A pain that is seldom understood or discussed is the pain of the family and friends who must grieve the lives of those living with dementia. Our loved ones are physically here with us, but their spirits and all of the little things that add up to make them unique, have gone away. Instead, the person remaining is one who can hardly remember those who once made their lives full. Where there was once a human so full of life, there is now the fractured vessel left behind. This is the reality for anyone with a loved one suffering from dementia.
When I was relatively young, my grandmother was diagnosed with dementia. After my parents broke the news to me, I thought a lot about what this would mean. How would things change? I knew she had been a bit forgetful and distrustful; however, I assumed these were normal things that came with aging. I was relatively unaware of the heartbreak that comes with watching a loved one’s mind decline in front of you.
My grandma was always the type of person to try to see the best in anyone she interacted with in her life. Even when someone would be less than kind to her, she would simply say “they must be having a tough time.” She was highly intellectual and had a quick, witty sense of humor. Her love for life translated into art—a passion she passed onto her children and grandchildren alike. There was no one I looked forward to showing my latest artwork to more than her. Her positivity and warmth brought joy to everyone around her.
Eventually, that positivity began to fade as she became more suspicious and irritable towards those around her. As things progressed, we moved her to a dementia care facility and then eventually into skilled nursing care provided at St. John’s Home. We felt that by that point professionals were better equipped to take care of her than we could on our own. Thankfully, we were soon impressed by the extreme compassion shown to her by the staff.
At this time, there was still a glimmer of recognition in her eyes as she knew we were important to her, but she could not always remember why. I became referred to as, “the little one” and my sister was now known as, “the other one”. My grandma rarely said much by this point. For most of her life she had been the chattiest in the room, but by this stage she would mostly listen and observe. Just being around us seemed to make her happy.
Visits became difficult. Of course you always want to be there for your loved one, but it was hard to connect the person sitting in front of me with the memories I had of my silly, vibrant grandmother from just a few years prior. I knew she would not have wanted to be remembered in that state of mind.
She passed in August of 2020. It happened so suddenly that no one from our family was able to be there in time. As awful as it seems, I felt relieved when my mom called with the news. I knew the person she once was had mostly faded away by this point. It felt like I had been holding my breath for years watching her stray further from herself and I could finally breath knowing she was at peace. I could finally grieve.
Now after months of healing I remember her for the person she was prior to dementia. I think back to the times she would jokingly smack my hand for making a devilish comment or when we would play cards in the sunshine and smile knowing she lived a full, happy life. We remember the person she was throughout her life, not just for how it ended. My grandma lived a life overflowing with unconditional love. Her family and friends have been forever impacted by the compassion and unwavering kindness she showed to everyone she met. That is what I will remember.
For those struggling to cope with a loved one suffering from dementia—know you are not alone. Over 6 million Americans are living with dementia according to the Alzheimer’s Association Facts and Figures. I encourage you to seek out those who have been through similar experiences, whether that be another family member or a local support group in order to work through those feelings in a healthy way. Embrace moments of clarity with your loved ones while they are around and appreciate them for who they are in every stage of their life.
Devin Andrieu, Marketing Coordinator at St. Johns, granddaughter of former St. John’s Home resident.