Do you want to know something interesting? I’ve been writing content for Kapok for years now, but I’ve never told my own story. While I’ve mentioned bits and pieces in passing, I’ve never sat down and told you all why caregiving interests me so much or my own connection with it.
We’re starting a new collection of posts on this site, called Caregiver Stories.
In it, we hope to feature the experiences of actual caregivers. Real people telling their stories, whether that involves writing about a single moment, an incident, or even their entire story. Whatever it is, we’d love to hear.
To find out more, check out this page.
To get the ball rolling, I’m going to tell you some of my story. Not all of it, of course, that would fill an entire book – and then some.
So then, where do I begin…?
Becoming a Caregiver
I became a caregiver through an unusual route.
I was in my mid-20s, dealing with severe depression and anxiety. Despite living in the same city as family and friends, I was extremely lonely. Part of the problem was that those around me had little idea of how to support me, while I had little ability to tell them.
My family did what they thought I needed. But, while their attempts were well-meant, they tended to make things worse, not better.
Then I met someone, online. I’ll call him Tom for the time being. Tom wasn’t well, even then. He was severely overweight, to the point that walking was difficult and he lived in a hotel with his mother, of all things. He was also bipolar.
None of that sounds very romantic.
He was, however, the first person in a very long time to see me. To care and to understand. His experience with the depressive side of bipolar disorder meant that he understood what I was going through and knew, almost instinctively, help to help me. He was my rock. My emotional support. The person who made me smile again, even on the days that I couldn’t even leave my bedroom.
We talked over Skype for hours upon hours.
At that time, the city I was living in had recently been through a major earthquake and was continuing to deal with aftershocks. The aftershocks went on for day after day after day – and there was always the chance that the next one could be serious.
Indeed, the initial earthquake happened in September 2010, while an aftershock in February the following year was strong enough to kill more than 180 people. I was dealing with anxiety and depression before all of that, so it’s no wonder that my ability to cope become worse and worse.
Tom was my way out – even though he in the United States, had no money and no job, and had plenty of challenges of my own.
The whole thing was a gamble.
I could say that I did it all for love. That might sound convincing too, as I did love him and I knew that being with him would make his life better. But, that wasn’t the reason, not really.
I took that risk for my own sake because I knew that staying where I was would kill me.
The Early Years
Those first days and weeks in the United States had their magic. They were also incredibly difficult. Most of my money had gone into the ticket to get me there. I had a little left over, but not enough to last us long.
It was tough going, for a long time.
Tom’s bipolar disorder meant that he simply could not hold down a job. Most of the time he didn’t have the drive to look for one either. We made ends meet however we could. Barely, sometimes.
There were dozens of times in that first year where we needed to choose between food and shelter, or days where we had a couple of dollars for food and that was it.
Bit by bit, month by month, it got better.
One thing that helped was realizing that we needed to move to Michigan, Tom’s home state. We were in California before that, as he had always wanted to live there. But, oh, the heat and the cost of living in California made it a horrible choice.
To get to Michigan, we had to deal with a Greyhound bus trip. That was beyond awful.
I doubt those long bus trips are ever nice. For us, there was layer upon layer of issues, starting with the fact that at that point Tom couldn’t even stand for longer than a few minutes without the risk of falling.
If he fell… getting back up was incredibly difficult, even with assistance.
He smelt bad as well. It’s hard to stay clean when you’re as large as he was. I helped him to clean himself as much as possible. Still, that wasn’t nearly enough and people on the buses were quite mean on occasion.
The poor man.
The bathroom situation made things worse still. Have you seen bathrooms on a Greyhound bus? They’re tiny. There was no way he could use the bathroom and often hours went by between one stop and another.
I’m not going to explain how we dealt with that one. Let’s just say it’s an experience I never want to repeat.
The Later Years
Things did get easier in Michigan – mostly.
We had more income by then and eventually started renting, rather than living out of a hotel room. Money was tight, but we got by. One year we had a makeshift Christmas tree that I made using a green towel and we had a few odds and ends as gifts. The next year we even had a plastic Christmas tree. It was tiny. Still… progress.
We convinced his mother to move in with us, so that we could rent an actual house.
Three bedrooms, an actual laundry, and a kitchen – for the first time in years. Seriously, before that I’d been using a combination of laundromats and washing clothes in the shower. We hadn’t even had an oven in the previous place.
Having a house again was amazing.
Everything else, not so much.
By the time we moved in there, Tom’s ability to move was severely decreased. He could still walk, just. The trip from the lounge to the bathroom left him out of breath, or from the bathroom to the bedroom.
He moved as little as possible to avoid the effort, which of course didn’t do his mobility or his weight any favors.
I tried to get him to eat well, to move, to take care of himself.
That’s the thing though. You can’t force a person to make good decisions.
The more time passed, the more intense my role became. Tom’s mother helped a little around the house, but spent most of her time complaining or shut up on her own. She seemed to swing between loving me and thinking I was amazing, to being upset that I wasn’t doing enough.
Honestly though, everything was on me.
I had to make the household work. Keep everything running. Keep it all clean, plus help Tom with anything and everything, often with no notice at all. I was in a constant state of red alert, always rushing to solve the next crisis.
Even with Tom’s mother living there, going away even for a few hours was risky. I never knew what I’d come back to.
While Tom wasn’t incontinent (thankfully), he did need help with cleanup. That could be a messy job some days. After a while, it stopped grossing me out. It stopped meaning much of anything. The idea of anyone but me doing that was a no-go for Tom, which left me stuck.
It was overwhelming and exhausting.
Tom worried about me too. Worried about the life I was living. At times, he wanted me to leave. To be free and to live again. He hated the idea of me giving up so much for him.
How It Ended
To be brutely honest, I don’t know how much longer I could have been Tom’s caregiver.
I stayed largely because I didn’t know what else to do. Leaving would have broken his heart and possibly killed him outright. Staying, on the other hand, was destroying me.
I was beyond exhausted most of the time. I tried self-care practices, with some success, but I needed much more. In practice, I should have worked on setting boundaries and valuing my own needs.
At the time though, I didn’t know how to do that. I also thought that doing so was selfish and that I should always put Tom first.
I never had to make the choice.
At some point, I forget exactly when, Tom developed a wound on his leg. It was like a diabetic wound, although he didn’t have diabetes. We did have doctors and nurses visiting the house regularly even before then, but the service was limited, to say the least.
Getting someone out there to look at the wound (as he certainly couldn’t go anywhere) was difficult. We had painkillers prescribed a couple of times, but even those weren’t enough. At one point, I was changing bandages every few hours and he was yelling in pain on and off for days.
It was horrible.
A nurse did come eventually. She stitched and bandaged the wound, then gave me clear instructions about how to take care of the wound and Tom.
I suspect that was all too late though.
A few days later he was light headed and collapsed. Not a bad fall, but at his size, he couldn’t get up again. We had to call an ambulance. He just wanted the response team to help him up. His mother and I bullied him into going to the hospital with them.
I’m glad we did, although I suppose it didn’t change much in the end.
He lost consciousness in the hospital within a few hours – before the doctors came in to tell us that it was serious. Up till then, we just thought he was a little dizzy and perhaps tired.
He never woke up again.
They tried for a week or so. His mother visited him every day. I didn’t. I couldn’t bear to. The longer it went without news, the more certain I was that it wasn’t going to end well.
I’m grateful that I had that time to adjust. To realize what was likely before it came to pass.
Tom’s mother experienced things very differently. She was convinced that no news was good news, so she didn’t become any less optimistic as time moved on. When the hospital did call us and ask us to come in, she was certain that it was good news. I was certain that it wasn’t (they told us nothing over the phone, which didn’t sound promising to me).
In part, I think Tom’s mother assumed that he would fight to live.
I’m not so sure. Tom was exhausted. He was only 40, but he’d had a very difficult life, one with few good moments and many overwhelming ones. He told me once that the years we had together were the best ones of his life, despite the fact that we were housebound for much of the time.
I suspect that, in the end, he had no will left to keep fighting.
Finding Myself Again
I flew back home not long after Tom died.
My conscience told me that I should stay and take care of his mother, as she wouldn’t have been able to stay in that house alone. Or, I suspect, ever live alone again.
I couldn’t though.
Caring for Tom almost broke me and that man both loved and appreciated me. I could not do so for his mother as well.
It took me years to forgive myself for that and for ‘allowing’ Tom to die. In the end though, I realized that I did everything in my power. I gave him some very special years. His choices were his. I’m not responsible for any of them.
Returning home was difficult, but not as much as I imagined.
I had learned a lot in my time with Tom.
Among other things, I’d learned how to do what needed doing, regardless of my emotional state. I was still depressed and anxious, perhaps even more so than I had been before I left New Zealand. Now however, I had the strength of will to take care of myself. To do what I needed to do to get better, even when I didn’t want to.
I found friends. Found connections. Found new pathways.
Some of the work I’ve been doing on self-care, resilience, self-compassion, mindfulness, and more is reflected in the pieces on the site. I’m not working on a book that combines what I learned as a caregiver and what I’ve learned since.
I’m excited about the book and hope it can be a lifeline to many people.
Some of the lessons that I talk about are ones that I wish I’d known as a caregiver. I suspect that some of them would have changed everything.
I’m still a work in progress. Who isn’t? There’s still much I need to figure out, but I’m well on the way. My friends, family, and current partner all help – and I’m determined, more than ever before, to live a good life.
And, for Tom’s sake, I want to help others.
He gave me a second chance at life. Now it’s my turn to make someone else’s life a little easier.
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