A Year in Review: Patients’ Stories or What They Would Have Told You if They Had Been Able to
‘Tis the season for retrospection. I now have close to 300 hours of direct-care experience and my practice is building up. I could go on at length myself about what this year has meant for me,
but instead I think I’ll offer for your enjoyment a few short stories of powerful moments from 2017 so read on and enjoy…
ROAD TRIP: Tom had a mild cognitive impairment and a heart condition; he had been placed in a nursing home against his will. I visited him once a week for about 4 months. By my second visit, the friendly Irish man and I had bonded. Every week, I would see his face light up at my arrival. We would chat and I would leave by giving him a big noisy kiss on the cheek and he would give me the biggest smile with a little blush in return. One day, I found him in bed, upset at life. It was his birthday; his family had visited and he had mixed feelings about it. I asked him how his birthday was going so far; he grimaced. Then he noticed my motorcycle helmet, and asked if it was mine. “Yes, it is, Tom.” Suddenly, his facial expression changed and he started talking about his various bikes, "Oh Gosh! That red one..." and happy moments he had had as a young man and as a father. I had never seen him so alive! It was the first time he had talked to me about his children or about his business as a bar owner, a place of friendship and happiness. My showing up with a motorcycle helmet brought him back to happy times on his birthday. I left him in a happier place than I had found him.
WORDS FROM THE PAST: I was once called to the bed side of a French Canadian-born lady. I knew nothing about her, and saw her only once; a nurse had suggested the patient might benefit from speaking French. I found Aurore asleep in her nursing home room. I sat down next to her and started quietly saying her name as a way to connect. She had been non-responsive for the last few days and had stopped eating, the nurse on duty told me. I spoke English to her, as there was no conversation possible, I thought. My speaking softly did not arouse her and I was not sure what to do. I could have left but decided instead to shift to French, calling her name again and saying how beautiful her name was, and how I personally pictured the awe of dawn. I talked to her as I was telling a bed-side story to a child, gently and respectfully. Without warning, she opened her eyes and looked at me...I smiled. She kept looking at me for a minute or so, and in the meantime, her daughter entered to room. The daughter was taken by surprise, first to see me, someone she did not know, and then to see her mom awake. The moment felt awkward. I introduced myself as the hospice volunteer I was that day and left them both alone to connect. It turned out the daughter could not speak French. Aurore spent the next hours with her daughter by her side, and died peacefully and a little more content the next day.
LIKE A FLOWER: Mary had severe dementia and had already spent many years in her own happy bubble. She had been a social worker and had helped a lot of people in her life. For the few months I visited her in this facility welcoming patients of all dementia levels, I always found Mary to be calm, sweet and polite, or asleep. The first time I met Mary, she was bent with her head over her belly on her wheelchair, deeply asleep. I sat there next to her for about 20 minutes, holding her hand, with no response, until I started looking at her beautiful hands closely. I wondered if she had been a gardener. So I asked her. Hearing those words, Mary started to unfold her body like a flower, looked up and gave me the biggest and sweetest smile I had ever seen. Yes, I am a gardener, she said! And she went back to her own world, still smiling peacefully.
A BREAKTHROUGH: I knocked on that door probably for 8 weeks in a row, and it was “never a good time” to visit with that lady. Eva has Lou Gehrig's disease (ALS). Few people in the facility and from the hospice team had been able to connect with her for the past year. One day, I managed to introduce myself to ask if we could agree on a time for my next visit; we agreed on 4 o'clock on Thursday. I showed up at 4 o'clock that Thursday and Eva finally decided I could be trusted. Using a small computer she operates with one finger from her left hand, we started to talk. I was the first person Eva had opened up to in a very long time. I was able to help her be heard and get her needs met, as she had already lost her voice, her ability to eat without drooling, her ability to move, etc. But more importantly, she could tell me about who and what really mattered to her: for instance, she enjoyed sitting in the sun, reading. So that’s just what we did – all summer long. Last week, I asked if she’d like me to visit her on Christmas day with my dog Lulu; you should have seen that smile! So today, I visited Eva and I watched her successfully laugh and cry of emotion as my dog, which was politely sitting on her paralyzed body, gently leaked her cheeks and neck while wagging her tail…Merry Christmas, Eva.
MENTOR UNTIL THE END: I had the incredible privilege to meet and get to know Edith when I did. Edith was a scholar. She had moved to the US from Europe nearly 40 years ago and had no family living here. Two weeks before I met her, she had been diagnosed with rapidly advancing terminal cancer and felt hopeless, yet her personality was still strong! At 83, she was brilliant, yet warm, funny with a touch of sarcasm, and remarkably open-minded. It did not take her very long to trust me, but she did build that trust by testing me. She did in such a subtle way, it is indescribable. For weeks, I made sure to follow through with everything we discussed, and she did her part too, meticulously. It felt like we were collaborating on an academic project. She made it so simple to work with her – she certainly knew how since she had been a mentor all her professional life. We had some serious fun times together: I recall for instance her poetic description of what it felt to be in a hospice facility during family visit hours “it looks like we are at a country-fair!” She literally felt so entertained by analyzing others, it helped her deal with her own emotions. Everything she said or implied was so profound, yet she knew to enjoy every little thing of life. One day, I got her a special prescription for lunch. Earlier, we had had a funny discussion of whether French wine or Italian wine was the better, so for this lunch I brought her a quarter-bottle of a French Bordeaux – a Lussac-Saint Emilion. In true epicurean fashion, she spent the rest of the afternoon sipping her wine looking at the water views! It left such an impression on everyone who saw her that day. A few days later, I was with her as she passed away, and she did it with grand class. As I was holding her hand, I felt she was the one helping me. I think that’s what she wanted anyway, teaching me her last lesson. So her wishes were granted and my job was done.
BOUNDARIES & FRENCH PASTRIES: The first day I met Rich, he was polite, formal and rather distant. The second day, he asked me to sit down and questioned me about my credentials – I was there as the volunteer member of the hospice team. With a gentle smile on my face, I watched him treat me like I was interviewed for a secretarial position. It was a way for him to regain some power and dignity, so I happily played my part. It’s however very important to set boundaries. So as he kept probing, I kindly asked if he wanted to know the title of my dissertation. It was apparently a very good move, because he finally relaxed. That was my "Open Sesame" and Rich did open up to me. He did not tell me anything about the great architecture he was renowned for. No, he started telling me about his son, how much he loved him, how proud he was of their relationship. At my next visit, I sat down with him and his wife over lunch and had coffee with them. They talked to me about their trips to Europe and their love of French pastries…So a few days later I showed up with French pastries; we made tea and had a wonderful time. Later on, I had the opportunity to share these happy moments with his son. This was one of these rare cases when family and hospice team worked together. The pleasure was obviously mutual, because when I ran into Rich’s step daughter a week or so after Rich passed away, she recognized me under my motorcycle helmet and insisted to give me a hug as a thank you for the love and support our team provided for the family!
I hope you enjoyed these short stories. In the meantime, enjoy the holiday season. I can hardly wait for what 2018 has to offer of Peace of Mind, Knowledge and Compassion. Feel free to check out my updated website https://www.agentlerparting.com/. And please don’t hesitate to leave me feedback.
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