Caregiver Holiday Blues

We may naturally think of holidays as more complicated for those who have a chronic condition or illness.  But how often do we think about what holidays are like for the partners who so often act as caretakers for their ill mates?

One woman I spoke with recently, who has been the primary caregiver for her husband who has multiple sclerosis, felt it her duty to make sure the holidays were as celebratory and seamless as possible for him.  She said that he suffered, so it was up to her to bring some holiday joy into his life. She spent days, and nights, baking, cooking, cleaning, organizing small groups of friends and relatives to visit in clusters that wouldn't tire her husband out too much.  She felt obligated to paste the mask of holiday cheer over her exhausted face, and keep it there.

Another caregiving partner I spoke with felt that he did double, if not triple duty all year long - caring for his wife, working full time, and providing much of the care for their children.  Holidays were his time for a break.  He intended to ask friends and relatives to bring the holidays to his wife, while he sat in his arm chair, watched sports, and napped.

These examples are two ends of a spectrum.  I think the connective thread in this spectrum is that caregivers need consideration and permission to take care of themselves, all year long, and especially during the holidays when expectations of cheerfulness can become oppressive for those of us who live with illness in our relationship.

This is not to say that you shouldn't enjoy whatever holiday spirit speaks to you.  And part of that spirit may include doing some special things for your partner.  But the equation should flow in two directions.

The ill partner can also do what he can to bring a little specialness into the holidays for his mate.  And that can be something as simple and as powerful as words.  The ill partner can tell his beloved that she is indeed beloved and express what he appreciates about her -- and not just her caregiving, but the specialness of her essence.

Sometimes words, especially those that convey that you truly see and know your partner and love her for her goodness and her frailties, can be the best gift of all.

Childless Couples Have Higher Death Rates and Mental Illness!!??!!

I hate scientific studies that don't investigate the assumptions on which they're based.  They do harm.  The findings slither around and get into the heads of people who treat people for the issues the research purports to understand.  And the misconceptions become protocol.  Here's one example.

The Journal of Epidemiology and Community Health published an article declaring a connection between childlessness and increased risk of death and mental illness.

Among the findings:

• Having a child cuts the risk of early death, particularly among women.
• The early death rate from circulatory disease, cancers, and accidents among childless women was four times as high as that among those who gave birth to their own child, and 50% lower among women who adopted.
• Similarly, rates of death were around twice as high among men who did not become parents, either biologically or through adoption.
• The prevalence of mental illness in couples who adopted kids was around half that of other parents.

What the study states but doesn't investigate is that for their research they used:  "population-based health and social registers, we conducted a follow-up study of 21 276 childless couples in in vitro fertility treatment."

Do you hear the sound of "WHAT!??!" beginning to reverberate?

Might it be that couples who have been living in the infertility system for months, maybe years and have had their original life script expectations erased, have had doctors and drugs and timetables invade their intimate time, have spent gobs of money, and have had repeated cycles of devastating disappointment may be in a very different state than couples who have CHOSEN not to have children?

And let me state my assumption up front.  Choosing not to have children is not dysfunctional.  It's not a psychological condition.  It's not an ethical/moral lapse.  It's not a sign of immaturity or selfishness.  It's a legitimate choice.

It may be that the researchers' findings do apply to couples who undergo infertility treatment in order to have a child.

But there is harm in assuming that all couples who don't have children are at higher risk for death and mental illness. 

Happy Holidays When You're Not Feeling So Happy

The holidays are so packed with contradictions.  John Stewart on The Daily Show said the other night that holidays are the one time of the year when you feel compelled to get together with the people you try hard to avoid the rest of the year.  They're also a time when every message around you - from stores, news, advertisements, magazines, TV - demand that you be sparkly and celebratory and spend money on others.  For those of us dealing with illness and its corollaries - pain, exhaustion, distraction, medication - and for those of us who live with and love partners who have an illness, the messages of the holidays can put expectations on us that are intolerable.

So, how do you cope with the holidays?  What have you learned over the years to help you spend your energy and attention in ways that don't deplete you and even give you some joy?

My approach is to set expectations as early as possible - with myself, my sweetie, and family and friends.   I accept invitations in the hopes that I'll feel up to going.  But I offer invitors the caveat that I may have to cancel at the last minute if my body tells me to stay home.  I find that most people respond by saying, "Whatever you need is fine.  Just tell me how I can help."  And if they don't respond that way, I probably don't want to go to their party any way.

What do you do?

Why Did I Change the Name of This Blog?

This blog is renamed:  In Sickness As In Health: helping couples cope with the complexities of illness because that is the name of our book, which will be published in January 2013.  I decided to make the blog and book names match.  In addition, the book website, not so coincidentally has the same name.

This blog will remain a place for in depth conversation and analysis of the complexities of how illness affects the couple relationship and how couples can cope with the strains and changes illness delivers.  The book website is a place to learn more about our book.

Here is a brief description of the book:

For the past several years my co-author (Roanne Weisman) and I have been working on our book, IN SICKNESS AS IN HEALTH: Helping Couples Cope With The Complexities Of Illness.

We interviewed couples living with illness and experts from many fields -- psychology, theology, hospice, medicine, nursing, rehabilitation, government, the military, and law.  We met couples (and individuals) who became even stronger because of the lessons illness taught them. And we met couples for whom illness revealed the chinks regular daily life had been masking, and many were then able to repair them.

Our couples and experts have profound and practical guidance for readers who want to deepen their primary relationship and better manage adversity.  They not only offer advice about topics such as communication and coping, but also on practical matters such as managing the health care system and getting your legal affairs in order.  Their amazing stories and insights have value for those who are currently dealing with illness, and also for those who have good health but want to be more proactive in building a better relationship before any illness might hit.

Writing this book has been a profound and humbling and enlightening experience.  We wrote it because we both lived the experience of having a severe health condition disrupt the patterns and expectations of our primary relationships.   We and our partners were whiplashed by the fear and uncertainty and pain illness inserted into our lives.  And there were no resources available to help us learn how to be cope, together.  

We hope that listening to the voices of other couples dealing with illness and experts who help them will offer you useful guidance and a sense that you are not alone.