Grief, and What I Learned from Losing my Grandfather to Alzheimer’s

My grandpa died Sunday night, on May 16, 2021. He was 80 years old. 

Everyone in our family had been told that he had been having trouble breathing starting early in the day and he wasn’t eating, and as the day progressed, it became clear he didn’t have long. I received word the following morning that he had passed, hearing that it had been peaceful. It has been a difficult moment to process, and these words have come through the subsequent time of mourning, grieving, reconciliation, and celebrating his life over the past week. I’m sure there is much more to process, and far more than I can and am choosing to say. But this is part of the process.

My grandpa had been dying for a while. There were a few times over the past couple years when we all thought he didn’t have long. Each time he rallied, but this time was different. As hard as those years had been, it meant that our family had already begun to have those hard conversations that inevitably come when a dear loved one passes, or is near the end of their life. 

My grandfather had been battling with Alzheimer’s for more than a decade, and was in the drastically advanced stages in the last few years of his life. Early on, it was small things that we would notice. He would have bouts of confusion, lack of clarity, forget where he was. He would become muddled, but more often than not he was coherent and still the same man we all loved. Then as time passed, more and more slipped away. He knew he had Alzheimer’s, and most of the time when he experienced forgetfulness or confusion, he could recognize what was going on. I can’t imagine what it was like to know that your brain was dying and slowly, day by day, your memories were fading. I can’t imagine living while knowing that there would be a day coming when you couldn’t even recognize that you were losing your memories.

As we knew his Alzheimer’s was progressing, I made sure to spend more significant time with him. I was significantly impacted by the passing of my other grandpa in 2004. I was only nine at the time, and completely unprepared and nowhere near mature enough to know how to properly understand what was going on around me. Even though I was only nine, I wrestled for years with the guilt of wondering if I should have done things differently then. During that time, my grandpa had been diagnosed with pancreatic cancer, and had battled it for years. His passing was more sudden, after he had rebounded and we thought had beaten cancer. 

The guilt I felt, and still wrestle with to a degree, from not spending more time with my other grandpa while he was sick has completely changed my outlook on life, and especially the shortness of it. Whether or not I should have done things differently doesn’t matter. It’s the past, and dwelling on it changes nothing. But it can inform how I live the rest of my life. So when we knew that while my grandfather wasn’t dying, we knew Alzheimer’s could potentially take him from us sooner than death might. 

I knew I didn’t want to have any lingering doubts, any regrets, about how I spent my time with any of the people I love, especially my grandfather following his diagnosis. Whenever we would travel to visit him and my grandmother, most of my time was spent just sitting with him listening to his stories. He loved his stories, and he told them often. As the years went on, he would often forget parts of the stories, or not realize he had finished telling the story, and would start again from the beginning. He was happy to share his stories, simply because we were listening. 

I tried to cherish those moments I shared with him, whether it was in a big group as a family, or just the two of us. Most of the time he was fully lucid, but as years passed there were more and more times where he was not. Those moments when he really broke through, he was as sharp as a tack and bright as a flash bulb. Those are the memories I hold of him. That’s how I remember my grandpa. 

Over the years, his memories of my cousins and me vanished. Then the memories of his son- and daughters-in-law. Then those of his children faded. Initially he forgot who they were, but he knew they were someone to him, that they mattered. Eventually, even that faded. Once he was moved into a facility with dedicated caretakers, my grandmother continued to visit him every day. She shared meals with him, her time, and her love all through those hard years. And while I don’t know, I like to imagine that when there were days when he couldn’t recognize her, he always knew her. 

As he faded, his Alzheimer’s first taking his mental faculties and then his body slowly deteriorating as it progressed, my grandfather was moved to a care facility as he deteriorated more severely. Our family was able to have a very difficult, but honest discussion about our time together and our time with him. Especially for my cousins and I, knowing that he no longer recognized us, and that he was comfortable and well taken care of, that there was no obligation for any of us to visit or spend time with him. He didn’t know us, those memories had long faded at that point, and sometimes having too many people around would distress him. We knew he was happy, and that us being there couldn’t bring him back, as difficult as that was. 

I remember the last time I saw him in person. He was in a care home with a staff dedicated to his well-being, after my grandmother had been caring for him on her own at their home for years as he struggled with the disease. That day was when he had no memory of me. We didn’t crowd him, and I only watched from a distance most of the time. He had become distressed more and more when there was too much going on around him that he couldn’t recognize or understand. That was past the time when he could remember he had Alzheimer’s. After that, it was updates on his health, or hearing about my father going to visit him, even after he no longer recognized him. 

So I don’t have many memories of him when he was just the physical body that carried him these past several years. Even though it was the vessel, it wasn’t him. We had lost the man we all loved slowly, piece by piece, over many years. And so, our mourning has taken place over years.

So how then do you grieve someone who has been dying for years? How do you grieve the same person who has slowly been fading for even longer, losing the aspects and memories that make them who they are? How do you grieve, knowing that it was no longer the person you knew and loved, that they were gone? And yet, at the same time they were still there, physically, their earthly vessel remained. So how do you process that?

When my grandfather passed, there was a torrent of emotions. Grief. Sorrow. Peace. Mercy. Relief? There was a finality in the moment, especially significant because this has been a process for our family for years, and it brought permission for us all to grieve in its entirety. There was a gut wrenching relief at the mercy of his passing, knowing that he was no longer bound by a dying mind and a failing body. The body was not him, but it was. It wasn’t really the man I knew, but it still brought intense sorrow and mourning with his death. The man whose stories I had listened to had faded years ago, but this week I mourned anew. I mourn for the man whose experiences and stories I have not been able to experience for years, whose wisdom cannot be imparted to any of us anymore. I celebrate his life, and looking at his life I can see that he really lived. So I will mourn, and remember, and celebrate the man he was, and look forward to the day when we are all reunited.

When I heard that he had passed, my thoughts were flooded with memories of him and the stories he shared. He loved telling and retelling stories, and I remember that those were the things that endured. He told stories before and after developing Alzheimer’s, and many of them became familiar as the disease progressed, but it only served to highlight their significance. He told stories about his time growing up in Canada, joining the Navy as a young man, and then being a missionary in China. He would tell us about his different experiences from their time living in Brazil and then returning to Canada. He would tell stories of the friends he met abroad, of family at home, of travel and life and love. There was always joy in his stories, even the hard ones. Living alongside the poor in Brazil and serving them, I’m sure there were awful things they saw. But the stories always had a spark of hope, a bit of joy. Every single one. 

The stories were one of the last things to go for him. Even when his memories of family began to fade, certain stories of his remained very clear. The stories weren’t always factual, but I think they were all true. True to him, they were a sign of who and what he was. He was a servant, who gave of himself freely with no expectation of return nor desire to ever be recognized for what he did, whether it was his time in the Navy, serving as a missionary or chaplain, or even his time volunteering at Habitat for Humanity long after he retired. Not everyone serves in Brazil with their wife to give of themselves in the slums and favelas of Sao Paulo, Brazil before having to flee the country for being Christian during the rule of the military junta. Later, he went and served as a chaplain in a hospital for years and years, giving of himself to the people who were hurting the most, questioning, and mourning whatever they were going through. Many of those experiences made their way into the stories he would tell us. 

Stories are the heart of who we are, what we have done, where we have gone, and who we have loved. Stories are the things that stay with us, because they indicate a deeper connection to something more meaningful. Stories of love, belonging, and purpose spark serotonin dumps in our brain, while stories of regret, shame, and loss endure for the hope of being better. My grandfather’s stories were of good people, of hard choices for the right reasons, and always putting others first. He always put others first, from the poorest of the favelas who had likely never been served before, the people he got to bless through Habitat for Humanity, to the family he and my grandmother got to host when families would gather under their roof. 

His stories always echoed of the potential to be better. Not for him, not in a self-aggrandizing manner. But that we, as bearers of the image of God, all have the potential to be and create goodness. That’s what I’ll remember from his stories, whether they were examples of that light from his own life through his giving and his work, or simply through the joy and meaningfulness of the life he lived and the people he lived it with, is that goodness can be found everywhere. And if it isn’t apparent, shine your own light and bring it to others so that they too can see it.


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