Saturday, April 16, 2016

Marriage May Help Partners Survive Cancer

From an article in the Chicago Tribune:

"Married people seem to have a marked survival advantage, the researchers found: Single men with cancer had a death rate 27 percent higher than it was for married male patients, while the death rate for single female patients was 19 percent higher than their married counterparts.......What's more, this advantage appears to rely solely on the emotional bonds of matrimony and not the financial advantages that marriage offers......"

The article highlights the practical help well partners offer -- driving, shopping, reminders to take medication -- in addition to the emotional support that comes from having a loving, listening presence.

But the article, and the research it's based on, don't go far enough.  It's not just that the presence of a loving partner can help with the fight against cancer. It's that the challenges cancer (and other illnesses) brings into the relationship can serve as a catalyst to finding more truthful communication and a deepened connection.  Many of the couples we interviewed for our book said that they reached levels of intimacy that would not have been possible had it not been for the presence of illness.

The relationship has the potential to heal - emotionally, spiritually, and now there's research that shows that a physical healing can happen too.

Saturday, March 26, 2016

What Happens to the Caregiver When the Ill Partner Needs Surgery?

A dear friend had an episode of dizziness and a touch of confusion the other day.  He is now scheduled for open heart surgery.  You never know when a wound that's slow to heal or a bruise that just grows worse or a cough that lasts for months will wind up being a diagnosis you really don't want to hear.  The point is not to live in fear; but to really live.

My friend has been getting MRIs and ultra sounds, talking with a multitude of specialists, touring cardiac ICUs of local hospitals.  Every clinician he meets is friendly and reassuring.  All his questions get answered.  He is being well looked after.

His wife, however, is relatively invisible to these excellent professionals.  She is an appendage, a steady hand to hold his frightened one.  Not one of these very excellent clinicians asked her if she had any questions, much less how she is doing.  And much less, how they are doing coping with this crisis together.

The partner in these situations is too often, sadly, a sidebar.  But a side bar of whom much is expected.  The partner is expected to be fully present during the hospitalization and fully responsible for the heavy load of caregiving that will be needed when the patient is back home.  And the caregiver must give care whether or not she/he is exhausted from sitting for days at the hospital bedside, missing sleep, and eating badly.  And she/he must take on the heavy care load at home that often involves helping the patient move, dress, shower, get to doctors' appointments, in addition to grocery shopping, laundry, child care, and going to work.  And all this is on top of the caregiver's emotional exhaustion that comes from fearing the worst, watching her sweetie in pain, and feeling illegitimate for having her/his own needs and frustrations.

How much more bearable this load would be if health care professionals understood that their patient's outcome will be strengthened or weakened depending on the resilience of the caregiver and of the relationship between the patient and caregiver.  If the caregiver sinks, the patient will sink even lower.  If the caregiver feels recognized and appreciated by providers, she/he will transfer that support back into the caregiving relationship.

Of course, not all providers neglect the caregiver.  And not all caregivers can, or want to, serve as caregivers.  I would like to hear about your experiences as the caregiver at a time when your partner needed hospitalization.  Did you feel recognized, or invisible?

Wednesday, February 24, 2016

Advice for Couples Living with Cancer

From an article by a therapist at CTCA -- advice for couples living with cancer.  He hits many nails right on the head:

1. Keep communication open: Communication may not always mean agreeing, but having a goal of being honest with one another is important. 
2. Rely on developed skills: Most couples do not realize that they already have the tools to cope with cancer based on previous crises. Remembering how they overcame difficult situations in the past may help a couple develop coping strategies in the current situation. 
3. Allow room for a "time out": Cancer can cause feelings of anger and depression. Allow your partner to feel their emotions and be comfortable with him / her taking a moment alone. The end goal is to fight the cancer, not one another.
4. Remain intimate: Intimacy does not necessarily equal sex. In fact, cancer treatment side effects often make sex uncomfortable. Instead, intimacy means spending time together - holding hands, reading together, talking, etc. 
5. Find time to do the things you love: Take time to play and have fun together - fishing, going to a movie, playing a board game, or even watching a sports game on TV. 
6. Boost your support network: When a significant other is diagnosed with cancer, the caregiver is tasked with extra responsibilities. Don't be afraid to ask friends and family for help, giving your partner a chance to take a break and process his or her emotions. 
7. Find other couples in a similar situation: These couples, often found in support groups, may understand what you are going through. Don't be afraid to seek tips and advice from others, as well as share what you have found works in your own relationship while recognizing that each couple's experience is unique.
8. Keep each other accountable: Cancer causes stress, and stress compromises the immune system. Remind each other to participate in healthy activities to remain resilient - getting plenty of rest, eating nutritious meals and exercising. 
9. Don't blame each other: Many people blame themselves or their loved ones for getting cancer, including being too stressed out, working too hard, or smoking. Realize there are many factors that contribute to cancer, not just one.
10. Speak with a therapist: Speaking with a therapist, who is unbiased and has experience with other cancer patients, can help couples express their emotions, confirm that the feelings they are experiencing are normal, and help provide useful coping tools.

Thursday, February 18, 2016

Staying Close to Normal

Illness is such a thief.  It steals so many pieces of your life -- time, safety, even intimacy.  It separates you from the "healthies" -- those who don't even know what a privilege it is to take their body for granted; those who don't couch every invitation with, "If I'm feeling well enough...."

Sylvia Plath's character, Esther, in her miraculous book The Bell Jar, describes her episodes of madness as feeling as if she were trapped inside an airless jar that distorts her view of the world and interferes with her ability to connect with others.

I've often felt that my pain condition was my bell jar, forcing me into a box too small and too rough to accommodate my real life.  As if I still had a real life, an experience apart from illness.

Yet as much as I mourned my losses, the very fact that I mourned kept me tied to the experience of normalcy.  I could not travel to Paris.  I could grieve for the loss of Paris.  Yet I kept thinking about Paris.  And deep, deep inside, without language or image, a part of me quietly hoped I would once again walk those majestic streets.

Ironically, that secret longing for Paris kept me in life.  It kept me tied to normal.  And that tie, like the thread Ariande gave her beloved Theseus so he could find his way out of the Minotaur's labyrinth, helped me find my way out of the box, sometimes.  The streets and smells and tastes and beauty of Paris were still alive in my imagination and in my memory -- beyond the reaches of illness.

In September of this year, Richard and I spent ten days in Paris.  He understood what it meant for me to be there.   And his understanding sweetened the experience.

What ties you to normal?  What people, memories, experiences, dreams help you know that you are in life, and not inside that bell jar?

Monday, February 1, 2016

Illness and Sex

A reader recently posted this as a comment to my article on What Do You Do When Illness Makes Sex Impossible.  I am reposting it here because I think his situation is a common one, that often stays hidden because it is fraught with emotions and complications.  I'm also posting my response as a comment.  I encourage you to share your stories and approaches to the challenge of sex and illness.

Anonymous said...
I am a 66 year old male and married to a 62 year old women. We have been married almost 20 years. We had a sex life that was a few times a month until she got sick 7 years ago. She had cervical cancer. Went thru chemo and radiation, and a hysterectomy. Then cancer returned and about 5 years ago she had a 9 and a half hour surgery that took everything including her bladder. She voids her urine from her side , and has an ostomy bag. Needless to say normal intercourse is not possible. And other things really aren't either. She uses a wheelchair and Walker to get around . Her sexual interest is 0 and require a good bit of care which I do.
I have reached a point where I am considering looking for a lover. It's not that I don't love my wife but I still have a need for intimacy .
Do you have any advice or suggestions?

Monday, January 4, 2016

Who is the Patient and Who is the Caregiver?

I just read (another) story, this time in the Boston Globe, about a couple falling in love, starting down the path toward a rosy future, then finding the lump.  You know the lump I mean.  It can be cancer, multiple sclerosis, a traumatic brain injury, Alzheimer's, a stroke, pain.  Anything can qualify as a lump as long as it's a serious health condition that derails that rosy, idealized future.  An unassailable breach between what was and what will be.  A one way ticket to what Susan Sontag called "the kingdom of the sick."

In this story, he stuck by her side as they tried to achieve normal for as long as possible.  It wasn't too long a journey.  And that is both a blessing and a curse.  A blessing because they could love and hold onto each other without suffering the exhaustion and dullness long term care forces on patient and caregiver.  A curse, because they lost too quickly the future they never were going to have a chance to have,  and the loving kindness they really did have.

One line in the article struck me hard:
"Those outside of relationships in which a serious illness is present sometimes want a simple story:  the patient and the saint."

I think we need to redefine these terms.  Is the patient the person in whose body the illness resides?  Or is the patient the relationship itself which gets unravelled and requires continuous monitoring and re-ravelling?  Or is the caregiver also a patient, someone who is an equal-but-different victim of the invading disease?  And doesn't each partner, to the extent he/she can, try to provide some caregiving to the other?  Even it it's in the form of a smile or an expression of gratitude.  We need to remember that while the disease lives in one person's body, it is two lives that get disrupted, and two whole beings who suffer.

The patient suffers a terrible identity loss, along with the pain and physical demands of the illness.  The caregiver suffers an existential loss (that is, her existence as she knew it is gone), along with a level of physical and emotional depletion no one on the outside can imagine.  The caregiver also suffers the additional anguish of being unable to make the patient well again.  I've lived in both shoes, and I can tell you, I'd rather be the patient.

So, let's not make it easy for outsiders who want that simple story of patient and saint.  When they ask, "How are you doing?"  Tell them the truth.  Tell them that this is not the life you expected.  That it is harder than words can express.  That sometimes you wish the final curtain would drop already. That other times you feel such love and intimacy with your partner -- a level of connectedness that would not have been achieved had it not been for the pressure of the illness.  And then thank them for their concern.

Monday, December 21, 2015

Startling Statistic About the Effect of Illness on Relationships

I just read some startling statistics.  I don't know if they're completely accurate, but they seem at least ballpark right.

In the general population, the rate of divorce is around 40%.  For couples living with illness, the rate jumps to 75%.

So the question is: Why is the rate of separation/divorce so much higher for couples living with illness?

There is the obvious answer.  Living with illness is hard for everybody.

True, but insufficient.  When we look at why living with illness so hard that it destroys the bonds of too many relationships, let's go beyond interpersonal answers and take a bigger systems perspective.

Our health care system is disease focused, not person focused, much less relationship focused.  Yes some hospitals and doctors are more patient-centered; but in too many you are still the breast cancer in room 120 or the Crohn's in room 347.  And even if you are called by name, the focus is on the body part and the disease, not on your experience or identity.  The aim is to cure the disease  -- which is essential.  But the aim should also be to heal the whole person, and that includes the primary relationship.

This does not mean that clinicians should start carry crystals along with stethoscopes.  It does mean that clinicians should support all of the patient's strengths -- this includes the caregiver, and the patient/caregiver relationship.  Too often the caregiver does not even get introduced and is left to sit in the corner.  And when was the last time, or any time, that the clinician said something like, "I know this is hard on both of you.  How are you coping together?"

And let's not forget that the health care system is overloaded and under-resourced and clinicians are expected to move on to the next patient every 7-15 minutes.  And that 25.3% of every health care dollar goes to administrative costs.  So clinicians are not supported, or trained, to care about the patient/caregiver relationship.

This all means that the full brunt of one of the most powerful of all life stressors, illness, falls squarely and entirely on the shoulders of the patient and caregiver.  There is little formal support from the health care system, and little governmental or societal support to help the partners.  Yes there are information, advocacy, even respite help.  But not enough to counterbalance the overwhelming 24x7 impact of illness on the patient and caregiver relationship.

No wonder the separation and divorce rates are so high for couples living with illness.