The Legacy Of A Caregiver
Being a caregiver is hard work. And for family members who become care givers, it's even harder. They care and worry at the same time. Due to the amount of love, caregiving becomes all consuming, in the purest sense. I recently had the honor of witnessing such love and learned a powerful lesson about caregiving in the process.
As a couple, my husband and I have couple-friends that we see all the time, and couples that we see only once in a while. The wife of one of our "once in a while" couple-friends was diagnosed with ALS and nine months later went into Hospice Care in her own home. I immediately scheduled to stop by and visit. She and I had always liked each other but we didn't have a lot in common. She was 10 years older. She golfed, and I didn't. She spent half of her time in Palm Springs. This however did not make how I felt about her situation any less painful. I couldn't imagine what it was like, being in her shoes. I didn't know her well but I hurt for her and her family just the same. I brought a bottle of champagne along with me to have bubbles with her family while visiting, thinking this would make the situation seem less of sad.
I didn't need the bubbles!
From the minute I walked in the door I saw her smile, beaming at me and immediately brightening my day. She was so present and so happy to see me. She couldn't talk but her eyes said it all. We sat around and had a great time. An hour later, a bunch of ladies showed up to do the Rosary. It was their weekly ritual as close friends. They invited me to stay, and I did. I am no longer Catholic but I found doing the Rosary very comforting, in a meditative sort of way. Afterwards, we hung around and talked some more. They all asked me to come back. So I did!
For four months I went and did the Rosary and spent time with my friend — my beautiful friend who I had gotten to know through her eyes and smile. I wish everyone took the time to get to know each other this way. I got to hear stories about her from her really close friends and kids. I read her some of my writings which are now in this blog. In those four months her unwavering smile in the face of death and her appreciation of every moment had made her the most formidable caregiver in the room, both with care and worry, fully consumed by love.
When her husband mentioned how badly she wanted to go to the desert and how tired she was of being in that room, I put myself in her shoes and I thought of what to do. Since she couldn't go to the desert, I would bring the desert to her. I decided to paint her room. I am an excellent painter. I don't tape and my paint doesn't splatter. I promised her that in 8 hours, she would be in the desert. I would paint around her if I had to!
She chose one of my bright bold turquoise colors because it reminded her of the desert. As her husband and I painted, we listened to The Alchemist on audiobook, a parable about a shepherd wandering in the desert. The color was physically and symbolically transformative. Not only was the room refreshed and energized, so was she. Decorating was one of her passions! "We" moved the furniture around (under her direction through her eye-detecting computer). We hung her favorite piece of art right where she could see it because she had lost the ability to move her head from side to side. We made plans to move her bed by the window now that spring was around the corner. It was where her daughter had her bed when she lived at home, and that was her old room. That night we talked about setting our kids up on a date since her beautiful and smart daughter and my dashing, brilliant older stepson were both single, and in their 30s. This made her so happy, she smiled out loud! As I drove home I realized that I had been transformed into a caregiver by her love.
The next day, when I came back to do the Rosary, her husband opened the door and told us that she had began to leave us and we were going to losing her. He asked us to stay and do the Rosary with her one last time. Before I left I said my goodbye, the goodbye that I had come to say four months earlier, which now seemed impossible.
Two days later she passed away on her 40th wedding anniversary.
Several weeks later, at the service, I learned more about her. I learned that her friendships were her treasures and that through her life she had always been a formidable caregiver. Afterwards, one of her kids thanked me for painting the room. She said that the room where her mother had been for the last year would have been unbearable to look at, let alone walk into, if not for the beautiful color her mother had chosen. The color had painted over the room's association with the disease and the room became a beautiful sanctuary where her mother rested until she transformed herself. I wondered if she knew she was leaving soon and this was her last act of caregiving, as a mother, leaving this room and her family in a better place. Caregiving was her legacy, her alchemy, and my color had been transformed into a caregiver by her love.