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Hope for Love: Practical Advice for Intimacy and Sex After Stroke (CE)
Stroke survivors are a major group of patients served by rehabilitation nurses. The lingering sequelae of a stroke may be devastating to a couple’s relationship. This article provides practical advice that nurses can give to a stroke patient and his or her partner to cope with or overcome changes in intimacy and sexuality after a stroke. This article addresses the wide range of changes likely to occur in the patient and his or her partner, and readers are referred to additional resources for the nurse, the patient, and his or her partner. This information provides the tools for nurses to help our patients and their partners maintain their hope for love.
Stroke is a leading cause of sudden disability in older adults, and stroke survivors are a major group of patients served by rehabilitation nurses, with 430,000 hospital discharges a year among people 45 and older who have suffered stroke (U.S. Department of Health and Human Services, 2005). In the months after the stroke, lingering sequelae result in changes in sexual intimacy for both the stroke survivor and his or her partner, and these can be devastating to the relationship (Forsberg-Warleby, Moller, & Blomstrand, 2002; Korpelainen, Nieminen, & Myllyla, 1999; Murray & Harrison, 2004). The changes may be caused by concurrent illnesses, the cumulative effects of aging, or the stroke itself. Couples are unlikely to know or care what the underlying cause is, and it is not important for the nurse or physician to identify the cause. Some changes affect only the stroke survivor, some affect the partner, and some may occur for both the stroke survivor and his or her partner.
Common sexual problems after stroke include loss of desire, feelings of being less attractive, fatigue, chronic aches and pain, depression, persistent vaginal dryness, erectile dysfunction (ED), inability to find comfortable positions for intercourse, lack of satisfaction or pleasure in sex, concern about the ability to consent to sex, loss of the lover, relationship problems, concerns about masturbation, speech difficulties, incontinence, memory problems, and difficulty expressing emotions. Recent research (Korpelainen et al., 1999) confirms what has been found for decades: Stroke survivors and their partners want information on intimacy. This need for information is also seen in the premorbid conditions that led to the stroke. Nusbaum, Hamilton, and Lenahan (2003) noted that with any chronic illness, patient education and reassurance are essential. Using Melnyk and Fineout-Overholt’s (2005) criteria, Steinke (2007) rated the level of evidence as Level I that nurses need to discuss the necessary modifications to sexual activity, the effect of the patient’s health on sexuality, and the effect of medications on sexuality. Nurses must give information to all patients, whether they plan to act on the advice or not. As one 80-year-old widow told the author, “I want the advice, after all you never know.”
This article briefly reviews the changes caused by stroke and provides practical advice on dealing with them, from the author’s experience in talking with couples for more than 10 years; Rogers, Amador, and Bryan’s (Cournan & Kautz, 2007) suggestions in the Association of Rehabilitation Nurses Core Curriculum; from clinical and research articles; and instructional brochures written by self-help associations. In addition, clinical observations and anecdotal reports are included to illustrate how powerful changes in intimacy can be and how nurses can intervene effectively. These recommendations are appropriately classified as Level VII evidence, using Melnyk and Fineout-Overholt’s (2005) criteria for evidence-based practice. Level VII includes opinions and non–research-based recommendations by experts in the field. Rehabilitation nurses need to do research on whether these interventions are effective in enhancing intimacy in patients and their partners. Indeed, this is one of the 2005 research priorities of the Rehabilitation Nursing Foundation. This article is not intended to provide an in-depth review of each problem; rather, readers are encouraged to seek out other sources for more information on coping with these changes. This article references up-to-date and reliable information for nurses, stroke survivors, and their partners. Readers are encouraged to check Web sites that have been evaluated by the author, by Milner and Kiser (2002), or by the Sexuality Information and Education Council of the United States and found to contain reliable and practical information for stroke survivors and those they love. Nurses are encouraged to go to these Web sites, save the handouts to the computers on their rehabilitation units, and then print them and give them to patients or create links to the rehabilitation facility Web pages for patients. Nurses will find that having a comprehensive repertoire of information decreases their own anxiety as they discuss intimacy and sex with their patients.
Although the focus of this article is on sex and intimacy after stroke, nurses may find the advice helpful to those with other chronic illnesses and disabilities as well. Kaplan’s (1990) triphasic physiological model of sexual response provides a useful framework for examining the most common sexual problems in the sexual response caused by aging and stroke. Although it is not necessary to teach stroke survivors and their partners sexual response physiology, most nurses will find the underlying physiology useful when teaching patients.
Kaplan’s Model of Sexual Response and Common Sexual Problems
Kaplan (1990) expanded the work of Masters and Johnson to develop a triphasic physiological model of the human sexual response. The first phase is desire, the second phase is excitement, and the third is orgasm. Desire, excitement, and orgasm are controlled by different parts of the central nervous system, and therefore a stroke will have different effects on different phases of the sexual response. The desire phase may be stimulated by endorphins in the limbic system of the brain. Desire leads a person to pursue sex. It is stimulated by pleasure and inhibited by fatigue and pain. The second phase, the excitement phase, is controlled by the autonomic nervous system and leads to a generalized increase in muscle tone and vasodilation of the genital blood vessels. Excitement leads to an erection in men and vaginal lubrication, clitoral excitement, and swelling of the labia in women. Erections and vaginal lubrication are physiological correlates in men and women. Orgasm, the third phase, is a reflex release of the myotonia and vasodilation of the excitement phase. Orgasm is controlled by the spinal reflex arcs in the sacral section of the spinal cord.
Most people believe that during sex, desire precedes excitement, and excitement precedes orgasm; however, this is not necessarily true. A partner who is not feeling desire may find that by going along with sex, he or she becomes excited sometime during the process and then feels desire. A woman may discover that even after reaching orgasm through oral or manual stimulation by her partner, she does not have enough vaginal lubrication (excitement) to permit intercourse. Likewise, although many women and men do not realize it, a man may reach orgasm without an erection. Informing both men and women of these variations in sexual response is a key part of sex education.
Adults of all ages, those who are healthy, and those with acute and chronic illnesses may experience problems with each phase of the sexual response. A lack of desire due to daily stressors, fatigue, pain, or depression is common. Occasional inability to achieve or maintain an erection is common for most men, and most women experience occasional vaginal dryness. Most of the time, these problems are caused by stress, fatigue, or pain. The most common orgasm phase disorders are premature ejaculation in men and lack of orgasm in women. Excellent Web sites that address the problems of occasional lack of desire, temporary erection problems, occasional vaginal dryness, premature ejaculation, and inability of a woman to reach orgasm include the Sexual Health Network (http://www.Sexualhealth.com) and the Sinclair Institute (http://www.intimacy institute.com).
Changes in the Sexual Response Caused by Aging
Because strokes tend to occur with increasing age, sexual changes with aging and couples’ responses to these changes are useful to remember when dealing with survivors of stroke. It has been accepted for decades that men and women experience changes in sexual response with age. In men it takes longer and more direct stimulation to achieve an erection. Erections are not as hard and do not last as long. Men may not reach orgasm with every sexual encounter. Women need more direct stimulation for vaginal lubrication. Orgasm in women may feel different because of changes in the uterus after menopause. In healthy adults these changes may also result from subclinical atherosclerosis. Levy and Freyberg (2004) and Messinger-Rapport, Sandhu, and Hujer (2004) provided excellent overviews of sexual changes caused by aging in both men and women.
Kautz (2006) reported that couples respond differently to these changes. Some fight the changes and adopt exercise and diet programs to reverse them. Others seek treatment. Still others may want to seek treatment but are reluctant to do so. Others do not seem to care and go without treatment. Still others seem to transcend the need for sex and actually become closer even though they are no longer sexually active. There is also anecdotal evidence that the changes are not permanent. Some couples report having problems for years and then later overcoming the changes through sexual stimulation. After the death of one partner, an older man or woman may overcome problems when resuming sex with a new partner. Two reliable Web resources for older couples who want to overcome these changes include “Sexuality in Midlife and Beyond” (available from http://www.health.harvard.edu) and “Sexuality in Later Life” (available from http://www.nia.nih.gov).
Intimacy and Sexual Changes Caused by Comorbid Diseases
Risk factors for having a stroke include older age, diabetes mellitus, hypertension, heart disease, peripheral vascular disease, and chronic lung disease. Although it is unlikely that people who have a stroke will have all of these premorbid conditions, they are likely to have at least one. Arthritis and chronic aches and pains often accompany old age also. All of these diseases and conditions have the potential to affect sexual expression and intimacy. The longer one has the disease and the more severe the symptoms are, the more likely sexual problems are. Those who have a stroke are likely to have had severe diabetes and heart disease for some time. Therefore, those who have had a stroke have had to adapt in order to remain sexually active or have chosen to discontinue sexual expression. As with aging, some choose to discontinue sexual expression, others seek treatment, and still others want treatment but do not seek it. Because those who have a stroke often have heart disease, diabetes, and arthritis, and each of these conditions may lead to unique sexual problems; they are briefly reviewed here.
Intimacy and Sexual Changes Caused by Arthritis and Chronic Aches and Pains
Paice (2003) and Kautz (2006) summarized common problems with intimacy and arthritis and provided suggestions for overcoming these problems. Arthritis leads to joint pain, limitations in joint movement, and fatigue. It is helpful to schedule a time of the day for intercourse when energy is high and pain is at its lowest. Massage, hot or cold packs, or a relaxing shower or bath can be incorporated into lovemaking. Couples who continue to have intercourse will need to adapt to positions that facilitate sexual expression and do not lead to pain.
Intimacy and Sexual Changes Caused by Diabetes
Enzlin, Mathieu, and Demytteanere (2003) and Sarkadi and Rosenqvist (2003) wrote about sexuality and diabetes. Sexual changes caused by diabetes result from high blood sugar, which leads to autonomic and peripheral neuropathies and atherosclerosis. The neuropathy and atherosclerosis lead to vaginal dryness, frequent vaginal infections, and ED. In addition, diabetic gastroparesis and oral hypoglycemics may increase flatulence. High blood sugar can also cause ketotic bad breath, and fatigue may accompany fluctuating blood sugars. Flatulence, bad breath, and fatigue are sure ways to kill sexual desire and intimacy in the diabetic and his or her partner.
Diabetics report that keeping their blood sugar in control, and especially keeping their hemoglobin A1c below 7, may prevent or reverse all of these sexual problems. This can motivate your patient to exercise regularly, follow dietary recommendations to maintain the appropriate blood sugar level, and take insulin or oral hypoglycemics as prescribed. For more recommendations on sex and diabetes, see “Intimacy and Diabetes” (available from http://www.netdoctor.co.uk) and “Diabetes and Woman’s Sexual Health” and “Diabetes and Men’s Sexual Health” (available from http://www.diabetes.org).
Intimacy and Sexual Changes Caused by Hypertension and Heart Disease
Johnson (2004) and Steinke (2005) summarized the typical changes in sexuality and recommendations for sex with heart disease. The atherosclerosis that causes hypertension and heart disease may also reduce genital circulation and lead to ED and vaginal dryness. In addition, antihypertensives may interfere with both sexual desire and sexual excitement. Fatigue and depression often accompany heart disease and some antihypertensives, particularly beta-blockers and vasodilators. Both fatigue and depression can lead to problems with intimacy and sexual problems.
Recommendations for those with hypertension or heart disease include talking to the healthcare provider who prescribed the antihypertensives if the drugs appear to be leading to ED or vaginal dryness, especially if the problem lasts longer than 6 weeks. Often another medication can be prescribed, and the problem will resolve. Another recommendation is to increase endurance through regular exercise, including walking, because the energy needed for intercourse has been compared with that needed to climb a flight of stairs. It is unlikely that the patient will experience chest pain or a recurrent heart attack during masturbation or intercourse if he or she waits a couple of hours after a meal to have sex and avoids having sex after a heavy meal. Sex is best in a location with a cool temperature, neither too hot nor too cold, while relaxed and not rushed, and with a familiar partner. For more information on sex and heart disease, see “Heart Disease, High Blood Pressure, and Sexuality” (at http://www.med.umich.edu/1libr/aha/umheartdis.htm) and “Sex After a Heart Attack” (at http://www.med.umich.edu/1libr/wha/wha_heartdis_car.htm).
There is a growing body of evidence that being overweight, smoking tobacco, and being sedentary are not only risk factors for stroke, heart disease, and diabetes but also contribute to ED and vaginal dryness. For more information, see “Studies Show Exercise Can Improve Your Sex Life” (available from http://www.acefitness.org) and “Smoking and Reproductive Life” (at http://www.tobacco-control.org).
Loss of Desire
The overwhelming physical and cognitive changes that follow stroke may lead to a loss of sexual desire in a person who before the stroke regularly enjoyed giving and receiving sexual pleasure. Indeed, loss of desire is one of the most common problems reported by sexual partners of all ages, with or without a chronic illness (Nusbaum et al., 2003).
Recommendations for those who have lost their feeling of desire seem simple, yet regaining desire takes conscious effort every day. Spending time together doing activities that both enjoy, or even just sitting quietly holding hands or embracing each other may increase desire. Treatment of depression and other physical and cognitive impairments may also be effective. Resources to help patients and their partners cope with a lack of desire are available from the Sexual Health Network (http://www.sexualhealth.com).
Feeling Less Attractive
After a stroke, both men and women may feel less attractive. Facial drooping, speech problems, hemiparesis, difficulty eating, and incontinence all may contribute to these feelings. It may be hard to keep up with grooming, dressing, and putting on makeup.
“Hope: The Stroke Recovery Guide,” available from the National Stroke Association at http://www.stroke.org, offers several ideas that can help a person feel more attractive after a stroke, including taking the time each day to clean up and change from nightclothes and robes into clothes that are easier to manage but still help the person look his or her best. People may get dressed up because they have someone coming over or are getting ready to go somewhere, and a stroke survivor may not see the need if he or she does not have an appointment or is not expecting guests. However, taking the time to get ready often gives one the idea to invite someone over or to go out. A family member, friend, or personal aide can help with bathing and dressing. Other activities can also assist in creating a feeling of being more attractive. Listening to music together or watching a favorite TV show may help improve mood. A couple can spend some time sitting outdoors on a sunny day. Setting one or two new goals each week may increase the feeling of being in control, productive, and attractive and may increase desire. One of those goals should be spending some time enjoying life with others.
Fatigue is a common manifestation of most chronic illnesses, including stroke. Medications, especially antihypertensives, may also contribute to fatigue. Common recommendations for managing fatigue include balancing rest and activity periods, using work-saving devices and routines, getting assistance with meal preparation and housework, and engaging in low-level aerobic activities to increase endurance.
Kautz (2006) suggests that those whose fatigue interferes with sexual expression should plan for sex at a time when they are well-rested. Some argue that loss of spontaneity interferes with romance, but many couples report that planning for sex when both are well-rested and spending romantic time together before sex actually increase romance because couples feel that they are “getting their priorities straight.” A great resource for information is “Sexuality: Chronic Illness and Your Sex Life” (available from http:// familydoctor.org).
Depression may follow stroke as a result of cognitive and physical losses from the stroke itself, changes in relationships, loss of roles, loss of employment, decreased self-esteem, or loss of comfort in participating in social and recreational activities.
When one or both partners appear to be depressed, it is helpful to find a person they can confide in and talk to. It may be difficult to distinguish between depression, cognitive impairment, and speech or language problems. Couples should talk to their healthcare provider about whether taking an antidepressant is a good idea for a short period to get through the tough times. Some clinicians are concerned that antidepressants may slow stroke recovery; therefore, the clinician will need to decide whether the depression or the medication is more important. For information on which antidepressant to prescribe to avoid sexual dysfunction, see Smucny and Park (2004). For more information on depression and sex, resources are available from the Sexual Health Network (http://www.sexualhealth.com); also see “Sex and Depression” available in the Good Vibes weekly magazine sex and disability archive.
Persistent Vaginal Dryness or Erectile Dysfunction
Vaginal dryness or ED may indicate an underlying medical condition. Therefore, any patient with stroke who experiences vaginal dryness or ED should see his or her healthcare provider. A great deal has been published on the treatment of ED, and therefore it will be only briefly addressed here. ED can be treated through medical management of an underlying disease process or with the phosphodiesterase type 5 (PDE5) inhibitors sildenafil (Viagra), tadalafil (Cialis), or vardenafil (Levitra), vacuum constriction devices, self-injection therapy, urethral suppositories, or, as a last resort, penile implant surgery. Lewis, Rosen, and Goldstein (2003, 2005b) and Tomlinson (2005) provided excellent overviews of ED and treatment. Lewis, Rosen, and Goldstein (2005a) developed an excellent patient handout on ED and available treatments.
Women with vaginal dryness may be treated with estrogen products or over-the-counter moisturizers. There is also anecdotal evidence that PDE5 inhibitors may be effective in treating vaginal dryness. For an excellent overview of female sexual dysfunction and treatment recommendations, see Arcos (2004) and Kellogg-Spadt (2004). Other resources include “Licking Vaginal Dryness Without a Prescription” (available from http://www.womenshealth.org).
Inability to Find a Comfortable Position for Intercourse
Hemiparesis following a stroke can have profound effects on a couple’s ability to engage in many sexual activities. Older couples may have limitations caused by breathing difficulties, hemiparesis, arthritic pain, or back pain or has had a hip replacement. Additional recommendations for specific health problems and additional positions can be found in “Being Close: Sex and Lung Disease” (available from the Lung Line, 1-800-222-Lung), “Guide to Intimacy with Arthritis” (available from http://www.arthritis.org), and a pamphlet written by the author, “Chronic Low Back Pain and How It May Affect Sexuality” (available from http://www.ukhealthcare.uky.edu/patiented/booklets.htm).
Lack of Satisfaction or Pleasure in Sex
Some stroke survivors and their partners may complain that sex does not feel like it used to. Some conclude the intercourse takes too much effort. Some are so sure they will not like sex after the stroke that they do not even try. Brick and Lunquist (2003) suggested reminding the couple that there are many satisfying sex activities that do not involve intercourse. It may take time to learn new ways of thinking about pleasure. It is helpful to be adventurous and experiment with new sexual positions and sexual aids such as vibrators. Setting aside some quiet time to be together and discuss each others’ changing needs and desires can also be helpful. More information, books, videos, and lubricants can be obtained from http://www.goodvibes.com (1-800-BUY-VIBE) and http://www.sexed.com, two reputable sex education companies.
Concern About Ability to Consent to Sex
Cognitive and language impairments after a stroke may raise questions about whether a stroke survivor can consent to participate in sexual activities (Kautz, 2006). A nursing student who worked in a nursing home noted that a right hemiparetic, aphasic stroke survivor’s husband would come and pick her up on Saturday morning for an outing. When he brought her back, the staff would notice, when bathing her, that they had engaged in intercourse. The author asked the student whether the patient appeared agitated or upset before or after these outings or whether there were any signs of struggle. The student reported that the woman appeared excited and happy before these outings and relaxed and content afterwards. These behaviors appear to indicate that there was no abuse and that the resident was giving consent. However, although sexual abuse or rape of those with stroke has not been reported in the literature, it seems likely considering that adults with other forms of cognitive impairment have been reported to be sexually abused and raped. Messinger-Rapport et al. (2003) recommended openly discussing with family and friends the cognitively impaired person’s previous sexual practices and moral and religious beliefs. They suggested that even though a cognitively impaired resident may not be able to make an informed decision about undergoing surgery, the person may still be able to make a decision about engaging in sex. Kamel and Hajjar (2003a, 2003b) authored two excellent articles on sexuality in the nursing home. See the American Medical Directors Association Web site (www.amda.org) for policies and educational materials on sex in the nursing home. These policies can be adapted for use in rehabilitation facilities.
Loss of a Lover (for the Partner)
Partners of stroke survivors have told the author that the hemiparesis, memory problems, and aphasia resulting from a stroke may mean that the partner of the stroke survivor has lost the love of his or her life. The disability may mean that a couple who has led an active recreational and social life will be unable to do many of the things they did together to keep their relationship vibrant and alive. Loss of memory may mean the couple has lost their ability to recall the events that brought them together and keep them together. Because of these losses and changes, a partner may feel that he or she has lost his or her lover. It is helpful to assure the partner that this is a common concern and that the partner is not a “bad person” for having these thoughts. All rehabilitation facilities need support groups or group therapy sessions run by trained counselors for partners to verbalize these concerns.
Partners of stroke survivors should separate in their minds the difference between caring for and caring about. This separation may help the partner maintain romantic feelings despite personal caregiving responsibilities.
An issue rarely addressed in the literature but supported by anecdotal reports is that spouses of stroke survivors and those with dementia may continue to care for their spouse at home but form an intimate relationship with another partner to meet their needs for intimacy and sex. These spouses report that although they will continue to care for their spouse until death, the spouse is not the same person they were in love with. That person is gone forever. Although these actions may be against a nurse’s personal beliefs, any nurse can listen with a nonjudgmental attitude, which will help to relieve stress and support the grieving process.
A stroke may lead to problems in coping for both the stroke survivor and partner, intensifying conflict in the relationship. The unspoken assumption in most rehabilitation facilities is that patients and their partners will be able to cope, and counseling services often are not a routine part of rehabilitation. Nurses can help couples by letting them know that relationship problems may arise and by recommending a few counseling sessions. Many stroke survivors need either antianxiety or antidepressant medications. Alcohol and drug treatment for patients and family members also may need to be a routine part of rehabilitation.
Some units in rehabilitation facilities offer group socialization programs one or two evenings a week. Examples include “Hair Fairs,” “Dances,” and “Pizza Nights,” when patients and their families are encouraged to participate in normal socialization events as a part of their rehabilitation programs (Blackerby, 1988).
Concerns About Masturbation
Kautz (2001, 2006) is one of the few authors who has addressed concerns about masturbation in the hospital, in the rehabilitation facility, or at home. However, studies of human sexuality have determined that masturbation is normal and common for both males and females throughout the lifespan. It is self-limiting and has no adverse mental or physical effects. Self-stimulation is possible even in the presence of severe physical and mental impairment because little hand or cognitive function is needed. Masturbation does not cause pregnancy or transmit communicable diseases. In addition, masturbation will not lead to another stroke. A patient who masturbates after a stroke may be showing a sign of recovery because it is unlikely a critically ill patient will be motivated to masturbate. Yet masturbation is still considered socially unacceptable and a taboo topic. If a patient in a hospital or rehabilitation facility is “caught” masturbating, staff may report the behavior to the rehab team as a problem behavior. The only time masturbation should be addressed by the rehab team is when it occurs in a public place.
All members of the team should insist on and ensure privacy for the patients. If a patient wants to view sexually explicit materials, either in print, video, or a computer format, limit use to the patient’s private room. Blackerby (1988), who worked extensively with those who are cognitively impaired, recommended obtaining an inflatable sex doll for a patient whose needs cannot be met any other way.
The final four topics discussed here are changes in intimacy and sex caused by problems with speech, incontinence, memory loss, and difficulty expressing emotions. The best resource for all of these problems is “Hope: The Stroke Recovery Guide” from the National Stroke Association (available at http://www.stroke.org). This is an excellent teaching guide about all aspects of stroke and is regularly updated. All nurses who care for stroke survivors should have a copy available for reference and use it as a guide for teaching patients and families.
Most research on stroke and sex has not included aphasic stroke survivors because of the difficulty in interviewing them. Yet one third of all stroke survivors are aphasic. Lemieux, Cohen-Schneider, and Holzapfel (2001) found that all the couples in their sample of stroke survivors had experienced reduced frequency of intercourse and reported that emotional lability interfered with sex. The role of caregiver also interfered with sexual expression. Nevertheless, genital touching, caressing, hugging, and kissing all increased. The nurse can encourage the stroke survivor and partner to increase all four of these activities in order to maintain intimacy.
Practical advice for either receptive or expressive aphasia includes recommending that couples establish a method of saying “I love you.” When one woman came to see her aphasic husband on the rehabilitation unit, he pointed to her with his left hand, and then clasped his hand in a fist and held it to his chest. The wife said, “It is his way of saying, ‘You are in my heart.’” This simple yet powerful gesture reaffirmed a lifetime of love. The nurse can encourage couples to spend quiet time together. Patience facilitates love, and love facilitates patience. A strategy that can be used to refocus the energy needed to overcome speech or other motor impairments is to dedicate that energy to love. Before engaging in a potentially frustrating activity, the survivor might simply say, “I dedicate the energy that I am about to spend (relearning to speak, or relearning to move, or washing dishes, or doing the laundry) to love with ________.” This simple technique may not only reduce frustration but also provide meaning to menial tasks, irksome responsibilities, and frustrating rehabilitation efforts.
Another way to meet the need for intimacy and meaningful touch for those with speech problems is through pets. Petting an animal provides warmth and intimacy unconditionally. Many successful rehabilitation programs and residential care centers have incorporated the use of pets to provide stimulation to those with severe cognitive and physical impairments.
New computer technology allows those with speech and cognitive impairments to express themselves electronically. These devices actually speak the words the aphasic person chooses, using an illustrated board. The judicious use of preset proclamations of love will promote intimacy and reduce the frustration of trying to communicate basic needs and desires, which can strain any relationship. The Aphasia Institute (http://www.aphasia.ca) has developed a set of diagrams to assist in communicating with lovers and to communicate sexual problems to healthcare providers when seeking treatment. One of the eight diagrams is included as Figure 1.
A stroke may lead to problems of dribbling caused by incomplete emptying of the bladder (overflow incontinence) or bladder accidents (functional incontinence). These problems may not surface until the stroke survivor returns home; therefore, home health and clinic nurses have a key role in identifying incontinence and referring patients for treatment. Anticholinergics may be prescribed to stop bladder spasms. Even with treatment, however, a stroke survivor may need to use incontinence pads or briefs. A couple can include a shower or bathing before sex and make the bathing part of their fun together.
A few stroke survivors may go home with an indwelling catheter for a short period of time. “Hope: The Stroke Recovery Guide” recommends that couples be reassured that having sex with the catheter in, as long as guidelines are followed, will not lead to a bladder infection or discomfort for either partner. If a man has a catheter, the catheter can be folded back over his erect penis and then covered with a lubricated condom before intercourse. A woman can tape the catheter to her thigh or belly. Some women cover the catheter with crotchless panties when having sex.
Cognitive impairment after stroke may lead to difficulty in remembering the last time intercourse occurred and may even cause a lover to forget what he or she is doing while engaging in intercourse. One man told his doctor that his cognitively impaired wife had on several occasions approached him, unzipped his pants, and spontaneously started performing oral sex. This was a new behavior for her. But often in the middle of pleasuring her husband, she apparently forgot what she was doing and walked off. Although completely forgetting that one is engaging in sex is uncommon in those who are cognitively intact, all lovers have the potential to lose focus and let their minds drift during lovemaking. Gentle vocal and nonvocal expressions of love enhance intimacy by keeping both partners focused on the intimacy of the moment. Rogers et al. (2000) also recommended reducing external distractions during sexual play and suggested that the partner guide the stroke survivor in imagery or fantasy during sexual activities.
Some stroke survivors may perseverate about sexual activity and constantly request or pressure the partner for sex. The survivor may forget having engaged in sexual activity minutes before. Keeping a log of sexual activity may assist in decreasing these requests (Rogers et al., 2000).
Difficulty Expressing Emotions
A stroke may impair the ability to correctly interpret others’ emotions, to express the emotions of love and joy, and to notice, interpret, and express the subtle emotional cues essential to romance and sex. Stroke survivors and their partners have reported to the author that the only emotions the survivor is able to express are anger and frustration, which may interfere with intimacy and romance. Left-sided neglect and emotional lability also interfere with interpreting and expressing emotions. Because of concrete thinking after a stroke, a survivor may not be able to interpret jokes, so humor, which may have been a key piece of a couple’s intimate relationship, is lost.
Developing routines for expressing emotions is useful. Couples can develop routine expressions of affection that they share regularly. After a stroke, developing routines will ensure that what is being expressed is clearly received. Couples can be encouraged to enjoy humorous events and jokes but to be sure that the meaning is clear. Some couples share daily reminders of things that they both have found funny to help lighten the day.
The husband of a woman who had been unable to cry after her head injury told her that he would be her emotional therapist. They decided to sit on the couch together and watch the film Terms of Endearment to help her experience feelings that she had not been able to experience since her head injury. During a particularly sad part of the movie she told him, “I just don’t have any tears.” He told her, “Let me share one of mine,” and with one finger removed a tear from his own cheek and placed it on hers. She told him that the flood of emotions she felt with the tear on her face brought back memories and feelings she had not experienced for years and greatly increased her ability to both interpret and express her feelings of love.
The physical and cognitive deficits following a stroke can be overwhelming, and each of these deficits can have profound effects on intimacy and sexuality. This article provides practical advice that nurses can give to their stroke patients and family members to help them overcome these problems. Many resource materials are available to staff who are willing to help their patients learn to love again. I cannot think of a higher rehabilitation goal than helping our patients to love.
The physical and cognitive changes following a stroke can be overwhelming for both the stroke survivor and his or her partner. These changes, combined with the physical and cognitive changes that result from aging and other chronic illnesses, often mean the end to intimacy and sex. However, just as nurses help patients cope with or overcome hemiparesis, aphasia, incontinence, and memory problems in order to live independently in the community, nurses can ensure that these problems do not mean the end of intimacy and sex. Rehabilitation nurses are in a prime position to make a difference by teaching patients and their partners about sexual changes they experience and offering advice to overcome or cope with these changes. This article provides practical advice for dealing with the common sexual problems of stroke survivors and their partners. Rehabilitation nurses can take the lead in determining what information couples find most useful, when to present this information, and which methods of presenting the information are most effective. We need to ensure that our interventions are developmentally and culturally relevant for all those we serve and that the interventions are both evidenced-based and practical for rehabilitation nurses in all settings. Identifying “interventions to promote management of sexuality based on the individual’s values, beliefs, and developmental stage” is one of the 2005 priorities of the Rehabilitation Nursing Research Agenda of the Rehabilitation Nursing Foundation. Rehabilitation nurses have the opportunity to take the lead in generating the evidence for these interventions. Finally, by affirming our patients’ and their partners’ desire for intimacy and sex and providing the resources for keeping their love alive, we are in essence providing hope for love.
The author wishes to acknowledge Ms. Elizabeth Tornquist for her encouragement and assistance in reviewing and editing earlier versions of this manuscript.
About the Author
Donald D. Kautz, RN PhD CNRN CRRN-A, is an assistant professor of nursing at the University of North Carolina at Greensboro School of Nursing, Adult Health Department. Address correspondence to him at 308 Moore Building, PO Box 26170, Greensboro, NC 27402-6170 or firstname.lastname@example.org.
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