The medicalization of dying, in hospitals, in extended care facilities and even in hospice, often leaves little room for the most human of experiences—intimacy. And yet being close to those we love—being able to touch and be touched, as well as having the privacy we need to express our feelings—are essential elements to living a good and wise death.
The sea change taking place in the popular culture, with regards to sexual minorities, people with disabilities, as well as seniors and elders, may not always be reflected in the way we care for those at the end of life. Conscious dying is virtually impossible if those around us are insensitive to our intimacy needs. And the truth is, this is just as pressing a concern for people in traditional relationships as it is for those in non-traditional relationships.
“Sex was a taboo subject when I was growing up, just like death and dying, come to think of it. And since I never even came close to conforming to the ideal body image, I always had a hard time of it.”
Raymond is a 50-year-old social worker at a home health care agency. He is thinking about applying for a position in the agency’s hospice program, but he is not sure if he is ready for the responsibility. “I need to better understand my own feelings about death and dying before I can hope to assist anyone else,” he tells me– hoping I can help him do this. “If I’m going to do this work, I want to do it well.”
Raymond’s mother died of ovarian cancer when he was seven, but he never really processed the loss. Now his friend Joann is also dying of cancer. Her imminent death has opened the floodgates of his unresolved grief associated with his mother. “I’m both drawn to Joann and repulsed by her all at the same time, and she knows it,” Raymond says. He’s confused and disoriented, and he no longer recognizes himself.
At a recent visit to his doctor, Raymond learned he is at high risk for heart disease. He also is considerably overweight. “I guess I’ve pretty much let myself go to seed,” he says. “I’ve always been a big guy, big-boned, as my mother would say, but now I’m just fat with a capital ‘F’.” The heart disease news didn’t come as much of a surprise.
Three years ago, Raymond went through a very acrimonious divorce, and his life was shattered. His three children live with his ex-wife in another state. He gets to see them only on holidays and for a month during summer.
After the divorce, Raymond lost his will to live. His weight ballooned, gaining more than a hundred pounds in a matter of months. “Maybe that’s why I’m considering this hospice move, and why I’m so ambivalent about Joann,” Raymond says. “Maybe I need to recover a sense of meaning.”
It sounds to me like Raymond is avoiding more than just his mortality– but sex and intimacy, too.
Raymond has never been comfortable talking about sex, and he has replaced sex with overeating. Turning to food was a lot easier than facing his own problems.
“I never had much confidence that I was a good lover,” Raymond confides. “When my wife left me, I figured it was because I was lousy in bed.”
However, for Raymond, intimacy was entirely different– and often enjoyed at the dinner table. He considers himself good at the art, one he calls “a meeting of souls.”
Sex was a taboo subject for Raymond when he was a child, just like death and dying. “Since I never even came close to conforming to the ideal body image, I always had a hard time of it,” Raymond says. “When I was older, I still let that haunt me, because I never had any confidence about my role as a husband or lover, either.”
I tell him that he is on to something. Our culture is indeed plagued with mixed messages about sexuality and intimacy. We can easily become obsessed with the image of the perfect body, with youth and beauty– and all of this can get in the way of finding a comfortable place to express ourselves as intimate, sexual beings.
I ask Raymond how important sexuality is in his life.
“I know I’ve built up this wall of fat to keep people out, and I can see that this crazy defense mechanism of mine will most likely kill me if I don’t get a handle on it,” he says. “I don’t aspire to being the world’s greatest lover, but it would be nice to stop running for cover every time the subject comes up.”
It’s never too late to relearn new and healthy ways to address our sexuality. I suggest that Raymond read up on the topic of male sexuality, and once he is more comfortable– he could move on to a partner.
Because Raymond is so comfortable at a dinner table and finds intimacy comes naturally, I ask him to bring the intimacy of the dining room into the bedroom. That way he could combine something he knows how to do well with something he is starting to learn.
He could invite a partner for dinner in bed. Plan a menu of finger food and other things to feed one another. Sex, like eating, should not be work– and maybe when Raymond gets really good at eating in the bedroom, he could try sex in the dining room.
Raymond should then take a long walk with his partner. The exercise will do him good, and he will have a perfect opportunity to do some more talking. I suspect that sex, sexuality and sensuality continue to confuse him because he knows very little about any or all of these things. Talking broadens our life experiences.
Learning to communicate is key to having a happy and healthy life– and death. Positive sex– and end of life– experiences are not mysteries. They are wonderful miracles, and Raymond is ready to welcome them both.
“She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her touch was both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.”
Do you remember my friend Holly? She is a 43-year-old graphic artist who shares a home with Jean, her wife of ten years, and their teenage daughter, Annie. She is also living with breast cancer. Holly had a double mastectomy three years ago and she has been dealing with some big-time body issues post-surgery.
The mastectomy scarred her both physically and psychologically. These scars have had a tremendous impact on her intimate life with Jean. In my earlier column, I recounted a meeting in which we tried to formulate a strategy to overcome these emotional and physical obstacles.
I asked Holly if she had ever taken the time to grieve the loss of her breasts. I suggested that she ask Jean to hold her while she mourned for what is no longer hers.
I recommended that the Holly and Jean begin to explore what is possible in their sex life together now. I suggested they avoid comparing what they are able to do now with how things were in the past.
I gave Holly two exercises: 1) spoon breathing — to rebuild a sense of confidence about being physically together with Jean again. And 2) guided-hand touch — to reestablish a threshold for what is possible between them.
I asked Holly to get back to me in a few weeks and let me know how things are going.
An ebullient Holly returned, and recounted the couple’s past weeks.
“On my way home from your office, I was trying to work things out in my head- what should I tell Jean? I couldn’t just blurt out all the stuff you and I talked about,” Holly said. “Besides, I was afraid that Jean would pitch a fit about me airing our dirty laundry in public. I thought maybe if I told her that I had a headache, she would leave me alone.”
As a matter of fact, Holly did have a headache, mostly as a result of all the anticipation. She had so much fear and shame bottled up inside for so long, she didn’t know what or how would come out. She was afraid she would say the wrong thing and make matters worse.
When she entered the house, Holly reported heading straight for the bedroom- but Jean cut her off at the kitchen, inquiring what was wrong.
“I was shaking all over,” she said. “My legs felt like rubber, and I began to cry. I wound up slumped on the floor where my crying became a wail.”
Understandably, Jean was freaked. She had never seen Holly in such a state. She helped her to her feet, and the couple stumbled to the bedroom to collapse.
However, Holly began to undress- until that point, a signal for Jean to exit.
“I haven’t let her see me naked since the surgery,” Holly said. “She was afraid to leave me alone in my hysteria, but she also didn’t want to embarrass me more. She got up to go, but I could feel her anguish.”
By that point, tears streamed down Jean’s face too. But Holly reached for Jean’s hand and pulled her down next to her. She began to undo the buttons of her top, turning away from Jean as she undid her bra. Holly was frozen in place.
“I was never so scared in all my life,” Holly told me. “Jean stroked my back with her fingers, and the caress was so gentle that it could hardly even be called a touch at all. But for some reason, it calmed me.”
As she turned toward Jean, Holly brought her hands to her face in shame and began to sob harder.
“She stood and faced me, and her hands reached out until they came to rest on my scars,” Holly said. “It was like her hands were both fire and ice, but I didn’t pull away. I was finally doing what I should have done two years ago.”
When Holly was finally able to speak, her first words were “they’re gone.”
She took Jean in her arms and the two kissed as lovers for the first time in three years.
Holly’s story and her courage were stunning, and she now reports noticing a renewed interest in living.
“I don’t mean just going through the motions- I’ve done too much of that already,” Holly said. “I want to live and be present for whatever life holds for as long as it is available.”
This new focus includes being aware of her own limits; when Holly is tired or in pain, she knows she needs to acknowledge it and rest.
I believe Holly is a role model for anyone facing a similar situation.
“Each of us is entitled to intimacy and pleasure in life, regardless of how our body looks or at what stage of life we are. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”
Clare and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, in remission for more than ten years, has recurred. This time, it is incurable.
Clare has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around,” she says. “I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end of life care I want.”
Clare has lived a rich, full life. “I was a career-woman long before there was such a thing as a career woman,” Clare says. “I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.
Her youngest son, Stan- her one and only ally in the family- brought her to our meeting. Stan tells me, “She’s feisty all right. There’s no flies on her, and the ones that are there are paying rent.”
Clare’s biggest concern is her family. They are pressuring her to fight against death, even though she doesn’t want to fight anymore. She wishes that they would join her in preparing for her death, rather than denying the inevitable.
I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.
I try to tell myself that my Charley will be just fine after I’m gone. After all, he does have our four grown kids and their families to look after him. But deep down, I know how lost he’ll be without me. Even after all these years, he still needs me to help him find a missing sock!
Whenever I try talking to him about how he’ll manage when I’m gone, he gets this awful flush across his face and starts shaking like a scared little boy. I feel so badly for upsetting him like that.
I’m so confused! He’s my husband and has been my best friend for well over fifty years, but I honestly don’t know how to reach him on this one.
Clare straightens herself up in her chair and continues.
Stan, here, is the only one I can talk to. Everyone else, including my husband, won’t hear a word when I start talking about planning my funeral or who will get my antique Tiffany lamp. They just say, ‘Oh, mother, stop talking like that, you’ll outlive us all.’
I know they mean well. They’re just scared and upset. I know I only have a short time left to live, so I want it to be real. I’m sick of always having to smile and pretend when I’m with them.
Clare’s immediate concern and the reason for our get together is her husband. She is afraid that they are drifting apart right when they need each other the most. I ask her for a little background on their intimate life together. Here’s what she had to say.
I was well into my thirties when the woman’s movement began. It was a time of great awakening for me. Charley was threatened, but I was able to win him over in time. It was only then that our sex life started in earnest. I finally realized that sex could be about pleasure and not simply about duty.
Even now, Charley and I are intimate, or were until the last couple of months or so. After we both turned 60, our sex wasn’t like when we were youngsters, but it’s just as special.
My main concern is the medications I’m taking for the pain. I’m woozy when I take them, but irritable without them. I want to be more available to Charley for the closeness that’s so important, but I’m often too out of it. This is a problem for Charley, too, because he doesn’t know how to touch me anymore. He keeps his distance, and this only makes matters worse.
How do I change this? Maybe it’s just over. What a sad thought that is.
I reach for Claire’s hand, and tell her how touched I am by the loving depiction of the intimate life the couple has shared. I know it won’t be easy for them to see this wind down. However, the closeness and tenderness they have had throughout the marriage need not stop them now.
I ask her if they still sleep together in the same bed, and if Clare would be comfortable initiating cuddling with Charley. She would.
Then here goes my suggestion: a regimen of spoon breathing and guided-hand touch that will work for them both. What I tell her follows:
You will, of course, need to take the lead role in this since, as you say, Charley no longer knows how to touch you. But once he gets the hang of it and has your permission to do so, he can continue even when you’re not able to reciprocate or even respond.
Lay on your side with Charley on his side close behind you like two spoons. Then, see if you can match one another’s breathing pattern. You will be amazed at how calming and comforting this will be. It will also be a very effective way to reestablish a threshold for what is possible between the two of you now, in this final stage of your life.
Now the guided-hand touch; take his open hand in yours and guide it to where you like to be touched. Long strokes, slow strokes, short strokes, soft strokes, or just having his hand rest on you. Show him the kind of pressure you are comfortable with where he is touching you. Once you’ve established a simple routine of breathing and touching, give Charley permission to carry on even if you happen to fall asleep.
Because this breathing and touching technique is so gentle and loving, it should be able to serve you even as you are actively dying. But you’ll have to let Charley know that this is what you want. You could tell him that you want to die in his arms. What an ideal way to bring your life together to a close. Do you think Charley will accept your invitation?
Clare isn’t sure, but says she thinks that- if suggested in a way that lets Charley know he would be doing it for her- it might work.
I tell her what I know to be certain: when words fail to communicate what is in your heart, you can always rely on touch. Maybe the two of them will find that nothing needs to be said at all. It could be the fondest of farewells, and something he will never forget.
Each of us is entitled to intimacy and pleasure, regardless of how our body looks or at what stage of life we are. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.
“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for us guys. At least in that situation, I don’t have to be honest.”
Michael is 52. Four years ago, he was diagnosed with multiple sclerosis. In the past two years, his disease process has escalated to the point in which he has become confined to a motorized wheelchair. Recently, he has had multiple MS-related setbacks that have kept him bedridden for several weeks at a time.
Things have become so difficult that several months ago, Michael was forced to sell his once-thriving law practice. The few hours of work he could manage each week there proved more frustrating than fulfilling.
Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The superhuman support of his second wife Maryanne, his son Kyle and his beloved Seattle Seahawks are the only things that prevent Michael from killing himself.
The first time I met this couple, an exasperated Maryanne tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledged his disruptive behavior. His ruggedly handsome face often distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”
When Mike and I have some time together, I broach the topic of sex. Mike blanches. I start by asking him some very pointed questions about his intimate life with his wife.
“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for guys. At least in that situation, I don’t have to be honest. This is very intimidating.
I don’t want to talk about this because I’m afraid you’ll want to know how a gimp like me does ‘it.’ I would have to tell you that a gimp like me no longer does ‘it’ because he can’t get it up anymore.
I would probably then have to tell you how frustrating it is for me not to be able to make love to my wife, and how this is a source of constant friction between Maryanne and me. She accuses me of throwing out the baby with the bathwater. All she wants is for us to be close.
So you see, if I told you all these things I would really be embarrassed. So I’m not going to say anything at all.”
“I see,” I responded. “Do you really see yourself as a gimp? Or is that just a term of endearment you use for yourself?”
“What do you think? Just look at me. I’m one fine specimen of virile manhood, wouldn’t you say?”
Mike turns bright red. I can’t tell if it’s rage or embarrassment. Maybe both.
“Ok, Mike, have it your way. Maybe you are a gimp. Although I wouldn’t have guessed by just looking.”
I tell Mike about another client I had years ago. His MS was even more advanced than Mike’s. His wife claimed that despite being a very large man and being bedridden, he was a remarkably good lover. She said he had a vivid imagination and an exceptionally talented mouth. He was affectionate and gentle, and there was absolutely no hint of a chip on his shoulder. My former client used to say that his pleasure came from giving pleasure to others.
Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence.
Mike apologized. “I’m not myself today. Or maybe this is what I’ve become. I know my wife and son think so.”
“So is all of this rage just about being unable to have an erection?”
I tell Mike that many women don’t care if their partner has an erection or not. While losing the ability to have an erection may be a humbling experience for a guy, his female partner may have an altogether different experience. For her, it may signal the possibility of some really good sex.
I ask, “How do you feel about your oral sex technique, Mike? If Maryanne wanted you to pleasure her, would you be comfortable doing that?
I also ask if he is able to communicate his need for intimacy to Maryanne, and if there are any specific issues that prove to be barriers in the way of him asking for what he needs.
“We stopped talking about sex about the same time I got sick,” Mike responds. “Actually, we never really discuss it at all. Maryanne brings up the topic, I get angry, and she gets hurt. That’s how ‘discussions’ about sex go in our house.”
Mike tells me that he wishes he could let his wife know how ashamed he is, not for being such a bully, but for being a coward. How we can’t seem to get past saying “I’m sorry.”
I ask if he’s talking to his doctor about his concerns.
“Nope, I just figured there wasn’t anything to talk about. Besides, it’s too embarrassing to admit.”
That’s something I tell Mike he should reconsider, and I then give him this advice:
“First, begin a dialogue with Maryanne. Let her know that you are serious about working through your problems.
Second, contact your doctor as soon as possible and initiate a frank discussion. A great deal of progress has been made recently in understanding and treating male erectile dysfunction.
Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence. Men with chronic problems are often too embarrassed to ask for help, and they may not have the impetus to do so. Statistics on how widespread this concern is among guys is hard to come by.
Getting an erection is a process that combines complex emotional and biological functions. So it’s clear that either a physiological or psychological problem can interfere in the arousal stage of the sexual response cycle.
For example, a relationship problem, depression, anxiety, prescription medications, excessive alcohol consumption, a hormone imbalance, cardiovascular disease, a neurological problem, being overweight, some cold and allergy medications or a poor diet can contribute to arousal dysfunction.
Major breakthroughs in treating erection problems were made by a chance discovery in the mid 1990’s. A researcher studying the effects of a new heart medication noticed a remarkable side effect in some of his male subjects…erections. When Viagra hit the market, it revolutionized erectile dysfunction therapy.
It is important to note that this medication, as well as all the other erectile dysfunction medications out there, are ‘erection enhancers’ not ‘erection inducers.’ Without proper stimulation, these medications will not cause an erection on their own.
There are some reported side effects to these medications and one can only get them by prescription, so talk to your doctor as soon as possible.
There are options. Stop thinking about what used to be, and start working at finding out what is currently possible. There is still no need to go without partnered sex and pleasuring. There are erogenous zones all over and in your body.
Your erection-centric sex life maybe over, but there is so much more available to you if only you give yourself and Maryanne a chance to make the discoveries. How much time do you have left? Don’t let this issue continue to contaminate your marriage and short-circuit the intimacy that is still available. Maryanne deserves better, and so do you. I’ll continue to be available to you as a coach and guide, if you wish. Because there’s no need to go through this alone if you don’t want to.
Now get out of here, and make something pleasurable happen. You won’t regret it.”
“Can’t you see I’m starving? For as much love as I get from you, I could be living on the moon. Are we ever going to resume our sex life? Because if I wanted to live like a nun I would have joined a convent. Your sex aversion is making me sick.”
I want to introduce you to my friend Holly.
She is 43 and a graphic artist. She had a double mastectomy three years ago and has been cancer-free since. She shares a home with her wife, Jean, and their teenage daughter, Annie.
A beautiful smile radiates from Holly’s full, mocha-colored face. Oodles of thick jet-black braids spring from her head as from a fountain gone mad. Her frequent laughter is like music, making her whole body dance and shake. However, her levity masks a somberness and apprehension.
She tells me: “I have become consumed with worries about getting sick again. My fears can turn into a paralyzing dread that takes days and sometimes weeks to shake. I know that until I can accept the possibility of my own death, I’ll never be able to embrace all the great things that are right in front of me.”
Later in our conversation, she lets me know she’s struggling with her body image. The mastectomy scarred her not only physically, but psychologically as well. “For a good six months after the surgery, I was so sick from all that poison, that the thought of sex of any kind made me nauseous,” she says. “I didn’t even want to have Jean in the same bed with me, and it was awful.”
Over time, the nausea diminished. Holly was able to resume some semblance of intimacy with Jean. They watched TV while holding hands, as long as it was not sexual.
A couple of months ago, however, Jean and Holly had a blowout. “We were screaming and yelling when she finally blurts out, ‘Can’t you see I’m starving?’” Holly recounts. “Jean tells me, ‘I have needs too, you know. For as much intimacy as I get from you, I could be living on the moon. Are we ever going to resume our sex life? Because if I wanted to live like a nun I would have joined a convent. Your sex aversion is making me sick.’”
The intensity of Jean’s outburst blew Holly away. She had completely forgotten about her needs. After the surgery, Holly didn’t feel like a woman.
When things simmered down, Jean could tell she wounded Holly deeply. But she knew Holly needed to address it.
Jean was right- Holly was starving too, but she was too afraid and ashamed to admit it. The pair made attempts to move past the status quo, but it’s not like the old days.
Holly wonders how she can make a gift of herself to someone if she’s not feeling much like a treasure. She still feels shame about losing her breasts. “I’m not a whole person anymore,” she says.
That’s where Holly is mistaken, and I jump in.
“Where did you lose your breasts, at the laundromat?” I laugh. “You didn’t lose your breasts- you had cancer, and they were removed to save your life. There’s no shame in that!”
It doesn’t sound like Jean thinks of her as “damaged goods,” and the attraction remains.
The couple needs to let their love heal Holly of shame and self-doubt.
Has Holly ever taken the time to grieve the loss of her breasts? Could she ask Jean to hold her while she weeps for what is no longer hers? “Share it with her,” I tell her. “Don’t carry this alone.”
Holly counters that her sex drive is non-existent.
The first couple of months after chemo and radiation, she experienced a weird feeling when Jean would attempt closeness. “It was like a bad acid trip,” she says. “I felt as though my body was there with her, but I felt nothing. I would lie there asking if I would ever feel normal again, and wondering how many more opportunities I would have to be with Jean before I died.”
Back then, Holly was fighting for her life. That fight is bound to alter a person’s perspective.
I suggest that she talk with Jean about her concerns. A neutral time- not during an intimate moment- is best. Then, Holly can speak freely without fear of Jean misinterpreting her comments as sexual rejection.
“But what if I screw up?” Holly asks. “If this somehow scars Jean for the rest of her life, I wouldn’t be able to forgive myself.”
Holly needs to reassure Jean that she is committed to working through this impasse. In return, Holly could ask for her patience. She needs to give Jean some sort of timeline- or Holly may put this off indefinitely.
“You didn’t lose your breasts- you had cancer, and they were removed to save your life. There’s no shame in that!”
I recommend they begin to explore what is possible now in their sex life together. Avoid comparison to the past. Keep the exploration simple. Don’t create a goal to be achieved.
They can start with cuddling and spoon breathing- Jean’s front to Holly’s back. They can match one another’s breathing pattern. First, Jean will try to match Holly’s breathing. Then, they switch positions. It’s the ideal place to start rebuilding a sense of confidence about being physically together.
Spoon breathing embraces could become more adventuresome. When Holly is feeling up to it, she can take one of Jean’s hands in one of her own and guide it over her body in a way that feels pleasurable and comfortable. This will be a very effective way of reestablishing a threshold for what is possible now, as well as moving forward.
“Keep these exercises playful and honor your limits,” I remind Holly- and ask her to let me know how it goes.
Richard Wagner, M.Div., Ph.D., ACS
Richard is psychotherapist/clinical sexologist in private practice since 1981. He lives and works in Seattle, WA.
He is the author of The Amateur’s Guide To Death and Dying; Enhancing the End of Life.
He has been working with terminally ill, chronically ill, elder and dying people in hospital, hospice, and home settings for over 30 years. He facilitates support groups for care-providers and clinical personnel, and provides grief counseling for survivors both individually and in group settings.
He founded Paradigm Programs Inc., an innovative nonprofit organization, as an outreach to and resource for terminally ill, seriously ill, elder and dying people.
He often speaks in the public forum on policy issues related to religion, human sexuality, aging, death and dying, living with chronic illness, and moral development.