Saturday, September 28, 2013

Step Family Relations Can Complicate Caregiving

Caregiving is complicated as we've discussed many times. And "sandwich generation" adult children have additional concerns and family issues that add another layer. But then sometimes we have to add in children--adult children--from previous relationships and it's quite a dance and very complicated.

Medical crises like  cancer do not--as in the made-for-TV-movie--make everyone behave better or rise to a higher level of functioning. Rather cancer and fear and worry instead aggravate whatever tension is underlying and can bring a focus to old battles--but with new focus. "Mom always liked you best" gets replayed, and "Who do you think you are?" gets a spin and in stepfamilies the painful, "She shouldn't be with you" and  "He's your husband not my father" might get said or played out with out words.  Just a painful layer of complications.

With our Boomer demographic having such a high level of remarriage and therefore blended families we have to factor step children and step parents into the caregiving equation.

Here's an article from PsychCentral that reminds us of this serious concern:

Thursday, September 26, 2013

Fashion Tips for Caregivers on Chemo Day

On Chemo Day you must decide what to wear.  There is no dress code but think again. My choice might be something like this: Khakis, (business casual or chemo casual) black linen shirt jacket over black cami (layers are good) black ballet flats (signals a causal but stylish insouciance) and a “good” necklace--black pearls inserted among silver waves. This is the gift from John: subtle, stylish and coordinated.

Hospitals, doctor’s offices and yes, at Chemo. Looking good makes a difference. Leave the sweat pants and the polyester at home. Go for neutrals, polish and natural fibers. (There are enough chemicals in this cancer life for everyone.)

Diana Vreeland, legendary editor of Vogue wrote, “The one presenting the most style has the most power.”

In this powerless situation, style is a consolation.

Tuesday, September 24, 2013

Love, Sex, Intimacy and Affairs

In most literature about cancer and couples you see the words, “love”, “sex” and “intimacy”. Those topics get some attention and ink even though the word intimacy is often used euphemistically for the word, “sex”. And of course you know by now how I feel about “cuddle” as a euphemism for sex or intimacy.

But there is a nodding awareness that a couple dealing with cancer is going to have issues around their intimate lives. What is often not acknowledged is that it’s no so easy to predict where the pressure or initiation for the issue will begin.

The common stereotype is of a woman with breast or gynecological cancer becoming reluctant to have sex with her husband and so the “work” is coaxing her back to the bed and to intercourse. Because of that stereotype a lot of the literature is addressed to men with the admonition to “be patient and to engage in non-sexual intimacy”. Hence the cuddle messages.

But that is not the whole story. And this is why it is crucial for healthcare professionals in Cancer Land to talk openly about sex. In many cases the person with cancer is the one who wants the direct sexual contact but the caregiving partner (male or female) is the reluctant one. And it’s also true that while chemo and repeated surgeries can diminish a patient’s libido, in many cases the stress of caregiving diminishes the libido of the “healthy” partner.

So if you look at those combined dynamics and the unpredictable nature of who wants what when—then you realize that you cannot assume that the “patient” wants less sex and the caregiver wants more. That is also why the word “affair” also has to be included in the “What about our sex life? conversation for the couple.

But I’ve never seen a piece of cancer care literature include a discussion of affairs or “sex outside marriage” –well, until I read “The Caregiving Wife’s Handbook” by Diana Denholm.

The whole book is a breath of fresh air and Denholm can be thanked for her stunning honesty. She writes about all aspects of caregiving and the mostly unmentioned parts like resentment, codependence, finances and sex. Bless her. And she adds a section on affairs to say that sometimes the caregiver is the one who has an affair because their needs are not being met (physical or emotional) but that it is equally true that the person with cancer can be the one who has an affair in order to feel masculine again or feminine again and to have the validation of a new partner—or to play out the anger they feel at having cancer. We know that affairs meet more needs than just the physical and so a couple dealing with cancer has to face the long list of needs being deferred or delayed or lost for both partners.

The subject of adultery or infidelity is so taboo in our society that coupled with the still taboo subject of cancer it’s understandable that no oncologist is saying, “Hey folks, we need to affair-proof your marriage.” But wouldn’t that be a wonderful and compassionate and healthy conversation to begin? 

Saturday, September 21, 2013

The Unlikely Pilgrimage of Harold Fry

It is said that there are only two stories: A man goes on a journey or A stranger comes to town. When I talk to people who are caregivers or who want to write about their caregiving experience I ask them, “Which one of those is your story?” There is no right answer, of course. Cancer is a journey that men and women go on whether they are the person with cancer or the person doing the caregiving. And equally true--Cancer is a stranger that comes to your town.

This week I am reading another wonderful book that I’ll add to the list of Cancer Books. But this new book is fiction and it’s message quite unexpected. It’s also about a part of the cancer experience that we rarely talk about and that is spirituality. Maybe even harder to talk about than sex, God and faith and spirituality are a part of life with cancer.

The book is called “The Unlikely Pilgrimage of Harold Fry” and the author is Rachel Joyce. Perhaps you’ve seen some of the reviews recently. “The Unlikely Pilgrimage…” was nominated for this year’s Man Booker Prize. Perhaps too, like me, even if you read the reviews you didn’t think, “cancer book”, but indeed it’s one for us.

Harold Fry is a late-middle-aged man who lives a quite dull life near The English Channel. His grown son is gone away. They barely communicate. Harold’s marriage is dry and stale like old toast. Then one day he gets a letter from a former coworker—who he hasn’t seen in 20 years—and she’s written to tell him that she is dying of cancer. This odd letter and this odd moment in Harold’s life set him out on a walking journey—he’ll walk 627 miles to see Queenie—his former colleague—and the story is what happens to Harold along the way.

Rachel Joyce is a careful, subtle writer. She does not make Harold miraculous and she does not pound us with the wonder of ordinary life. But as we look thru Harold’s “everyman” eyes, we are confronted with both the spectacle and questions of faith and human goodness.

Yes, the word “pilgrim” is no accident. One of the greatest books in English—and for the English—is John Bunyan’s “Pilgrim’s Progress” –the story of another quite ordinary man journeying a long distance, through multiple obstacles, in his search for faith.

In Cancer Land we are journeying and we are seeking faith in god or medicine or family or in ourselves. “The Unlikely Pilgrimage of Harold Fry” is an inspiring and entertaining model.

Monday, September 16, 2013

Don't Use the C Word in CancerLand

Every now and then I start to think that maybe we just had a uniquely bad experience in Cancer Land. I'll see an article about "Remaining Intimate Through Cancer Treatment" and I think, "See you just didn't ask the right questions." Then I read the article and there it is: The C Word...experts in Cancer Land are still thinking that cuddling equals sex.

Now, don't get me wrong--I like cuddling. I like it any old time and I particularly like it after sex..but it's not sex, not all by itself. Cuddling might be sensual and it might express sexuality and it might be a prelude to sex and yes, it might be all you can do when sometimes you can't have any sex, but why not just say that?

This weekend I was at a conference with professionals in the Addictions Treatment industry. I gave a presentation on what happens in longterm recovery and of course one of the many things that happens is aging and along with aging comes the illnesses and disabilities that are unrelated to addiction--and that leads to the topic of caregiving. We were talking about the issues that affect caregivers an I mentioned the challenge for caregivers in talking about sex with cancer care professionals. And the hands shot in the air.

More stories of doctors who won't talk about sex and nurses who refused to talk specifics about sex--and even therapists who avoid talking about sex while trying to help couples communicate about their cancer.

So a ban on The C word in CancerLand. And more info and maybe soon a post about the very specific questions you can pass to your doctor in a note.

Saturday, September 14, 2013

Risks of Addiction for Caregivers

I’m preparing for a presentation at the National Substance Abuse Conference this week and as I review my research on aging and addiction I thought that some of this information might be helpful to families in Cancer Land. Caregiving is central to our world and so as you consider your role --or the experience of family members caring for you-- you may want to think about some of this research about addiction and caregiving.

This information is also relevant if you—or a family member—will be involved in the care of someone who is aging. And that, of course, is all of us.

Senior addiction and caregiver relapse is a new pandemic. Caregivers of people with chronic illness can quite easily become addicts or suffer a relapse if they have earlier struggled with an addiction.

Caregivers have several key ingredients in the recipe for addiction: They are home, feel trapped, they feel a lot of unspoken resentment (this is not the retirement they anticipated, “I did not sign up for this.”) And caregivers are often shamed by being “sainted” so they can’t express the anger or resentment they feel when caring for a sick spouse. And they may have easy access to drugs and alcohol.

The most prescribed medications for seniors are the Benzodiazepines: Valium, Zanex, Ambien etc. These drugs are highly addictive and they can mimic the symptoms of dementia so an addiction can be missed in the patient and in the caregiver.

Family and friends often will cut caregivers a break: “His wife has Alzheimer’s he deserves his drinks at night.” “She has to do all that physical care of her husband—yeah she needs to get her sleep.” And they may not be driving so they don’t face  natural interventions like car accidents or a DWI.

Furthermore adult children are not around and so they only see the caregiver on occasion. And an intervention may be avoided because it would mean that the adult children will have to take over the caregiving. This contributes to the likelihood of ignoring addiction or just saying, “Hey Mom try to drink a little less, Ok?”

There are certain key risk periods for older adult addiction or relapse:
Men at retirement (now also women who had long careers).
Women when children move away.
When a spouse dies.
When a spouse has chronic dementia (the care and the loneliness).

Consider this information as you talk as a family, when you suspect dementia, when there are medication errors, and when there is a family history of addiction of any kind.

Wednesday, September 11, 2013

A Poem In Memory --September 11, 2001

September 12 2001
 Even the dead weep at a time like this.
All those on the other side, making preparations to welcome such a large group.
Death is going door to door in New York City walking past doormen, going up dark stairways, down halls and taking the train to Long Island and Connecticut and getting off at little Cheeveresque stations in the suburbs.
Death nears exhaustion, leaning in one more doorway, waiting for the buzzer to be answered. Hesitating, sighing, tired.
She has tears in her eyes as she visits another house, and another and another.
At night death goes down to the site and sits on the rubble wishing it wasn’t true.
Some of the dogs come and sniff at death, then back up and give her a funny look.
Even death is too tired to be moved.