If you’ve come here directly without a link from post entitled The Interaction of Religious Beliefs and Caregiving, I urge you to go back there and read that page to give this post some context.
I come from a very close family. We moved a lot, but for a large part of my childhood, my grandparents lived either with us or very close by. Even when it meant moving to another state. After my grandfather passed away, we started to see symptoms of dementia in my grandmother. Her refrigerator was full of expired food. She forgot to eat. She forgot to clean. For the first few years, she was still okay on her own, as my parents lived just a block away and spent most of the day with her.
My grandmother’s illness
Eventually she started getting confused about where she was. I was in college at the time, and single, so I moved in with her to help. My mom watched her most of the day while I was in school or out with friends, and I watched her at night and helped cook and clean. After about six months, we realized she really needed 24-hour care. My mom moved her into their house. The disease progressed very slowly. My grandmother lived with my parents for nine years before they finally put her in a nursing home after a bad fall. She lived with dementia for over 13 years before she finally passed away.
After college, I worked with people with special needs for a while, and finally ended up working in dementia care. I started as a volunteer and worked my way up to department director for a large facility. I loved working with people with dementia. Every day was a fresh start. Sometimes every hour, or every minute. The work was very hard, but very rewarding. But I knew there was a difference for my mom. I could leave and go home at the end of my day, but my mom couldn’t. She never took a break from caring for my grandmother. Her world revolved around keeping my grandmother safe.
What is your life situation?
But my world revolved around change. With close to thirty residents to oversee, the dying process was something I dealt with a lot. I got to know many hospice nurses very well, and learned a lot from them. A huge part of my job was being there for grieving family members before and during death. And I know it might sound odd, but I found peace in the dying process. Helping families grieve, guiding them, and providing support for them and the resident was the by far the most meaningful part of my work. This is the time when people feel most lost. Often, it’s the first time someone has dealt with a loss from dementia. They have no one to guide them. They don’t know what to expect. Every death is different. And every family has a different set of beliefs that are important to them.
Do you have a religious belief? How did you come to your beliefs?
My family was always conservative Christian. My grandfather had been a minister his whole career. Growing up, the church was a huge part of our lives; the church and nature. I had always taken comfort in the belief that people were either saved or not saved. They accepted Jesus as their savior, or they didn’t. Life was very black and white. And I liked that.
Did your belief play a significant role in your life before the crisis?
But as I got older, I met a wider variety of people. I realized that some people who were ‘sinners’ were still very good people. And some people who were ‘saved’ were very cruel. The idea that being Christian wasn’t associated with being a good person was extremely difficult for me to comprehend. So for about fifteen years I took refuge in nature instead of church, and became pagan. But eventually, as I experienced more of life, and more of the cruelty of people, I realized that no spirit, whether God or nature, had ever answered any call for help or assisted me through life’s struggles. The fact that I survived everything I went through and had a successful career was completely due to my own hard work and determination. So I began to identify as an Atheist. Specifically, a Secular Humanist; which just means that while I don’t believe in any anything spiritual, I believe that people are important, and that they should be a priority.
Did the onset of the crisis cause a disturbance in your belief?
Most people are religious. So working with people who are dying and supporting them and their families through the process required that I set aside my own lack of belief (and any skepticism I might have felt) so that I could fully be present with them during their spiritual practices. I was asked many times to lead a prayer, and even to lead a meditation to contact the unconscious, dying family member’s spirit. I never hesitated. My beliefs were irrelevant. The family and resident needed comfort, and that’s what I gave.
What emotions did you feel in regards to your belief and the impact of the disease?
The more deaths I experienced, and the more families I helped, the more convinced I became that there was no afterlife. And I found that belief incredibly freeing. If there is no such thing as the afterlife, it means that the most important thing, in fact, the only thing that matters is how we live this life, right now. The choices we make today. The love and kindness we give today. The idea that I have no legacy apart from the life I am living and the people I am helping is incredibly empowering.
Each person with dementia who died left a legacy of their own, no matter what religion they believed in. Some left loving families who strove to follow their example. Others left impacts in the business or art world. Some fought for equal rights and won. Others fought wars and won. And unfortunately, some left the world little better for their absence.
Did the disease raise any questions or doubts?
I think everyone has their version of what reality means to them. I have heard many stories of seeing, hearing, or sensing a loved one after their passing, many from people I trust and admire. In fact, during the first death I witnessed, I saw a shape leave the woman and fly out the door saying, “huh, the world is just going right on without me” before vanishing. It only lasted a second. And recent science advancements actually show that our essences may indeed be preserved in energy form, but for a very brief period of time after death.
Instead of believing that dementia is somehow a test from God, I found comfort in believing that is simply an unexplained, terminal illness. One that cannot by cured by medicine, prayer, colloidal silver, coconut oil, or any other method currently known to us. It is fatal. And that’s part of why the grief lasts so long for us. Because we can’t do anything.
Losing my grandmother
I cried many times in the years before my grandmother’s death. I didn’t want to lose her. And I knew it would devastate my mother. But when the call finally came that she was close, I felt calm. I had witnessed over a dozen deaths, and I knew my grandmother and mother well. I had a plan. When I reached the nursing home, my mother was frantic. I put on my best calm voice and I pulled up another chair. I had a playlist saved on my phone that I played often during people’s final hours. It was calming, almost meditative music. I checked my grandmother’s breathing, skin, and pulse.
My mother wanted reassurance more than anything. I told that her yes, it was very close, and that the best thing we could do was to make my grandmother feel that it was okay to let go. I had my mother take some deep breaths, and held my grandmother’s hand in my left hand, and my mother’s in my right. My mother held my hand and my grandmother’s hand too, creating a circle. Then I asked my mother what her favorite memory of my grandmother was. She started talking, and I continued to prompt her, asking more questions about the story. It was only a few minutes before my grandmother stopped breathing.
Did you ever wish your beliefs had been different? How have you dealt with these doubts?
I did wish, for a little while, that our souls lived on a little longer. It is pleasant to think that we will see the people we love again. It is comforting. It helps us be a little less scared of death. And sometimes, I did feel a little empty believing that my grandmother was just gone.
Did the initial reaction persist? Did your beliefs change?
But the idea that we would not live our lives to the fullest, not follow our dreams, and forget our passions because we were counting on the rewards of an afterlife seemed too much of a risk to take.
Did youe beliefs/organization/community/friends/fellow believers provide support? Or did you have to go without support?
I was not part of an Atheist community. I’m not even sure there is an Atheist community. People are very different. Just because they share one belief doesn’t mean they have anything else in common. Most of the support I needed came from friends and coworkers. And the hospice chaplain helped my mother, even following up with her a year later. She was very grateful for that.
Have your beliefs changed? Are they more or less intense? Are you more moderate or devout?
The intensity of my beliefs has changed since that experience. I am more sure now than ever before that there is no such thing as the soul or the afterlife, and that our only purpose is to live the life we want to live and be the person we want to be. I believe firmly that the only thing that matters is if we leave the world a little brighter for our presence, that we create a happy memory for others. Because the only way we will live on, is through our work and through how we make others feel. There is no reward I’m looking forward to. I am determined to live a life I will be proud of.
And that is my legacy.