Dementia Poses Unique Intimacy Challenges for Caregiver Spouses

There's nothing easy about taking care of a partner or spouse with dementia.

  But one of the most often overlooked challenges facing caregivers who have romantic relationships with an elder suffering from Alzheimer's or another form of dementia, is how to deal with a forever altered intimate life.   "For couples dealing with dementia, there are so many losses," says Ruth Drew, Director of Family and Information Services for the Alzheimer's Association. "There's the loss of the life they had,  the loss of the life they expected to have and the loss of partnership with a husband or wife."Memory-robbing illnesses are riddled with these and other losses, but one aspect that remains intact, despite a person's flagging cognitive abilities, is the need for intimacy, both physical and emotional. According to Robin Dessel, Director of Memory and Vision Care and sexual rights educator for Hebrew Home at Riverdale, the older a person gets, the more they need human affection. "There's no less want or need for camaraderie, intimacy and touch as we age," she says, adding that, "loneliness is one of the foremost reasons of depression in the elderly."  The end result is that both caregivers and their loved ones are left trying to figure out how to balance their respective desires for connection and affection with a relationship that is constantly being altered by a progressive disease.

 How memory loss affects sexual behavior

Dementia can have a wide-ranging impact on a person's views, reactions and behavior when it comes to sex and intimacy.   An individual's inhibitions may become lowered, causing them to say or do things that are uncharacteristically crude and vulgar. This can be very startling and off-putting for friends and family who are used to interacting with people who adhere to society's unspoken sexual mores.  Memory loss may also cause a person to become stuck in another time period. With Alzheimer's in particular, short-term memories are one of the first things to go. This means that a sufferer may still view themselves and their partner as being young; they won't be able to recognize their face in the mirror or the person next to them in bed. This can cause extreme anxiety and confusion, and may make intimacy nearly impossible. 

When a life partner no longer remembers a life-long relationship

A person with dementia may sometimes forget the decades-long relationship they shared with their caregiver partner.   It's not unheard of for a memory-impaired individual living in long-term care to seek solace in the arms of someone they met at their facility—even while they are technically still married or in a relationship with their life partner. It's a more common occurrence than one would like to think, according to Drew. 

But how can a caregiving spouse cope when their partner appears to turn their back on the love they shared for decades in favor of a newly-minted relationship with someone they just met?  First and foremost, Dessel urges family members to try not to view such couplings as a betrayal. A directive she freely admits is easier given than carried out. It may take months—even years—to adopt this type of pragmatic perspective. 

Perhaps the most well-known example of this selfless gesture is former Supreme Court Justice Sandra Day O'Connor who, after learning that her Alzheimer's-stricken husband had formed an intimate relationship with a woman in his long-term care facility, gave the couple her blessing."Mom was thrilled that Dad was relaxed and happy and comfortable living here," said O'Conner's son, Scott in a 2007 interview with KPNX-Channel 12, a news station in Phoenix, Arizona.  The key is to approach the issue with an open, and loving, heart and mind and a thorough understanding of how dementia can alter a person's sense of reality. 

Coping with complicated issues by living in the now 

Human beings can only live in the present moment.   For people suffering from dementia, that present moment is often altered. They may not remember the past relationship they shared with their caregiver spouse, all they know is how their new paramour makes them feel.  "It isn't an act of malice," says Dessel of cognitively impaired individuals who seek new relationships. "For the people in the relationship, it's real-time. They are being monogamous and bringing one another pleasure and comfort."  

Dementia often dumps extreme amounts of anxiety and frustration onto the heads of its victims. Pleasure and comfort are two things that people with the disease desperately need, but often lack. That's why, as challenging as it is, caregivers and other family members should view acceptance of such unconventional couplings as an act of love.  "Sometimes, loving someone else means not being selfish with your love," says Dessel. "If I had a loved one stuck in the throes of that reality, I would want to know that there was something that brought them happiness." 

Sources of support for a caregiving spouse

One of caregiving's most dangerous myths is that people taking care of elderly loved ones are alone in their struggles. This misconception adds to the pain and isolation felt by family caregivers dealing with difficult issues, such as the one surrounding dementia and sex. When caring for an ailing partner Drew points out that every situation is unique and there are no "cookie cutter answers." Nothing will make the process totally pain-free, for the caregiver, or the person suffering from dementia.  There are, however, common themes and experiences that can be shared from caregiver to caregiver.

Reading about a fellow caregiving spouse's experience may give you an idea of how to better handle your unique situation.  When grieving the disintegration of an intimate relationship with a dementia-stricken loved one, Drew says it's essential to keep in mind that your feelings are both normal and natural. The best way to get through them is to find safe havens where you can share your emotions and talk them through with other understanding individuals.

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Sex in a Time of Caregiving

According to the AgingCare.com 2015 State of Caregiving Report, an overwhelming majority of caregivers are females over the age of 50. Ninety-one percent of adult child caregivers are daughters, and wives constitute 76 percent of spousal caregivers. The typical adult child caregiver is between 50 and 70 years old, while spousal caregivers tend to be slightly older—between 60 and 80 years old. For many women, caregiving takes a toll on their romantic relationships. Priorities can quickly become overwhelming and leave a partner or spouse feeling neglected or forgotten. Physiological changes due to menopause can complicate things even further.   If a caregiver is fortunate enough to be able to have some alone time with their partner, a number of different issues can get in the way of enjoying this romantic respite. Clinical Director of the Women’s Institute for Sexual Health (WISH) in Nashville, TN, Brooke Faught, RNC, MSN, APN, shares her expertise on the various problems that women commonly experience after age 50 and how caregiving may complicate things further:


Post-Menopausal Changes

Q: What are some of the most common sexual health issues for women over 50 years of age?

A: “Probably one of the most prevalent conditions that I see in women over 50 is moderate-to-severe dyspareunia, which is painful intercourse due to vulvar and vaginal atrophy. After menopause, estrogen declines, and that leads to a physiologic change in vaginal skin cells. Women can experience this as painful intercourse and even as chronic vulvar itching, burning, stinging, tearing, bleeding—just really unpleasant symptoms.”

Q: What are some of the treatments for these issues that are so common for this age group?

A: “The wonderful thing is, in the past—specifically if we’re talking about menopausal changes leading to dyspareunia and painful intercourse—we’ve thought primarily about hormone replacement. But there’s been a big uproar about using hormones in certain women, and then some women just choose not to use hormones. Now we have non-hormonal options that are available to treat these conditions. What that means is women really need to open up and talk to their medical provider and be honest about their symptoms so that they can have a comprehensive health assessment to determine what the best treatment option is going to be for them. There are multiple different options available—oral, vaginal, et cetera.   “One thing to keep in mind is that these conditions are chronic, they are progressive, and without treatment, unfortunately, the vaginal tissue changes that lead to painful intercourse are only going to worsen over time. It’s not something that you can just put on the back burner and [say,] ‘I’ll deal with it later.’ Every day that goes by, it’s going to get worse and worse. Upwards of 25 to 50 percent of women that are post-menopausal experience these conditions, so they’re definitely not alone.


 Caregiver Stress

Family caregivers are typically under a great deal of pressure to balance their own lives and provide quality care and companionship for a loved one. Although caregiver stress is unique, women who are experiencing a great deal of anxiety or tension in their lives can experience negative sexual symptoms at any age.   Faught describes sex as “a complicated cascade of events” that include hormonal, muscular, neurological and psychological components. There are a lot of different factors that play into a rewarding sexual experience, and stress can be a serious inhibiting element on multiple levels.

Q: How does stress—especially from caregiving—play into this dysfunction. Does it make it worse, I would assume?

A: “When we’re stressed, our muscles become tense, blood vessels constrict—there’s a variety of things that happen that can negatively impact the blood flow that is so critical for feedback between the brain and the genitals. So, that can lead to pain, that can lead to decreased arousal, desire, and even lubrication. I see this, and it’s [common for] any age category, but it’s really important for women to be aware of this.   “[For] men, on the other hand, sometimes sex can be a little bit easier. When they are undergoing stress or illness, a lot of times sex is a stress reliever. But for women, sex becomes more of a chore in circumstances where they’re busy and they’re caring for other people. It’s really important for them to realize that sometimes making sex a priority is what’s necessary.”


Depression

Q: Depression of varying degrees can be pretty common among caregivers, and that can really affect sexual health. How can they treat their depression or anxiety without having a severe impact on this aspect of their lives?

A: “It’s kind of a catch-22. Depression in and of itself can lead to sexual issues, but also the medications that we use to treat it can have sexual side effects. There’s really no clear answer—it’s really an individualized approach that’s needed to help. But I strongly encourage, for a variety of reasons, to never let depression go untreated. (I hate to say untreated, because I think that people think that means with medication, but there’s a lot of ways to treat depression.)   “When women are stressed, that’s a very common experience, to feel depressed or to experience true depression, and I’ve seen that quite a bit in my office. Now, I’m not a psychiatrist or a psychologist, but you really can’t separate that out when you’re dealing with sexual matters, and I really strongly encourage women to seek care [for depression] just like they do for their physical issues.”

  Abstaining from Sexual Activity

Whether or not you have voluntarily decided to forego sexual relations, or have simply encountered a dry spell due to caregiving, divorce or other extenuating circumstances, Faught encourages women to try to keep the spark alive. Women who have given up on the thought of having intimate relations may eventually find themselves wishing to become sexually active again. They may then have difficulties that they never experienced before, which can be both embarrassing and physically painful.   “If a woman is not sexually active, that can lead to a woman not wanting to be sexually active. That can lead to decreased arousal and sensation and so forth.”   Essentially, Faught is saying is that if you don’t use it, you’re likely to lose it. According to Mayo Clinic, “Regular sexual activity, with or without a partner, can help you maintain healthy vaginal tissues.” This increases blood flow and helps these tissues retain their elasticity.


Other Options for Treatment

Q: What are some non-medical treatments for women who may be experiencing sexual issues?

A: “The way that I practice sexual medicine is holistic, which means that I treat the entire body, and that includes the mind as well. So, for my women, we really look at the entirety of the situation. Certainly we’re going to include medicinal options when appropriate. [For instance,] acknowledging if there’s relationship discord or there’s stress—maybe counseling can be beneficial. Sometimes physical therapy for the pelvic floor can be beneficial. And, a lot of times, using all of these combined as a team effort, and using some of these other treatments as an adjunct to medicinal treatment can improve the efficacy of the game plan.”   “[Another] thing to keep in mind is some people think about lubricants and moisturizers as another alternative option. That’s fantastic, and I recommend those frequently (glycerin free lubricants and coconut oil). The problem is that’s really kind of putting a band aid on the issue. If a woman just has mild symptoms, sometimes that’s all that they need to alleviate some of their discomfort and enhance sensation. But, branching into the more moderate-to-severe category, it’s probably not going to be enough, and it’s certainly not going to change the physiologic changes that have happened with menopause.”


Taking the Next Steps

Faught recommends having candid discussions with your physician in order to affectively address any iddues you may be experiencing. She also urges women to visit the International Society for the Study of Women’s Sexual Health website for more information on female sexual health issues and treatments.   “This is an International medical organization that is good for both professionals and the general public to find local resources on providers that treat sexual complaints both from a medical aspect, but also psychological, et cetera.”   Regardless of your unique situation, caregiving, stress, emotional health, and menopause can all have detrimental effects on a woman’s sexual health. Rather than making do with these factors, it is important for women to understand that they are entitled to enjoying themselves on this basic human level. A simple discussion with a physician can help women decide what approaches are the best fit for improving their sexual health.

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Memory Care Tricks from an Unlikely Literary Source

I just finished reading "And The Mountains Echoed," by Khaled Hosseini.

 

 

It is a wonderful book, a little confusing as it jumps back and forth between various eras, and has two characters with the same name. But the end of the book, and the life of the character that begins the story, tells of his drop into the foggy realm of Alzheimer's.

 

 

While his daughter is caring for him at home, she defuses his out of control rants by quickly giving him a catalog to distract him from whatever has upset him. Another trick she used was to turn the TV to the Weather Channel, boring him enough to put him asleep.

Great ideas – I hadn't thought of them.

 

When he finally ends up in a memory care facility, the author tells of them using a "fidget apron" on him. The apron has strings he can tie or twist, and buttons that he can work with, helping to relieve agitation.

 

 

Those things made me begin to wonder what other tricks memory care units use to calm and occupy patients that we caregivers could adapt for home use.

 

 

Of course, the book itself is fiction, but I am sure the ideas came from real life experiences. So I began digging for information. Thanks to the Internet, answers were just a click away:

• One suggestion was to use "tool boxes" to jog the patient's memory and even start a dialogue about their recollections using certain items such as kitchen utensils, sewing supplies, tools and cleaning implements.
• Small area maps, found in drug stores or restaurants, can be used to help patients find their place in the community.
• Reduce stress and create a calm environment by playing music the patient may recall from his or her youth or church memories. Just last week, Charlie asked me to order a set of CD's with music from the 1950's that were advertised on TV. Hearing the music began to stir memories from his past and he wanted to make them a part of his present. Also, whenever he hears music from the Viet Nam era he begins talking about his service there in the late ‘60s.
• Patients in the later stages of memory loss may find it soothing to hold a doll or stuffed animal. A stuffed dog or cat, for instance, may even become a satisfactory replacement for a pet left behind when the patient entered long-term care.

Dementia, distant memories and simple chores Charlie's daughter made him two beautiful scrapbooks: one with photos and memorabilia of family, the other, a book of his military experiences. He enjoys sitting and reminiscing about events that are triggered by the photos and news articles.   Like most patients with dementia, he has far better recall of things from the distant past than what transpired yesterday.   I had a neighbor whose claim to fame was her spotless house. This didn't change when she fell into the dementia pit.   Day after day she wandered the house cleaning the same drawer(s) that she had cleaned yesterday. At first, her husband told her to stop, reminding her that she did that yesterday. But, he finally learned that to her, she was "spring cleaning" each and every day, and was proud of the work she was doing. Giving the patient simple chores to do will give them a sense of usefulness. Just be careful not to criticize if the chore isn't done up to your high standards.   Charlie loves to feed the birds. I buy a loaf of bread each week, just so he'll have something to feed the crows. He waits by the window for them to come from the perch, high above the house, where they await his daily bounty. I'm sure they wouldn't starve without his help, but he feels like he has done something important. And he has – for himself as well as the birds.   If you are a reader, borrow the Hosseini book from the library and do something to relieve your own stress.

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