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I have to start with a confession. When I wrote Passages, I was only in my mid-30s at the time. I thought, here I’m parsing the stages of adult development. I stopped at 50 because at that age I thought what happens after that age that’s of any interest? How quaint, it seems now, because we actually go through more passages from 50 to 90 than we do in our first adulthood – and much more important and challenging ones.
In all my Passages books, I urge Americans in midlife to really enjoy your second adulthood – to find your passion and revive old dreams you’ve put on hold. And then, all of a sudden, you get the call. It’s the call about your mom. She’s had a fall. Or it’s about your dad. He’s had a heart attack. Or it’s a call about your dad, and he’s run a red light and hit someone, but he doesn’t quite remember how it happened. You don’t know whether it’s his eyes or his mind. You’re not sure you want to know the answer because you’re pretty sure you aren’t going to win the argument over the car keys.
For me, the words began with, “It’s not benign.” I was sitting in a beauty shop, getting ready to go to a concert with my husband that night. I didn’t even recognize the voice. I said, “Is this Dr. Falco?” He said, “Yes.” He was my husband’s oncologist and he had taken a cyst out of my husband’s neck two years before.
I said, “But two years ago, when you did the biopsy, you said it was…”
And he said, “I know. The pathologist recut the old slides. It was cancer, and it’s back.” That’s how fast it can change.
I remember an entrepreneur friend of mine was giving a conference, standing up at a podium like this, and suddenly she was passed a note. Her mother had fallen and broken her femur and was immobilized on one side. And as the entrepreneur said to me afterwards, “You know, I had nine months to prepare for the birth of my child. I had about nine hours to prepare for the dependence of my mother.”
That’s how fast it can change. But it can also be a creeping crisis – the kind of crisis where mom doesn’t quite remember how to do things she always has done. Or, she drives to the supermarket and she doesn’t quite remember how to get home. She ignores the signs, you ignore the signs. Nobody in the family really wants to acknowledge what’s seems to be happening, and it may be a year or two before something really does go wrong. And then it’s a call, and then you go for a diagnosis, which still may be resisted by a parent.
In my case, after a few weeks of sharing the news with family members and googling disease sites, which can send you into a panic, and listening to conflicting diagnoses from different doctors, which is common in any serious illness, it began to dawn on me that my life was also radically changing. It took me quite a while to recognize it – months, in fact, as it does everybody, but I had a new role called family caregiver.
It’s a role nobody applies for. None of us seems to expect it even though it’s predictable in midlife or later life today. And, none of us is prepared. I was still in my 50s, working full time. My husband was just in his early 60s, seemingly at the top of his game, and suddenly, he was reduced to a patient in a Johnny coat.
I should have been better prepared because unpaid family caregiving is not only a predictable crisis today in midlife but it often happens more than once with in-laws, with a spouse, even sometimes with an adult child. Most family caregivers I’ve interviewed wonder: Why is this so hard? What am I doing wrong? Why am I so alone?
Well, you’re not alone. That is certainly not true. I was astonished to find that there are 65 million Americans who are performing this role and walking this very mysterious path through a fractured health care system – and trying to take care of a sick parent or another family member or support a spouse through chronic illness.
The first hurdle is that most people don’t identify themselves as family caregivers. As many women have said to me, “Well, it’s just what we do as a daughter, or as a wife.”
Today’s average caregiver? It’s not somebody who’s old. It’s a woman in her 40s, who usually has a child or more at home, and now has an older family member to take care of as well, and is working outside of the home.
Half of caregivers work full time. A third of family caregivers are men. Their role is usually more administrative and more talking to the other players on the team or provided long distance. But more and more men are finding themselves caregivers for their wives or commuting to visit mom and dad in another part of the country.
I walked that journey with my husband off and on for 17 years through four separate bouts with cancer. I can tell you that a presence of a family member to act as a fearless advocate is a matter of survival.
The secret of caregiving success took me a few years to discover, and it’s quite simply this. You cannot do it alone. No one can. None of us is a match for aging and disease. We must create a circle of care. By that I mean, we have to pick out doctors, nurses, social workers, and integrative medicine professionals who are willing to collaborate with us, work as a team, and who will speak up for the rights of the patient and the caregiver to help determine the treatment rather than just taking what medicine has to offer.
It also means growing a network of family members, friends, siblings, veteran caregivers who are your very, very best sources and resources, and colleagues from work. Even finding students from a local health sciences college who might be willing to volunteer.
But I find one common denominator in traveling around the country and having interviewed hundreds and hundreds of family caregivers. When the crisis hits, no matter how wealthy people are, they have no idea what to do or who to call. That’s why I had to write my book, Passages in Caregiving, turning chaos into confidence.
What I found is that this journey is not at all like the passages of adult life. It’s not nice and neat and linear. It’s circular. It’s chaos. I wasn’t able to organize that chaos until at a retreat for caregivers. I was asked to walk a labyrinth. A labyrinth isn’t the same as a maze. A maze is a circular path that’s meant to trick you with many different paths. A labyrinth has one continuous path that leads you to the center and then back out again, but you don’t know where you’re going. It has many abrupt twists and turns, just like caregiving. If you continue with patience and faith, it will take you all the way through and allow you to come back. That is my chief purpose in writing and speaking about caregiving. It is not to lose two people for one but to be sure the caregiver comes back.
I lay out eight common turning points on the journey. The first is shock and mobilization. You need to go with the patient to every consult because the patient won’t remember much, and you might not remember much either because it’s so traumatizing to hear diagnoses at the beginning.
You need to be a good reporter. Take a notebook. Or even better, a tape recorder because, surprisingly, doctors welcome your taping or taking notes because then you won’t call them back and bug them for answers they’ve already given.
You’ll probably see at least several specialists while you’re tracking a diagnosis and they often differ on treatment approaches. You need to choose the doctor that has the largest perspective and who is willing to be your medical quarterback. By that I mean a doctor who is able and willing to help you develop a care plan, assemble the care team, and then help you with the reactions to treatment, which may produce some pain or backfire. And you don’t want a doctor who’s just going to disappear after the initial treatment.
The other thing I could say about that shock and mobilization is don’t rush to a decision. It’s often we get very uptight about rushing and getting it taken care of as fast as possible, but you won’t make a good decision then. What you need to do is take at least a weekend – you and the patient – and play music or take walks or do whatever relaxes you and your mind. When you’ve done that, you’ll make a much better choice.
At some point, you go back to the new normal. Everybody else who’s put their lives on hold to help you during an emergency goes back to the old normal but yours is going to be different. You’re going to be vigilant. You’re going to be watching for anything that might suggest another problem and that may go on for months or even years.
At some point you will come to the third turning which I call boomerang. Another health crisis comes out of the blue and hits you in the back of the head. It might be the old illness roaring out of hibernation or it may be a completely unrelated health situation.
In my case, and in my husband’s case, it was that dreaded word in the English language, “recurrence.” Recurrence of head and neck cancer. This time, surgery threatened to inhibit my husband’s voice, and by then he was a teacher. It was also going to leave him with a permanent feeding tube – a gastrointestinal tube.
So he was fighting the fear he couldn’t continue teaching. He wanted to go right back to the university, six weeks after surgery.
The night before surgery, one of his circle of care, and he had about 12 people on his circle of care, colleagues that he’d worked with and whose careers he’d advanced, that man called and said, “Clay, I’ll be your voice.” And he did come out and live with us for that semester and live with us and team-teach with my husband until his voice recovered.
I wanted us to have as normal a life as we could, and we spent the first six months kind of hiding at home and not going out to eat because of this GI tube. Finally, I said, let’s just go to Paris for a week in June and change the whole surroundings. My husband said, “Well, how can you possibly make my meals? It takes so much. You have to simmer and then grind and then strain and blenderize. I said, I’ll get a blender that’s French current and we’ll do it in the hotel room.
Well, we got there. I did that first morning. I went out and foraged for a French breakfast and put the croissant and fruit and yogurt into the G-tube. He was still half asleep and then I poured in a cafe au lait, and I poured in another cafe au lait. He suddenly jumped up and said, “Let’s go to the Louvre.” We were off for a wonderful day.
Then, the end of the day came, and I said, “It’s going to be a drag to eat dinner in the hotel room.” So I foraged around for a restaurant that was unpretentious and found a nice cafe that had rotisserie chicken in the window. I took the blender in and asked if to meet with the chef. This nice, young French chef came out and I explained the situation and he said, “Madame, Monsieur cannot eat, has to drink his meals?” And I said, “Well, not exactly.” I explained about the tube. He said, “Quelle dommage! He cannot taste my cuisine?”
This was unthinkable for a French chef but he very happily agreed to blenderize the meal. That evening, we went to this cafe and sat and had a little my husband was able to smell my rotisserie chicken. The chef sent out two waiters to block the view with silver trays with a silver pitcher on either one, and they poured in his two courses very gracefully. They brought out sherbet for dessert that he could have a little bit on his tongue. We had the most romantic and wonderful evening for three hours in that cafe.
At the end of it, two different French couples came over to welcome us to Paris. When was the last time that happened to you as an American? What we learned from that experience is that normal is as normal does. So, if we could have the courage to do that in a French cafe, we could do it anywhere, and we did – in friends’ homes, in outdoor cafes.
My husband lived with that gastrointestinal tube for 10 years. Just imagine if we had been confined to quarters all that time.
