(This article is part 2 of a special guest series by geriatrician Dr. Nicole Didyk, founder of the blog and YouTube channel The Wrinkle. Like me, Dr. Didyk has a particular interest in informing and empowering older adults and families. So I’ve been very glad to have her contributing to the site these past few years — you may have noticed she’s been helping me answer comments — and I’m thrilled to say she’ll be covering some topics that I haven’t yet had the time to address. Enjoy! — L. Kernisan)
Let me begin by sharing a true story:
One of the most unforgettable couples I ever worked with was Grace and David. Grace developed Alzheimer’s at the age of 63, and within 2 years of diagnosis, her symptoms were such that she moved into a long-term care home and used a wheelchair to get around.
She and David had been married for 42 years, had 4 kids, a dairy farm, and a warm and affectionate marriage. David continued to visit Grace 3 times a week, until her death (after a bout of pneumonia) at the age of 69, and in the last two years, his girlfriend, Linda, accompanied him almost every time.
I remember being so touched by the way that David and his new partner lovingly advocated for Grace when she needed it, with both stepping in to provide hands-on care when staff at the home were overwhelmed. There were some who judged David for so boldly “having an affair”, but most saw his involvement in a new relationship as a much-needed respite for him, and a way to expand the circle of love for Grace.
Have you ever met a couple like Grace and David? Keep their story in mind, as I share more about Sex and Caregiving, and Sex and the Changing Brain.
How does sex and intimacy change when one partner becomes a caregiver?
A few years ago, for the Wrinkle, I interviewed my colleague Natalie Wilton, social worker, and sex therapist, about intimacy and sexuality in couples who move into caregiving roles, due to dementia or another illness.
Natalie and I have chatted about sex in later life before; in fact, I shared the highlights with Dr. Kernisan on her podcast episode Better Sex in Later Life. (You can also read my related guest post on BHWA, How Sex Changes With Aging (& What You Can Do About It)).
Natalie Wilton’s work as a sex therapist for older adults has kindled a passion for her research into sexuality and the older caregiver. It’s hard to talk about older caregivers without bringing in a discussion of dementia, and Natalie’s main professional role outside of sex therapy is as a behavioral specialist working with people with dementia. Some of the most distressing behavioral changes in dementia can involve sexuality – but sexual expression can also be a positive force in the person with a changing brain.
On my website, The Wrinkle and YouTube channel of the same name, my interviews with Natalie led to a three-part series about Sex in Later Life. Part Two was about Sex and the Caregiver, and Part Three addressed Sex and the Changing Brain
In this article, I’ll share some of the highlights from my interviews with Natalie, when it comes to better sex when you are a late-life caregiver to a spouse or partner. In particular, I’ll cover:
- What we know about partners becoming caregivers
- How caregiving can change an intimate relationship
- How to maintain sexuality and intimacy in a caregiving role
- Addressing sexuality and intimacy when one partner has dementia
When spouses and partners become caregivers
Caregiving is a hot topic, and for good reason. In Canada, there are 8 million unpaid caregivers, and approximately 8% of these are looking after a spouse (the highest proportion is children looking after an aging parent at 48%).
In the United States, there are an estimated 34 million unpaid caregivers, and 22% of those are spousal caregivers. Over half of those spouses are caregiving alone, without support from children or other family members. Spousal caregivers tend to be older themselves, with an average age of 62.3 years old, and 43% are 75 or over. Spousal caregiving may be underreported as many people, especially women, feel that it’s just part of their wedding vows, and not a separate role that deserves recognition and attention.
Caregiving can take many forms:
- Emotional: Support as the person copes with appointments, uncertainty about test results, the future, and symptoms of the illness.
- Physical: hands-on assistance with bathing, dressing, transferring, walking, feeding, managing bowel and bladder functions and more. Caregivers spend an average of 6 days a month helping with these activities.
- Cognitive: planning activities and meals, managing finances, organizing appointments, meeting with physicians and other providers, and advance care planning. Caregivers spend an average of 13 days per month supporting these activities.
The list of tasks that may need to be supported is exhausting to read, and that often doesn’t leave the caregiver with much energy or desire for sex. Caregivers may also have less time to pursue their own hobbies and interests or may not be able to enjoy them without their partner, which is a source of added stress.
In my interview with Natalie Wilton, she pointed out that: “You will have a sexual identity before being a caregiver, during the caregiving and after that caregiving role ends, you will still be a sexual being,” but also that, “people (in a caregiving role) often set that aside because they are so busy looking after everything else.”
Caregiver or lover?
One of Natalie Wilton’s main research questions is: ”How can we be caregivers and sexual beings?”. Caregiving can alter a relationship when:
- The caregiver takes on tasks the partner used to do (role reversal or change)
- The relationship dynamic changes to that of a parent-child rather than an intimate partnership
- Caregivers are more likely to have health issues themselves, including depression
- Female caregivers, in particular, might feel a sense of “spousal duty”, which can lead to resentment and burnout
Now, I should mention that there are many positive aspects to caregiving too:
- Many caregivers report a sense of fulfillment and satisfaction in being able to help their partner through their illness.
- It can be empowering to take on the role that the partner used to perform (for example, taking over finances or driving)
- For some, being a spousal caregiver is a spiritual journey and an opportunity to show love in a new way.
Caregiving in Dementia
Later in the article, we’ll cover how sexuality can change in a person living with dementia, but when it comes to caregiving for your partner with dementia, it’s worth pointing out a few of the challenges:
- Ambiguous grief for the loss of the person the way they used to be, and for the relationship
- The person with dementia may have behaviors which can make caregiving more difficult (such as apathy, hallucinations, sleep pattern disruptions)
- There is a need for cognitive caregiving, in addition to physical, emotional and social support to the person with dementia
- The course of dementia is usually one with frequent changes in a person’s symptoms and needs and a trajectory that is hard to predict
- Caregivers can become socially isolated as dementia progresses and the person with dementia goes out less and visitors come by less frequently
(Reference: Macdonald, M. et.al. (2019) Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review. JBI Database of Systematic Reviews and Implementation Reports: June 2019.)
Maintaining sexuality when you’re a caregiver
Natalie Wilton shared that, with the demands of caring for a spouse: “People are trying to find control of their whole day when they’re caregiving. And so, then they fall into that parent role, it’s hard to feel sexy after you’ve spent the rest of your day in that parent type role.”
Another challenge is the need for what Natalie calls “instrumental touch”. In the course of caregiving, there may be lots of physical contacts, but much of it is for the purpose of providing care, not to show affection or for pleasure (as in “affectionate touch”). This may leave a caregiver without the craving for their partner’s touch, but also not feeling satisfied.
With these challenges, why even take the time and effort for sex when you are a caregiver? As we mentioned in the previous article about How Sex Changes With Aging, sex can have physical and emotional benefits for caregivers:
- Sex can cause the release of good brain chemicals like norepinephrine, serotonin, oxytocin, vasopressin, nitric oxide (NO), the hormone prolactin, and even endocannabinoid (your body’s cannabis chemical).
- It boosts self-esteem (for both caregiver and partner with care needs)
- It promotes intimacy and closeness
- Caregivers who have a satisfying sex life are happier than those who don’t
In the podcast “How to Have Better Sex in Later Life” on BHWA, and in Part One of the series on The Wrinkle, we talked about “The 3 T’s” of sex and intimacy. These are “Touch, Time and Talking”, each of which needs to be enhanced when there are challenges in a couple’s sex life.
- Touch: Natalie Wilton points out that there can be opportunities to turn instrumental touch into affectionate touch: “Maybe that means when you’re washing somebody that you rub their back a little bit longer, you give them maybe a cream massage and just trying to find those moments of affection where you can add affection into those instrumental pieces.” She adds: “Just focus more on those caring, loving touch, relaxing touch, as opposed to actually trying to feel like you need to have sex all the time.”
- Time: As we mentioned in the first article, “Libido almost has a 24-hour cycle,” says Natalie. ”It’s not necessarily in that 24 minutes before sex, it’s in the 24 hours ahead of it. When you’ve been caregiving and working hard for 24 hours, and the 24 hours before that, it can be really hard to feel sexy and feel like being intimate.” Often, making it a priority to allow time for other pleasurable activities can be satisfying to caregiver and person with care needs: “Try to take the focus off performance and look more towards pleasure. Focus more on getting those comfort things out of intimacy, the feelings of love and affection, those relaxation aspects that you can get out of intimacy rather than feel that there’s a performance that needs to happen.”
- You may also need to make the time for solo sex. Natalie suggests that people consider masturbation to meet their needs: “People don’t necessarily think about that and think, oh, that’s not something that I want to do. But it’s good for you and we talked about it before that use it or lose it.”
- Talking: This can include talking to:
- Your partner: Early in the course of the illness or disability, it’s helpful for couples to talk about all aspects of their relationship, yet sexuality and intimacy are often ignored.
- Your health care provider: When a health professional doesn’t ask about sexuality, a caregiver is missing out on addressing “disenfranchised grief”, and not acknowledging the loss of that part of the relationship. Natalie told me that: “Sexual health is included in our physical, our emotional wellbeing. If we don’t deal with it, it’s neglecting an important aspect of our life and our identity.” She indicates that a big part of her job as a sex therapist is validating that a caregiver’s sexual needs are important and need to be addressed.
Spousal caregivers are providing hands-on assistance to their intimate partner, often at the expense of meeting their own needs for intimacy and sexual satisfaction.
For any sexual challenge that comes up in a relationship, taking more time, more touch and more talking are strategies that can refresh the caregiver’s energy and restore intimacy.
That said, the challenges related to sexuality can be particularly tricky when the spouse is living with dementia. So let’s now turn to that.
Sex and Dementia
Talking about sex and dementia is almost always complex, and when I talked to Natalie Wilton about Sex and the Changing Brain, our conversation ranged from addressing “Inappropriate Sexual Behaviour” (ISB) to what to do if one partner forgets about the relationship (because of dementia). But no matter what specific issues come up, it’s essential to remember that both partners still have sexual needs.
In this part of the article, I’ll cover some of the key points from my chat with Natalie:
- Ways the brain changes of dementia can affect sexual expression
- How to determine if sexual behaviour is inappropriate or not
- Resources for supporting healthy sexual expression in those living with dementia and in long-term care
- When another person enters the relationship
Dementia and Sexual Expression
Dementia is a neurocognitive disorder marked by changes in memory, language, judgment, reasoning, and other areas of brain function. It’s not a normal part of aging, but older age is the biggest risk factor for dementia. The most common cause is Alzheimer’s disease, followed by strokes, and it’s not uncommon to have both of those, which we refer to as “mixed” dementia. Most types of dementia are progressive so that the longer someone lives with that diagnosis, the more severe the symptoms.
As a geriatrician, a large part of my practice is caring for older adults with dementia and their families, and one of the most common reasons that sex comes up in my office is in the context of sexual behaviors in a person with dementia.
Because of the neurocognitive changes in dementia, sexual expression can be altered. It may relate to the type of dementia, or the part of the brain that is affected, so for instance:
- Alzheimer’s disease – a person may not recognize their partner, may not recognize that a setting is inappropriate for sexual activity, may not recall their own age and marital status, and seek a partner outside of their marriage and/or age group.
- Temporal lobe changes – may cause disinhibition (loss of “filter”), hypersexuality (uncontrollable need to have sexual stimulation)
- Frontal lobes – may cause a loss of interest in sex, disinhibition, and apathy
- Mood and emotional changes – Natalie shares that: “Even the lack of empathy and understanding that comes with brain changes, when you become that more self-centered person, you don’t appreciate how what you’re saying or doing is affecting other people.”
These changes can manifest as:
- Increased or decreased interest in sex
- Increased or decreased ability to perform
- A decrease in sexual inhibitions
- Change in sex “manners”
What does not change is the need for intimacy and comfort, whether through sex or some other form of communication, on the parts of the person with dementia and their partner.
What to do when sexual behavior is “inappropriate”
Sexual expression by a person with dementia often raises an alarm and is quick to be labelled an Inappropriate Sexual Behaviour, or ISB. Natalie Wilton is not only a sex therapist but also a practising behaviour therapist for those with dementia and responsive behaviours. She has noticed this labelling, and told me that: “When we see a sexual expression and we know the person has dementia, the first thing we need to be looking at is how are the brain changes that we’re seeing in this person affecting the way this expression is appearing.”
She went on to share that when determining the unmet need that is being signalled by the behaviour, we should consider a person’s:
- Previous sexual orientation (which may or may not have been publicly disclosed),
- Sexual “persona” (whether they were reserved and shy, or flirtatious and provocative),
- Culture and cohort (whether they were raised in a time and place with clearly defined traditional gender roles or not, for example)
- Prior sexual and romantic experiences
An example may be a person who is living in a long-term care home and is disrobing in shared spaces, like the dining room. Rather than being an ISB, this behaviour is related to the fact that, before developing dementia and going to live in a communal setting, this man would usually hang around his home in the nude. It was how he felt most comfortable when he was at home, and now that he is in a long-term care facility, he wants to be comfortable again, but may not recognize that this could be problematic when others are around.
Listen to the interview for other examples, which illustrate, as Natalie put it: “That lesson about digging a little bit deeper and finding out about the person and seeing if we can apply the dementia lens to it before we apply other things to it. And what the actual needs are and intent.” Often an ISB is normal behaviour, just happening in the wrong setting, or maybe a responsive behaviour that is not sexual but related to another need.
Sometimes a behaviour is inappropriate though, and may fall into one of these categories:
- Intimacy seeking – seeking touch, or intimacy, but in the wrong context or with the wrong person
- Sex talk, (foul language, not in keeping with a person’s previous persona)
- Sexual acts (touching, grabbing, exposing, or masturbating, which can occur in private or in public areas)
- Implied sexual acts (for example openly reading pornographic material or requesting unnecessary genital care)
Medications that are sometimes used
If there has been a careful search for unmet needs, and those needs have been addressed but the challenge persists, then medications may be the answer. Here’s a list of medications that can be used to treat ISB:
- Antidepressants: Selective serotonin reuptake inhibitors (SSRI’s) are the most common class of antidepressants used for ISB, as they seem to reduce libido and can also decrease anxiety and obsessional thinking. Their side effects can include diarrhea and upset stomach, and an increased risk of falls.
- Antipsychotics: Quetiapine is an example of an “atypical” or newer generation antipsychotic which is commonly used to treat behavioural challenges in older adults with dementia, although there are concerns about safety, which you can read more about here. Quetiapine is a tranquilizer and can also cause sedation and increase the risk of falls. All antipsychotics carry an FDA “black box warning”, due to their association with increased mortality in older adults.
- Anticonvulsants: Usually used to control seizures, these medications, like pregabalin, carbamazepine, and valproic acid, can also reduce libido and may help with the treatment of ISB. Side effects include sedation and increased fall risk.
- Cholinesterase inhibitors: Drugs like donepezil and rivastigmine are used in the treatment of Alzheimer’s disease and they can help in ISB, although the mechanism by which they work isn’t well understood. The main side effects to watch out for with these are loss of appetite, diarrhea, and nausea.
- Hormonal medications: Drugs that reduce the production or activity of testosterone, like finasteride, medroxyprogesterone (MPA), cyproterone acetate (CPA) or estrogen, can reduce libido and reduce ISB. Side effects are usually fairly minimal if these drugs are only for short term use.
- Beta-blockers: Most often used to treat high blood pressure or heart disease, beta-blockers like metoprolol can reduce sexual drive, but side effects can include reduced heart rate and blood pressure, and worsening asthma.
As with all medications we use in Geriatrics, the approach is to “start low and go slow”, and only use a drug if we feel that the potential for benefit would outweigh the risk of harm.
ISB can be very distressing to patients, staff (if it’s happening in a care home) and families. So it’s often reasonable to consider medication, along with the non-pharmacological strategies that we always use when there is a responsive behaviour in dementia.
Dementia and Relationships
Remember Grace and David? I started this article with a story about Grace and David, who maintained a strong relationship after one of them moved into a long-term care home with dementia, and the other got a new “girlfriend”. This is not an uncommon scenario, and sometimes the person with a new partner is the one living with dementia.
I asked Natalie Wilton about it and she told me that a partner with dementia or caregiver turning outside of marriage for sexual needs, may be related to not recognizing the spouse. ”It’s about understanding dementia and what changes are happening in the brain, “ that makes framing it as “infidelity” inaccurate at times. Natalie says: ”It’s about that need for companionship, for warmth”, for the person with dementia. When education is provided to families, the situation can be less uncomfortable and more supportive.
Early after a dementia diagnosis, some couples may want to discuss their wishes if one partner seeks to fulfill their sexual needs outside of the marriage. Natalie touched on this in our interview: “Even if you don’t actually have that talk, you have a sense like I think my husband would be okay if I remarried somebody if he died. But what we don’t talk about is what if we’re still living? What if we are cognitively unwell and I’m living in a nursing home and you meet somebody else. Is it okay to go outside of that relationship? And there’s no perfect answer for that.”
Another common challenge for a caregiver is whether to initiate sexual activity with a partner who may struggle with recognizing the care partner is. Natalie told me that this is “a big issue that people struggle with, and it’s a moment by moment decision in those situations.” There’s no “blanket” consent to sex, even between spouses, so interaction by interaction, the care partner needs to interpret the cues and decide what is best.
When couples separate because one of the partners has moved to long-term care, the issues around sexual expression can be heightened. An example of a framework for how to support positive sexual expression in long-term care is the Best Practice Approach to Intimacy and Sexuality in Long-term care, developed by some of my colleagues in Geriatrics in Ontario, Canada. The basis of this tool is that healthy sexual expression is a human right (as recognized by the WHO) and that caring for a resident’s sexual health when necessary is a part of providing comprehensive, compassionate care.
The Bottom Line:
If you’ve found yourself taking on a caregiving role, I want you to know that it’s common for this to affect intimacy and sexuality.
The good news, though, is that many caregivers are able to improve this important dimension of their lives, once they’re given some encouragement and suggestions.
If you are a caregiver for your partner, here are the key messages I want you to know:
- When one partner becomes a caregiver, it is inevitable that the dynamic changes and this can bring changes to the intimate and sexual aspects of the relationship.
- If not addressed, these unmet needs can cause resentment and affect the health of the caregiver, and the person receiving care
- Using a “3 T’s” framework, strategies to address the challenges include:
- acknowledging and communicating about sexual and intimacy needs
- allowing more time and putting less importance on a particular physical act or outcome
- emphasizing affectionate touch
If you have a partner living with dementia, these are the key messages I want to share:
- The brain effects of dementia can alter a person’s sexual expression and behaviour, and these changes may not be something a person can “control”
- When sexual expression causes a challenge, the care team should begin with getting an understanding of the person, their illness and their environment, to look for non-pharmacological approaches
- Medications can be a part of the treatment plan if there is inappropriate sexual behaviour, but they are not without some risk of side effects
- Forming new relationships may be a part of a couple’s journey with dementia and maybe something that can be negotiated early after a diagnosis has been received.
Here are some resources if you would like to learn more about Sex, Dementia, and Caregiving:
- A Best Practice Approach to Intimacy and Sexuality in Long-term care: An older but very progressive and sex-positive paper by a Canadian working group to guide long-term care homes in developing policy about sexual expression for residents.
- Sex, Intimacy, and Dementia: On the Alzheimer’s Society of the UK website, a review of common issues in sexuality and dementia, with links to other resources.
- Seniors and Sexuality for Caregivers: from the Family Caregiver Alliance site.
I’d also be delighted to have you come visit my site The Wrinkle, where you can listen to my interviews with geriatric sex therapist Natalie Wilton; I even have downloadable transcripts for those who want them. Here are the links:
- Part One – Sex in Later Life – Interview with Natalie Wilton
- Part Two – Sex and the Caregiver with Natalie Wilton
- Part Three – Sex and the Changing Brain with Natalie Wilton
And of course, if you have any questions or comments, please post them below!
(There’s nothing to be embarrassed about and…you can of course post as “Anonymous” if you prefer. Because there’s nothing wrong with wanting a little privacy too.)
Jen Murphy says
I am having a terrible time trying to understand that even in front of me my husband (after a stroke) denies he is saying and found inappropriate sexual behavior to his caregivers many of times it has been in front of me!! How do I understand this non stop sexual behavior that is really upsetting me daily!!
Nicole Didyk, MD says
Hi Jen, and I’m sorry to hear about your husband’s stroke. Some types of stroke (such as those affecting the frontal lobes of the brain) can cause inappropriate sexual behaviour, that can be very difficult for a person to recognize or control.
I can understand that being upsetting and in some cases medication can help. Alternatively, there may be specific behavioural approaches that you or the caregivers could use to redirect his actions. A Geriatrician or Geriatric Psychiatrist might be able to help.
Elaine Cobb says
My husband is in middle stages of dementia-he also has ED-I don’t encourage or enjoy sex with him anymore. I would like to be able to touch him, hold him & have him do the same-but it always ends the same…him wanting more than he can deliver. Consequently, I am growing colder-he is starting to have dillusions & accuses me of things I’m not doing. I hate this!
Nicole Didyk, MD says
I’m sorry to hear about the challenges that you’re having and I thank you for sharing your story. Your feelings are valid and normal for what you’re going through.
Erectile dysfunction can have many different causes and is often treatable, so I advise men who are experiencing ED to check with their doctor to rule out medical or lifestyle issues that could be at play.
It’s good that you’re still interested in affectionate contact with your partner, and that’s a place to start, before more distance and coldness develops. In a situation like yours, talking to a counselor could be very helpful: a therapist, social worker or sex therapist. They can probably offer some ideas for how to find closeness without the pressure of needing to get to sexual intercourse.
lgbt support says
This article tells you about the things you come to know about the navigating sex while caregiving for dementia. You would get the best review over here and would suggest others too. I like how you have researched and presented these exact points so clearly.
One thought that wasn’t mentioned was the caregiver’s feeling of taking advantage of his/her “patient” sexually. It would feel like taking advantage of a child. My partner was sexually active prior to rapid onset of vascular dementia (no stroke) but now shows no interest in sexual activity. When someone regresses to a childhood mind is it ethical to initiate sexual activity? Your thoughts?
Thank you, RC
Nicole Didyk, MD says
Thanks for sharing your experience, and for asking a great question. I had a chance to talk to Natalie Wilton, sex therapist about this, in my podcast, which you can listen to here.
It’s tricky for sure, but it can be possible to have a consensual sexual interaction, even when one partner is living with dementia. It may need to start with a focus on activities that the person previously enjoyed, and move towards the sexual act in a gradual way, with moment-to-moment checking in to make sure that the partner with dementia is still on board. Even if parts of the person’s behaviour may be more juvenile, they are still adults and should be able to enjoy the full range of adult activities, as long as it happens in a loving and mutually agreeable way.
So nicely explained. Here I wish to share and take your advice. I an 75+ and my wife 72+ having Dementia since 2014.
Just started giving and taking bath together. Many time I get arousal after massage etc.
She enjoy my caressing her and once in while we have sex. My worry and concern is I can reach a climax, but she does not seem to feel/know reached or not…is this harmful for her health?
Nicole Didyk, MD says
I’m glad you found the article helpful!
It’s a moment by moment assessment as to whether a partner with dementia is consenting to and enjoying sexual activity. People living with dementia can definitely have sexual pleasure, and that can be good for their health. Sexual activity doesn’t need to end in a climax to be satisfying.
You know your wife best and can tell if she’s having a positive experience, but having sex is not likely to be bad for her health as long as it’s not against her wishes.
Caring Wife says
I’m the caregiver to my 47 year old husband who suffered a massive stroke. He needs care full time and is not able to have sex and is fully disabled. I never thought I’d be in this situation after 25 years of marriage. Is it appropriate for me to look elsewhere for intimacy, companionship and sex? I’m having such a hard time coping, being alone and caring for my husband and 3 young children. I love my husband and would
never want to hurt him. Cognitively he is fine, it all his motor functions, coordination and everything the brainstem controls that was affected.
Nicole Didyk, MD says
You do sound like a caring wife, and I can’t imagine how hard it would be do be in your shoes.
The feelings that you’re expressing are completely normal for someone in your situation, and ideally, this would be something that you had talked about before his stroke, or would be able to discuss now. You mention feeling alone and having a hard time coping, and it’s worth considering whether turning to someone else for intimacy, companionship and sex would alleviate those feelings or cause new problems.
If I had a patient like you, I would recommend finding a counsellor who could help, which may or may not include advice about bringing a new person into your life. This counsellor, if they’re experienced with your situation, may also be able to facilitate a discussion with the two of you as a couple.
Stroke wife says
I am in the same boat with you. My husband had a massive stroke at 48 and it’s been 2 years since any intimacy. It is difficult going through the daily caregiving duties, and working, and raising kids. I do have needs, more so emotionally, but sexually as well. I have wondered the same thing. I know my husband wouldn’t handle it well. I am so depressed and burnt out. I hate the way I feel. My marriage of 27 years has had its struggles, and many things I just “took”. However, I stand up for myself now, and I don’t let his hatefulness or hurtfullness depress me as bad as it used to. I call him out on things. Used to, sex helped release some of the hurt and frustration, but that’s impossible now. Know that you are not alone in this struggle. I have been a faithful wife, and I don’t want to cheat. I just want to feel loved and appreciated, wanted for more than to dump urinals and change diapers. Sometimes I think just one really romantic night of cuddling and lovemaking would relieve so much tension and help me, but I don’t know if I could actually enjoy it or if I’d feel guilty. Good luck to you! I talk to God about this and He always helps me through.
Nicole Didyk, MD says
Thank you for sharing your experience so openly. Many are in a similar situation.
Using fantasy, masturbation, and other sexy solo activities can release tension and relieve some of the hurt feelings that naturally arise. Pampering and taking time for yourself in other ways is really important as well. Don’t judge yourself too harshly and think of how you would be compassionate to a friend if she were in your shoes – then treat yourself with that same love.
My husband who has Alzheimer’s and I have not had a sexual relationship for over 6 years, I love my husband dearly and tell him this every day, our intimacy consists a little kiss or peck on the cheek and a cuddle, I find lately I really miss sex and am debating whether to look for this outside the home, my husband is the most important person in my life and I will always love and care for him, what advice can you give me, is it wrong of me to want this.
Nicole Didyk, MD says
Cath, your experience is relatable for many caregivers of spouses living with Alzheimer’s disease and other dementias. Intimacy and sexual expression is an important part of life and it’s natural to have thoughts like the ones you describe, and it’s not “wrong”.
It might be helpful to imagine what your husband would advise you if he could appreciate your dilemma. Or if your roles were reversed, would you be alright with him finding a new person? It’s worth considering the potential that other family members or friends could have opinions about this as well.
Seeking to satisfy sexual needs outside of marriage for any reason is going against societal norms in most cases, but nobody can judge your feelings and thoughts, unless they are in your shoes. Peer support could be extremely valuable in this scenario, as I’ve met care partners who’ve been through a similar experience. They could offer advice or at least support and understanding.
I can totally relate to your situation! My wife has a form of adult muscular dystrophy called Inclusion Body Myocitis (IBM). In the last 15 years, she’s lost most of her muscular strength in her thighs, abdomen, arms and hands. She can’t climb or descend steps, can only walk short distances using a walker, rides most of the time in a power chair, uses a lift chair and needs to be helped with standing when not in a lift chair. I work from home and am her primary care giver. She has been in and out of the hospital with Covid-19, medicine reactions and a broken arm, from a hard fall she had last year.
We are both 58 yrs old. I have worked out hard in the gym and through other physical sports, so I can lift her and emotionally and physically carry the load of doing all the house work, outdoor work, home maintenance, shopping, cooking, laundry, etc, etc. We have been best friends, lovers and spouses since college being married for 35 years with a very active and amazing sex life.
As her muscles and body started to atrophy 10 years ago, our sex life slowed down considerably and came to a stop about 5-6 years ago. I have channeled my sexual energy into sports – swimming, pickleball, softball, golf, weightlifting, yoga, hiking, etc. I went through several years of mourning the loss of our physical, intimate and sexual relationship as well as our travel bucket list. My wife has encouraged me to travel with family and friends to keep my bucket travel list alive. And my friends have encouraged me to take time away from the daily caregiving for “me”. Besides the sports, I am looking forward to planning some trips to hike some mountains in far away places to take some adventure vacations, etc.
I also have considered trying to find a “friend with benefits” (sexual partner) outside the home. And have considered trying to find someone with similar interests perhaps to travel and have intimate times with perhaps at the same time… I haven’t taken any action on it, at least as of yet, but it has been in my thoughts more and more. So, I can really relate to what you’re feeling. I’m not sure of the answer yet, but just wanted to share that you’re not alone in your thinking.
Nicole Didyk, MD says
Thanks for sharing your story. It’s helpful to hear how other couples have navigated the challenges of changing abilities and sex. And a good reminder that no matter what you’re going through, you’re not the only one. I wish you and your wife well.
My husband has MS. We have been married for 22 years and in the last 2-3 years his ms has progressed to the point that often I have to help him with many normal day to day things. I also work full time as a teacher and we have 2 teens. I ask them for help alot but most still falks on me. I am finding it harder and harder to feel sexual attracted to my spouse.
Nicole Didyk, MD says
Thanks for sharing your experience, Kelly. It sounds like you have a lot on your plate, it’s no wonder sex is one of the last things on your priority list. Your idea baout delegating some of the work to other family members is a great one, and a good startegy to rely on moving forward.
Solo sex (masturbation) can be a way to look after your sexual needs during this period of waning attraction, which may not last forever by the way. When your kids move out or your work life gets less demanding, you may find yourself feeling differently.
The other thing to consider is whether there are any medical issues affecting your libido. If you’re not interested in sex at all (not just sex with your current partner) then your doctor might be able to help.
I am like Kelly, my wife had an amputation 2 years ago. Her long painful recovery and ongoing pain and struggles with daily living, depression, job loss and more have left me overburdened and depressed. My libido is strong, but I struggle with matching her 10% of feeling good enough for intimacy and the 90% of feeling pain/sadness/anger/exhaustion. When sex is possible, we also have to fit in seeing friends and family, shopping and getting out of the home, so sex is cut. I can pleasure myself, but that generates resentment from her and towards her. The marriage has become vital for her and miserable for me; an unhealthy and unsustainable part of our lives.
Nicole Didyk, MD says
I’m sorry to hear about how your sex life has put a strain on your marriage.
You make a good point about prioritizing intimate time versus family commitments, and often couples need to pull back from some social obligations to nurture the bond between them.
Masturbation doesn’t always need to be a solo activity, and is part of many couples’ sex activity. Communication about this might be a good way to open a dialogue about this critical part of any relationship.
Thank you for sharing your experience.
My husband has been diagnosed with cognitive impairment yet to all accounts continues to function mostly normally.
However I have to do everything, plan , clean, cook, organise medical appointments etc etc, He is unable to organise, complete tasks or recognise what needs doing.
The relationship is totally parent /child now and I have zilch libido.
People see he is this bright cheerful, joking lovely man
i resent his frequent sexual needs and it is affecting how I care for him. He has other health issues that cause a lot of pain yet sex often becomes uppermost in his mind and after worrying all day about his pain, he seems to forget it when his sexual needs come to the fore.
He is a lovely kind man but I am frightened of my attirude.
I have no desire to engage in any sex , but would love hugs and cuddles – an impossibilty as his sex urges take over so i avoid and dread making moves that could trigger his needs.
What to do??
Nicole Didyk, MD says
A mismatch between partners’ libido is common for many couples, and can be more complicated when cognitive impairment is a part of the picture.
Depending on the type of cognitive impairment, it might be that his outsized sexual desire is a responsive behavior of dementia. As such, a behavioral therapist or medication, like an SSRI antidepressant, might help.
I would suggest telling your husband’s doctor what you’re seeing and if they’re not sure what to do, a referral to a Geriatrician or Geriatric Psychiatrist might be in order.
My husband is 75. We have been married 22.5 years. There has been no sexual contact between us in over 17 years. He has some health issues and In January he was diagnosed with Dementia. So now I’m his caregiver. He is able to get around and struggles with what he can no longer do. All of a sudden he wants sex. I’ve come to terms with no sex after so long a time and now find his demands upsetting. Im on edge all the time he’s near me just waiting for him to suggest sex etc. I am 72, in good health, but don’t know what to do. He’s my husband, I feel obligated in some ways but revolted at the same time.
Nicole Didyk, MD says
Thanks for sharing your experience.
A sudden change in sexual desire could be related to a medical issue. For example, mania or some types of dementia (fronto-temporal dementia in particular) can cause a rapid increase in libido. Might be worth checking with his primary care physician to rule those things out.
I might sound like a broken record, but when there’s a sexual desire mismatch, the 3 Ts of time, talk and touch is something to try. Telling your husband that you’re not ready to go from 0 to 60 in the sex department could be the start of negotiating how to slowly find your way back to intimacy. A sex therapist might help too.
Like many who have commented, my partner of 20 years has both Parkinson and dementia. I am his full time caregiver. Naturally I feel resentment that our life is over. He shows no affection or desire for affection ever. I initiated our sex in past. . He’s never been very affectionate but I managed. As we never married, his choice, I feel that this time in my life can’t be over. I’m a very active 72 year old and need more in life. I will forever care for my partner but I need more then 24/7 caregiving. I too have considered looking elsewhere. Your thoughts???
Nicole Didyk, MD says
I’m sorry to hear about your partner’s health, and it’s natural that this would put a strain on your relationship and intimacy.
I’ve met many couples who are caring and committed, but where one partner is a caregiver and has unmet needs for sex and intimacy. I don’t think anyone can judge a person’s behaviour in that situation unless they’ve been in it, but societal norms tend to frown on turning outside of marriage for any reason.
It can be helpful to think about what your partner would say if he could appreciate the situation. Would he want you to be happy, even if it meant finding a new partner? Would you be a better caregiver if you had the support and comfort of a new partner? are there other ways to meet needs for sex and intimacy without bringing someone else into the equation?
No one path is right for everyone. Talking to a counselor might help things to come into focus for you.
Thank you for this important information. Your guidance and expertise opens the door to much needed sharing and acceptance. My husband and I were 24 years apart, and he recently died at age 90 in the advanced stages of dementia. As a RN, I was fortunate to have the knowledge of the changes likely to come, including sex. As his condition progressed, I adapted to accepting how more primal and one sided sex had become and not in the romantic way he provided to me before. I also realized I didn’t want to seek my own sexual fulfillment outside of our marriage, and became more comfortable with self-fulfillment. The need to satisfy him wasn’t frequent as he progressed, but I was able to recognize the need when he could not verbalize it and I felt gratitude and pleasure I could provide him with the sexual relief he wanted and needed. I realize everyone’s situation is unique to them, but wanted to share in the event knowing how others cope will help them discover a solution in navigating through the challenges of dementia and it’s associated diseases. Being knowledgeable, and sometimes creative, can help maintain our own well being and our love for our spouse/partner.
Nicole Didyk, MD says
Thank you so much for sharing your experience and I’m sorry for the loss of your husband.
You sound like a very loving and compassionate spouse, and the two of you must have been very much in tune with each other for you to be able to navigate your sexual connection, even as he progressed with his dementia.
I appreciate that you acknowledge that everyone’s situation is different and I fully agree. I’m sure that many can relate to your situation and thank you again for taking the time to share.
Reading these comments was very helpful to me. I and my hb.are 80. And as his dementia has developed over the last five or six years sex has been nonexistent. At this stage, he can be affectionate can give me hugs, but they are brief. His loss of speech and the resulting in ability to express himself has made communication difficult. I very much miss the intimacy, the sharing of ideas and experiences, and feel very alone. I have good friends, but that’s not the same as a partner. I have begun to look outside for someone to talk to connect with, but feel very ambivalent about these efforts. He has lived in assisted-living for a little over a year and I live in independent living. I still care a great deal about him, and feel obligated to look after him . I don’t know how to look after myself at the same time without feeling guilty. Any comments?
Nicole Didyk, MD says
Thank you, Elaine for expressing so well what many experience. It can be very isolating and lonely.
There is an experience referred to as “anticipatory grief”, which you can read about here:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3251637/. It’s the stages of grief felt when a person is still alive, but living with a serious illness like dementia.
A therapist or a dementia support counsellor can help you work through these stages. As you do, you’ll probably get clarity about whether to pursue finding a new partner.
Brooke M. says
I’m sad to read that the prevailing “expert” opinion given to so many vulnerable people struggling in the situations described above is to actually consider breaking the marital vow “in sickness and in health, till death do us part”. We take marriage vows not expecting an ideal ending, but vow to stick with our partner, offering our fidelity to the end. Anything else is an extramarital affair. Uncertain if the therapists consider that the majority of these patients have religious affiliations that prohibit such behavior…governing covenants/vows taken with their spouses to be faithful till death.
I am in a very similar situation, which is what drew me to this article, but am greatly dismayed (though not surprised) at how casually a sex therapist is brought in to encourage acts like masturbation and extramarital affairs, justified because our partner got sick. The sex therapist wasn’t involved in our vows to each other, and there’s a good reason (called conscience) for feeling guilty when asking if taking on a sexual companion is okay while our spouse is still alive.
Nicole Didyk, MD says
Hello Brooke and thank you for sharing your point of view. It sounds like you’re devoted to your husband and that’s remarkable.
You express a concept of marriage and fidelity that many share, often as part of a faith tradition. Medical experts are trained to be open-minded and recognize that not everyone has the same belief system. Professionals provide guidance based on the client’s own ethics and morals, and in some cases, that might include activities like masturbation and taking on a new partner.
I hope that people can find a therapist that respects their perspective without judgment whether it’s rooted in a religious belief or not.
Brooke M. says
I appreciate your perspective and for the thoughtful comment, Dr. Didyk. One doesn’t need to subscribe to a religious tradition to realize taking on a companion in a marriage is cheating. A medical professional must remember when proposing such advice that in many states across the US, adultery isn’t just a crime in the eyes of your spouse. Taking on a companion while still legally married is considered cheating – and is against the law, punishable by a fine or even jail time. Medical professionals still are required to take an oath to do no harm, which sadly lies in a gray area as far as ethics and morals.