Setting Boundaries - A Lesson from Lilly

Given a choice, I would prefer to be named Ronda Peace instead of Ronda Jean. By nature, I am a bona-fide pleaser and dyed-in-the-wool caregiver. I like tranquility, not tumult. I most assuredly do NOT like conflict. In my youth, I took extreme measures to avoid clashes making me an inviting target for stronger, controlling personalities. I managed to get myself into some very unpleasant predicaments because I did not know how to set healthy boundaries.

On my march toward the seasoned years of my life, I have resolved to master the skill of setting boundaries. Between you and me, I like doing that about as much as I enjoy a root canal, or giving unmedicated birth. Sometimes it takes a decided act of my will.

Which brings us to Lilly*, one of my many favorite residents at Sunrise Senior Living at Pinehurst. She gave me a crash course in the proper setting of boundaries. She also introduced me to an uncomfortable internal dilemma with which I wrestled greatly. I've set a rather high standard for myself in relation to relationships. Is it possible, I wondered, to set boundaries while at the same time living out that standard?

Not that I'm always 100% successful, but I try to be a safe person, and to honor, uplift and love those I interact with on a daily basis - my family, my friends, my co-workers, my residents. Lilly challenged my "try to" every single day. She knew exactly which of my buttons to push.

Different people respond differently to the progression of Alzheimers. Lilly took on the demeanor of a five-star General whose orders had been contested.  She became increasingly cantankerous. Lilly had a will of iron and a mulish streak a mile wide. She would fold her little arms and dare you to take her on. Retreat did not exist in her vocabulary. Challenging her ensured a battle. Choosing not to challenge her meant that anyone in close proximity suffered. Moderating the skirmish sometimes fell to me. It was a lose - lose situation in my mind. Either way somebody was going to be unhappy.

I tried to strike a balance, to pick and choose my battles with Lilly.  Some days I had to step back, take a breather and pray hard - really, really hard - for patience. When she took ownership of the popcorn, there was no turning back. This one I had to win.  That melee stretched on day after day, no end in sight. "No, Ms. Lilly, you can't keep all of the popcorn for yourself. It's for everyone." "No, Ms. Lilly, you can't restrict when and how many bags of popcorn are taken." "No, Ms. Lilly, you can't talk like that. It's not kind." "No, Ms. Lilly, you can't use your hands to bag the popcorn."

Some evenings, after a particularly rough day, I logged out for the evening with a heavy heart. There was no joy for me in setting boundaries with Lilly. I felt that in doing so I was violating my standard for relationships. It did not feel loving at all.

After she was transferred to the “Reminiscence Neighborhood” I realized just how much a part of my life she had become. I truly missed her - battles and all. I hoped that when her memory was fluid, she would remember the good times instead of the bad.

Pinehurst has one of the best memory neighborhoods around.  Our Reminiscence Coordinator and her dedicated caregivers have created a home for those suffering from dementia and Alzheimers disease that is the finest around bar none. Their sole purpose is to create pleasurable days for those in their care. The atmosphere this phenomenal team has set for their beloved residents is fun, calming and designed with their best interests at heart. They diligently care for their charges 24-7.

Nevertheless, the transition was a rough one for Lilly. She was unable to accept the rapid changes coming at her. She wasn't the only one hurting, her daughter struggled, too. She would have done anything to spare her mom the unwanted journey she was on, but there was nothing she could do. It ripped at her very being. She knew how much I loved her mom, so from time to time she would stop by the front desk with an update. Most times I could say nothing more than, "I'm so sorry," and fold her in my arms.

As Alzheimers progresses, there are increasingly difficult challenges to face. In time, it became evident that Lilly needed a level of care that Pinehurst was not equipped to offer. The day she was taken out by ambulance was a low spot for me. I wanted to cry as I watched the paramedics wheel her from the elevator.

She looked so tiny in contrast to the full-size gurney they had her on. Her petite frame sat upright; her little white-haired head peeped over the blankets the paramedics had tucked snuggly around her - as much to keep her from bolting as to keep her warm. I knew it would be the last time I would see her, ever. Did she remember me? Had I made a difference in her life? More importantly, did she know how much I loved her?

My mind flashed through the events of the previous months. To be sure, there had been lots of hugs and pats and “oooo's” and “ahhh's” over her color-by-number artwork.  The day she sat at my desk and let me calm her by rubbing lotion into her hands was a sweet memory. But interspersed throughout were recollections of the necessary scoldings, the no's, the boundaries I'd had to set with her. A myriad of emotions flooded my heart. This boundary setting is not all it's chalked up to be.

The paramedics wheeled Lilly toward the front desk enroute to the front entrance. Once even with the desk she had a moment of clarity. She turned, holding my eyes with her own. For a brief second there was no one else but Lilly and me. My heart broke under the burden of "what-ifs" and "I should haves." Then she turned away addressing the paramedic at her side.

She spoke just six simple words, the last I'll ever hear from her lips. But in the speaking, she told me that everything was all right between us. Her words washed over me like a healing balm, wrapping me close and holding me tight. In that instant, everything she had unwittingly taught me came into focus. I finally understood that it is possible, even necessary, to have healthy boundaries if one is to be a safe person who honors, uplifts and loves.

What were those six simple, life-changing words?

"She's the one who loves me."

Thank you Lilly for touching my life! You challenged me daily, forcing me to wrestle with an important concept I needed to learn. I'll never forget the lesson you taught me. I'll never forget you.

*not her real name

  © Ronda Knuth