Caregiving 101

There is a sculpture at the Albright Knox Gallery in Buffalo that I seek out each time I go there.
I have thought about it many times over this past year. It is a 6 foot  tall wooden sculpture of a toddler; on the tip of her shoe stands her 5 inch mother. The obvious message is that the mother's needs are dwarfed next to the needs of the toddler. I can envision a similar sculpture of a patient and his/her caregiver.

Neil and I have just returned from staying for 4 days at a Hospice House. The purpose of our stay was to provide a respite for me, but I realized after the first day that was not going to happen.Neil's needs are too great and Hospice is not intended to provide one on one care. That only happens at home.I realized this when Neil called me at home and asked me to call the nurses station and tell them he needed help. He could not reach the call button. He needed me to be there with him, especially at night. Right now he can do so little for himself; he was enormously relieved to have me there.  I slept on an airbed on the floor next to him.
The room was beautiful, the service immediate once you press the call button, but if you cannot see or reach it, you are out of luck. Also pushing it 15 times and hour does not make you the most popular patient.

While staying at the Hospice Hospice I had an opportunity to meet with the social worker, a lovely young woman who truly  understands the art of listening. As I spoke,she listened intently and every once in a while uttered the same annoying three words. I brushed her words aside and continued talking about our struggle with ALS and Neil's courage and compassion for others. She listened and repeated her three word refrain:
"What about you:? I brushed her question aside as if it were an annoying fly that had landed on my arm.
She is young and does not get it, I thought as I continued talking. "Can't you see," I said, "It is not about me, it is about seeing him through this."  "So you are putting your life on hold," she responded. Now she finally gets it, I thought. When I saw her later in the day, I thanked her for taking the time to speak with me. And she said , "I did not say much, but I enjoyed hearing your wisdom." It was then that I told her, "I was annoyed by your word, but they struck in my craw." Her eyebrows raised in surprise. "Which word upset you," she asked with concern.I told her that it took me a few hours after our talk for her "wisdom to penetrate my thick skull. But when they did sink in I had an epiphany . She had held up a mirror for me and
I realized the impact of what she had asked me.

I am a slow learner. I have been ignoring my needs, as most caregivers often do. The caregivers needs are dwarfed by the needs of the patient. I am the mother on the toe of the child. The next day, I went for a massage... a wonderful, relaxing, pampering massage, which kept me calm and soothed for the rest of the
day. After the massage, which was in a beautiful Victorian home, I walked out the door and was immediately drawn to the house across the street. What had actually caught my eye was not the house, but the art scape on the front lawn. It was an amazing sight. I stared, eyes wide, taking in the beauty. I resisted the urge to knock on the door and thank the owners for creating such a work of art. Instead I clapped softly to honor the gift the owner had given me and others who walk down this street. Such creativity and beauty to behold.

Marla was here with us this weekend. I watched her feed Neil, read to him , hold and stroke his hand.
Who is the parent and who is the child?. When did she become so wise? Things have come full circle in our lives. I have always been drawn to circles. I knew there was a reason.

Some thoughts for the day:  Listen more, talk less. Pay attention to the refrains. Be open to the wisdom of others, even when you do not like the message. Look for unexpected beauty; it lurks in strange places. Do not forget to honor yourself. Find what gives you joy and surround yourself with it.
Cheryl