The power of positivity

Studies have shown patients with a positive attitude do better in the longterm than patients at the same stage with a negative attitude. While the patient plays a large part in that, the task of nurturing and maintaining that attitude often falls squarely on the lay caregiver.

…the sickness and death part.

Outside of a hospital or nursing home setting, no one sees more of the patient than the spouse. If your attitude is negative, their attitude will rapidly decline. So no matter what, the caregiver has to remain positive. No matter what the news, we have to find a way to turn it into a positive–or at least keep smiling in their presence.

On the rollercoaster

This is not easy. After Jane and I first met with her Dana-Farber oncologist, we were very happy. Jane and Jen had hit it off immediately. They’d given her the first shot of Octreotide and she felt hungry on the way home. She’d been able to eat without pain for the first time in months. We had every reason to believe Jane would have a reasonable quality of life for at least a couple of years. And given the pace of medical advancement, two years might well mean something new to buy her more time.

…the caregiver has to remain positive.

A week later, we got the results of the scans of her heart. Both the valves on the right side of her heart were leaking. They were causing the swelling in her legs and abdomen. The serotonin created by the tumors in her liver had fried those valves. The prognosis destroyed all the good feelings of the previous week.

Shattered attitude

Jane was convinced those results represented “Game Over.” The cardiologist had said otherwise, but that didn’t matter. Jane’s positive attitude crumbled. My own mind was reeling. We’d gone from good chance to barely fighting chance in seven days. For the first time in many years, we had an argument about something other than the real issue we had to deal with.

This is not easy.

I ordered the wrong hamburger. I did it. I admit it. I hadn’t understood what she wanted and thought I did. My mind was as wrapped up in pain as hers. I’d spent the previous hour trying to ignore what I felt so I could buck her up. My brain seized up. Now, she wanted  divorce because I wasn’t listening.

Shared attitude repair

We came down off that ledge as we realized how scared we both felt. We both knew she still had a fighting chance, but the odds no longer felt in our favor. We both knew we could improve those odds if she could just stay positive. My job was to help her do that. That meant I had to turn down my fear so I could hear what she said and felt. She was terrified that I would desert her. She saw me angry only twice after that–and I wasn’t angry at her in either instance.

Jane’s positive attitude crumbled.

I did sometimes get frustrated and angry with her. But I made sure she never saw that. Over time, I became better and better at separating Jane from her cancer, in both my mind and my emotions. But it required a constant effort. Lack of sleep and constant worry didn’t help. Self-care, however, is a subject for another day.

Maintaining independence

Maintaining your own positive attitude–or at least the illusion of it–isn’t easy. You have to smile even when you are hurting so badly you want to scream. And it has to be a real smile that reaches your eyes.

…we realized how scared we both felt.

But that isn’t enough. Any cancer–any debilitating illness or injury–requires finding a way to let the patient maintain their independence as long as possible. Jane’s world shrank a little every day. We liked to go for walks, so we drove to a flat area and walked every day for as far as she could manage. We shared all the household chores, so I put off taking them over as much as I could. We did all the shopping together, and I kept taking her with me until she told me she just couldn’t do it anymore.

Into darkness

And every time she had to take a step back, I had to find a way to put a positive spin on it. Once they replaced the valves in her heart, I’d tell her, she’d walk again, do chores again, go shopping again. I reminded her we were partners–and that she would be doing the same for me when I got sick. In all of it was the promise that she would  be well again. In my head, I might have had doubts, but those doubts never made it to my heart–or to my face.

Jane’s world shrank a little every day.

Jane was still unconscious when they let me into see her after her heart surgery. They warned me what to expect when I saw her. But nothing can really prepare you for the dead white complexion or all the wires and tubes running in and out of the body. Yet even then, I knew I had to be positive and upbeat. A person in a coma can hear what is going on at a subconscious level. I talked to her, told her I loved her, held her hand. Then the nurse told me it was time for me to go get some sleep.

Positive unto death and beyond

I made sure I was there the next morning well before the first time her eyes opened. And I did everything I could to stay positive for her until her last breath. I walked her through three comas, talking to her and holding her hand. When she died I was telling the nurse the story of Jane’s life and the powerful, positive influence she she’d had on so many students’ lives.

A person in a coma can hear…

Even after her last breath, I tried to keep thinking and acting in a positive way. I don’t know how long after she was pronounced dead she was still aware of what was going on around her. I wanted her to know love even then.

The hand we’re dealt

The person taking care of someone with a fatal disease faces an endless rollercoaster ride of emotions. And those emotions belong not only to you, but to the patient as well. To a large extent, you end up putting your emotions on hold at times. That has dangers of its own that may require professional help when the ordeal ends. It has taken a long time for me to begin to feel anything approaching normal again. Three years passed before I could really cry again–and only now does it happen the way people would expect it should have after Jane died.

I wanted her to know love even then.

Rule #3: Do everything you can to keep the patient positive, even when it means never letting them see you sweat. Don’t count the cost until the dealing’s done. If you understand accept the marriage vows, this is the sickness and death part–and the love and cherish part.