The Imperfect Caregiver

We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.

“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.

As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast.  I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.

I had to learn that he was often secretive and hid his symptoms when ill or in pain.  Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening?  What happens when mental illness and dementia combine? Would he harm himself?  How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?

I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which.  The fact is he tried hard to fool them and often succeeded.

“She’s crazy,” he would tell them. Often it was close to the truth.

I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration.  When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.

Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.