Dementia Decision Making: Love leads the way

Never give up. Never stop fighting.

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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 Alex’s story below and her mother Alicia’s story here.

 

My grandmother has 6 kids and raised them in Ecuador, Colombia, and the United States. Her husband, my grandpa, passed away when I was really young. Since then, she has spent most of her time with her 6 kids and 14 grandkids. She split her time between countries, living in Maryland for 6 months and then in her apartment in Quito, Ecuador, for the other 6 months.

 

I’ve always loved my grandma, but when I entered high school, she and I grew much closer. She stayed every other weekend at our house, and we watched chick flicks, played board games, and baked together for countless hours. She was and is the light of my life.

 

In 2017, though, Grandma  began to struggle with her memory and experienced mood swings that we couldn’t explain. She was diagnosed with Alzheimer’s Disease in the early part of 2019. Eventually, we realized that she needed a companion with her 24/7, and in August of 2019, we decided to move her into the senior living community where I was working.

 

At first, Grandma seemed happy there. Every morning, she would come downstairs to visit me at the reception desk, and it would make my day. We ate lunch together every day, and when I got off of work, I would spend at least an hour with her. 

 

By the end of August, though, her dementia began to worsen. She had anxiety attacks and breakdowns, begging us to take her back to Ecuador. Worse, she got angry, throwing temper tantrums and crying hysterically. She accused us of locking her up in this place and told us repeatedly that she wanted to die. It was a terrible time for us. 

 

I would try so hard to make her happy, but she wouldn’t cheer up. It was almost as if there was another person in her body. It pained me so much to see her hurting like she was, and I was so relieved when she later began to enjoy being there at  the senior living home again. 

 

Of course, nothing stays the same forever. I had to head back to college in Ohio at the end of summer, which was a hard move for me to make because I knew I was going to miss her very much. Then, in January 2020, Grandma moved back to Ecuador, and the pandemic changed everything. 

 

When Quito went into lockdown for quarantine, none of our family members in Ecuador were allowed to visit her. She had less social interaction and started to struggle again, becoming more confused about where she was, constantly asking us to take her back to Ecuador. 

 

It has been so hard to be so far away from her. I call her every other day—she’s happy some days, but other days, it’s as if she’s stuck in a hole of depression. Sometimes when I call her, she sobs, asking me to take her back to Ecuador. She can’t always process that she actually is  in Ecuador, though we repeatedly assure her that she is. It hurts to see her like that. 

 

It hurts not being able to visit her due to COVID.

 

Recently, though, when I’ve called her, she’s been doing better, which means that I am doing better, as well.  I hope to visit her when COVID isn’t as bad. My grandma is such a huge part of my life, and I miss her so much.  It hurts to not see her every day as I did last summer, but I know Ecuador is her home — that’s where she wants to be, so that’s what I want for her, too, because I love her.  

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