(Editor’s Note: This is the first of a series of posts on practical advice for caregivers. It specifically applies to spouses dealing with NET cancer, but should be broadly applicable to anyone facing a longterm illness or injury. Keep in mind, however, that I am not a doctor, psychologist, or therapist of any kind. I’m talking here from my personal experience, nothing more. Don’t take this as gospel as your situation and what you experience may prove very different. I make no guaranties about the soundness of what I say here in your circumstances.) 

Some background

I come from a long line of caregivers. My grandmother often was not home when we came to visit. If an elderly neighbor needed longterm help, she took on the task, often moving in with them for weeks at a time. I never got to watch her with those people–I just knew that she did. But I often turn to that memory when I need advice.

People don’t know what we need…

And I am the oldest of six children. I’ve changed the diapers on all but two of them and taken responsibility for the actions of all of them at one time or another. So when Jane got sick, I thought I knew what to do. All of that helped, but it wasn’t enough.

Theory vs. practice

People have written books on caregiving. But frequently, those books focus on caring for aging parents, not a loved one as close as a spouse or a child. In addition, the writers sometimes work from theory rather than experience. They do the best they can with the knowledge they have, but sometimes the advice is too abstract to be useful.

…I thought I knew what to do.

And people dealing with critical illnesses, like NET cancer, often don’t have time to read and digest an entire book. The immediate needs of the patient constantly come first–leaving little time for much else. My purpose in this short series of articles is to give practical advice from my personal experience with my wife’s NET cancer.

Advice for the beginning

“He says it’s probably cancer,” my wife said as she got out of the car that warming July morning. I’d wanted to go to her doctor’s appointment with her, but she’d firmly rejected that notion. I think she feared my reaction when she got the news. He’d told her alone, then sent one of his staff in who had dealt with cancer to talk with her and hold her hand.

…those books focus on caring for aging parents…

Letting her go to that appointment by herself has haunted me ever since. I tell myself I should have insisted. But I also know she didn’t want to have to think about me and my reaction when she got that piece of news. She wanted space to digest that news by herself before dealing with anyone else–including me. But it was the last time I let her face a doctor alone.

Balancing act

Being a caregiver, for me, was a constant balancing act on multiple levels. Jane had times, especially at the beginning, when she needed time to process what she heard and experienced. She needed me to be quiet and let her think. Sometimes she needed to be alone to do that. She also needed times she could simply talk to me about things other than cancer. Sometimes she needed me to pretend nothing was wrong. And there were times she needed to be held. I tried to honor those needs, as well as the cancer.

‘He says it’s probably cancer.’

But reading Jane’s moods–even after 21 years of marriage–wasn’t always easy. The cancer made it even more difficult. Occasionally, she retreated into herself so completely that all facial expression and body language vanished. It bewildered me at times.

Seek professional advice on communicating

In talking with other caregivers since Jane’s death, I’ve come to realize all of this is pretty common. Not that that helps much. We rely on all kinds of cues when we communicate with those we love. We don’t react well when those cues suddenly vanish–and that creates tension in an already difficult situation.

It bewildered me…

Part of me thinks spouses facing a serious disease or injury should immediately be placed in counseling with a qualified therapist. Jane would never have agreed, even had I, or a doctor, suggested it. We were both very private and independent individuals. Bringing another person in would have invaded that in ways we both would have had trouble with.

Sharing facts and feelings

That doesn’t mean it wouldn’t have helped. In retrospect, had we looked for and found the right person, it might have made some things easier. Instead, we did what we so often did: relied on our mutual willingness to talk without boundaries between us. We were always good about talking about what really bothered us. Neither of us let the other hide behind false issues.

Jane would never have agreed…

I think the willingness to share feelings is a real key to being both a good caregiver and a good patient. If you can talk to each other without a third-party, fine. But very few people seem able–or eager–to do so. Key piece of advice #1: ask for help when you need it.

Best advice: ask for help

And you are going to need help. Lots of it. And that help will become increasingly more difficult to come by as the weeks turn to months and the months–particularly with NET cancer or any longterm illness–turn to years. People will be there in droves at the beginning. They will thin as time passes. At the end, only your real friends will still stand with you. Some of those still there may surprise you–as well as who is not.

…ask for help when you need it.

Regardless, people won’t know what you need until you ask. Jane had a real battle in the hospital the night before Thanksgiving. She’d come out of a coma the day before and lost her mind for a while. She was so bad, the doctors sent me to another place in the hospital for the night while they worked on her crashing blood pressure and hypoxia. I have no idea what happened that night. They never told me.

You don’t know until you ask

But when I came through the door the next morning, there was love in her eyes–and a determination to live for as long as she could. She was afraid, though. There is a tradition in her family you wake up for a short time before you die to say your final good-byes. She wanted to see her father and sister. They couldn’t drive to Boston. It was Thanksgiving Day.

…you are going to need help.

I called a friend who said he’d skip dinner with his family to bring them up. Another friend cancelled her dinner plans to come with them. I’d been uncomfortable asking. But they didn’t hesitate. They’d been waiting for that kind of call–but they needed me to say what we needed first.

What we think we know vs. reality

People don’t know what we need unless we tell them. That was one of the hardest things for me to understand. If we are married long enough, we often know what the other needs without asking. We get in the habit of thinking people know what we need. The truth is, we don’t always know, under these circumstances, even what our other half really needs at any given moment. And neither do they.

 I’d been uncomfortable asking.

Your friends will have even less clue how to help. You have to swallow your pride and ask. More often than not, they will surprise you in a positive way. But not always. Then you ask someone else. You don’t have time or energy for anything else.