When people meet my Mom the word "sweet" invariably comes up. She has a sort of a queen-like quality about her; an air of gentle beauty from within. A few months ago, as she woke up after a seven-hour hour operation that removed a bone fragment near her spinal cord, she immediately gave me that sweet smile. No one but my Mom is that pleasant after surgery!
Throughout her six-month-long health crisis - through procedures and care that challenged her dignity - Mom was considered an easy patient by all of the hospital staff. When C Diff ravaged her skin, she was in horrible pain. But she was unfailingly polite to the certified nursing assistants who bathed her, despite the discomfort it caused.
But everyone has their limits; even my Mom. And, much to my surprise, she reached hers last night in full glory. I think she just has grown tired of being taken care of all the time!
Here's what happened: One of our hired caregivers came to help her go to the bathroom while Dad and I were out walking our dog, Jackson. Mom didn't need to go to the bathroom and told the caregiver she could leave. But apparently, the caregiver felt she should stay until I returned.
"I told her no I don't need to do this!" Mom said, relaying what had happened. "I tried to be nice but she didn't leave. Finally, I said go, go, go, GO, GO, GO!"
I haven't seen my Mom that animated in months; possibly years. This behavior was completely out of character for her. It was a bit shocking - this incident seemed so inconsequential after all she's been through. While I was concerned, I actually got a bit of a kick out of seeing her so riled up. Clearly she had reached the end of her rope, and I needed a wake-up call.
Mom didn't want to be watched, and she felt she was fine to be left alone until we returned. Now usually Mom would just let something like that go until I returned. What made this so different?
I immediately got the message underlying Mom's strong emotions. She was so done with all of us checking on her, taking her to the bathroom, giving her pills, watching...hovering.
Mom has been very sick over the past months; we almost lost her. But as she gains strength, she wants her independence back. She has been home for almost a month and, despite the persistent diarrhea and pain that impedes her full recovery, she wants some control over her life. I don't blame her a bit. Many people would have given up long ago. Mom didn't and now she is ready for a new phase of her healing to begin; but am I?
Mom's plea for more freedom made me realize how deeply terrified I am. Terrified that she will fall again, and she'll be right back in the hospital; scared stiff that she might not make it through another health crisis; uncertain that I have it in me to continue to be the kind of advocate that I've been over the past 6 months. I stayed by her side 24/7 most of the 40 days she was in the hospital - closely monitoring every detail of her health care, medication and rehabilitation; being on constant alert for medical mistakes (and there were plenty); making stressful decisions; losing a great deal of sleep (still in that stage); suffering the negative effects in every other area of my life.
She's come a long way, but she's still facing many challenges and a very complicated set of health concerns. The thought of risking a step backward makes every fiber of my being freak out. I feel my internal brakes slamming on. It reminds me of when I first started driving and Mom would sit in the passenger seat, slamming on her imaginary brakes every time she felt I was going too fast or about to crash into something. Now our seats have switched. But I can't control every aspect of my Mom's life any more than she could control the car brakes from her seat.
So this is when I have to reel myself in and remember my mantra: my goal is to support Mom and Dad in being as independent as possible for as long as possible. Their lives are not just about health care. Quality of life is just as important. My job is to create the safest environment possible while allowing Mom the room to breathe that she craves. She's got to be able to wriggle the toes of her soul - otherwise what's the point?
Today we had a long talk with her physical therapist and adjusted our goals. We will work on Mom's ability to get to the bathroom and back to her chair by herself. We'll focus more on helping her adapt her activities of daily living yet again. We, her caregivers, will all take a step back and approach Mom with more of an 'I'm here to help if you need me' attitude, rather than doing things for her.
Mom reminds me of a hydrangea - she looks so delicate but is incredibly strong and resilient regardless of how the winds blow. Her tenacity and willpower amaze us over and over again. My fears and focus on preventing another fall have blocked me from fully acknowledging her progress. The tricky part is respecting her need for autonomy while continuing to ensure safety. Sometimes she thinks she is capable of doing more than she actually can do. It's a fine line and I know I can never protect her 100%.
There were times when I was growing up that Mom had to take a leap of faith and let me take some risks. Now it's my turn to overcome my fears and let her take some calculated risks. So I will loosen the reins a bit...and pray for the best.