Death Literacy Intros: sex, end of life, and death
Updated: Sep 29, 2020
Death Literacy - a coin termed by Dr Kerrie Noonan. "Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options" (Noonan, et al 2016).
As all Gentle Readers of this blog are aware, dying is a 10 out of 10 statistic: we none of us walk away living forever, so the knowledge of, and understandings around, death being reclaimed in contemporary times is a healthy thing for our society in general. However there is another big "taboo" subject that we often shy away from discussing openly and that is sex - so today I decided to bring both the subjects together and have an in-depth look at sex, sexuality, death and advance planning. Because the fact is that sex is almost universal for humans - although I wish to make plain that the asexual amongst us are welcome here, being asexual is a form of sexuality and this is an inclusive space*. I am a sex-positive end of life doula, and am genuinely hoping that we can all begin to talk openly and naturally about the overlap between sex and death.
*If you are a Gentle Reader who experiences life without libido then you may wish to make a snack and a cuppa so you can read about how some of us need particular aspects of advance planning and lifestyle included in end of life discussions. And who knows - you may find the information useful for someone in your social networks at a later date.
Why is sex important if we are at end of life?
This is an excellent question, and one that takes many of my clients and attendees at talks by surprise, so I invite you to think about it this way: we are fiercely alive up until the point that we die. Some of us may receive a terminal or life-limiting diagnosis with an expectation of years of life ahead, so even if/when function of the body may change libido, desire for intimacy, need for touch and expressions of love are still present and vital aspects of ourselves and remain constant for us even when a diagnosis may be advanced. So yes, we need to acknowledge the need for sex in life, the role that sex and sexuality play in interpersonal communications and expressions of self, and that we are not all about losing all sex drive or interest in sex because we are ageing or at end of life.
It is also important to acknowledge that we, or our intimate partner/s, may lose libido and interest in sex all together - which is somewhat less of a problem if this is bi-directional. However if only one person in an intimate relationship has no desire or interest and the other person/s does this then becomes more problematic in terms of navigating personal needs and desires. Open conversations may be universally advocated, and in an ideal world I agree that open communication is the best way forward - but unfortunately not everyone is willing to engage in open conversations so individuals may need to make hard decisions for themselves. This decision-making may place additional strain on the relationship, or coming to a solution that works for an individual may be the choice that relieves pressure on the relationship and the person in question. Choices here include an affair, engaging the services of a sex worker, engaging the services of a sex therapist or coach, self-pleasure alone, or celibacy. Being in a sexless relationship/marriage is not uncommon in contemporary times, and is not easy even when the additional strains and stresses of end of life is intersecting with physical, emotional, and psychological needs. I am going to emphasise that whatever choice someone makes needs to be one that A) you can live with for the rest of your life without being eaten up by guilt or shame (otherwise don't bother), and B) one that will not be wielded as a weapon against your intimate partner (if you need to be that cruel why are you together in the first place).
Sex is nothing to be ashamed of, and sex offers many benefits at many levels to all of us. As shown here in the pyramid model for Maslow's Hierarchy of Needs, sex (here shown as 'reproduction' - which is sometimes interchanged with 'sex') is one of our foundational needs as human beings. There is the factor of drug reactions to bear in mind too, when someone with a terminal or life-limiting diagnosis may lose interest in sex and physical expressions of desire; and research shows that women miss out on sex far more than men do when the absence of desire for sex is present in a relationship. I will not - and should not - attempt to tell anyone which choice to make in terms of negotiating pathways to meeting needs and desires when libido is unequal in a relationship. However, I am available to listen and support you as you work through your own ideas for options and choices. I also have a good network of professional colleagues in a variety of fields when required, so please do not hesitate to get in touch with me if you would like to talk about why sex is problematic for yourself or your partner/s either during end of life, or after death.
Sometimes it is not desire that clients need to talk with me about, but the absence of desire - some people consider it shameful, taboo, guilt-inducing, or that they are somehow 'failing' their spouse/s or partner/s when they have no sexual desire at all. This lack of desire may be complicated by worry that any move towards intimacy with non-sexual touch will be misinterpreted, and as a result all touch ceases between intimate partners. At times like this bringing in a psychotherapist (like myself), or a sex therapist/coach, can be very useful and may contribute to an increased understanding between intimate partners that frequently leads to better verbal and physical communication.
Make friends with your local adult shop
If self-pleasure, or new ways of being pleasured and sexual with your intimate partner/s needs some inventiveness due to changing physical capacities, then sex toys are a sensible way to go. In these days of online purchasing and research one commonly overlooked venue for shopping, self-education and (hopefully!) a safe space for exploring new options is your local brick and mortar adult shop. This is a bit of a generalisation, but adult shop staff are usually well-trained in their product lines, many often have used a range of the products on offer (there are a LOT of training days offered by suppliers to adult shop staff), and some staff members are in the lifestyle - so you are going to probably have your questions answered honestly and fully. I did this myself some time back when I had some older clients who were experiencing recent bereavement, and I recognised that I had a gap in my own knowledge base when the subject of masturbation came up. I promised to do my research, and promptly did so later that week.
One of the greatest experiences of my life was walking into our brand new adult shop and talking to the manager about vibrators and dildos appropriate for older skin/tissue and arthritic wrists. An hour and a half later I was much better informed with specialist information for older women and men alike, had had several really good laughs with the highly-capable store manager, and had a new connection that has blossomed into genuine friendship. I began attending adult education sex classes on a monthly basis and have even stepped in an presented one month when the usual teacher was unavailable - and yup, you guessed it, vibrators and electric toys was my subject matter that evening. I am very fond of the saying 'latex is our friend!' in terms of safe sex, but now I also include 'silicon is AWESOME!' for many sex toys.
Some of us ultimately prefer shopping online for toys, and there are many possible outlets so it does pay to do your research - however do bear in mind that all cheap brand and novelty toys should be skin tested if you are unsure of the material content. Try rubbing the toy on your inner wrist and wait 20 minutes. If you do not have skin reaction within that time it is probably safe for your more intimate skin. Do always remember to use the correct lube for the material you are using, ask your supplier or local adult shop contact for details if you are not sure which one to use. This is a good overview read of lube types - including pervertibles in the kitchen - but do double-check with your local adult store or trusted purchasing source if you are ever in any doubt; putting silicone lube on a silicone toy is a quick way to throw lots of money away, for example.
Have you done your advance planning for your sex 'stash'?
In a recent interview Ralph Bruneau (International Mr Leather 2017) reflected on the grief he sometimes still experiences for his late partner Tom, and the way that, in the time of the AIDS epidemic death from AIDS was something intensely shameful. Therefore, anyone perceived to by living a gay lifestyle was intensely shamed. Bruneau was open with a GayStar news interviewer about 'de-gaying' his former partner's apartment when he was caring for him at his end of life from AIDS - this included throwing out toys and porn. Bruneau acted out of love at a time when the stigma of homosexuality and HIV was at a fever pitch and unfortunately being open about one's sexuality and lifestyle was dangerous, and thankfully we have made gains in terms of backing away from policing what people do in their bedrooms - to a certain extent. While same-sex relationships and love are far more mainstream today than in the time discussed by Bruneau, kinksters do often still experience social judgement, along with those in poly relationships, and if not all the people in your family and social networks are admitted into your confidence advance planning for your sex stash can help you maintain discretion and confidentiality even after your death. NZ stand up comic Urzila Carlson has a bit in one of her shows where she openly talks about having 'that friend' who will run to Carlson's house when news of her death is heard - someone, after all, needs to take care of the "black bag under my bed!"
Advance planning for your stash and collection/s can also help your executor out immensely - items of specific interest and erotica are often highly collectible, and arranging in advance to have part or all of your collection sold through a specialist dealer can streamline your executor's time and energy. And don't forget, for the special people in your life that may have emotional, historical, or sentimental attachments to time spent with you, bequests are the way to go. If you have an executor in your will that you trust implicitly (and I sincerely hope that this is the case) then you can leave bequests in a list in the same folder or file as your will. Like jewellery and family keepsakes, bequests from your stash do not have to be exhaustively listed in your will - unless of course that is what you wish to do - so write or type out your list and be sure it is easy for your executor to find.
Advance planning for your own stash and collections can ease the burden on your executor, as well as help side-step deeply personal information being passed onto those you don't wish to include in your intimate private life. For example, I do recommend that if your physical limitations preclude you from cleaning up after sex that you negotiate this task with your partner, or a good friend you trust implicitly. A little forward planning can ensure no awkward questions are forthcoming, and confidentiality may be maintained.
People with disabilities at end of life have a double-whammy when it comes to sex...
People who live with a disability also live with erroneous and widespread generalised assumptions that they do not experience sexual desire, or are not interested in pleasure or sex - the opposite is, however, generally the case. When a terminal or life-limiting diagnosis comes into play the stigma around sex and disability gains even more layers and intersections, and one sensible solution (if affordable for a client) is to engage the services of a sex worker who is disability-friendly.
A wonderful organisation called Touching Base Inc. in Sydney helps put sex workers and clients together, as well as training health workers in how to have appropriate conversations with clients regarding sexual needs, their rights, and information about combating stigma regarding sex work, disability, and sexuality. Resources are available for download, donations can be made, and sex workers are encouraged to become part of the network if working with people who have a disability is a good fit for their service set. For Touching Base, education is a cornerstone of their work and community building - this organisation is well worth supporting and including in all discussions around choices for people living with disability/ies.
Grief and sex - it's personal
As regular Gentle Readers are aware, I am an advocate for allowing everyone their own pace of grief and mourning (provided someone is not profoundly depressed or non-functional, this is a different thing altogether), and I am certainly not ever going to judge the way that some of us mourn. Sex at a funeral? It happens - some of us like to really reaffirm life in a visceral and tangible way and sex is one way to achieve that affirmation. I do recommend that you are discreet and respectful in your sex - and please do not use the disabled toilet! There may well be a disabled person in genuine need, so either book a hotel room in advance, or go to one near the funeral venue. I suggest a hotel as hotels offer a level of safety that your own home may not, especially if you are looking for an anonymous encounter, or end up with someone you do not know that well. Safety first, even with grief sex.
If you want to have an extravagantly expensive intimate and personal memorial object created from the ashes of your loved one, try the 21 Grams dildo. Based on the apocryphal notion that the 'soul' of a person weighing 21gm and the body losing that much weight upon death, this expensive memorial box takes 3 months to create and includes places for a phone, engagement or wedding ring, perfume/cologne, and a 'metaphorical' dildo-shaped object that contains 21gm of ashes in a 18 carat gold inset. The key is a stylised profile of the husband - according to the creator, this entire idea is gendered and designed for widows, however, I do not see any reason why men could not order one for themselves if desired. The Dutch designer offers a starting figure of just under $10K if you are interested in acquiring one for yourself.
N.B.: Try not to think it is weird or unusual if someone wants alone time with the body of their loved one just after death - there is a pretty good chance that apart from saying some literal last words, there may be a strong desire for the final connection of intimate bodily touch or a last lingering look at all of their body. We are intensely physical creatures, so the longing to extend and savour a tangible physical connection should not come as a surprise to us.
Want to know more about sex, end of life, and advance planning?
Please do not hesitate to get in touch with me - I am kink-friendly, an LBGTIQA+ ally and safe space for all clients. I am happy to help you plan your end of life, gain a strong understanding of the possibilities, rights, and choices open to you at end of life, and I am a very good listener.
For those who are at end of life and need help with removing sex stash toys, equipment and other personal materials from their home please email me at firstname.lastname@example.org - I offer a confidential and discrete professional purging service.