Ask any caregiver to describe their scariest moment, and I will bet you, none of those moments will be about them. That’s the thing about being a caregiver for one of your loved ones – mother, father, sibling, husband, child – their illness, their comfort, their happiness become your own. Yet there are no doctors, or specialists or medications for you. It’s often a lonely and thankless task.
But don’t think for a moment that we regret being a caregiver.
I know I don’t. I spent three years as a full time caregiver for my younger sister. It was by far the hardest thing I’ve ever done. It took over my life and ate away at my personal time, my finances, my social network, my job. It all suffered under the strain of caring for someone who was unable to take care of herself.
My sister, let’s call her L, has several mental health challenges, including but certainly not limited to bipolar disorder. This meant a lot of different things – basically, L has intense rapid mood swings between manic euphoria and extreme depression. L has been hospitalized 10 times in the last 8 years for suicide attempts, including one which ended with her in a coma in intensive care for 4 days before regaining consciousness.
Back in 2010, I moved home after many years to take care of her after her latest suicide attempt. L shunned my parents support yet wasn’t able to live independently, she couldn’t even be trusted to take her medication without supervision. So I moved home, got an apartment and moved her in with me.
To say I had no idea what I was getting myself into is an understatement.
I could give you a rendition of everything that happened in the next two years, but to honest that would be a book, not a blog post. So I’ll just give you an excerpt –
My lowest moment as a caregiver was spent sitting in the psychiatric ER waiting room. I’ve never been more terrified than I was that night. Because I’d failed; everything I’d spent nearly a year working on was coming apart around me. It was my job to take care of her, to protect her and I failed. I couldn’t protect her from the one thing that truly endangered her, herself.
The night began shortly after I got home from work, with L coming into my room crying, holding a paring knife. She was mumbling about the voices and keep trying to cut out her own eyes so that she could “get to the voices” that were trying to make her think she was crazy.
My first challenge was to get the knife away from her without getting hurt – it took a few minutes but eventually she dropped it and collapsed on the floor crying and rocking, seemingly unconcerned that she was repeatedly knocking her head into a wall. I cradled her and tried to get her to take her meds, to help calm her.
After nearly 20 minutes of this, I was getting even more concerned – I had never seen L like this before.
The meds weren’t kicking in yet. I focused on calming L, holding her and speaking softly, telling her I loved her and eventually just begging her to calm down. It took about half an hour and the meds finally kicked in and she calmed. The crying stopped. But now she was withdrawn, she seemed terrified of me. She shrank to the other side of the room, convinced that I was working with the evil woman who put the voices in her head that I was trying to hurt her.
It took me another hour to convince L to go to the hospital. And that was how I found myself sitting in a waiting room, waiting for a doctor to come out and tell me that I had failed, that there was something I could have or should have done to prevent this. I find it hard to find words that adequately convey the level of guilt I felt. I was a failure at the only thing that really mattered.
But he didn’t.
The only thing he said was that I should have called an ambulance; that I shouldn’t have had to deal with this on my own. Where were my parents? I was barely older than L was. I didn’t have an answer for him. Asking for help has never been my strong suit. It seemed like weakness. Taking care of L was my responsibility – why should I expect anyone else to help?
It’s been several years now, but I can still recall every detail of that night, the feelings of guilt, of relief that L was admitted, that I could go home to a quiet apartment. Though I love L, in that moment, I didn’t like her very much, and I resented her. I resented what I had given up
for her, seemingly all for nothing.
But the truth is, it wasn’t for nothing.
Because the next day I got up and went back to hospital, and again the day after that, and the one after that. Eventually, L came home. And while I can’t say everything was better (it definitely wasn’t), the feelings of failure abated, the guilt lessened. L lives on her own now. I don’t know how much of that was because of me, but I take some small measure of comfort for having done something in my life that I know has truly mattered to another person.
And in the years since, the doctor’s words have stuck with me. And in time, I learned something that I hope I never forget: needing help doesn’t make us weak, the ability to ask for help, to be vulnerable, is the very definition of courage. I’m not perfect, no one is, certainly no caregiver. We need to be forgiven our failings, just like anyone else. But we also need to be courageous enough to ask for help – from doctors, from family, from friends. We can’t do it all alone.
This November is National Family Caregivers Month.
It’s about recognizing the important role of caregivers – for anyone who has sat in that waiting room, counted pills and scheduled doctor’s visits, done the shopping and cleaned the house, provided physical, social, psychological or other assistance in the daily life of a loved one. Please know… there are thousands of other people out there with issues just like yours. Ask for help, ask for support. You deserve it and so does your loved one.