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.

Wednesday, December 9, 2015

A (Belated) Wish For National Family Caregivers Month

November was National Family Caregivers Month.

One of my dearest friends has suddenly become a caregiver.  Literally overnight.  No ramp up, or rather ramp down.  No slow decline foretelling a dark diagnosis.  No creep of symptoms.  Just, wham!

She was--is--was--is a brilliant therapist and program director at a human services agency.  I don't know what verb tense to use any more because, while she is still all those things, and her talents and wisdom have not diminished, she is now, more than anything, a caregiver for her husband of 40+ years who suffered a severe stroke that paralyzed half of his body.

As long as she is awake,  he is in the forefront of her mind.  She carries him with her to every meeting and errand.  He occupies her frontal lobe, and the creative thinking and problem solving abilities that she is accustomed to using to great success in her work are now locked onto him and his every movement, and lack of movement.

She has learned a new set of skills:  how to help him transfer from bed to wheelchair and back to bed; how to read to him the books about history that he loves and she abhors until he finally falls asleep at night; how to surround his anxiety with compassion and hope, while quelling her own terrors and growing claustrophobia at how much their world has shrunk.

The physical labor is exhausting.  But the mental and emotional demands can be defeating.  He is now the patient, and his efforts at recovery take precedence.  This means that the house is remodeled to accommodate his limitations, their time moulds to his needs, and his feelings come first.  She must construct a facade that is brave without minimizing the obstacles; one that can absorb his anxieties, anger, frustrations, despondency, and unrealistic hopes without flinching.  All the while arresting her own corresponding feelings so that she never tips the emotional scales away from his ability to sustain hope.

I am not writing about his horrific transformation from partner to patient.  Nor am I emphasizing how much he is still his deep thinking and deeply caring self.  He reaches out to her with his good arm and surrounds her, as best as he can, with his enduring love and appreciation.

No, her physical and emotional depletion are not because her partner ignores her or doesn't appreciate her experience and efforts.  Her emotional and physical depletion just....are.  They are not because she is trying too hard or not giving herself any respite or not using all the massage gift coupons friends have been giving her.  They are just the inevitable sackcloth that caregivers wear.

So November was family caregiver month.  Articles offer appreciation for the hardships caregivers experience and advise caregivers to take care of themselves, to de-stress, to take time off, to connect with friends and family.

All I can offer is this:  I see you.  I know what it's like for you.  I know there are days you celebrate and days you want to pull all the plugs on everything.  I offer you my deepest, most heart-mind-soul felt gratitude.  I offer this to my own caregiver/husband, and to all other caregivers.  I wish you peace.

Sunday, November 8, 2015

Just Got Back From Vacation

In the pre-vacation post, I wrote about how ready I felt to live, and deal with pain ripples (should they happen while we were traveling), rather than sit as still as I could and be on the lookout for pain and prepare for its punch.

Happy to report that while on vacation, I focused mostly on being on vacation.  That meant - walking, watching, eating, talking, and sleeping.  I felt too happily busy to be preoccupied with pain.  And when I did feel pinches and ripples and even waves, I dipped into my toolkit of meditation and meds, and kept on walking.

I can't tell you how different this was, how normal this felt, how vaguely familiar to my pre-pain life.

While we were on the road, I was contacted by a television producer who does a show about couples and was preparing a segment on couples and illness.  She found me through this blog, and Richard and I were interviewed for her show, which is called Love Talk Show.

Here is the show entitled In Sickness And In Health.  If you just want to see the segment with Richard and me (preceded by an ad, which you can skip), click on the link below (it ends at 26:00 minutes)

Wednesday, September 16, 2015


Richard and I used to be fierce travelers.  In fact, in 1987 we quit our jobs and traveled around the world for a year.  We hiked wherever we could.  Ate street food.  Bargained in bazaars.  Even learned a bit about the uses and misuses of baksheesh (tipping/bribing).

For the past 15 years, we have been relatively homebound.  My wanderings circumscribed by the addresses of my health care providers.  I was either hurting too much or too afraid to wander beyond that perimeter for fear I'd be struck with an immobilizing pain spike, beyond the reaches of my healers.

Next week, Richard and I are leaving on a month-long trip to Europe.  These boundaries were set by the availability of friends to visit in different cities - Paris, Barcelona, Berlin.  No doctors, nurses, physical therapists, or energy healers on this map.  I'm stepping boldly into this old, new world.

My pain has been an afterthought for the past many months.  It hasn't directed my every decision.  Can I go to see a movie and tolerate sitting for two hours?  Can I visit a friend who lives an hour away?  Will there be a comfortable place to sit at her house?  Will I be good company at a restaurant or too preoccupied with pain to be social?  None of these questions, that have been  my companions for more than a decade, have been nagging me recently.

So I am going to Europe in a good physical state.  But more than that, I am in a good mental state.  A nibble of pain no longer sends me into a never-ever-always tail spin.  You know what I mean - the waves of panic that set in when the voices say - "I will never feel better.  I will never, ever be able to be a full person.  I will always suffer."  I have finally learned what to do to quiet my pain.  And I have finally learned to answer those dreaded voices with compassion rather than feed them with more fear.

I can't know if this uplifted period is a phase or a new state of being.  But I've decided I'll take it and ride it -- to the Eiffel Tower, to the Sagrada Familia church, to the Deutscher Bundestag.  And hopefully I'll bring it back home with me.

Right now is the period of the Jewish New Year.  A time to connect, in all ways.  I wish you all a year of deepened connections, with those you love, with health, and with compassion.

Monday, August 10, 2015

Elderly Couple Holds Hands Across Their Hospital Beds

A hospital in Fayetteville, Ga., made special arrangements for a couple, married 68 years, to see one another during a recent stay.   The couple could not share a room because of state regulations for private rooms, but staff at Piedmont Fayette Hospital arranged for Tom to visit Arnisteen during their stay,  Tom, 96, "wept" as he talked about his love for Arnisteen, 92:  “I just can’t be away from her, she’s the finest woman in the world,” he said.
Yes.  Lovely.  Sweet.  Touching.  But come on....really!!
The big deal here is not that this couple was able to hold hands across the chasm of state regulations and hospital boundaries.  The big deal is that this is not the norm.  The big deal is that the hospital's honoring of the bond of a lifetime of shared experience, meaning, and love that this couple share is so rare that this picture went viral.
Patient centered care - that omnipresent health care meme - should mean caring for what's at the center of the patient's world.  If this were truly the case, then care should always be wrapped around the patient's core needs, values, and relationships.  And the patient's life partner sits at the very center of it all.  It is that relationship, for better or for worse, that exerts huge influence on the patient's physical, emotional, and psychological well being.
One day, during my partner's hospitalization for heart surgery, I was sitting near his bed, doing nothing, really.  I said to him, "I wish I could help you."  He responded, "Just having you here help me breathe easier."
In my dream health care world, this photo is one of thousands.
I'm interest in hearing from you about hospitalization experiences you and your partner have been through.  Was the importance of your relationship recognized and supported?  Were you asked to leave the room when the doctor arrived to examine the ill partner?  Or were you asked to stay to hold his hand and share your perspective?