Thursday, August 30, 2012

Stepfamilies and Caregiving Facing Facts

Earlier this week I wrote about the situation our family faced with step kids and stepparents faced with cancer care. I’ve heard from many people who faced the double dilemma of cancer caregiving when one of the adults has children from a previous marriage. These are tough situations.

But hard as it is we are not alone.

Here are the facts:
–Between 52% and 62% of all first marriages will eventually end in divorce.
–About 75% of divorced persons eventually remarry.
–About 43% of all marriages are remarriages for at least one of the adults.
–About 65% of marriages involve children from the prior marriage and, thus, from stepfamilies.
–60% of all remarriages eventually end in divorce.
–One of three Americans is now a stepparent, a stepchild, a stepsibling, or some other member of a stepfamily.
If you then consider those stats next to the increasing incidence of cancer and the increasing reality of cancer as a chronic or terminal illness and you have a lot of people who are struggling with how to manage caregiving in a stepfamily.
There are lots of issues: Who is in charge? What does the patient want? If the patient can’t speak who gets to make healthcare decisions? They can be big decisions like approving a treatment or stopping treatment, and smaller ones like accepting discharge plan. When the spouse says, “Let’s take him home” but the kids say, “I can’t help out” there are bad feelings and serious issues.
There is also the money. Who decides how to spend down an account or to travel for a second opinion? Who pays for home health aides? As our healthcare system changes we will all be asked to pay more out-of-pocket—but out of whose pocket? And with money-as-power such a strong cultural value—does the adult stepchild with more money out vote the stepparent?
It can get hard and ugly and painful for everyone.
Prevention is best. If you are in a stepfamily—as the parent or the child—make sure there are a will, a living will, a healthcare proxy, a medical power-of-attorney and a durable power of attorney in place. You don’t always need an attorney to create these for you but it’s smart to have a professional make these documents because they could be challenged when feelings are on fire. And cancer and death are flammable.
The most critical part of this planning though is that it forces conversation between the married partners. The adults have to carefully consider all of the what-if’s and state their preferences. You don’t want to leave an unhappy stepchild and stunned stepparent to share critical medical decision-making. It’s not only ineffective it’s just too painful. And the patient is most likely to suffer.

Tuesday, August 28, 2012

When Stepfamilies Face Caregiving

This week I taught a caregiving workshop and had the opportunity to talk about another layer of caregiving challenges that families face. It’s one that folks bring up one-to-one after a workshop because there is still shame and discomfort. But the truth is that the Boomer Bump that brings us so much caregiving and huge changes in our medical system also produce more stepfamilies. There are simply more of us in the 50 to 65 group. So we have more marriages, divorces, remarriages, second families, and therefore more stepparents and step kids. 

What do you do when the patient is a stepparent or the caregiving involves stepchildren? It can be that the natural parent needs extra help with their spouse but the kids are stepchildren who feel disloyal or angry, or maybe the ill parent has kids who don’t want to share caregiving duties with a “new” husband or wife.

John and I faced that and it was painful. His adult children –angry about their parents divorce --would not participate in any caregiving. And even refused to visit John in the hospital. We had so many friends who did pitch in, and that caregiving team bonded so well, that we were not hurt logistically, but emotionally the hurt was huge.

That is the tricky part of step family caregiving: there is enough old and new pain to affect everyone: parent, stepparent, the exes and even the new spouses on both sides.

Every issue that stirs the pot in family caregiving: time, money, travel, decision making, fear and facing death gets an extra jab and extra level of pain in a step family. The standard advice about having a family meeting to make a caregiving team may not work if exes are refusing to work with a new partner, or still tugging at the kid’s loyalties.

While family therapy may be the best call for stepfamilies in non-crisis time, when cancer caregiving hits there is not time or energy for that luxury. That’s when good friends and the couple themselves have to make a conscious decision to make a new family of choice.

Saturday, August 25, 2012

Oncology Day

Thursday was Oncology Day—this part of our life has a routine to it now. I know what to wear, what to bring, the Medical Power of Attorney is in my bag. We come in two cars—him from home and me from work. We check in along the way. It adds fun and distraction to the anxiety we both feel.

I always offer to fill out the intake for him. I want to check yes to mood swings and breast tenderness for him and where it asks about tingling I want to say, “Yes, frequently—especially after 11pm, and more if we read some erotica first”. I really do wonder if the nurse would notice.

I bring my own list of questions into the exam. I note whether they ask about sex. The Physician’s Assistants are so much better about saying, “Intercourse” with a straight face. It makes me grin to know that my ranting and blogging has had some impact. I still like to say, “swallow” occasionally just to shake things up.

The news is good. Some oral chemo a little bit longer then graduation to six-month intervals. The alternative is in front of us at all times in the waiting room. When we leave we make a point to look each person in the eye and smile. The chemo waiting room is one of the loneliest places in the world. It’s almost as if the drugs cause invisibility as well as nausea.

We synch our calendars for the next round, and then home to a great dinner and great sex as our lollipop for a good doctor’s visit.

Wednesday, August 22, 2012

Elegant Dance with Cancer

Here is something eloquent and beautiful and cancerful. A video of writer David Rakoff on cancer, bodies, laughter, friends and dance.

Click on the link below and scroll a teeny way down to click on the video. Enjoy!

Tuesday, August 21, 2012

That Old Cape Magic

We are home from Cape Cod. Always a great trip even if weather is bad or the family is fussy. The Cape has been part of our lives a long time--separately and together. But we have our differences here too: He is a  bayside guy and I am an oceanfront girl. But we have learned to accommodate our differences: I walk the flats and he watches me body surf.

Cape Cod has long been a part of my caregiving life as well. My real goodbye's to my brothers and sisters and my parents all happened at Coast Guard Beach. Over the years I took all of my pain there and now it's one of my most scared places. When I am on that beach looking at the ocean I have no doubt that there is something bigger than me. Even if I'm feeling terribly powerful and self-important even I know that I can do that--I can't make ocean or waves obey.

Now back to home and work and writing and CancerLand.

Thursday, August 16, 2012

Ad Council and AARP and Ads About Caregiving

At last a real media campaign about caregiving. Bravo to AARP and The Ad Council for teaming up to do a series of ads about the challenges of caregiving. Below is a link to an article in recent Time Magazine about the caregivers ads.

As we move through the big demographic bump most of us are now in or about to enter parental caregiving mode and --most challenging--many of us over 45 are able to become co-caregivers--each spouse doing caregiving duties for each other.

When we hear that healthcare can keep us alive an extra ten to 15 years we forget that it's going to be a pretty complicated older decade with lots of caregiving responsibilities. So many of us got an early start and suffered alone or silently. So these ads are very welcome.

Wednesday, August 15, 2012

Happy Anniversary

Today is our wedding anniversary. A really special day. It's about the love and the family and the public recognition of our relationship. It was also the one year post-chemo date, and it is the Feast of Diana and the Ascension of Mary so August 15 is a a really propitious day.

This morning we read our wedding vows to each other and the poems that were our gifts.

We will go to The Pruyn House today to walk through the school house where we were married. The memories are all about fun: Mr. Breslin using the old chalkboard to diagram "With this ring, I thee wed" and explaining to guests the exact parts of speech. The moment when John's  brother quite elegantly explained that his reading was in the car and went to get it while we all talked. That is probably --after our vows--my favorite part of the wedding--it was so calm and loving and fun for everyone.

We are alive, in love, growing, laughing and making love in the time of cancer.

Sunday, August 12, 2012

Don't Try to Change Your Man

I love relationship books. I absolutely love them. Given that you’d think I was better at relationships, but maybe it’s just the opposite. Because I see my struggles I am fascinated by what psychology and medicine and theology and even astrology have to say about how to find, make, keep and grow in a loving relationship.

These books are my candy.

This week I’m reading an old favorite: “Change Your Mindset Not Your Man.” By Sally Watkins, MSW. Her advice is pointed and true to her idea—low on theory and heavy on making changes. And boy it’s not for sissies.

One of her main points—and she repeats it --is that most woman have relationship troubles because we lie to ourselves. The man is bad? Well, she says, what red flag did you choose to ignore? If the man is really bad and you are still there, then this is all about you, according to Sally. Yeah, hard to swallow stuff like that. But sometimes those buckets of cold water really are refreshing.

 You will not be surprised that much of her relationship advice is extremely relevant to couples in the caregiving mode. The best way to prevent resentment and burnout is self-care. Radical self-care. Take a day off and even a week off. Sounds crazy right? But a week away can help you to love that person again. And all those people saying, “How can I help?” and “If you need anything…” Call them in and hand over the keys and the schedule.

Yes, some people will think you are nuts, and your partner may think you are nuts, but just keep saying, “Being selfish is the most loving thing I can do for both of us.”

And check out Watkins book. Cancer is a relationship issue too. Cancer makes any relationship a “bad” one. By default you have relationship trouble when cancer is involved. It’s really too bad that oncologists don’t talk about this stuff. But then they are just trying to save bodies while we are trying to save lives.

Wednesday, August 8, 2012

Women, Cancer and Sexual Pain

When I was growing up my mother loved Ann Landers and Dear Abby. She read them and I learned to read them too. Both writers offered good advice and a picture too of just how dysfunctional families could be. Tolstoy was right.

As a young woman I had a strong reaction to the letters from women of a certain age who wrote to say, “Why doesn’t my husband leave me alone?” They would describe how the man in their life badgered them for sex and they hated it. “Why can’t we just cuddle?” And I would think, “I never want to be one of those women.”

Now that I am woman of a certain age I am more sympathetic but I still don’t want to be “one of those women”. I like sex. But, something that we don't talk about is sexual pain. I wonder now how many of Ann Landers correspondents really meant it when they said that it was a pain to keep having sex?

In today’s New York Times the wonderful Jane Brody writes about women and sexual pain and specifically relates it to cancer treatment and treatment side effects. I thought, “Yes, this is for the Love in the Time of Cancer folks, and it’s also for most women I know –including those who are not dealing with cancer. Chemotherapy wreaks havoc with women’s hormones, as does positive cancer treatments and so do aging, perio-menopause and menopause and post-menopause.

Dryness, tears, pain, no elasticity—and who knew that your vagina could get shorter? All this for women with and without cancer.

But the point Brody makes—the reason I stated writing this blog --is that so few oncologists and medical folks talk to patients and couples about sex, sexual issues and sexual side effects. So thank you Jane Brody!

The article (click below for the link) gives suggestions, recommendations, remedies and references. Hooray!

Saturday, August 4, 2012

Healthy Food Libido Boost

In today's paper I read a summary from Dr. Laurie Steelsmith's book about eating healthy to boost libido. I thought I knew some stuff about this--I am always looking--but some surprises here. Below is the link to her recommendations of what to eat and what not eat for a libido boost. Since I started eating more whole foods a few months ago I'm almost there--so reading this gave me the nudge to kep going on my new healthy eating.

What I love in this article--and her book--is that she uses the term libido in the way it was always intended--not just about sex but about life energy and creative energy. They are all one. And if detoxing and eating better gets me to more creativity and better sex--I'm in.

Here's the article: