Powerful Tools for Family Caregivers

Sometimes sexual dysfunction or reduced libido is the result of general symptoms associated with the chronic disability, including fatigue, weakness, muscle tightness, muscle spasms, pain and concerns about bladder or bowel incontinence.

Fatigue and weakness can be reduced by choosing times during the day when the individual has the most energy for sexual expression. (Often energy is dependent on sleep patterns and administration of medication.) Energy conservation techniques include taking naps and using mobility aids. Although people often believe sexual encounters should be spontaneous, chronic disability may require more planning for sexual activity. Many intimate alternatives to intercourse require less exertion, such as mutual masturbation, holding, kissing, and oral and manual pleasuring.

Muscle tightness and related pain can be relieved in hot tubs, saunas, steam rooms and even tanning beds. The heat may ease stiff and sore muscles and also loosen joints. However, overheating may be a concern for individuals with MS.

Caution: Individuals with spinal cord lesions at or above T6 may experience autonomic dysreflexia - a sudden, potentially dangerous rise in blood pressure with heat.

Painful muscles or joints can be managed by scheduling sexual activities when symptoms are least problematic or by taking pain-controlling or antispasmodic medications. It may be helpful to experiment with sexual positions and activities that minimize pain or muscle spasms during intercourse. Communication with one’s sexual partner is important so that painful positions and actions can be avoided and replaced with more comfortable positions and pleasurable actions. Massage may also be beneficial.

Bowel and bladder management during sexual intimacy can be of great concern to individuals with certain chronic disabilities. All bowel and bladder routines should be completed before engaging in sexual activity. Protective sheets or towels may lessen concern about bowel or bladder release. Bladder and bowel dysfunction can sometimes be managed with the use of catheters or colostomy bags. Women with indwelling catheters can leave the catheter in place during intercourse, taping it to the lower abdomen beforehand, provided that plenty of water-based lubricant is used. Pelvic floor physiotherapy sometimes improves bladder and bowel control for women. Anticholinergic medications help manage incontinence by reducing spasms of the bladder and urethra.

Self-image and body image may be negatively affected by acquired chronic disabilities. People in a relationship may compare their current abilities or attractiveness to what it was before and worry that they are no longer desirable or able to satisfy their partner’s needs. This is a common concern for women who have had a mastectomy or individuals with a spinal cord injury.

Individuals with life-long disabilities are less likely to have these concerns than those who have developed a chronic disability later in life. Likewise, individuals in a strong committed relationship are more likely to be able to communicate about their concerns with their partner. Those not in a relationship may not feel they will be sexually attractive to others and may not pursue new relationships. Counseling may help individuals or couples deal with depression or anxiety concerning sexual desire and expression.

Caring for a spouse or life partner may require you to provide intimate care that is unrelated to sexuality. It may be mentally challenging to shift readily from changing a partner’s catheter or colostomy bag to fantasizing about him or her sexually. You - and your partner - may need some time and strategies to manage the dual roles.

In some instances, individuals with a chronic disability may experience an increase in libido or sexual interest. This may be caused, for instance, by specific brain damage (e.g., to the amygdala or thalamus) due to a tumor, stroke or brain injury. Although medication often has an inhibitory effect, some medications may have the opposite effect either intentionally (e.g., Cialis or Viagra) or as a side effect. Sexual release may be sought with one’s partner or through masturbation, or may be addressed with changes in medication.

Some individuals with cognitive impairments may lack judgement and engage in sexual behaviours in inappropriate circumstances. It is important to redirect sexual expression from public to private venues.

• Individuals with Alzheimer’s disease or other dementias may forget social rules and need gentle reminders or redirection from caregivers.
• An individual who lives alone may develop the habit of going from bedroom to bathroom in the morning or at night without putting on a robe, and then fail to alter the habit when visitors are present.

Ensure that individuals (including seniors) have privacy in which they can practise sexual expression. Knock before entering private spaces and wait to be invited in. You may find it helpful to remind your loved one of social conventions by asking, “Are you decent?”

Individuals caring for an elderly relative may wrongly assume that sexuality automatically decreases with age. Sexuality and sexual interest also do not disappear when one is widowed. Caregivers, particularly those who resemble their deceased parent, may find themselves the target of amorous advances by a parent with cognitive difficulties. Likewise, bathing and providing other intimate care to a parent may result in reflexive sexual arousal. This can be embarrassing to both you and your loved one. The appropriate response is one that protects your loved one’s dignity to the greatest degree possible.