senior community and begged to go back to Ecuador. She was often upset, and her angry outbursts at me were especially heartbreaking because I had always been her “go to person,” not someone at whom she lashed out.
It was hard, as well, to contemplate having her live so far away from me. I was used to seeing her 5 times a week,and I didn’t want to lose those days with her. But I love my mother and wanted to respect her wishes. I wanted to help her be as happy as possible.
So in January, 2020, we flew her to Ecuador with a nurse from Ecuador. She transitioned beautifully and was so happy to be in her home. Three nurses cared for her every hour of every day, and a housekeeper took care of the apartment. It seemed as if she would be content.
Then COVID-19 hit, and Mom had to be quarantined in her apartment. My two brothers who live in Quito were not able to visit her, which has been very difficult for her. She’s become very disoriented and much more anxious. All of us do our best to help. The four of us living in the United States video chat with her every other day. My brothers in Ecuador call her daily. It isn’t enough, but we keep calling, keep trying.
It’s so hard to be so far from her. The pandemic makes it even harder. Still, I know that she is in good hands, and that comforts me. I miss her, and my heart hurts without her. But Ecuador will always be home to her. It’s where she needs to be.