Have you ever heard older adults jokingly use the phrase “I’m not dead yet…” in reference to still enjoying sex and sexually related activities?

Through my experience as a therapist and gerontologist, I have heard and laughed at this, but never failed to take an opportunity to address the seriousness embedded in the comment. The seriousness comes from the space that older adults and chronically and terminally ill patients are not dead yet, and should not be regarded as so in terms of sex and intimacy.

This is a very sensitive topic, mostly because illness, death and sex can be very awkward to discuss and even more so when they are combined. As an intimacy specialist with a strong focus on Intimacy Post Injury & Intimacy at End of Life, I take on training medical providers to address the intimate needs of their patients and work with chronic/terminally ill patients on how to have and or improve intimacy despite their medical condition.

While there is no way to cover the specifics and trajectories of every chronic and/or terminal illness, the scope of this entry is to draw your attention to respecting the need for intimacy at every phase of life.

Working in "Heaven's waiting room"

I have some memorable moments early in my career that have framed the importance of intimacy in healthcare. One was having massage therapists come to a long-term care facility and provide neck, shoulder and hand massages to the residents.

The unit I worked on, 2B was often referred to as “heaven’s waiting room”; as there was no expectation that the residents on this unit would ever be discharged home. They were either frail and elderly with no support to live out the rest of their lives in the community, or terminally ill and receiving hospice care.

I had to advocate for the therapist to be escorted to 2B to provide their touch skills to the patients. Yes, the patients were dying; “but they were not dead yet”. I knew the benefits of intentional and relaxing touch was going to be of high value to my patients because with an exception of an ordered medical procedure and or standard bath—many did not receive any intimate touch.

When and if they had visitors, they would stand over the bed and occasionally reach down to help wipe up food or adjust a wire, but rarely ever provided the often craved human touch.

I continued to advocate for this group on 2B, and similar units since that time, to be included in activities that promote the release of endorphins, decrease blood pressure, and alleviate tension. To me, this is exactly what I want as I face the fate of a terminal illness. Intimacy is closeness, marked by familiarity or friendship and shared experiences. We find ways to infuse intimacy in our daily lives to meet very fundamental human needs—so why stop when one is facing death?

Intimacy is important

Certainly, some medical conditions can make intimacy a challenge; patients can be experiencing pain and or decreased energy to participate. However, many are stabilized and without pain due to comfort measures provided by services such as Hospice. In those instances, I have always felt very strongly that medical providers should encourage patients and their loved ones to engage in intimate activities to promote the benefits described above, human dignity and opportunities to remain close despite death’s imminence.

A large part of our work is to help providers understand the importance of their role at end of life in regards to intimacy. Many feel that this is such a private matter that they should not interfere; actually, it being such a private matter is that much more important for medical and mental health providers to initiate these discussions. It is common for people to feel like they will hurt their loved one or that at some point in the dying process they no longer desire a certain type of closeness.

Oftentimes, we learn that certain medications can be manipulated by physicians to help increase energy – giving the patient enough alertness to engage in a special activity or shared moment. I have challenged myself as a clinician to ask, “Do you have any questions about being intimate during this time?”; “Is there anything we can do to help you feel closer to your loved ones at this time?” I received an array of questions and request that validated the need for all clinicians to include this as part of their assessment when working with terminally ill patients.

Those two questions have produced responses such as, “I’d really like to be intimate with my husband but I am scared that it may cause his heart some problems or it may hurt to move in that way; I just don’t know and I am embarrassed to ask his doctor.” By initiating this conversation we were able to identify a fear, an opportunity of education and provide a positive experience in a very dismal situation. Within moments of that conversation, the team physician confirmed that it is perfectly safe for the couple to engage in any act of intimacy and the patient should just direct the level of activity based on how he was feeling.

The relief that panned over the wife’s face was palpable.

Trying a different approach

In other cases, where death was more imminent, I had the honor of assisting a young couple with transferring to a larger hospital bed so a husband could lay with his wife as she lived out her last few days. The two were given permission to close the nursing room door when they needed privacy and use the nurse call bell as needed. It was not a significant change in healthcare policy to ask a question and meet their wishes. The couple spent their last few days as a physical unit spooning in bed, watching television, and reminiscing on their memories. As a clinician, had I not asked those simple questions their last few days would have been spent in a hospital chair with a bed rail between them.

Addressing intimacy at end of life can offer patients and their loved ones an opportunity to enjoy one another in a very meaningful way, giving another chance for memories that will outshine the daunting ones of the dying process. Existing literature supports that intimacy reduces stress, decreases blood pressure, lowers cholesterol, increases endorphins, increases testosterone and estrogen, and can provide relief of pain. Knowing the benefits of promoting intimacy at end of life are just some of the reasons that providers, professional caregivers, and sex therapist/professionals should incorporate this into their toolbox to help their client’s live and die with dignity.

Additionally, by talking about this topic when people are still healthy—it affords us all an opportunity to think and share what our preferences will be if we are fortunate enough to be able to see our last days with a loved one at our side. For me, I’ve started making a list to share with my loved ones on what type of intimacy I desire at my end of life:

• I want more candlelight nights than bright hospital lights whenever possible.
• Rub my back or pay for a masseuse to come twice a week to give me a massage wherever my body can tolerate.
• Read stories to me, it calms me down and puts me to sleep –erotic ones too.
• If I can no longer have sex, trace my palms so I can remember the swirl of our hips and tongue.
• Bring our laptop with our favorite XXX scenes and let’s watch it instead of the boring hospital channels.
• Keep my mouth clean and presentable so I can kiss the cheeks of my visitors hello and goodbye
• Hold my hand as much as possible and encourage my visitors to do the same, if I cannot talk I hope I can still feel.

While you are able to make decisions for yourself, make them known. Healthcare providers, much like the general public, continue to have challenges initiating and appreciating the conversation around Intimacy and Illness/Injury. Our work will continue to push the importance of these sensitive conversations. We will also continue to empower the public to raise their questions and concerns on introducing and or improving intimacy, even at the end of life.

[sc name=”Author_JetsettingJasmine”]