Spring Will Come

Today we did a three-mile walk with hills. We were huffing and puffing but moving at a pretty good pace. As we made the turn to come back home I said to John, “Do you remember that summer after your first surgery; you could not walk from our front door to the car.” And he remembered.

It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength so fast. He looked the same but could not walk at all.

Now we hike and do hills and we push each other on.

That summer of chemo changed so many things. No movies, no malls, no grocery stores. Even a tiny bit of air-conditioned air caused excruciating pain and frozen breath. He couldn’t even look in the refrigerator so I had to learn to cook. That was one of the gifts of Cancer Land—I became a cook. But that summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a dinner out. So many things changed. We grew from them and with them. I know that isn’t everyone’s path. Cancer can end a relationship as well. It can be too much. And no one gets blamed for that. It can just be too dam hard sometimes. So what I feel tonight is gratitude and grace.

The Literature of Caregiving: Tom Lubbock & Marion Coutts

It is not often that we have both patient and caregiver as extraordinary writers. And while

often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death.

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he articulates what language means and what it means when a writer is losing language. You would think: morbid. But no.

These books are each slim and carefully crafted. These two are such fine writers so I encourage you to buy and read both, side by side. See how each one describes the same day. What does it look like to him? To her? How they see the world includes what they see, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said,

‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands."

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love.

What We Don't Talk about When We Talk about Aging

Those of us who work in caregiving or aging services or healthcare do a lot of talking. We talk about medication and money and housing and hospitals; we talk about caregiving and caregivers and schedules and finances. But the thing we don’t talk about enough is talking.

We rarely talk about how critical talking is in tackling the issue of aging with dignity. Of course we say the words; we say that seniors or people with chronic illnesses must talk to their families, and we offer brochures that tell people what to tell their kids and what

children should ask parents. We remind caregivers to speak up and ask for what they need.  But then we quickly move on to other topics because, we too, are uncomfortable with talking.

Many of us have suggested that families use holiday gatherings to start the conversations about things like living wills and how they want to live later.  But we forget to mention how many times you have to try to have that conversation before it “takes.”

Talking is where those of us who work with an aging or ill population fail. Despite the many fall prevention workshops, we who work in aging are falling down on the job because we are just not talking enough about talking.

What I am talking about is talking about feelings---messy and uncomfortable feelings. The realm of emotions is gray and most of us prefer black and white. We’d rather talk about aging protocols and best practices and we can get very worked up about Medicaid and nursing homes, but we regularly avoid the one thing that will make the biggest difference in the dignity of someone’s life: Talking and listening and then talking some more.

“Aging in Place” is the buzzword. At a recent workshop I listened to a panel discuss the services available, the options for money and housing and caregiving help. But the sad truth is that none of those strategies are viable unless spouses and parents and children are talking about this hard stuff frankly, directly, and repeatedly.

The bottom-line of aging in place is this: You must talk to the point—and well past the point—of being rude, boring and annoying. And that is not easy for a family member to do unless staff and coaches and navigators back them every step-- and every word-- of the way. 

Denial, as they say in Twelve-step recovery, is not a river in Egypt. It is the central issue in illness and aging. We’re Americans; denial about aging and death is built into us. We need to be frank about this: The only healthcare fact you need to know and that all research confirms is this: You will age; you will then become less able and then you will die.  Given that, who do you need to talk to?

These conversations are not easy or comfortable, but if you want to have a say on the last years of your life then start talking about that now. There is no time for family planning in the middle of a crisis. 

Here is what I learned from years of being a family care giver: You think you’ll get some kind of warning; you think aging will happen gradually kind of like the way your hair goes gray, a little at a time.

But no. It’s very fast. One phone call, one bit of blood, one screech of the tires, one slow motion slide as your foot goes the wrong way on a scatter rug. Your life-- and the life of every family member around you-- is rapidly and drastically rearranged. Yep, you meant to talk about healthcare proxies and end of life measures and where you would like to live if you ever got disabled. But…

  

The family chat must happen long before you meet your discharge planner—and since we don’t know when that is going to be: You have to talk now. Discharge planners are amazing professionals. Their job is hard logistically and emotionally, but they can’t facilitate the conversations that we should all be having now with our family and our friends.   

Those of us who work in healthcare and human services are at fault too. We keep talking about making houses aging-friendly and “patient navigation”. But no one will ever get the benefit of those if they don’t first talk and talk and talk to their family. 

Shame on us for not insisting that every person with a serious diagnosis have those talks.  Anyone who works in healthcare and human services should be saying, “Did you talk to your kids?” when they get a call from a senior, and “Have you sat down with your parents?” every time we get a call from an adult child asking about services. And we should not accept excuses like, “I can’t talk to my parents about their money.” Yes, you can or you’ll be talking about it with a complete stranger in the cramped office of the nursing home you didn’t pick, and don’t like. 

One more big thing we need to say is, “Never say never.” At some point a family member will be your caregiver.  Start talking now about who that might be and how you can make this work best for them. If you are lucky and you plan ahead you can have a say in this, otherwise no. Don’t waste time joking or disagreeing. Who will it be? 

If you had to choose which of your children you’d prefer to live with be sure to talk about that now while everyone is calm and has time to think about it and then come back and talk some more. Married children need to talk to their spouses and their kids and even their in-laws.  It can take several conversations to get through all those layers.  If there are siblings there will be sibling issues. They don’t go away because we get older. And even the best families have to tread this tricky terrain.

At the end of the day—or the end of your life --the issue is not nursing homes or retirement communities—but what you didn’t talk about. And that is where dignity will live or die.

It’s not the ramps and rails that will derail a family; it is the emotional issues we would-- literally --rather die than talk about.