The Butterfly Effect: What Caregiving Taught Me About Preparing for the End.

Pat

6/3/20265 min read

The Butterfly Effect: What Caregiving Taught Me About Preparing for the End.

We all have our bouts of denial; it’s part of the human condition. Some of us salt our denial with stubbornness, just for reinforcement. Maybe it even feels like a small dose of power. In the end, it doesn’t really matter, because the decisions we defer eventually get made for us, usually by a body that gets tired of being asked to do things it can no longer do.

That’s how it started for Brownie, a little after she turned 92. There had been many decades of living alone after her parents died. Her work was close to home, and she never wanted to leave the house she bought after immigrating to the US. I was her niece, and we were each other’s last surviving relatives. We were bound by obligation as much as affection.

She lived in South LA, formerly known as South Central: a Victorian lady who lived long enough to see her neighborhood turn into gang territory. I was always thankful that her neighbors looked out for her because she refused to move. During the various LA riots, the lady next door always brought her meals so she wouldn’t have to leave the house. While in her 80s, there had even been a man with brass knuckles who beat her on her front porch just to get her social security check. Still, she wouldn’t move. Then came the call that changed it all.

I don’t remember what day it was, but I was in my office. I was the Clinical Director for a large community mental health operation. I oversaw a lot of employees, psychotherapists, students in placement, patients, finances, and the occasional board drama. But when that call comes, all of your life goes on hold. Something more pressing matters. So, I left work and headed for Los Angeles.

The neighbor had become concerned after three days of not being able to connect and used her key to check on Miss Brownie, as she called her; indeed, there was trouble. Brownie had slipped in the bathtub exactly three days earlier and couldn’t get out. You can imagine some of the other messy circumstances that went with being trapped in a tub for three days. But she was conscious and mostly oriented.

We managed to pull her out, and of course, it fell to me as the next of kin to clean her. It was beyond awkward for both of us, but we got through it. From there, we headed to the ER and spent hours waiting for her to be evaluated. Hours. In the meantime, further dehydrated, she began to hallucinate. Eventually, she was seen and admitted.

The next step in this adventure came about two weeks later. I got a call from the hospital social worker saying her Medicare rehab benefits were about to run out, she couldn’t go home without a caregiver, and she needed to be moved out ASAP. This was all news to me, and I had no clue what to do or where to start.

A caregiver was out of the question; I didn’t have the time to supervise one. Within a few days, I figured out it meant placement. I knew she would hate it, and when I told her, she did. “I don’t want to leave my little house.” We bargained. “Let’s see how it goes; maybe you’ll get stronger.” She didn’t. She never walked again. And so, it was that I found her a bed in a skilled nursing facility (SNF) about two miles from where I lived. Eventually, she said, “Pat, you’re a social worker. I should think you could have done better by me.” But I wasn’t that kind of social worker, and never mind that when she was still working, she’d done the same thing: placed each parent as they’d become demented into a SNF. Life doesn’t stop for long, even if it’s a family emergency.

In the meantime, I continued to work 40-plus hours a week, visited every day, and went into Los Angeles weekly (daily at first, until I figured out her cat situation) to check the house. She had the trust and foresight to put me on her checking account before this happened, which was a major sanity saver for me, but that was only a short-term solution for financial coverage.

I knew there would come a point when the house would have to be sold in order to pay for the SNF. That meant she had to give up more control than she wanted to, and I had to assume more control that I also didn’t want to. It also meant I had to empty the house of over 60 years of her belongings, my grandparents’ belongings, and memories. The minefield of memories and losses to be relived all over again.

Still, I visited daily, and we worked with it as best we could. I know she agreed to things she didn’t want to but felt she had no choice in. I would ask her how she felt about dying, if there was anything she wanted to talk about. There wasn’t. We went on like that for two years. Her most repeated phrase was, “It’s taking too long.” I’d nod and say I was sorry. She couldn’t hear well and conversation really consisted of yelling by that point, so I’d leave it at that.

Finally, six months after turning 94, she got her wish, and her spirit was released from her body. Her money was gone, the checking account had $125 left in it, and the facility was in the process of applying for Medi-Cal to cover her bill. Somehow, “too long” seemed to know how to count down to the last month she could afford.

There is a proverb that a butterfly flapping its wings can be felt on the other side of the world. I think end-of-life strategies, or lack of them, are like that. My side of the world wasn’t the same after stepping into her world. Decisions we don’t provide for affect those who care for and about us—in more ways than one might expect. Caregiving changes more than a life; it changes the lens through which a life is lived.

One casualty of my aunt’s lack of preparation was my 17-year relationship. I was no longer willing to be in a situation where I was an out lesbian everywhere except with my partner because she was closeted. She was closeted at work (a university professor) and with her family. This hiding extended to refusing to have my name on the house we shared because, “What would my family think?” If either one of us had health issues, there was no protection. Period.

This coincided with Betty Berzon’s release of Permanent Partners, which brought to the homosexual discussion (among so many other things) various emotional, financial, and legal complexities that gay and lesbian partners faced as they built a life together without the benefit of legal marriage. After all I’d just experienced—seeing how important facing the future realistically was—I could no longer settle for roommate status. I said goodbye. It was one of the hardest things I ever did, and I didn’t want to, but more importantly, I wasn’t willing to abandon myself. The butterfly had flapped her wings.

Why do I share this? It’s twofold. First, it’s to say I’ve been there. I did caregiving for my dying mother when I was 21 and then my aunt three-plus decades later. Aging, illness, and death defined my life. Second, I hope by sharing this story, it will serve as a reminder to be proactive. Make your choices while you can. Is it easy? Hell no. Mostly this stuff is scary, or painful, occasionally gross, and certainly grief-provoking. It can even be complicated depending on your life circumstances. But there is assistance; we just need a map to find it. We hope this website is such a map.

Whatever you do, though, don’t be the one who lets Fate drop-kick you into a bathtub with no exit. If that were to happen, you haven’t been fair to yourself, and certainly not fair to whoever has to pick up the pieces. Don’t abandon yourself. You deserve peace in your final years, not regret—the choice is yours.

~Pat