The Dark Side of Caregiving

I would say that I have learned to be pretty good at being a positive person. In general, I look at the glass half full. I consider all sides of a situation, and I see the lesson in every mistake. But there are times when trying to be positive is actually a suppression of my true thoughts and emotions. And sometimes, I have to wallow in that place in order to release it. Writing is a part of that wallowing. It’s an acknowledgement of all those who are suffering silently while remaining strong enough to take care of someone else, physically, mentally, and emotionally.

Before I continue I’d like to mark a *TRIGGER WARNING* for all those who are sensitive or traumatized from taking care of someone in their final years of life, and mentions of death.

I also acknowledge that this post seems to be full of complaining and negativity. I have other, more positive posts in my Caregiving Chronicles. But I would be lying, fooling myself, and fooling others if I said that the dark side of caregiving didn’t exist on a regular basis.

Finally, yes, I am in therapy, and I have since set more boundaries for myself since writing this post. I think mindset and self-care are crucial aspects not only for everyone, but especially for caregivers. Each day is filled with both highs and lows. Contrast is essential for life.

Now is one of those times – The dark side of caregiving.

There is a part of me who doesn’t know who I am anymore. My life has been consumed by taking care of someone else. I put someone else’s needs before myself. That person is not my entire being, but rather a part of me. It’s been important to make that distinction so that I don’t completely crumble. I am human and I fluctuate through different states and emotions, as we all do. This is one part of me.

Some days I wake up and take care of someone else’s bowel movements before my own. Every task I try to start takes me another week to finish if I ever even get that far. I eat last, and with many interruptions. I feel unappreciated and many days are full of being name-called, being demanded of. Instead of a mere please or thank you it’s, “that’s all I get?!” “I’m hungry NOW!” “Get me this, get me that.”

I’m never doing what she wants. There’s always something wrong, always my fault for causing her pain, keeping her stuck in bed, unable to walk, or even that she had a stroke in the first place.

Some days my energy is zapped. I want to do nothing for a month. For one day I’d like to wake up on my own accord instead of someone else’s internal clock. I want to go one day without having to change an adult diaper who is one and a half times my size. My schedule is not mine. My life is not mine.

Who am I anymore? My identity, my sense of purpose, my future hope, my life trajectory is all in question, is unknown.

My anxiety comes in many forms. It’s heart racing, ears ringing, appetite confusion, brain fog, fight or flight, embarrassing sneak attacks that keep me even more socially isolated.

I want so badly to get away. To sit in a field and listen to nothing but the breeze, feel the sun on my skin. Silence. Stillness. But it’s always a process to get there, away. We all have to jump through hoops. Finding another caregiver is not as easy as handing a baby over to a sitter. Can they do an in-bed change? Are they strong enough to roll her over and pull her up in bed when she inevitably slides down? Will they take offense to her temper?

But when I find a momentary escape – the separation anxiety. What if something happens while I’m gone? I have to be there with her when it happens. She told me she wants me there. Is she getting the proper care?

I feel guilty leaving. But I feel burnt out and overwhelmed staying. Am I doing the right thing? What if she is better off somewhere else? But then I wouldn’t get to spend time with her… The contradictions are seemingly endless.

My sister-in-law who cared for her sister before she passed said something that sticks with me – “There’s no good way for caregiving to end.” They either pass, or you give up caring for them and feel the guilt of it. What happens when it’s all over?

At the time of writing this, I hadn’t been gone from the house for over 12 hours in over a year. No break. No vacation. The only few weekends I left was to make out of state trips to clean out my grandmother’s house so we could sell it. It’s a task just to schedule my own appointments or merely take a dance class (my supposed “profession”). Alternative care is complicated. We’ve gone through two, almost three weekend caregivers due to them quitting.

I’m about to embark on my first week off to visit my partner’s family in another country. He hasn’t seen them in over two years because he wanted to support me, and of course wanted me to come. I worry about my mom taking care of her mom by herself. She works a full-time job and then comes home and “works” more. She doesn’t have the physical strength or the generational gap like I do. For her, the verbal abuse is traumatic.

My grandmother suffers, this I know is true. What happens if I quit? She still suffers. So what’s the difference? Will she resent me for putting her in a “home?” Is she even in her right mind to process this stage of her life?

I feel like I can’t win. What about other family members? Hmmm, what about them? There’s hardly ever a check-in, even from the ones geographically close enough to visit. No offers to help. No talking about how we all feel in this situation. Simply, avoidance. Going about their own lives in oblivion. I can’t blame them…

Only those who have been in the caregiving shoes know how it feels. And still each circumstance is different. Only my mom and my partner know enough to understand. But they still aren’t me.

The dark side of caregiving is the internal toll it takes on everybody. For me, it’s the lack of freedom and the feeling of stuckness for my wanderlust soul. Forget the travel though, we’re in a pandemic. It’s the little things that I’ve taken for granted. I can’t leave the house without someone else here in case of emergency. It’s illegal and neglectful to leave her here by herself. It’s the jealousy I have for my peers. The guilt, frustration, anxiety, resentment. It’s not being able to work on my “career,” and fearing what will happen when I enter back into the industry. It’s feeling like I’m falling more and more behind and wondering how I will pick myself up when all of this is over.

It’s hearing people say, “if I ever become bedridden, just pull the plug.” FYI, being bedbound doesn’t mean you’re connected to life support or another machine. In fact, I can get my grandmother out of the bed and into a wheelchair using a hoyer lift, which is a process in and of itself. There’s still so much left to experience and be thankful for if the person is able to adapt a new outlook to fit their situation. Unfortunately, my grandma doesn’t have that. While I consider her lucky to have survived a massive stroke, she considers herself a victim of life. Now, the little things are that much more important. I take advantage of every good mood.

It’s when people say, “oh you’re not working right now? You’re so lucky!”…even though my whole life is a job.

It’s being subjected to being hit, punched, bitten, kicked, yelled at, sleep deprived, and the bad guy during episodes of agitation. It’s feeling bad for giving her psychiatric medication to calm her down enough to provide her the basic care like bathing, diaper changes, and taking medicine.

It’s going around and around on a merry go round with nowhere to get off.

It’s the secret hoping and wishing for her to be free, pain free, and in peace, at last.

I’m a part of a Facebook group for young caregivers. It’s a lot different to be in my “glory days” trying to live my own life while taking care of an elder. Until recently, it had mostly been something that middle aged people do. The group has given me some perspective. First, I feel sympathized with, knowing that I’m not alone, and others are experiencing similar situations. I laugh when we share about what kind of chux we use and where to find gloves. I feel seen when we offer emotional support for each other, and I see I’m not the only one trying to calculate when and how I can have a family of my own. I also feel very thankful, because many others have it much worse than I do. And finally, I feel frustrated with the healthcare system in our culture. It’s very difficult to receive compensation for caring for a loved one, and it’s hard to find caregivers because they are overworked, and aren’t paid enough by agencies. And don’t get me started on the lack of resources that nursing homes supposedly have, especially when they receive tens of thousands of dollars a month for residents to stay there. Something, no, LOTS of things need to change. In fact, there’s a whole other Facebook group for caregivers willing to share their experiences for professionals who are collecting data for research and articles.

The bottom line is this – I love my grandmother. And that is the reason why I take care of her. Though we have our good moments, we also have our very low lows. I’m not the same person I was before I started doing this almost two years ago, and there’s no going back, that person is gone. I am forever changed, evolved, torn down, and built up.

Through all the emotions I feel, the one that runs continuously through the rollercoaster, is grief. I grieve the person my grandmother once was, and I wish I could have changed what happened. I grieve my own life, what I could, should, and would be doing had I not been here. I grieve my mom, seeing all the stress she is in. I grieve the toll this has taken on my partner as we navigate our relationship through this time. I grieve the friendships that I’ve lost. I grieve the slow demise of my grandmother, wanting so badly for her to see it differently, to find peace, to reach her ever after.

And I grieve the inevitable loss that will happen when all of this over. That will cause all of this to be over.

Though I could keep going on, there are cracks of light through the darkness.

This is the dark side of caregiving.

I’m Taylor-Leigh. A creative, a dancer, a writer, a caregiver. Tell your people you love them. Please, now. I love you.