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In our society, people living through terminal states are often assumed to be asexual. They are subjected to a dreadful kind of hushed propriety that acts to suppress their needs and feelings, denying them outlets for sexual and emotional expression when they may truly need them the most. To change this cruel predicament, families, assisted living providers, hospitals, and hospices all need to foster opportunities for intimacy and sexual expression.

Living Until You Die
Years ago Elisabeth Kubler-Ross, author of the famous book On Death and Dying, was touring the country speaking about her book’s subject. She took my partners' mother with him, Barbara, who had advanced systemic cancer with which she had battled for over ten years of radical surgery and treatments. At one point during a speaking engagement, Elisabeth introduced his mother as a person who was coping with dying. Barbara got up on stage and said:
“I am not dying: I am living”.

Staying whole and expressing your needs is so very essential now! Do not put passion, love, or the desire for intimacy away; cherish them, while simultaneously honoring any physical limitations you may be experiencing.

Stay Close When Your Partner Is Dying
When a loved one is dying, we often self-protect by withdrawing from them emotionally and sexually. Avoiding intimate contact with them because you are grieving their approaching demise, or because you don't want to accept their eventual loss, is very understandable, but it is also a way of isolating and burying your partner before their death. They do not want you to mourn over them and be maudlin; they want you to engage with them and love them. Even if extreme age, fragility or illness makes some or most aspects of sex impossible, touch, intimacy, affection, tenderness, and loving attention all remain terribly important. Sharing your feelings honestly is terribly important. These last years, days and moments spent with a loved one are treasure to hold in your heart forever.


Q & A with Shain Stodt

We Need Intimacy In Hospice

Q. My wife is in hospice. She is weak, but we would still like very much to lie together naked and touch each other, and sometimes make love. But we never get the chance to because of the lack of privacy in her care facility. We've mentioned our needs to her nurses but they seem to think that this is not done. Isn't there anything I can do about this awful prohibition?

A. Yes, there certainly is. It is extremely important for the two of you to have this affirming, comforting, intimate, very private time together, and you should not be denied it.  

Inform your wife's doctor and if necessary the in-house counselor of your need to have private, uninterrupted time together in her room. Let them know that you wish to be secure in the knowledge that you will not be disturbed. Ask them to speak to all the staff that enters your wife's room and explain the need for absolutely uninterrupted privacy. Unfortunately because of your wife's condition it would probably be unwise to actually lock her door, but ask the hospice to make up a special DO NOT ENTER sign that the staff will respect. 

The hospice staff might understandably be concerned that a medical issue could arise during your private time together requiring their immediate access and attention, but if you leave the door unlocked (but of course closed) and know the location of her call button so that you can summon them should the need arise, this should alleviate this valid concern. 

The real need to allow for intimacy has not yet been adequately addressed by our health system. You may have to break some ground here, but it is so very important for the two of you to be together that it is well worth the effort.     ~ Shain 


Living Until You Die

Q. I am critically and terminally ill. With HIV complicated by advanced prostatic and pancreatic cancer, my prognosis is short-term. Sexual intimacy with my husband is extremely important to me, even though I’m not always well enough for a complete orgasm. I treasure our intimacy, whatever form it takes, inexpressibly.

Whenever I approach him sexually, though, he bursts into tears, and then seems to stay in a state of grief for hours or days afterward.

To me sex has always been an affirmation of our love, and I feel cut-off from something priceless by his reaction. On the other hand, I don’t want to bring sadness to him. I feel that time is short and I want him to have happy memories of our last days together. What do I do?


A.  For many people who love each other, sexual intimacy is the epitome of expressing love. When one partner’s death is approaching, sex can become the symbol of losing this love which is so precious.

The closeness and intimacy of loving sexual expression may also open up some powerful emotions that your partner is trying to keep a lid on as a coping device.

Fear of loss and grief can invade and paralyze life. Your partner is too frightened of his future without you to cherish the present. Your ability to convey to him the simple reality that you are alive now and want to relish and enjoy your time together is handicapped by the intensity of his emotional block.

Very gently emphasize sharing positive things that bring you joy and pleasure in your daily lives together. Tell him how you miss sexual intimacy together and about how you love making love with him, but don’t press him to be sexually demonstrative. Let him be. As long as he can only see the bleakness of your absence while in your presence, he’s going to stay in emotional hiding. He must find a place of balance that allows him to overcome his fear. You can only be patient and loving and honest, Jackson.


I Want To Be Close Before It's Too Late

Q. I’m dying, and through the wonders of magical thinking, my partner has convinced herself that it won’t really happen. She nurses me compulsively but avoids everything else real; conflict, financial concerns, politics, the need to buy groceries – and sex.  

I really, really miss sex.  

My doctor says we can still be sexually active and that the endomorphs might even benefit me (and her), but I believe she does not want to chance the emotional roiling that sex could bring up. I understand this, but I feel that we’re losing what’s left of our life together. I want her to acknowledge reality and share herself with me. -  P.

A. Death is a real part of the Earth's perpetuating cycle of life. Although our deaths may be fearful unknowns and the deaths of loved ones may cause excruciating heartbreak, acknowledging death also impels us to cherish and feel life more fully and passionately. Unfortunately, sometimes the fear, grief, and pain involved are too overwhelming, and people retreat beyond the reach of these searing feelings. 

Be very patient and tender with your partner. She needs to be consoled, and to find a way to reconcile herself with your coming death in order to bear the weighty emotions she’s carrying. Don’t be too hard on her magical thinking; it’s how she’s coping. If she sees your imminent death as nothing but an empty and terrible future, she will not come out of her rabbit hole.  

Explain gently that you miss her and need to feel her love. Give her affection without erotic demand. Show her that you two don’t need to spend your time together focused on your death; focus on life. What do you love doing together that is within your current physical capacity? Share these things! 

Talk to her about non-threatening subjects, but really talk and share your feelings. This may allow her the space to open up. 


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