A friend going through a sudden and devastating illness with their spouse asked me what advice I would give on how to do illness. Their reason was simple, they wanted to survive, and they knew I had been through colon cancer with Londa in 2006, and with Brent in 2015. Two very different journeys and two very different outcomes. Both left me forever changed. My thoughts, by no means comprehensive or even medically sound, but what helped me survive or what I struggled with in surviving.
1. Keep routines as best you can. Feeding, medication, and relief/rest can all be a routine. Try to stick close to “normal” as you can but don’t fight the interruptions. Chart medications and feeding. (I know, I am a planner, but I found solace in having a plan, a routine, and knowing there was a path.) Your body wears down faster when you are not in a routine. Do your best to move back towards the center of normal.
2. Rest for the caregiver. Take care of yourself so you can take care of others. Be open about breaks, even if it is to sit still for a moment. Rest together if you can but do what gives you rest. All the energy and attention get spent, consumed on the patient, so make sure the caregiver has enough rest to refuel.
3. Comfort for the patient. Londa’s journey was much different from Brent’s. She was content to rest in bed or on the couch. Brent could not get comfortable in addition to battling cancer and being weak from chemo, he had kidney stones from the chemo. We chased everything we could for comfort, tried a lot of creative ways to sit, recline, lay down, and pace the floor.
4. Structure your decisions. Save the big stuff if you can until later. Pre-make the small decisions – like what to eat, not when you are hungry, but make a flexible plan for the week, and get stocked up. On the big stuff, don’t be afraid to go with what you know, make the best decision you can with the information you have in front of you. Sure, ask questions of the docs/nurses, talk about it, decide, then don’t second guess that decision.
5. Find joy. Laugh together, find joy in the absurd situations. Talk about the future – together, dreams, hopes – it will sustain you. Find strength in your unity, facing the challenge, pushing through, together. Even if hope is whispered, it is still hope.
6. Food. Get creative with what is needed to restore strength, help the body rebuild, even if it is liquids. We found so many ways to make spinach good when Londa had cancer and needed to come back from anemia. The is what got Brianna on her path of nutrition science and her love of food. With Brent, we found creative liquids, did some protein shake type of things that I did not enjoy at all, but they worked for him.
7. Talk, Whisper, whatever it takes, but share what you are feeling. Face worry with facts. Let out the frustration in a constructive way, talking it through, it is not fair, but it is life. Every circumstance does not have some special meaning or cause. Every conversation is not going to bring a miraculous change. You don’t have a life scriptwriter to make it all perfect. But, talking is practicing presence – being there, being connected. That means more than you can imagine.