For the next 3 months, OK Now What? A Caregiver’s Guide to What Matters will be posting pictures of the OK Now What vintage Red Western Flyer bicycle on our blog and on Facebook. The first person to correctly identify the location will receive a signed copy of the book and a coupon to Dunkin Donuts. It is, after all, a relax with a cup of coffee book — like sitting with a friend, who has the answers to your current dilemma.
The 6 winners will be eligible for the grand prize, check our website and Facebook page to stay tuned!!
After the horrific attack in Orlando, all our senses are on alert. But if we only watch for potential threats, we miss the opportunities life presents to connect with and understand each other and to come to civil, collaborative terms with our differences instead of increasing destructive divisions.
Tommy, Can You Hear Me?
In The Who’s rock opera movie, Tommy, Tommy is a “deaf, dumb and blind kid” who masters the pinball machine by feel (and smell according to the lyrics). Sometimes, we have ‘deaf, dumb and blind’ family members. One woman diagnosed with lung cancer several months ago felt surrounded by Tommys — namely her husband, sons and sisters. Why? They had refused to respect her decision not to take chemotherapy and to let the disease run its course; they were acting deaf, dumb and blind to her need for their support for this difficult decision.
The lung cancer diagnosis was a real blow. She had successfully conquered breast cancer years before, but the battle left her with painful memories and physical and emotional scars. When she was diagnosed with lung cancer, she sought expert opinions and realized that investing in weeks of chemotherapy was not going to offer the return she had hoped. After considering her situation, she decided to just ‘let it go.’ Unfortunately her husband, sons and sisters didn’t agree. They wanted her to ‘fight until the end.’ They refused to consider — let alone support – her decision, which had left her feeling isolated and alone.
She had come to the hospice center after two days of intractable nausea and vomiting. The center gave her an anti-nausea drug, which made her retching a little better, but after several doses she refused it because it made her ‘feel loopy’. Instead, she clung to a large basin with a box of tissues by her side. As I talked with her about the benefits of this drug, I noticed she was no longer making eye contact and was holding her head down. She was exhausted from two days of vomiting. I encouraged her to embrace the drowsiness and allow herself to sleep, giving her body some rest, but she continued to avert her eyes, so I quickly changed the conversation by suggesting a social worker. She said she didn’t feel like talking, but when I offered the chaplain, she looked up at me, and I saw a little spark in her eyes.
But when I came back with the chaplain, we found her sister standing next to the bed with a wheelchair. The patient was quietly apologetic saying her sister just arrived (unannounced), and asked the chaplain to return in two hours. The sister chimed in with an authoritative tone: “We have to do an assessment.” I wasn’t sure exactly what that meant, but watched as the sister wheeled the patient into the courtyard for ‘the assessment’. Forty-five minutes later, I found the patient back in her bed; her sister was gone. She appeared totally drained with heavy eyelids. She declined to meet with the chaplain, but I told her I would have the chaplain stop by and arrange another meeting time.
After twenty minutes the chaplain reported she had had a very intense talk with the patient, who had shared her frustration and sadness with the lack of support from her family — particularly her husband. This left her feeling alone. She asked the chaplain if she was being selfish by not taking the chemo. The chaplain read a psalm from the patient’s book, out loud. The patient said she had read that psalm many times but never considered the words in the way the chaplain read them to her. I stopped in after the chaplain left and noticed her eyelids were not as heavy as before, and her face seemed a little brighter. She wanted the door closed to take a nap.
As I closed the door, I thought about the idea of her decision being selfish. One could argue the family was being selfish in not supporting her decision, though maybe their attitude comes out of fear and loss of hope if she doesn’t at least ‘try’; they love her and don’t want to lose her. But WAS her decision selfish? Clearly she loves herself enough to allow the disease to progress and deal with the symptoms as they arise. In advanced lung cancer, I’ve seen symptoms such as shortness of breath, coughing, fatigue, loss of appetite, chest pain, and congestion, but I have never seen intractable nausea. Her family’s lack of support left her literally sick to her stomach – at least, that was my interpretation.
Through the years, I’ve seen many patients slog through chemo and other treatments to keep from disappointing their families and loved ones. But many of these same patients would, prefer to forgo the ordeal and instead deal with symptoms of the disease’s progression. How do I know? Because patients share these feelings with health care staff, especially when their families are unwilling or unable to hear, see and understand their wish to ‘just let it go’. These patients who are ‘fighting’ for their loved ones’ sakes tend to be physically miserable, emotionally drained and spiritually wounded. This woman was brave enough to stand behind her own decision in spite of her family. She clearly heard the prognosis, was able to see her future with and without chemo and was able to make her decision known. Unlike her family, she did not sit ‘deaf, dumb and blind’ to her reality. She made a choice that made sense to her, even though those she most needed support and comfort from were fighting it. With her broken spirit somewhat renewed she asked the chaplain to set up a meeting with her husband and sons. Hopefully someday they can appreciate her courage.