10.5 months of borrowed time

It was 11:18 PM when I last held your hand. Five hours before you reconnected with grandpa. You weren't able to speak much, but I knew you heard me. You'd always tell me the next morning while I washing your face. I always knew the day would come when these moments would become a fond memory. I just didn't realize it would hurt that much. I hope the last 10.5 months were as special to you, as it was to me. I'll certainly cherish the the many memories we shared for the rest of my life.

In this article, I want to share some of my thoughts on being a caregiver for grandma.

The tail end

In the US, so often we say I'm too busy. A feeling that, perhaps, could be tempered with some perspective. In Tim Urban's article, The Tail End, he makes the following realization:

...when I graduated from high school, I had already used up 93% of my in-person parent time. I'm now enjoying the last 5% of that time. We're in the tail end.

I suspect we grow, in both age and wisdom, as I didn't take that to heart in my younger years as I chose to climb the ladder of hustle culture instead. I'm disappointed that hospice became the wake-up call for me to shift my priorities and regret I didn't make the decision sooner. Despite my choices, I think I made the most of the 5% in-person time I had left with her.

Grandparents, my cousin, and me (on far right)

A rollercoaster of emotions

There were a lot of ups and downs in the last 10.5 months. The highs were very high and the lows were very low. In the beginning, there were more highs than lows. That changed towards the end where the lows became the norm and I'd cling tightly to every second of happiness I could find.

Joy was a much easier emotion to elicit in the beginning...

She sang along to classic Chinese songs she hasn't heard in years...

She had dim sum, a common Chinese cultural meal, for the first time in 3 years

Grandma going out to dim sum with us for first time in 3 years

She'd come to our apartment (my brother and I) and watch tv shows while we cooked

Brother serving grandma some food he cooked up

And as she continued to improve, we laughed. A lot.

Conversely, the lows came in all shapes and sizes. One that stands out in particular is anticipatory grief. Before I left Verily Health, my manager told me about the difficulty of watching a loved one deteriorate. She was a caregiver for her grandparents and mother and said it's not an easy journey towards the end. It wasn't something that was top of mind initially as grandma was improving in the first 6 months. She even graduated hospice. Though, the emotional toll this had on me in the last 2-3 months before her passing was exhausting.

On one of the first occasions, it was a normal morning where I had just brought her some breakfast. After a few minutes, she reported feeling a bit off and asked that I check her blood pressure. 67 systolic. I immediately went to the nurse who had just checked it 30 minutes ago when it was >160 systolic. I ran back into the room to find grandma unconscious and unresponsive.

I tried shaking her. Nothing.

Called her name loudly. Multiple times.

She was breathing though.

We called 911 immediately and they arrived within a few minutes (hospital is 5 minutes away). I'll never forget the feeling of calling out her name over and over when I was shaking her and wondering if this was the end.

That event would go on to become the first of many events that'd I'd experience where I'm waiting to hear from a doctor, a nurse, or the hospital if grandma made it through. It's an emotion that made me feel completely helpless, and over time, mentally burnt out.

Community

Being a caregiver can be quite isolating and lonely. It wasn't that bad in the beginning, but it caught up to me about 3 months in as my schedule now revolved completely around my grandma. I said no to friends often, didn't travel anymore, and realized that caregiving meant you're responsible for the wellness of someone 7 days a week. Perhaps that's also my own doing as I felt as though I made this decision and I will own it. Men especially. On the flip side, the care team became my second family. The nurses, doctors, CNAs, PTs, and social workers were the individuals I saw every day. Even the other nursing home residents. I knew them all by name, their stories, and sadly, saw how infrequent family would call or visit.

Family and friends were also instrumental. My sister would visit on the weekends. Typically bringing a lot of home-cooked meals Grandma liked. Little brother would come in the evening after work. And we'd often facetime together in the evenings when I bring grandma dinner. We also got a lot of visits from family and friends that'd bring food, memories, and a big smile to grandma.

One of many visits from my cousin

There's also strangers. Some of the most supportive messages and conversations I had were with random strangers. Many of whom, were former or current caregivers. It'd be an understatement to say that their words meant a lot to me.

Terminal lucidity

Some of the most joyful moments came towards the end when grandma suddenly became very lucid, energetic, and in great spirits. I'd come to find out later that this is something called terminal lucidity. Everyday she had a new craving (e.g. pizza, sushi, Chinese) and would want to talk with family and friends on the phone. The video below captures some of the snippets.

As I reflect on the last 10.5 months with grandma, I feel deeply grateful I had the opportunity to return a fraction of the love, care, and kindness that she showed me. Also a reminder to myself that "good relationships keep us happier and healthier. Period.". If you've read this far, let it be a reminder to call up your loved ones. Even a few minutes can mean a lot.