Recognizing Caregiver Guilt is the Hardest Part (For Me)

It was 7:30am and the phone was ringing and ringing and ringing. I knew Mom wasn’t there after the 4th or 5th ring, yet kept the phone pressed to my ear while my thoughts raced through my head.

On and on my thoughts went like a snowball quickly gathering speed. This was the third day in a row I hadn’t been able to reach her. I’d called her assisted living community and knew she was ok, but my worries persisted. Phone struggles haven’t been foreign to us since Mom moved to assisted living, but this felt different. I found myself contemplating how to shuffle around family and work obligations so I could make the two plus hour drive to see her.

Carrying the Boulder Up the Mountain

Trying to stay calm, I went about my morning routine, still thinking about Mom. To an extent, I’m always thinking about her, but this was heavy thought. It felt like I was carrying giant boulder on my back and trying to climb a mountain. I was weighed down by it. Even my legs felt heavy. It’s hard to put into words the actual physical discomfort the worry caused. And as time pass, it only got worse.

Have you ever had one of those nights where no matter what you do, you can’t get to sleep? You just can’t seem to get comfortable? You try all of your go-to positions: right side, left side, back, stomach–but nothing works? This feeling was a daytime version of that. But even worse, I think, because I was fully aware, awake, and trying to manage my day. No acute pain or sadness per se, just a restlessness that seemed to grow with each tick of the clock.

I let the clock crawl to 10:15 a.m. and I called Mom again. “She should be done with breakfast and swimming by now,” I thought. Same result. Lots of rings and no answer. This cycle repeated itself throughout the day. I muddled through, only half paying attention to whatever I was doing, growing more uneasy by the hour.

Contact. Finally.

Finally, at 4:30pm, it happened. Mom answered the phone! Hallelujah! Initially relieved and excited to hear her voice, reality promptly smacked me in the face. Mom was audibly annoyed with the fact that I’d been out of touch! She wasn’t yelling at me or anything like that, but her tone was one of disappointment. It was a tone I remember well from childhood. “Why hadn’t I called?” I gently told her I had, biting back the kid in me who wanted to whine, “It’s not my fault!” But it got worse, because aside from her annoyance, I could tell from the jump that Mom was weepy. She told me she’d been weepy for the last few days and she didn’t have any good reason for it. Just upset and scared about her situation, she said.

Unfortunately, Mom has these bouts from time-to-time. I watch out for it, and with the help of her doctors and community staff, do all that is possible to be proactive in battling her depression. We keep her active with her support group, exercise, social activity etc in addition to prescribed medication. While it wasn’t unprecedented to hear Mom like this, this time stung bad because I knew she was going through it alone.

Putting a Name To It

Mom and I talked for a half hour and she seemed much better–night and day. She was back to her baseline by the end of our conversation–clearer voice, laughing, actively engaged in the conversation. This was good, but I was still still feeling the shock and pain. This episode was particularly biting because it tied together the emotional stew that I had been cooking for the last 3 days. But now I could name it. Guilt.

The reality is that I knew deep down it wasn’t my fault. I’d called Mom 14 or 15 times in three days. Sure, had we talked any of those times, the conversation we just had might not have threw me the way it did, but Mom is still going to have her ups and downs. I can’t fix that with phone calls. It’s part of her story now and I knew that. I knew it wasn’t my fault. But knowing that didn’t erase the building unease which had gnawed at me in the days leading to this point. In the moment, I was still buckling under the weight of the guilt.

But having a label on it helped me. Through the restless fog, I could begin to make sense of what I was feeling and restore order in my mind. Having the label allowed me to process all the ingredients of the emotional stew–and cope. Or start to anyway.

It’s not easy or fun, but it’s necessary to recognize that guilt comes with caregiving. It’s part of the deal. Once I recognize it, I can manage. I just need to get better at recognizing it before it becomes that boulder weighing me down.

Originally published at roandsteve.com on November 2, 2018.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.