Friday, February 5, 2016

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.

Sunday, January 31, 2016

Now Let's Talk About Work---and Cancer

Yes, we talk a lot about cancer and love, cancer and marriage on this blog. But what about cancer and work? It was Freud who said that man's two great concerns are love and work--so too in CancerLand.

Did you know that 44% of people with new cancer diagnoses last year were folks of working age?
Did you know that 20% of people with cancer report work limitations affected by cancer-related issues?
Did you know that almost 1,000 people made EEOC claims based on cancer discrimination?

And I bet you did wonder--at least one--if you were being treated differently at work because of your cancer.

There are many ways that cancer affects us at work: We use up our sick time, we lose productivity when we don't feel well, we need a lot more schedule flexibility for chemo, radiation and just so many more doctor's appointments. We also have to say "No" to overnight assignments or conference travel or promotion to positions that involve longer hours and multi-city assignments. So do you share? not share? lie sometimes? Much discernment is required.

A great resource is the national nonprofit organization: "CancerandCareers". They are a group of both professionals and volunteers who can answer every cancer and work related question: financial issues, EEOC, FMLA, and how to talk to the Human Resources Department, the Finance Office, and your boss. They also have great advice on how to interview for a new job--in your current company or at a different organization.

I'm putting the link right here. Do share this one with your friends, and any coworkers with cancer and maybe even with your HR Department if you want them to get much better at helping colleagues in CancerLand. Here is the link:

Monday, January 25, 2016

What Does Love Look Like in CancerLand?

Most of us have a sense of where boundaries are in a good relationship. It’s always imperfect, but we have the idea of balancing dependence and autonomy. Our boundaries are permeable and we can go away and come back, and we can give our partner both space and attention as needed.

But then cancer arrives and we get muddled. Our boundaries—and our relationships --go to hell. Sometimes we are praised as good caregivers even as we are sacrificing the autonomy that made the relationship great pre-cancer. What’s a wife/lover/girlfriend to do?

How do we keep a relationship strong when one half of it is very weak? How do we keep a
separate sense of identity even as our partner, medical professionals and maybe even our friends are celebrating (or nudging us toward) a dependent role as caregiver?

It is not easy. But I knew early on that I wanted more than John’s physical survival; I also wanted our sexy, happy, and intellectually stimulating marriage to survive. And that meant finding the line between caregiving and codependence.

Here is a quote that I have to read again and again. It’s a great reminder and antidote to the “teaching”, controlling, and all manner of codependency I am so tempted to tumble into. This is Scott Peck on genuine love: 

“A major characteristic of genuine love is that the distinction between oneself and the other is always maintained and preserved. The genuine lover always perceives the beloved as someone who has a totally separate identity. Moreover the genuine lover always respects and even encourages this separateness and the unique individuality of the beloved. Failure to perceive and respect this separateness is exceedingly common however and the cause of much suffering.”
--M. Scott Peck, MD
I do not want to be exceedingly common.

Sunday, January 17, 2016

How Not to Say the Wrong Thing

Maybe you saw this fabulous article making the rounds on Facebook. OR maybe someone sent you the link or handed you the clipping. (In that later case read it twice because maybe there is a hidden message there for you.)

But I'm posting it here because it is simply smart and funny and true.

In CancerLand we know how it is to be on the receiving end of, "Dear God, did she really just say that?" kind of comments. But we also want to be careful that we are not the deliverer of such things either. And, given the stress and distortion of cancer, it's possible that out of love or pain or fear, we might say the screwiest things.

This fabulous article by Susan Silk and Barry Goldman  reminds friends and loved ones how to, as the title says, not say the wrong thing. But it goes to a place none have gone before--it adds this diagram to help you
determine whether you should say that thing you want to say to this person. Or maybe you can say it to some other person instead, or maybe just shut up and write in your journal or have a good cry.

The bottom line is: "Comfort IN. Dump OUT."

Here's the link to the article:

Take the time to click and read,  and do share this one like crazy.

Sunday, January 10, 2016

Fight Fear with Self-care

Self-care never leads us away from our highest good; it leads us toward it.” 
--Melody Beatty

This is a lesson I have to learn over and over. So I’m sharing Melody Beatty’s quote here for you and maybe to remind me too. 

When cancer’s fear hits my first reaction is Control and then, Get Busy. I understand the dynamic. Fear cannot hit a moving target. So when we get scared we get busy, and when we get busy we get more tired and more stressed. It makes sense and is understandable. But...

in CancerLand there is so much to be afraid of: words we can’t pronounce, side effects that come and go and which can sometimes be terrifying (He stops breathing when he opens the refrigerator door—not even the freezer—just the fridge!). And the lingo of the medical establishment and copays that go up and up and up. Then of course the medical reality: people die of cancer. We know that so even though we experience so many cancers as chronic illnesses now, some are still fast to the finish line.

And for caregivers there is also the secret fear with the more chronic cancers: “Will this be my/our life forever?” “Will quarterly blood tests rule my emotions all year?”

In this Land you will be tempted to do more, move faster, read more and that means less self-care (for both patient and caregiver)—and note: medical appointments are not self-care—they are just business –as-usual in CancerLand.
I know, fighting fear with self-care seems counter-intuitive but believe me, it works.

What’s not easy is learning what true self-care is for you. Start with the standard prescription: manicure, massage, lunch with friends, a new pretty blouse. But then dig deeper. Maybe for you self-care means getting away alone for an overnight. OR maybe it means a movie marathon with someone else who loves Downton Abbey or going for a long run or doing a 5K.

Or –and this is radical—try some volunteering. (But absolutely not cancer related activities) Instead volunteer to hang an art show at a school gallery or tutor young kids or plant bulbs in a city park. Find people who don’t know you as a cancer patient or cancer caregiver (and don’t tell them). Take time to experience yourself apart from cancer.

You will be tempted—very tempted—to say, “I can’t do that, I’m needed, things are not great right now…” But it is life—and living life –that is the best self-care and the best antidote to fear.

Saturday, January 2, 2016

Happy Introvert Day

Today is January 2. The day that introverts get to breathe a sigh of relief.  We can come out of hiding; it’s safe to answer the phone and we can stop pretending we feel the flu coming on. Yes--the holidays are over. 

From mid-December through New Year’s Day, those of us with an introverted nature live in a state of perpetual dread. The weeks of office parties, neighborhood potlucks and open houses drain all our energy. But today we can relax; we made it through.

I speak from experience. I am an introvert. It surprises most people because I’m outgoing and friendly and very far from shy, but I prefer one person and one conversation at a time. 

I fought this for years, always trying to be someone else. I made myself go to parties; I
tried to fix what I thought was “wrong” with me. It didn’t help that other people would press, “But you’re so good with people” as if being introverted meant living on the dark side.

This is also one of the blessings of self-care. I no longer eat or drink in order to fit in or to numb the discomfort of social activities I don’t like. It’s a great relief. 

It’s no wonder that we introverts are sometimes defensive. Seventy-five percent of the population is extraverted; we’re outnumbered three-to-one, and the American culture tends to reward extraversion. 

Here’s what introverts are not: We’re not afraid and we’re not shy. Introversion has little to do with fear or reticence. We’re just focused, and we prefer one-on-one because we like to listen and we want to follow an idea all the way through to another interesting idea. Consequently small talk annoys us.

Many great leaders are introverts and many of our better presidents have been introverts: Lincoln, Carter and the John Adams—both father and son.  No, maybe I’m not being totally fair, but life isn’t fair to introverts. Introverted kids are pressured to “speak up” or we were hounded to “be more outgoing”. 

The philosopher Pascal wrote, “The sole cause of man’s unhappiness is that he does not know how to stay quietly in his room.”  Introverts do. So let’s make this day, Happy Introvert Day. We’ll be quiet and happy, and grateful as another year of "Love in the Time of Cancer" begins.

Sunday, December 27, 2015

Move a Muscle Change a Thought

What happens to our bodies and our brains when we are caregivers?

We know a lot about the brain and addiction and stress. We know that caregivers are at high risk of misusing drugs and alcohol abuse and eating problems. The attitudes of people around us are not always the helpful. “Well, she deserves a glass of wine” or “Sure he smokes some dope but really—all that stress—he has to relax.” Or, “Yes she’s gained a lot of weight but taking care of her partner is really hard.” 

But what are we missing? How can we manage that stress and even the trauma of

A few weeks ago I attended a workshop with Bessel van der Kolk—who is the Director of The Trauma Center in Boston and considered by many to be the world’s top expert on trauma. He talked a lot about what happens to soldiers and veterans, of course, and what happens to people that experience terrible sexual traumas or who are in horrific accidents. Those are the folks who come to him for help.

But he also talked about the relationship between trauma and stress and addiction. He talked about what happens to doctors and nurses and caregivers. We’ve known about that intuitively, of course. Most professionals recommend support groups where we are encouraged to process our stress with lots of talking and sharing. But van der Kolk explained that talking can only help to a degree; we need to change the body first or words won’t work. “Calm the body to calm the brain,” he says.

That helped me to understand why I can’t always talk myself out of my feelings, and why it’s frustrating when someone says, “You don’t need to feel that way” when we are mad or sad or scared. We can’t get at our thoughts with other thoughts—we need to go through the body.

What trauma experts like Bessel van der Kolk recommend are breathing exercises, yoga, walking, stretching, dancing (not any formal kind of dance but rather moving around to some music)—movement. Now it’s been documented: Changing the body can change the brain.