The Reluctant Caregiver

In my class on caregiving I always say, "Don't let anyone saint you." That means: do not take it when anyone says of your caregiving role that, "You must be a saint." The reason is, that as soon as you have accepted that intended compliment you are now prohibited from saying just how hard it is to be a caregiver. How will you follow "You are a saint" with "I hate this"?

Here's someone else writing about the pain of caregiving and the reluctant caregiver--of which there are many. In this story it's a woman caring for a mother-in-law but often its someone caring for their parent or even their own spouse. No, it's not a made-for-TV-movie where everyone finds caregiving heartwarming and rewarding.

Take a look at this short article. And know you are not alone:

http://newoldage.blogs.nytimes.com/2013/02/20/the-reluctant-caregiver/?smid=pl-share

Sex and Cancer and Young Patients

Oh, I am so excited to discover another woman writing about sex and cancer. Sadly this is a young woman--25 years old--with cancer and as is perfectly appropriate for 25 she is talking to her gal pals about sex. But this is not Sex and The City. It's more like Sex and The Chemo. And crazy frustrating they are still not getting good info on sex and cancer.

But this young woman--Suleika Jaquad--is a writer and advocate and she's writing a blog for the New York Times. Here is the link to her column this week. Take a look. Send it to friends. Send this to your oncologist and to your cancer support group too. Lets make them talk about sex!

Click Here:

http://well.blogs.nytimes.com/2013/02/14/life-interrupted-crazy-unsexy-cancer-tips/?smid=pl-share

The Normal Bar as a Book for Two

It’s President’s Day weekend, and I am so grateful to have this long weekend with John. We have both been so busy with work, family, sports and community. We have not had much “couple time” in the last month, so this weekend we went to our favorite B&B in the Berkshires to read, sleep and make love.

For fun we took the new book, “The Normal Bar” with us and we took turns reading it and asking each other the questions about our relationship. One of the things that works well with this book is that it is well documented and based on thorough research so it seems to work for both men and women. There are enough facts to assure the suggestions are valid, and there are enough stories and anecdotes to engage a less literal reader. Hence both boys and girls can enjoy!

The tagline on the book says, “Surprising secrets of happy couples…” and there are some big surprises. Like what men want more of is: communication. And the authors mean hands-free communicationJ. Really. Of course they also document the correlation between better communication and better sex so bring on the talking!

But there is more than juicy sex tips in this book. Of course, sex sells so you have to mention sex and romance to sell a book, But how about this tip for a great marriage: comb your hair, put on a nice shirt and lose five pounds. Yes, according to the authors’ research with thousands of couples, letting yourself go--which starts in years six to 9—does big damage to marriages. And the remedies are simple; no plastic surgery needed: change clothes, add lipstick and shave on weekends.

Rest assured that there is plenty of good stuff on sex in this book. Want to know if your fantasies are normal? If his are? How important is oral sex? And how important is it to your partner if you have an orgasm? That’s here too. Just reading the book together turned up the heat on our winter weekend. Let’s just say we were a little bit normal and a little bit not.

As usual, we came away from the weekend touching more and laughing more and yes, reading together a whole lot more.

The Normal Bar for Happy Relationships

If you don't have a gift for your Valentine yet here's a suggestion that will give back over the next year. I've just started reading, "The Normal Bar--Surprising Secrets of of Happy Couples" and it is eye opening from the start. I'll be writing more about this juicy book over the next week.

You would expect great, well-documented information from the trio of authors: Chrisanna Northrup, Pepper Schwartz and James Witte. All great writers and accurate digesters of information who have a high skill to put research into relevant lay language.

This book is not about Cosmo quizzes and what works for your friend. It's longitudinal social science research translated into, "Try This!" And we can all use some of that.

And you might be thinking, "A relationship book as a Valentine's gift?" But yes...the only implied message is "I love you and I want more." But just to be on the safe side, add some dark chocolate.

Happy Valentine's Day!

Take Your Vitamins and Don't Forget to Pray

You want to live long and look good so you do everything the experts suggest: You eat salmon, wear sunscreen, lift weights and jog. You floss, eat five fruits a day; take your Vitamin D and you pray. Pray? Yes, God is now part of a healthy lifestyle.

It turns out that God can save your life as well as your soul. According to the newest research on aging and health we need to hit both the treadmill and our knees on a regular basis. This new push for God isn’t coming, as you might expect, from the church folks, but rather from doctors, specifically neurologists.

The timing is perfect because we are a pretty nervous bunch right now.  The world is tilting; economy struggling and our fears about it are multiplying. Dr. Andrew Newberg is the spokesperson for the new field of neurotheology and his focus; “How God Changes Your Brain” is also the title of his new book. In it he details extensive research showing the impact of prayer, faith, meditation and yes, exercise on longevity and health.  

In a key section of the book they rank the ways that we can improve our brain function—the overall key to long life--and while aerobic exercise is number three, it turns out that the very best thing you can do for your brain is to have faith.

Can’t you just hear this at the gym, “What’s your workout?” “Oh I do 20 minutes on the elliptical, 20 minutes of weights and a couple of rosaries.”

But there is something else. The selling of belief as self-improvement strikes me as another kind of materialism, albeit a spiritual one. We typically recognize consumerism in the race to bigger houses, cooler cars or the latest techno-gadget. But maybe in a recession we drop those in favor of other kinds of consumption, like using God for your own good.  In most faith systems the goal or end point is about turning away from self and toward others: Love your neighbor. Mend the world.

So there’s a paradox here: trying to be more spiritual for selfish ends knocks you right off the spiritual path. It’s like humility; just when you think you’ve got it, you don’t. But maybe God doesn’t care; maybe he’s OK with being the bait to catch himself.

So if you’re getting in shape for spring, think of “Him” as Vitamin G.

Gail Sheehy Writes About Caregiving

A few years ago Gail Sheehy published her most important book since "Passages". She says that when she wrote that much earlier book she never conceived that there would be a life passage that included remarriage, illness, cancer and caregiving. In "Passages in Caregiving" she details the cycles that occur in caregiving and how she learned to move through them and emerge relatively sane after her husband's long, tortuous illness and death from cancer.

Here is a short essay from Publisher's Weekly that Sheehy wrote about why she writes and about writing the book, "Passages in Caregiving."


http://www.publishersweekly.com/pw/by-topic/authors/profiles/article/42702-why-i-write-gail-sheehy.html

Read About Rehab After Cancer

We are accustomed to seeing people go to rehab after an injury, after surgery and after all kinds of medical interventions--except cancer. That is until now.  In today's Wall Street Journal there is a very interesting article about rehab after cancer treatment--whether that treatment is surgery or chemo or both.

This makes so much sense. The article talks about rehab especially after chemo and its consequent side effects. Many people--John had this experience--have difficulty with walking, balance and small motor control after some of the nastier chemo concoctions. Most people just live with that or figure out their own adaptations or ways to cope. But why not a program of rehabilitation either in-patient or out-patient?

As cancer becomes more of a chronic illness things like "living with" rather than "dying from" lead us to things like rehab for cancer and chemo.

Take a look at this article--link below--and have this conversation with your doctors and oncology nurses. This may be a place where you have to be a strong advocate for yourself or your loved one. In that case print this article and take it with you!

Here's the link:
http://online.wsj.com/article/SB10001424127887324039504578263914081204892.html

Saturday Night Widows

While much of our time in Cancer Land is spent with caregiving and managing the logistics of cancer, the thing that takes up most of our mental energy is the thing we talk about the least: Death

The thing about death that we, maybe, don’t talk about enough-- or admit-- is the part about what will happen to us after he/she dies. Yes, I know—you can feel that taboo right away even just reading it, right?

I know that were not “supposed” to think about ourselves. That’s not part of the “loving caregiver” image. We’re supposed to be thinking about them and their needs not our needs-- and certainly not our needs later, right? That’s a big “don’t” of caregiving.  But it’s also true that a lot of the real fear—the part that comes out in secret sobs in private moments-- is the, “What am I gonna do if he dies?” terror.

Of course we know what we’ll do; we’ll live. But that’s also what we’re afraid of. “Live how?” and “Will I ever be happy again?”

I know, I know, we’re not supposed to think such thoughts in Cancer Land. We’re supposed to be unselfish and loving and worry only about him/her. But, alas, we are human.

And now gratefully I have found a book about this very human part of life and loving: a book about the “What happens Later” part, and what happens after the love of our life dies.

The book is called, “Saturday Night Widows” and it is brand new. Written by Becky Aikman who was widowed at 42 after her husband’s death from cancer. What is startling and refreshing about this book and Aikman’s approach is that she tried the traditional route of recovery—debriefing and bereavement group but it was a bust. Her “failure” in traditional grief work led her to do a ton of research on grief and bereavement and she discovered that a lot of what we have been taught about the process of grief and grieving is mostly wrong.

For example, Aikman talks to grief experts who confirm that the Kubler-Ross “Stages of Grief” were never actually stages of grief. They were, and are, stages of the dying process. Kubler-Ross worked with people who were dying but over time we told and retold those famous “stages” as grieving gospel. Not true. No stages. More like waves that diminish over time.

And another myth Aikman debunked: you don’t have to talk, talk talk. In fact the over-telling is re-traumatizing. Turns out that new experiences and happy experiences are the real medicine for grief. 

So “Saturday Night Widows” is full of great info, facts and the latest research but it’s more than that. It’s also a really fun and inspiring story. Aikman gathered a group of new, youngish widows and tried out the new ideas for all of their healing. The cooked, shopped, traveled, made things. And yes they cried, worried and talked about their spouses too, but it was a very different experience than what you’d see in a traditional grief group.

This is the book for your friends who have had a death. The book is about widows but it fits men too and maybe siblings as well. It’s a book that I hope cancer care centers and oncologists will make available. It might even be a wonderful book to read as a caregiver. It offers hope that while, yes, we do fear his/her death we can be and we will be just fine later.

Keep Asking Questions

In yesterday's New York Times I read this great article (link below) by Theresa Brown--an oncology nurse who makes an excellent case for asking and asking and asking. She describes a breast cancer patient, Amy Berman, who had to make a clear decision about her treatment and life plans after a stage 4 diagnosis.

The point of this is that at the very time that your head is spinning with fear and anxiety and even hope you have to step back and think, feel and discern what is right. I do think that's pretty hard to do for most people. We want to hear "I'll cure you" and we want to hear, "This can be fixed".

I think what it takes is thinking and talking beforehand. Talking to loved ones and talking to friends --even those "What would you do if...?" conversations can be helpful.

And then also including family and friends after the diagnosis and during the research/second opinion phase. But--and an important but--you have to be be mindful about whom you include. You want the family and friends who will support your desires--not their needs and fears.

Take a look at this article and maybe forward this link to family and friends to initiate a conversation about, "What if..."

Here's the link:


http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/?smid=pl-share

Looking for Signs

I am sooo happy to announce that my new book, "Looking for Signs"--a collection of  essays is out! It includes some of the short essays  you have read here on Love in the Time of Cancer and also work from the many newspapers that have published my columns over the years. I'm very excited--this is certainly a gift .

"Looking for Signs" is available at The Book House in Albany, NY; at Market Block Books in Troy, NY; at The Book Loft in Great Barrington, MA. and on Amazon.com. Here is the link for "Signs" at Amazon:


http://www.amazon.com/Looking-Signs-Columns-Diane-Cameron/dp/1614681252/ref=sr_1_1?ie=UTF8&qid=1358627022&sr=8-1&keywords=looking+for+signs+cameron

Bye Bye Lance

The Amy Winehouse House was not asked for an official comment on last night’s Oprah interview with Lance Armstrong. But our founder taught us to never wait to be asked. So here goes: We haven’t liked that dopey guy for years. He is arrogant, mean—(such mean little eyes, no?) and now the fool has taken on Oprah. Oh well. Our dear founder (RIP) was a musician and singer and had only great respect for her peers so we couldn’t help shouting at the TV, “Ask Cheryl Crowe!” and “This jerk broke Cheryl Crowe’s heart?” Watching this guy with Oprah can you just imagine what a prick he was in an intimate relationship? Cheryl, you are in a better place. And yes, our dear Amy is too.

For those of you who are new and have not heard about our specialized cancer support center here is a post from 2009 when I created The Amy Winehouse House:

(Love in the Time of Cancer 2009)    

A couple of weeks ago we visited a local support group for people with cancer to see what services or support might be available. The house is lovely and there are many activities, support groups etc. But about 30 minutes into the orientation I picked up the whiff of overriding condescension that accrues around cancer. Part of it is the pastel and pretty approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone with Down’s syndrome or to someone in the midst of a psychotic break. The other hint at condescension is the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by the long, deep gaze, which immediately feels like someone told the staff how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to make dam sure you know you are seen.

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At the support center, the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make smoothies.” Smoothies.  As I told John on the way home, “I have never made a smoothie in my life so why would I make smoothies in someone else’s kitchen with a group of strangers just because you have cancer?”

That smoothie was the turning point for me and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House.  So here are some of the things that are offered at the Amy Winehouse House:

The mission of The Amy Winehouse House is: Fuck Cancer

We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were a jackass before you got cancer now you are a jackass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover.

All activities at the Amy Winehouse House are optional and include:

Making martinis

Strip poker night

Learning how to hot wire a car

Our book group is currently reading, “Snuff” by Chuck Palahniuk

We have a smoking room ((if you have cancer and are going to die we want you to enjoy a cigarette on us.)

On Saturday nights we have strippers. Yes for girls too.

And we certainly do have drug education.  We think of this as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score some medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.)

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hate Lance Armstrong (We call him “One Ball” around the House.) And, yes, we have bracelets too, but ours say, “Fuck Cancer.”

Alanon for Caregivers

I was at an Alanon meeting this week. Alanon is the 12 step program for family members or friends of someone with an addiction. So I realized that Alanon is a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)

The ideas that are discussed in an Alanon meeting are all things that we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.

Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.

And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow.

Take a look at the Twelve Steps. They can work for cancer and caregivers too.