Sexuality and Illness – Breaking the Silence

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!

‘End of Life Option Act’ Offers Death with Dignity for Trans Man

California legislators and the Compassion and Choices coalition are pushing for a bill allowing terminally ill patients to shorten the inevitable dying process

BY

Michael Saum

In 1996, on the cusp of the lifesaving three-drug HIV cocktail, Eric Roberts starred inIt’s My Party by director Randal Kleiser, one of the first films to feature a gay man who not only insists on dying with dignity but doing so with a festive, emotional flare.

Roberts’ character had been diagnosed with an aggressive disease that would rob him of his mental acuity months before he would actually die, so he wants a goodbye party while he can still recognize the ones he loves. The film was Kleiser’s tribute to his own ex-lover, who died of AIDS in 1992.

In the film Roberts had a brain disease, so he still looked young, fit and beautiful. Most gays with AIDS surrendered vanity early on as their once-worshipped bodies were ravaged by the wasting syndrome or the purple lesions of Kaposi’s Sarcoma. They were rendered helpless and unrecognizable to themselves, an agony sometimes worse than the unrelenting physical pain. Death was a welcome blessing, and many were quietly helped to that end by bereft loving friends, lovers and family, despite the pall of illegality.

It was in this context that efforts to legalize physician-assisted suicide in California were launched in 1992, 1995 and 1999. But the prospect of a dying person choosing a good death became highly politicized by the religious right with the Florida case of Terri Schiavo, where Gov. Jeb Bush sided with the family and ordered her life prolonged, despite the wishes of her husband who said his wife expressly said she wouldn’t want to be kept alive in a vegetative state.

Today there is another effort underway in the California Legislature to pass a well-crafted bill—modeled on the successful death-with-dignity bill in Oregon—that even won the support of conservative Democrat U.S. Sen. Dianne Feinstein and the California Medical Association, which ended its opposition after 28 years.  On June 4, the State Senate passed the End of Life Option Act, SB 128, by 23 to 14, buoyed by a poll last year showing that nearly two-thirds of Californians favor giving a terminally ill patient the option to die peacefully. Currently Washington, Montana, Vermont and New Mexico also have medical-aid-in-dying laws.

Wolk-press-conference-2015

Co-authors Senate Majority Leader Bill Monning and Senate Majority Whip Lois Wolk, with support from the Compassion & Choices Coalitionintroduced SB 128 last January.  The bill has a “checklist” of safeguards to prohibit the possibility of abuse. Essentially the bill would allow a mentally competent, terminally ill adult (18 or over) the option of requesting (both orally and in writing) a doctor’s prescription for medication to shorten the inevitable dying process so they might die peacefully, without pain.

“I’m doing everything I can to extend my life. No one should have the right to extend my death,” out State Sen. Mark Leno  recalls one woman dying of lung cancer saying during a Senate hearing on the bill. Leno is a principal co-author of SB 128.

“I happen to be of the philosophical belief that government should not come between an individual and a decision he or she may make with a physician,” Leno says during a phone interview with Frontiers. “There is nothing more personal and of greater importance than our end-of-life choices. I don’t think government should be in the way. That’s what this bill does. It provides a choice for someone in a very specific situation.”

Leno knows something about this. He lost his partner Doug in 1990 and Doug’s younger brother in 1986. “Those of us of a certain age,” Leno says, “saw the tortured deaths of hundreds of friends” at a time when there was no hope of surviving. “So I’ve seen firsthand how cruel that can be.” And with aging parents and siblings approaching their last years, “it becomes a very real issue all over again.”

Leno says he found it “astounding” that a Republican colleague described his opposition to the bill by suggesting a terminally ill patient could drive over a cliff or shoot themselves in the temple instead. “The level of insensitivity is so extreme,” he says.

Michael Saum and Julia

Michael Saum, a 35-year-old transgender man who is dying from brain cancer (pictured in photo above with best friend Julia), wishes he had that option. Saum’s doctors think he will die in the next few months, before the bill reaches Gov. Jerry Brown’s desk.

“It’s not that I want to die; I don’t want to die,” Michael tells Frontiers. “I love life, but I don’t want to live like this.”

Saum was battling cancer for 14 years before going into remission—an 18-month respite during which he took the opportunity to become the man he always felt himself to be. His mother, who had been fine when then-Heidi came out as a lesbian, could not handle his transition. When he was diagnosed with Stage IV brain cancer that had spread throughout his body, he turned to his lesbian friends, most importantly his best friend Julia, whom he had once dated, to provide him refuge in her El Monte home and to take care of him. “It’s the kind of love I can’t even describe. She’s selfless,” he says.

Saum is currently at the strongest dose of painkiller allowed, but it’s not working. He has severe headaches, nausea, unregulated body temperature, short-term memory loss, unfiltered speech—“so many things go wrong” having big tumors in both the left and right frontal lobes.

“I’m in terrible pain every day, to the point that I’m crying nearly every day,” he says. “I’ve been told by my doctor that there is no chance for change, no miracle; no treatment is going to heal me.

“I think I’m going to pass before this bill is enacted,” Saum says, “but if it’s not there for me, I’m grateful I’m able to help others in my situation.”

Assemblymember Susan Eggman

Out Assemblymember Susan Eggman, Chair of the LGBT Legislative Caucus, is the lead principal co-author in the Assembly. A former hospice social worker who also lost friends in the ‘80s and ‘90s and cared for family members as they lay dying, she is uniquely positioned to understand the significance of SB 128.

“I come at this from a lot of different perspectives,” Eggman tells Frontiers. I believe—and I think polling shows—that Californians are ready for this.” Additionally, 17 years of research out of Oregon show that there is virtually no coercion or abuse.

“We know that oftentimes people don’t even go through with it. They just know that they have that option,” Eggman says. The bill is not for people who are depressed or seniors or disabled. “This is for somebody with a terminal illness, for which no cure is expected, and their end-of-life trajectory is within six months to a year.”

And, she notes, the End of Life Option Act is “for those who have had a certain degree of control in their life—this is something that is important to them.”

Perhaps more people than the dying and their loves ones are beginning to grasp the moral and ethical urgency of this bill. In a sharp contrast to the political and religious-based Schiavo controversy, a bipartisan poll conducted June 16-21 shows that nearly seven out of 10 Californians (69%) support SB 128, and that includes Catholics (60%), non-evangelical Protestants (65%) and evangelical Christians (57%).

Eggman is holding a hearing on the bill on July 7. The deadline to pass SB 128 in the Assembly is September 11.
Complete Article HERE!

Word For My Loss

The US Supreme Court ruled in favor of same sex marriage nationwide on what would have been my 28th anniversary with my late partner. Though we were never able to marry, I still consider myself a widower.

top-flamini 1

“I am a widower.”

Those are four words I never imagined myself saying at my age. Maybe at 70 or 80. Mid-60s, if something terrible, like a plane crash or a terrorist attack, took one of us. Or never, if I was the first to go.

None of those scenarios took place.

I lost my partner, Gary Lussier, to liver disease two years ago. He was a wonderful man — a former dancer, handsome with a wicked sense of humor and a way of embracing the world that would shame most people. He didn’t get to embrace the world for long enough, though. He was 52 and I was 53 on the day I walked out of NY Presbyterian Hospital/Cornell Medical Center, dazed, confused and alone.

He died less than 24 hours before he might have had a successful liver transplant, slightly more than three days after I rushed him to the hospital, over a year since his illness began to manifest itself and about a quarter-century since we had joined our lives. Even though I was well past 50, I found myself in the “he’s too young for this to happen” category.

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Michael and Gary

And, of course, there was another complication: I was not married to Gary, even though we had been together 24.5 years. Though we had no legal document, ours was as true a union as any other. Emotionally supported by our two good families and a phalanx of friends, having the benefit of treatment in New York City’s best hospital and embraced by the staff of my company, St. Martin’s Press, I had the rare luxury of being able to consider my place in the world free from legal battles and financial concerns that can be real, threatening and, occasionally, life-shattering for the one left behind.

In the days after his death I began to ask myself, “What am I now?” I was no longer “partner.” I searched and searched for a word that defined me. Finally, I settled on the most obvious and yet, for me, most problematic word: widower. In choosing it I set myself the task of understanding its meaning.

I was also trying to find the courage to say it out loud.

Of course, “widower” implies “marriage,” “husband,” “deceased wife” and — in our world — “heterosexual.” We weren’t married. We referred to each other as “partners.” I am gay. The first time I said it out loud — “I am a widower” — I was alone in my apartment. The silence was so loud it threatened to crush me.

When that sentence broke the isolation I’d been living in. I knew I had found a word that would take me forward, but one that would provoke surprise in others. “Did he say ‘widower’?” I imagined people thinking to themselves at cocktail parties. “I didn’t know they were married…” they might say, in private, when they took off their pearls or undid their ties. Worse might come from hate mongers I didn’t even know. The question obsessed me: How could I call myself “Gary’s widower” and be true about it?

For me, the ability to say “widower” came down to the question of what the word “marriage” means. We’ve all been taught “marriage” refers to the moment when two people profess vows of love before a governmental or religious authority, rings are exchanged, documents are signed and the couple runs off to Happily Ever After. They are “married.”

There is, though, a deeper meaning, I think, of the verb “to marry,” a more private one concerning itself less with ceremony and legality than with the intimacy and commitment between two people: “to take as an intimate life partner by a formal exchange of promises in the manner of a traditional marriage ceremony.” Had Gary and I done that over the years? Did we have some formal exchange of promises?

Stephen Sondheim has a song about marriage describing it as “…the little things you do together…” We certainly had our fill of them throughout the years: Not just Thanksgivings and Christmases and Easters or trips abroad or weeks on the Ogunquit beach. No, we had more than that. We had almost a quarter century of eating pizza while watching television, having dinners with friends, arguing about how best to do the laundry, having a bang-up row in public, commiserating over each other’s daily work woes and celebrating each other’s triumphs. So, in that way, we did indeed have a marriage. Through millions of small acts, private and public, we were intimate life partners.

But, did we have a “formal exchange of promises” I wondered? Over the years, every night, we said “I love you” to each other before falling asleep. Were those not exchanges of a mutual promise renewed each day? I think they were. But, were they enough to pronounce us “married”? Did we have some deeper and more formal promise? In looking back, we did, though no clergy or justice of the peace was present.

We met when a legal marriage between two men was unthinkable. We also heard the revolutionary roar of “We’ll live together unmarried!” from both straight and gay couples. Now that marriage was actually possible, I had begun to think about how wonderful it would be to have a “husband,” someone to call my own, someone defined by a word that could not be mistaken for a business associate: “husband,” not “partner.” Just thinking of those words made me feel different: stronger, safer and — in a corny way — a man-in-love.

When the New York State gay marriage law was finally passed in 2011, we were at our house in Massachusetts where gay marriage was already legal. It was a beautiful day and we were in the garden, weeding. Gary seemed to be on the mend after his initial diagnosis and treatment. I had felt a strong “are we going to get married?” vibe from him since we heard the news. There in the garden, down on one knee as I was weeding around the boxwoods, I said, “Gary, will you marry me?” He was shocked. So was I. He said, in a typically Gary way, “Well, I don’t see a ring…” And, then, to my surprise, he said “No … not until you get me a ring …” as much with shock that I had asked as he was by the need to answer. I was crushed. I had never asked anyone to marry me before, but there it was. “No.”

Not long after that day, Gary began to spiral downward again and the incident was pushed aside by multiple hospital stays, the imperfect weekly calculation of his place on the liver transplant list, the day-to-day monitoring of weight, at-home visits from medical workers, frantic expeditions to specialty pharmacies and, most wrenchingly, the ups-and-downs of watching the person you love most in the world become increasingly and dangerously ill.

My marriage proposal remained buried in our garden until about an hour before Gary began to die. He was in the ICU, his liver failing (unbeknownst to me). He was drifting in and out of consciousness. During one lucid moment, he grabbed my hand, pulled me to him, eyes wide-open staring straight into mine, and said, “I do!” with such vehemence that it startled me.

I was speechless; but, since I was his chief cheerleader on the road to transplant, I said “Oh, no you don’t… we’ll do this right once you get your liver …” He laughed a little. If God or The Idea of God has to do with love, I like to think that He or She was present when that vow was made because, if true love has ever made itself manifest, it was in that moment. We finally had our formal ceremony and I clasped his hands tightly. An hour later, the massive hemorrhage that ended his life began and he lost all consciousness. Months later, I told a friend that I wished I’d said “I do, too!” and he said, “You did, on that day in your garden.”

I now understand that we were, indeed, married in so many ways that I have come to say, “I am a widower” with confidence, if with little joy. It’s not a nice thing to have to say. It puts people off, or — even worse — makes them want to take care of you when you least need it. That statement’s message is “I lost my spouse, but I am still alive. I’m standing on my own two feet and intend to go on living for as long as I can.” It means you freely have given a significant part of your life to someone who is now gone and that you are alone. It means, “I remain while he has moved on.” It also now, thankfully, has less relationship to gender preference. As Wendy Wasserstein wrote: “Love is love. Gender is just spare parts.”

How, then, do you say, “I am a widower”? It has nothing to do with age. Young or old, you say it plainly, like saying “armor,” knowing that nothing else can ever hurt you as much as your spouse’s death. You say it in the full knowledge that the union you had with your deceased spouse was as deep and as rich and as true as any other. You say it with remembrance and, most of all, you say it with love and pride for the spouse who has passed on — that singular, unforgettable human being who taught you, truly, how to love and to be loved.

“I am a widower.”

Complete Article HERE!

Snyder opposes recognizing terminally ill gay man’s marriage

by Chris Johnson

Rick Snyder, Michigan, gay news, Washington Blade
Michigan Gov. Rick Snyder opposes the recognition of a terminally ill gay man’s marriage.

 

Michigan Gov. Rick Snyder announced in a legal brief filed late last week he opposes state recognition of the marriage of gay man in the Wolverine State who’s terminally ill.

In a five-page brief dated April 16 and submitted to the U.S. District Court of the Western District of Michigan, Snyder argues Michigan shouldn’t be required to recognize the marriage of Bruce Morgan, an East Grand Rapids, Mich., resident who’s suffering from brain cancer and married his partner, Brian Merucci in New York in 2013.

A federal court had struck down Michigan’s ban on same-sex marriage in March 2014, but the U.S. Sixth Circuit Court of Appeals reversed the decision, upholding the state’s prohibition on gay nuptials. That case is now pending before the U.S. Supreme Court.

Snyder had acceded to another court ruling requiring Michigan to recognize the marriages of around 300 same-sex couples who wed during a “window” period after the initial court ruling, but before the Sixth Circuit placed a stay on the weddings. But the governor says the decision in that lawsuit, Caspar v. Snyder, isn’t enough for the court to grant state recognition of Morgan’s marriage.

“The only circumstance cited by Plaintiffs not previously considered by this Court is the decision in Caspar,” Snyder said. “But Caspar is non-precedential and factually distinguishable. Consequently, the legal and factual landscapes relevant to staying this case remain the same as they did when this Court issued the stay, and Plaintiffs’ motion should be denied.”

The lawsuit, Morgan v. Snyder, was filed private attorneys on behalf in June 2014, but the case was stayed in August as marriage litigation was pending before the Sixth Circuit. Earlier this month, the plaintiff couple sought a relief from the stay in the aftermath of the decision in the Caspar case.
Complete Article HERE!

Alzheimer’s trial in Iowa stirs talk of senior sexuality

Experts from the Widener University-based Sexuality and Aging Consortium say a groundbreaking Iowa court case illustrates why consumers and long-term care facilities should do more thinking about sex — before they get into trouble.

 

by Stacy Burling

Whether their parents still want sex probably isn’t at the top of the minds of most people choosing a nursing home for their loved ones.Elder-sex

But experts from the Widener University-based Sexuality and Aging Consortium say a groundbreaking Iowa court case illustrates why consumers and long-term-care facilities should do more thinking about sex — before they get into trouble.

In the Iowa case, Henry Rayhons, 78, a former member of the Iowa House of Representatives, is charged with sexual abuse for having sex with his wife of seven years in her nursing home. She had been diagnosed with Alzheimer’s disease. A doctor at the Garner, Iowa, facility where Donna Rayhons lived, and her two daughters from a previous marriage, concluded she was too impaired to consent to sex.

sexinoldageThe case raises complex questions about what constitutes consent for a person with dementia and how nursing homes should prepare for the inevitable: People of all ages want and need sexual contact.

“Our need for touch is universal, from birth to death,” said Robin Goldberg-Glen, a social-work professor at Widener who is co-president of the consortium.

The group, which includes about 40 experts on sexuality and aging from around the country, educates professionals and students in an attempt to reduce discrimination and advocate “for the rights of people in long-term care to have their sexuality respected and their choices respected,” said co-president Melanie Davis, a sexuality educator in Somerville, N.J.

The consortium is not taking a position on the Rayhons case. It and the family dynamic behind it are complicated. Witnesses say Rayhons was told his wife was not capable of consenting to sex. It’s unclear what kind of contact occurred between them while a curtain was pulled between her side of the room and her roommate’s last May. Semen that matched his genetic profile was found on her quilt and sheet. The roommate complained about noises but did not describe sounds of a struggle.seniors_men

Henry Rayhons testified Friday that he and his wife held hands, prayed and kissed at her nursing home the day in question, but that they had no sexual contact.

He said any sounds his wife’s roommate heard were him situating his wife in her bed. His wife died in August.

“She was my queen,” he testified. “I miss her every day. I will never take her ring off.”

Rayhons is charged with third-degree sexual abuse, and if convicted could face up to 10 years in prison.

The crux of the case is the question of Donna Rayhons’ ability to consent. Iowa law defines an act as sexual abuse in the third degree if the two parties are not living together as husband and wife, and if one person “is suffering from a mental defect or incapacity, which precludes giving consent.”

Dr. Robert Bender, a geriatrician with Broadlawns Medical Center in Des Moines, testified for the defense Friday, saying a cognitive test in which patients are asked basic questions doesn’t measure parts of the brain that enable people to feel sexual desire. Bender never treated Donna Rayhons, but said he has treated several other Alzheimer’s patients.

Donna Rayhons’ doctors previously testified that her score of zero on that test indicated severe impairment.

Prosecutors played a recorded interview with an investigator that showed Rayhons initially said he and his wife never had sex at the nursing home but later said they had a few times, and possibly briefly on the day in question.

elderly-health_2064340bRayhons, who served nine terms in the Iowa House, testified that he didn’t have sex with his wife that day, adding: “She was not in any mood to have anything at all.”

The defense rested its case Friday. Closing arguments are scheduled for Monday

Davis and Goldberg-Glen think a clear policy and better communication might have headed off the legal confrontation. “There are much more humane ways and caring ways to deal with a case rather than taking legal action,” Goldberg-Glen said.

Figuring out what consent means for someone with dementia is tricky. Responding positively to touch is different from deciding whether you want to buy a new car or would rather have chicken than fish for lunch.

Gayle Doll, director of Kansas State University’s Center on Aging and an adviser to the consortium, said nursing-home leaders often try to guess what residents would have wanted before getting sick.

The current thinking, she said, is that “we become new persons” when we get dementia, and decisions should be based on how we are now. She advocates for assigning the same staff members consistently to residents so that the staff understands unspoken cues.

“People with dementia, we make every decision for them,” she said. “We’ve got to start hearing their voices.”
Complete Article HERE!