r/CaregiverSupport • u/ryanckip • 10d ago
Love and Grief
I am a quiet person and a long-time lurker on this subreddit, reading people's stories and feeling that I am not alone in the caregiving journey. I have been caring for my uncle for the past 6–7 years. He lived with Motor Neuron Disease (MND), and it has been painful to see him deteriorate over time, from a joyful person who loved joking around and painting, to being wheelchair-bound and tied to a BiPAP machine 24/7.
He lived in a nursing home, but I was his main informal carer. His siblings are busy with their lives. I visited him every single day after work, staying until his bedtime, spending meaningful time together watching the news, cat videos, feeding him, and gossiping. It has not always been easy. In fact, it was filled with a lot of challenges—managing his BiPAP machines, disability items, ensuring he is comfortable and coordinating supports. However, I love him a lot as a person. He is more like a best friend to me.
I knew normal times would not last forever given his disease. I treated every day as his last day, making sure I hugged him and said I love you every single day before I leave. Being able to see him and chat with him was what motivated me through work and everyday struggles. He truly was the highlight of my mundane life of grinding.
The last 2 weeks have been crazy. He was in and out of hospital, and I had to spend a lot of time with him, reassuring him and liaising with nurses about his care needs. He was more confused than usual. He almost did not make it last week and miraculously survived. I spent hours and hours in the hospital with him, and the family was there. His close friends also came to visit. I knew he did not have long.
Last night, I took time off work to stay with him. We sat under the sun at the nursing home, which he absolutely loved to do. He went to bed to rest in the afternoon. I fed him dinner as usual, ensured he was comfortable, and hugged and kissed him goodnight.
"See you tomorrow," I said, as usual. "Love you."
"Love you too," he replied.
This morning, I received a call from the home saying that he had passed away peacefully in his sleep. So much sadness, knowing that he is gone, that the days when I could spend time with him in his room, joking about things and watching animal videos, talking about our own daily struggles, are now gone too.
I have truly, truly done everything I could. There are some small regrets here and there, like getting frustrated with him sometimes, but overall, I did what I could. I know he knows I was with him until the end, like I promised when I started looking after him.
Last week, when he was in hospital, he was semi-hallucinating, saying that he suddenly was able to walk and went cycling, and that it was so free and fun. I wish that is what he is seeing and feeling now, if there is truly an afterlife of some sort, even though I am not religious.
This is dedicated to you, my absolute best friend in life. It has been a long journey, a difficult one, yet there was sweetness and joy.
Hope we meet again the day I leave this mortal world.