Category Archives: Disability

Sexuality and Illness – Breaking the Silence


(This is a Companion piece to yesterday’s posting. You’ll find yesterday’s posting HERE!)

By: Anne Katz PhD

Sexuality is much more than having sex even though many people think only about sexual intercourse when they hear the word. Sexuality is sometimes equated with intimacy, but in reality, sexuality is just one way that we connect with a spouse or partner we love (the true meaning of intimacy). Our sexuality encompasses how we see ourselves as men and women, who we are attracted to emotionally and physically, what turns us on (eroticism), our thoughts and fantasies, and yes, also what we do when we are sexually active, either alone or with a partner. Our sexuality is connected to our image of ourselves and it changes over the years as we age and face threats from illness and disability and, eventually, the end of life.seniors_men

Am I still a sexual being?

Illness can affect our sexuality in many different ways. The side effects of treatments for many diseases, including cancer, can cause fatigue. This is often identified as the number one obstacle to sexual activity. Other symptoms of illness such as pain can also affect our interest in being sexually active. But there are other perhaps more subtle issues that impact how we feel about ourselves and, in turn, our desire to be sexual with a partner or alone, or if we even see ourselves as sexual beings. Think about surgery that removes a part of the body that identifies us as female or male. Many women state that after breast cancer and removal of a breast (mastectomy), they no longer feel like a woman; this affects their willingness to appear naked in front of a partner. Medications taken to control advanced prostate cancer can decrease a man’s sexual desire. Men in this situation often forget to express their love for their partner in a physical way, no longer touching them, kissing them, or even holding hands. This loss of physical contact often results in two lonely people.  Humans have a basic need for touch; without that connection, we can end up feeling very lonely.

Just talk about it!

seniors_in_bedCommunication lies at the heart of sexuality. Talk to your partner about what you are feeling, how you feel about your body, and what you want in terms of touch. Ask how you can meet your partner’s needs for touch and affection. The most important thing you can do is to express yourself in words. Non-verbal communication and not talking are open to misinterpretation and can lead to hurt feelings. Our sexuality changes with age and time and illness; we may not feel the same way about our bodies or our partner’s body that we did 20, 30 or more years ago. That does not mean we feel worse – with age comes acceptance for many of us – but we do need to let go of what was, and look at what is and what is possible.

The role of health care providers

Health care providers should be asking about changes to sexuality because of illness or treatment, but they often don’t. They may be reluctant to bring up what they see as a sensitive topic and think that if it’s important to the patient, then he or she will ask about it. This is not good. Patients often wait to see if their health care provider asks about something and if they don’t, they think that it’s not important. This results in a silence and leaves the impression that sexuality is a taboo topic.senior intimacy02

Some health care providers are afraid that they won’t know the answer to a question about sexuality because nursing and medical schools don’t provide much in the way of education on this topic. And some health care providers appear to be too busy to talk about the more emotional aspects of living with illness. This is a great pity as sexuality is important to all of us – patients, partners, health care providers. It’s an important aspect of quality of life from adolescence to old age, in health and at the end of life when touch and love are so important.

Ask for a referral

If you want to talk about this, just do it! Tell your health care provider that you want to talk about changes in your body or your relationship or your sex life! Ask for a referral to a counselor or sexuality counselor or therapist or social worker. It may take a bit of work to get the help you need, but there is help.

Complete Article HERE!

Sexuality at the End of Life

By Anne Katz RN, PhD

In the terminal stages of the cancer trajectory, sexuality is often regarded as not important by health care providers. The need or ability to participate in sexual activity may wane in the terminal stages of illness, but the need for touch, intimacy, and how one views oneself don’t necessarily wane in tandem. Individuals may in fact suffer from the absence of loving and intimate touch in the final months, weeks, or days of life.head:heart

It is often assumed that when life nears its end, individuals and couples are not concerned about sexual issues and so this is not talked about. This attitude is borne out by the paucity of information about this topic.

Communicating About Sexuality with the Terminally Ill

Attitudes of health care professionals may act as a barrier to the discussion and assessment of sexuality at the end of life.

  • We bring to our practice a set of attitudes, beliefs and knowledge that we assume applies equally to our patients.
  • We may also be uncomfortable with talking about sexuality with patients or with the idea that very ill patients and/or their partners may have sexual needs at this time.
  • Our experience during our training and practice may lead us to believe that patients at the end of life are not interested in what we commonly perceive as sexual. How often do we see a patient and their partner in bed together or in an intimate embrace?
  • We may never have seen this because the circumstances of hospitals and even hospice may be such that privacy for the couple can never be assured and so couples do not attempt to lie together.

intimacy-320x320For the patient who remains at home during the final stages of illness the scenario is not that different. Often the patient is moved to a central location, such as a family or living room in the house and no longer has privacy.

  • While this may be more convenient for providing care, it precludes the expression of sexuality, as the patient is always in view.
  • Professional and volunteer helpers are frequently in the house and there may never be a time when the patient is alone or alone with his/her partner, and so is not afforded an opportunity for sexual expression.

Health care providers may not ever talk about sexual functioning at the end of life, assuming that this does not matter at this stage of the illness trajectory.

  • This sends a very clear message to the patient and his/her partner that this is something that is either taboo or of no importance. This in turn makes it more difficult for the patient and/or partner to ask questions or bring up the topic if they think that the subject is not to be talked about.

Sexual Functioning At The End Of Life

Factors affecting sexual functioning at the end of life are essentially the same as those affecting the individual with cancer at any stage of the disease trajectory. These include:go deeper

  • Psychosocial issues such as change in roles, changes in body- and self-image, depression, anxiety, and poor communication.
  • Side effects of treatment may also alter sexual functioning; fatigue, nausea, pain, edema and scarring all play a role in how the patient feels and sees him/herself and how the partner views the patient.
  • Fear of pain may be a major factor in the cessation of sexual activity; the partner may be equally fearful of hurting the patient.

The needs of the couple

Couples may find that in the final stages of illness, emotional connection to the loved one becomes an important part of sexual expression. Verbal communication and physical touching that is non-genital may take the place of previous sexual activity.

  • Many people note that the cessation of sexual activity is one of the many losses that result from the illness, and this has a negative impact on quality of life.
  • Some partners may find it difficult to be sexual when they have taken on much of the day-to-day care of the patient and see their role as caregiver rather than lover.
  • The physical and emotional toll of providing care may be exhausting and may impact on the desire for sexual contact.
  • In addition, some partners find that as the end nears for the ill partner, they need to begin to distance themselves. Part of this may be to avoid intimate touch. This is not wrong but can make the partner feel guilty and more liable to avoid physical interactions.

Addressing sexual needs

senior intimacyCouples may need to be given permission to touch each other at this stage of the illness and health care providers may need to consciously address the physical and attitudinal barriers that prevent this from happening.

  • Privacy issues need to be dealt with. This includes encouraging patients to close their door when private time is desired and having all levels of staff respect this. A sign on the door indicating that the patient is not to be disturbed should be enough to prevent staff from walking in and all staff and visitors should abide by this.
  • Partners should be given explicit permission to lie with the patient in the bed. In an ideal world, double beds could be provided but there are obvious challenges to this in terms of moving beds into and out of rooms, and challenges also for staff who may need to move or turn patients. Kissing, stroking, massaging, and holding the patient is unlikely to cause physical harm and may actually facilitate relaxation and decrease pain.
  • The partner may also be encouraged to participate in the routine care of the patient. Assisting in bathing and applying body lotion may be a non-threatening way of encouraging touch when there is fear of hurting the patient.

Specific strategies for couples who want to continue their usual sexual activities can be suggested depending on what physical or emotional barriers exist. Giving a patient permission to think about their self as sexual in the face of terminal illness is the first step. Offering the patient/couple the opportunity to discuss sexual concerns or needs validates their feelings and may normalize their experience, which in itself may bring comfort.

More specific strategies for symptoms include the following suggestions. senior lesbians

  • Timing of analgesia may need to altered to maximize pain relief and avoid sedation when the couple wants to be sexual. Narcotics, however, can interfere with arousal which may be counterproductive.
  • Fatigue is a common experience in the end stages of cancer and couples/individuals can be encouraged to set realistic goals for what is possible, and to try to use the time of day when they are most rested to be sexual either alone or with their partner.
  • Using a bronchodilator or inhaler before sexual activity may be helpful for patients who are short of breath. Using additional pillows or wedges will allow the patient to be more upright and make breathing easier.
  • Couples may find information about alternative positions for sexual activity very useful.
  • Incontinence or the presence of an indwelling catheter may represent a loss of control and dignity and may be seen as an insurmountable barrier to genital touching.

footprints-leftIt is important to emphasize that there is no right or wrong way of being sexual in the face of terminal illness; whatever the couple or individual chooses to do is appropriate and right for them. It is also not uncommon for couples to find that impending death draws them much closer and they are able to express themselves in ways that they had not for many years.

Complete Article HERE!

My New Book

Dear friends and colleagues

I am pleased to announce the publication of my new book The Amateur’s Guide To Death And Dying: Enhancing The End Of Life.

(Click on the book art below for a synopsis and to purchase the book.)

The Amateur’s Guide To Death And Dying is specifically designed for terminally ill, chronically ill, elder, and dying people from all walks of life. But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will also benefit from reading the book.

The Amateur’s Guide To Death And Dying is a workbook that offers readers a unique group/seminar format. Readers participate in a virtual on-the-page support group consisting of ten other participants. Together members of the group help each other liberate themselves from the emotional, cultural, and practical problems that accompany dying in our modern age.

The Amateur’s Guide To Death And Dying helps readers dispel the myth that they are incapable of taking charge during the final season of life. Readers face the prospect of life’s end within a framework of honesty, activity, alliance, support, and humor. And most importantly readers learn these lessons in the art of dying and living from the best possible teachers, other sick, elder, and dying people.

The Amateur’s Guide To Death And Dying engages readers with a multitude of life situations and moral dilemmas that arise as they and their group partners face their mortality head on.

The Amateur’s Guide To Death And Dying offers readers a way to share coping strategies, participate in meaningful dialogue, and take advantage of professional information tailored to their specific needs. Topics include spirituality, sexuality and intimacy, legal concerns, final stages, and assisted dying. The book does not take an advocacy position on any of these topics. It does, however, advocate for the holistic self-determination of sick, elder, and dying people, which can only be achieved when they have adequate information.

Facing your mortality with the kind of support The Amateur’s Guide To Death And Dying offers does not eliminate the pain and poignancy of separation. Rather it involves confidently facing these things and living through them to the end.

This innovative workbook on death and dying is now available on Amazon and in bookstores. I welcome your thoughts, comments, and reviews.

All the best,

Richard Wagner, Ph.D., ACS
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Buy the book HERE!

More SEX WISDOM from Ruth Neustifter — Podcast #255 – 01/12/11

Hey sex fans, welcome back!

My good friend and esteemed colleague, Dr. Ruthie is here again today for more of her signature SEX WISDOM. Gosh, I’m so glad she’s able to join us again, because I had so much fun with her last Wednesday. We were chattin’ up a storm, like it was old home week, when I realized our time together had run out. So I had to beg her to please come back for another round this week. It’s just no fair not gettin my fill of this extraordinary sex educator.

But wait, you didn’t miss Part 1 of this delightful conversation, which appeared here last week at this time did you? Well not to worry if ya did, because you can find it and all my podcasts in the Podcast Archive right here on my site. All ya gotta do is use the search function in the header; type in Podcast #253 and Voilà! But don’t forget the #sign when you do your search.

Dr. Ruthie and I discuss:

  • Sex and disability;
  • Stress reduction techniques for better sex;
  • Sex toys and sexual wellbeing;
  • Her association with Funwares;
  • Her YouTube channel;
  • Teenage sexuality;
  • Searching for sex-positive and kink-positive healing and helping professionals;
  • Her surprising inspirations and sexual heroes;
  • Advice for the aspiring sex educator.

Dr. Ruthie invites you to visit her on her website HERE! Look for her on Facebook and Twitter HERE & HERE!

Click on the book art below to pre-order The Nice Girl’s Guide to Talking Dirty.


Check out The Lick-A-Dee-Split Connection. That’s Dr Dick’s toll free podcast voicemail HOTLINE. Don’t worry people; no one will personally answer the phone. Your message goes directly to voicemail.

Got a question or a comment? Wanna rant or rave? Or maybe you’d just like to talk dirty for a minute or two. Why not get it off your chest! Give Dr Dick a call at (866) 422-5680.


Look for my podcasts on iTunes. You’ll find me in the podcast section, obviously, or just search for Dr Dick Sex Advice. And don’t forget to subscribe. I wouldn’t want you to miss even one episode.

Today’s podcast is bought to you by:

A New Year of Q&A — Podcast #252 — 01/03/11

Hey sex fans,

We’re BAACK, and it’s a brand new year! Did ya’ll have a brilliant holiday season? I sure hope so. And while I really enjoyed my brief winter break from podcasting, I’m eager to get back at it, don’t cha know. During these last two weeks of relative down time, I’ve been busy lining up an amazing array of outstanding guests who will make 2011 another banner year of interviews and conversations.

But today we break open the new year with some hot Q&A action. We haven’t had one of these kinds of shows since mid October. So that means my inbox is overflowing. I also have the pleasure of announcing The Dr Dick Review Crew’s Favorite Products of 2010 list.

Today we hear from:

  • Josiah is having a problem coming out, because his family is super religious.
  • Donna is my kind of perv. She’s into BDSM, but she’s also disabled.
  • The Powerchair Pimp is sick and tired of being a virgin.
  • Arthur wants to hook up with older dudes.
  • Stacy may have orgasmic related migraines.

The Dr Dick Review Crew’s Favorite Products of 2010


Check out The Lick-A-Dee-Split Connection. That’s Dr Dick’s toll free podcast voicemail HOTLINE. Don’t worry people; no one will personally answer the phone. Your message goes directly to voicemail.

Got a question or a comment? Wanna rant or rave? Or maybe you’d just like to talk dirty for a minute or two. Why not get it off your chest! Give Dr Dick a call at (866) 422-5680.


Look for all my podcasts on iTunes. You’ll fine me in the podcast section, obviously, or just search for Dr Dick Sex Advice. And don’t forget to subscribe. I wouldn’t want you to miss even one episode.

Today’s Podcast is bought to you by: DR DICK’S — HOW TO VIDEO LIBRARY.


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