Palace of Care – Q+A

Photo by Ilja Nedilko on Unsplash

The reason your legs and tummy are swollen is because of your illness. When you are really unwell the body is under great strain and isn’t able to produce the protein that your body needs. Amongst other roles protein keeps water in your blood supply. When you don’t have enough protein in your blood the water will leak out into your tissues. That’s why your legs and abdomen are so swollen. This is not the kind of swelling which will respond to medications that make you lose water. They would make you lose water from your blood supply leading to dehydration but the fluid in your legs and abdomen would not decrease. Massage can help shift the excess fluid if the problem was blocked lymph glands, but it is unlikely to help the kind of swellings that you have. That being said it can be soothing and can make you more comfortable so I would encourage you to have gentle massages.

We try to be flexible when it comes to visiting hours here. We know that your energy levels are low and that you feel like you need to be at your best whenever your visitors are around. This can be exhausting. I would recommend that unless it is the people closest to you visiting that other visits be limited to ten minutes. You can blame this on me, “that nasty doctor has limited visiting times.” Your energy is a precious and scarce resource. We’re keen to help you save your energy for whatever you feel like doing. Please let us help you. We’re keen to try to make life easier for you if possible.

I think therefore I am? – Scarce Energy

Photo by John Cameron on Unsplash

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.”