I encourage patients to blame me for shortening visit times, “the doctor said my visitors could only stay for 15 minutes as he wanted me to rest more.” I don’t mind being the bad guy, it is difficult for people to turn visitors away but at times they need to do it. Most people understand and will self-limit visits. Others are not so insightful and will outstay their welcome.
“They have come all that way to see me,” which is nice but some of the visits might be driven by guilt. Guilt from not having seen the patient for a long time. Whose needs are being met by the visit, the patient’s or the visitor’s?
Like petrol prices currently, energy is at a premium and people have to be careful how they spend their energy. Their battery continues to flatten and cannot be recharged again. The principles of energy conservation need to be applied to everything they do. Opportunity cost has never been more costly. Spending energy on one thing means something else cannot be done. This is a tough concept to understand unless you have experienced an illness that results in chronic fatigue, such as cancer, organ failure, and old age.
Life is not normal anymore. Life becomes full of trade-offs. The cruelty of life-limiting illnesses is they steal energy away but lead to appetite loss. Just when people need nutrition the most they lose the ability to derive the benefits of eating. Good symptom control can help a person feel more like their usual self, but cannot turn back time.
Simple activities of daily living become anything but simple for unwell people.
Losses accumulate day by day and each one is grieved. An ever-changing situation. It can be hard to catch up with, to know where you are, as things continue to change. Nothing stays the same for long. “Just let me have a small pause, a chance to find my bearings, please, just for a short time let me stop this rollercoaster ride. It’s going too fast and I feel dizzy. Please don’t waste my time or energy.”