The Caregiver Who Is Still There

I went back to caregiving this week. Except this time, I was the patient.

I recently had minor surgery. It required a care plan for when I returned home to recover. Wound care, medication schedule and absolutely no physical exertion - all rest. That last was, I must say, the hardest to maintain.

I worked very hard to be a good caregiver to myself - and be a good patient at the same time. The long hours of sitting, resting, ice packs first, then warm compresses. This medicine twice a day, that medicine three times a day. When did I clean the sutures? Creating and maintaining a schedule, both out of medical necessity and for my own sanity, so that I could heal in the most complete way possible.

I created a routine so that my care was consistent and reliable. There was no question - I understood the body needs this time to rest, recover and renew.

As I settled into the quiet of recovery, it felt very familiar.

It took me back to the caregiving years for my husband. As he progressed through his journey with Alzheimer’s, I learned that routine is everything. His world became smaller, and predictable, easy routines were the way to make him feel safe.

But maintaining a routine when the patient is losing their ability to navigate the world becomes increasingly difficult. As much as he tried to hold on, Lee’s grasp on everyday tasks was slipping. It was up to me to not only establish the routine, but to initiate and help him execute every task and activity, no matter how small.

I answered questions asked dozens of times. Helped with daily tasks of hygiene. Monitored moods and behaviors, and learned the warning signs of escalating agitation. Sunset no longer evoked images of the peaceful end of the day - it became a potential landmine of distress and fear.

Without knowing it, I was honing skills I already possessed - organizing and prioritizing tasks and schedules. Investigating and researching - searching, really - for any nugget of information that would help me help him.

I already knew how to love the man Lee was, and I learned how to love him through the disease.

But I was also learning new skills. Patience, empathy, awareness of the changes my husband was going through. I became a stronger communicator and was no longer afraid to challenge the wisdom of accepted health system practices.

I learned, the hard way, that it didn’t matter anymore if I answered a question 1 time or 20 times, he was going to repeat it. I couldn’t reason my way through the conversation anymore. All I could do was stay with him, in the present.

Caregiver was one of the many roles I took on - as one does in life. After best friend, after spouse, after helpmate and “buddy”, caregiver became the most important role. Helping him move through this world that he couldn’t manage anymore. Quietly. Over and over again. Behind the door.

As anyone who cares - or cared - for their spouse knows, this experience is lonely, isolating and singular in the pain one feels losing the love of their life. At times we fight to retain our identity, our sense of self, as caregiving takes everything from us. We grieve, during and after. For the loss of our loved one, sometimes for the loss of us.

But the skills and techniques and practices we learn - about caregiving, about our spouses, about ourselves - are still there. They are there when we need them - to take care of someone else, and especially when we need to take care of ourselves.

The memories from the lived experience don’t go away, even as the grief diminishes and passes. We carry forward with us memories of the time with our spouses and it informs our next chapter. Not fully, not overwhelmingly, but subtly integrated into the next moves we make, people we seek and experiences we find. And in the ways we show up when someone needs steadiness and care.

The caregiver I became during those years didn’t disappear when the caregiving ended.

She showed up this week.

What did caregiving teach you about yourself that you didn’t expect? What skills do you carry forward — into your work, your relationships, your own self-care? I’d love to hear in the comments.