"He said no more surgeries and...when he said that that day that was the clearest he had been in the past couple of years."
For Nathan, days after school were spent in the basement of his grandparents’ house, where his grandmother ran a non-profit housing service for mentally disabled adults. Being the first of the family to come to the United States with a working visa and the first to build a business here, she was the matriarch of the family. That’s why, when she grew older, it became difficult for Nathan and his family to figure out ways to care for her. She was still very much inclined to watch over the rest of the family.
Food, for example, is essential to the culture of Nathan's family. It is always a part of the family dynamic, through celebrations, bonding, and is overall an expression of love. While Nathan’s family provided her with food, she made food for them as well. This was one of the things that brought her joy at that point of time. Through this exchange, both sides were able to show that they were here for each other.
Birthdays and holidays were tricky for Nathan and his family, at least when it came to buying presents for the grandmother. “We would ask ‘What do you want?’ and she would always be like ‘Just like your love and your consideration’” Simply their presence in her life and the allowing her to care for them was enough. Nathan recalled a time when he and his relatives scoured the house, looking for appliances that she used the most and were wearing down. They settled on a Keurig. Nathan said, laughing, “She kept using it, so that was a good gift I guess.” Nathan’s grandmother wanted to remain the main caregiver of the family. So it was little things like these gifts that allowed them to show her what her presence means in their lives. Because of how healthy and active she was up until the end, her death felt very sudden. A prominent presence in the family was suddenly gone.
***
The presence of Nathan’s grandfather in his life felt and changed differently compared to that of his grandmother. Rewinding to the previous summer, Nathan was thinking about getting an internship. When the family expressed a need for someone to help take care of the grandfather, he didn’t hesitate to return back home. The internship could wait. Most of the care was divided between him and his aunt, who was a nurse, and they would alternate in twelve-hour shifts. During the hours with his grandfather, Nathan performed the procedures or gave him medication like his aunt taught him. Unlike the grandmother, visits to the hospital were more common and frequent. He had cancer in his bile duct, leading him to need a tube to filter out bile. “Sometimes the thing would move so we would need to go back to the ER for that and then it was like—it was like every other week.” Once they got hospice service, there was no more need for hospital visits. With the family all around and his health very stable, it wasn't until the very end did they get hospice care for him.
Just as his physical condition was gradually wearing down, so was his mind. The dementia, however, was something that started around the time Nathan was in middle school. It wasn't until much later, about five years before his death, did the symptoms start to become more obvious and severe. At that point in the summer, when Nathan was with him, he was barely able to communicate. Even if he could, his thoughts were foggy. Talk between them didn't go beyond performing medical procedures and answering the occasional question.
When I started working at the care and rehabilitation center, I started with assisting activity coordinators and socializing with residents in the dementia wing. While I was there, I was nervous to talk about the past. After all, I had just met these people. I did not know their stories. What if I brought something up that they couldn’t remember? Did they remember what they did yesterday The other volunteers, who were more familiar with the residents, chatted about certain topics, and so I went along with their flow.
I expressed this same concern to the chaplain, who offered me some general guidelines for speaking with people with dementia. For example, instead of asking, “Do you remember?” I could say “I remember,” leading the conversation. That way, I could not expect them to recall anything. If they thought that today was Tuesday and it was actually Friday, I shouldn't tell them they are wrong. Rather, I could go along with the conversation. If there came a point where the talk was not entertaining for the resident anymore, I could let the conversation fade on its own and perhaps start a new topic.
To Nathan's understanding, some of his grandfather’s fogginess could be contributed to the painkillers he was on, not only due to dementia. However, there was a time in which he did speak clearly. There came a point where he needed another surgery because the bag for his bile was getting loose again. Nathan’s family had brought him into the conversation, where he stated his expectations plainly. “‘He said no more surgeries and...when he said that that day, that was the clearest he had been in the past couple of years.” After that conversation, the grandfather proceeded to call his nieces in Texas. From witnessing both events, Nathan could feel that, for the first time in a while, he was very much present. It was like before he had the cancer, when he was taking care of the family.
When Nathan was little, his grandfather was one of his and his two siblings’ best friends. There were times when he would come home from work with candy bars for the children. On free days, he would take them to the community pool, the library, or to play at Chuck E. Cheese. “That was a big one,” Nathan told me fondly, referring to the Chuck E. Cheese.” He also taught Nathan how to play chess. As the kids grew older, their interests started to shift. They no longer wanted to go to the library or Chuck E. Cheese. He and Nathan stopped playing chess. And even if Nathan did play chess, it just didn’t feel the same as before.
That was because, at the same time, their grandpa simply grew quieter, to the point of little communication like he had during his last days. He would watch TV and garden a little, but nothing much more than that. My chaplain told me that a lot of times, people with dementia are afraid of people finding out how much they don’t remember. It’s as if they are no longer the person that they used to be, someone completely different. Maybe that was why Nathan's grandfather was so quiet. I can imagine quiet moments that Nathan spent with his grandfather were difficult. It must have been hard to gauge, as he said, how much that he understood and how he felt at that point in his life. Presence, my chaplain said, doesn't always have to involve verbal communication. Sometimes silent presence is deeply appreciated. Perhaps just having Nathan sitting in the room being in the moment was enough, if not more than enough, for his grandfather.
***
What surprised me about my conversation with Nathan most was how recent all of the events were. His grandfather had passed away that past summer and his grandmother passed away shortly after Christmas. Nathan could see the toll that grief took on his grandmother. He had passed away that July, and she followed suit shortly after Christmastime. Those last few months were difficult for her. “Every single day she would be crying you know in the morning and before she went to sleep she would be crying so I think like part of it was like she grieved herself to death almost you know? Which was unfortunate but I think she’s in a better place now because you know she’s so sad.”
When I asked Nathan if he had any advice for others going through this experienced, he said, “I’m not really sure because, I guess, I’m still going through it, you know.” Presence disappears, either more suddenly like through his grandma’s death or gradually, like his grandfather through his dementia and his eventual passing. Nathan, his grandparents, and the rest of the family found many ways in which they could be present for each other. Now that they the grandparents have passed, these moments have become treasures, which they can carry with them and deeply appreciate, even as they are grieving.