Why Death Doulas Can Be Especially Necessary for Folks in the LGBTQ+ Community

By Gabrielle Kassel

According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.

Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.

Death doula, defined

Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.

The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.

While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.

How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces

Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.

For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.

In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.

Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.

In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.

Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family

In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)

Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.

That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.

For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.

Why death doulas for the queer community need to be queer or queer-informed

Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.

As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”

It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.

To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.

Complete Article HERE!

My Dead Husband Is Haunting My Sex Life

I’m frustrated as hell.

By Jessica Stoya

I’m a woman whose husband died a few years ago. It was very traumatic, as he died at a relatively young age, and we had been extremely close and very much in love. I still have a strong sex drive but had no interest in dating for the first couple of years. It’s only been recently that I’ve been thinking about dipping my little toe back into dating.< Like all widows, I have dreams about my late hubby. I’m also a person who sometimes has pretty vivid sexual dreams. Unfortunately, I’ve been getting a highly uncomfortable blend of these dreams. Basically, any time since hubby died, if I start having a hot sex dream about another man—bing! hubby appears in the dream, and I can’t go through with it because, well, he’s right there, damn it. He’s pretty much cockblocking (or pussyblocking) me every time. Last night, I was having a super hot dream, and there he was, right on schedule. I remember telling someone in the dream he was my ex-husband, not my husband, so I think on some level I’m trying to detach from him. But I definitely never get to the point in the dreams of saying, “Look, I love you and all, but you’re dead. Can you step out, dude? I got this thang going on.”

I haven’t scattered hubby’s ashes yet. The plan was to do it last year, but then COVID. The place he wanted to be involves at least a long weekend, a couple of daylong drives, and an ocean trip. I’ve got the money and the time now and am hoping my state opens up enough that I can make it happen within the next few months. I’m thinking that might bring some final closure of some kind. Any advice on how to deal with it in the meantime, though? I wake up from these dreams frustrated as hell.
—Horny and Haunted

Dear Horny and Haunted,

I hope your instinct that scattering his ashes will help provide closure proves correct, and that you’re able to do so soon. You might also imagine scattering his ashes and saying goodbye now. Think about the place you’ll release them—what it looks like, what it will smell like, whether there will be wind. Spend some serious time fleshing out the image in your mind. Rehearse what you’ll say, if that’s part of the ritual, and listen to and acknowledge your feelings as they come up. Another thought journey that might help is imagining what you wish you’d said to him in the dreams. You seem like you have a clear idea of what you wanted to express. Maybe writing it out or imagining him in front of you as you speak could help.

As for the dreams themselves, are you able to remind yourself of where you are in your timeline and able to choose who you’re thinking about? If so, when you wake up frustrated, masturbation with conscious control of your thoughts might help resolve your arousal. If your thoughts keep drifting to your husband when you’re awake, take a deep breath and return them to where you want them. The trick to this is repetition—you’ll likely need to refocus multiple times, and calmly doing so rather than getting frustrated is the goal. Meditation outside of masturbation time can help train this skill.

Regardless, grief is one of the most difficult things we live through. It’s a process, and it may always be with you in some way. Be kind to yourself, and when you feel like you need a distraction, go for it.

Complete Article HERE!

Falling in Love While Navigating Grief

Caitlin Fitzmaurice and Richard Thompson met a few months after Ms. Fitzmaurice’s mother died. Their relationship soon became a reminder that joy can be found amid sorrow.

By Emma Grillo

During their first date, at a gallery in Manhattan in November 2019, Caitlin Wynne Fitzmaurice and Richard Lathen Thompson broached the topic of grief. They had matched on the dating app Hinge a week earlier and at the gallery, Ms. Fitzmaurice mentioned that she was from California. When Mr. Thompson asked if she went back often, she answered honestly — her mother had died from cancer eight weeks earlier, and she had spent the three years before her death going back and forth between New York and California in order to spend time with her.

Ms. Fitzmaurice wasn’t sure how Mr. Thompson would react, and was surprised when he told her that he had lost his father to cancer. He shared how hard it was for him when his father died, and how sorry he was for her loss.

“He didn’t nod away from it,” Ms. Fitzmaurice, 35, said. “Right away I appreciated that he didn’t change the subject.”

Mr. Thompson, 37, suggested that they continue their date at a restaurant nearby, and over tapas they learned how much they had in common. They both studied French in college and taught English abroad after graduation.

“Pretty early on I was like, Oh, wow, this guy is definitely someone I want to see again,” Ms. Fitzmaurice said.

The next night they both left work early to meet up for drinks in Greenwich Village, and kept in touch when Ms. Fitzmaurice went back to California for a week to spend Thanksgiving with her family. When she returned, Mr. Thompson helped her carry a Christmas tree up to her apartment. A month later, he helped her carry it down to the curb, much to the chagrin of her superintendent, who was not impressed with the amount of dead pine needles they tracked through the lobby.

“The pine needles exploded over everything,” Mr. Thompson said. He helped Ms. Fitzmaurice clean up the elevator and lobby, which only confirmed her suspicion that he was “a good guy.”

In January 2020, Ms. Fitzmaurice was planning to return to California to attend a memorial ceremony for her mother. Even though they had only been dating for about two months, she asked Mr. Thompson to come to the service with her.

“Having gone through this process of grieving with my own father, I just knew that it was really helpful to have the support of someone close to you through this process,” Mr. Thompson said. “Whether or not we were gonna be life partners or just friends, I knew I wanted to be there for her for this difficult moment. It was a huge step, and I’m really glad I did.”

The service was a bonding experience for the couple, and their budding relationship was a welcome source of hope for Ms. Fitzmaurice’s friends and family.

“Nothing would have made my mom happier than for me to have a partner at the service,” Ms. Fitzmaurice said. “To have him at the service was a really hopeful thought for our family and friends, to see that life continues on, and there can be a lot of joy along with sorrow.”

After the ceremony, the couple returned to New York and planned a ski vacation in Salt Lake City in early March 2020, but just as they arrived, ski resorts began to shut down because of the coronavirus. Mr. Thompson suggested they spend a few weeks with his family in Kansas City before returning to New York. Weeks turned into months, and the couple relished the time they got to spend living with Mr. Thompson’s family in his childhood home.

Ms. Fitzmaurice, who is the senior director of culture for ViacomCBS in New York, moved back to New York in August, where she is currently pursing an M.B.A. at Columbia. Mr. Thompson, who is a senior associate for the Federal Reserve Bank of New York, returned in September, and moved into Ms. Fitzmaurice’s apartment a few weeks later. In November 2020 he proposed to Ms. Fitzmaurice in front of a socially distanced group of friends and a live jazz band in Central Park.

“She makes me feel really fulfilled through her vulnerability and affection,” Mr. Thompson said about Ms. Fitzmaurice, who plans to take Mr. Thompson’s last name. “She’s got a lot of grace and optimism that I really cherish.”

The couple were married on May 27 at Hamel Family Wines, a winery in Sonoma, Calif., before 12 family members. Dr. Erin Rhae Biller, a minister with the Universal Life Church, a naturopathic doctor and a friend of the family who cared for Ms. Fitzmaurice’s mother when she died, officiated.

Complete Article HERE!

What Is It Like to Be Dying?

In “Documenting Death,” a couple who work in palliative care take to social media to share their experiences after one of them receives a terminal diagnosis.

Complete Article And Video HERE!

How do relationships change through the Alzheimer’s disease journey?

Changes do occur in many aspects of relationships between the affected person and his or her caregiver during the course of the disease. These changes, however, do not diminish a person’s need for love and affection.

The loss of companionship is perhaps the initial beginning of relationship changes. The caregiver, now assuming a caregiver role, misses the opportunities for intellectual conversation and misses that person who was a “sounding board” for any problems that arose or decisions that had to be made.

The person affected may have always taken care of the family’s finances, but as the disease progresses, the caregiver must learn to make all the decisions of financial and legal matters, which can be challenging and difficult for someone already overwhelmed. Some caregivers get help from a financial adviser to assist in these meticulous tasks and decisions.

Alzheimer’s disease affects the sexual relationship between partners, too. The affected person may exhibit hypersexuality, putting demands on the caregiver and, at times, be overly affectionate at the wrong time or place. On the other hand, interest in sex may wane or decrease, and the caregiver soon misses that loss of intimacy. Yet, there can be intimacy without sexual relations. Cuddling, dancing, enjoying moments together holding hands, gentle massages are all ways of experiencing intimacy and ways to satisfy the needs of both the affected person and the caregiver.

The caregiver should try to be honest with his or her feelings regarding these relationship changes and to find ways to express them, whether it be through talking with close friends or by joining a support group.

Relationships with family and friends sometimes change drastically. Often family and friends are intimidated or are uneasy around someone with Alzheimer’s. They don’t know how to communicate with them and may feel threatened by his or her behaviors.

The caregiver can become just as isolated as his or her loved one. The caregiver should contact family and friends and share the loved one’s condition, with tips on communicating and ways they can visit in a nonthreatening manner.

The caregiver should encourage visits with family and friends for the sake of their loved one and themselves.

Complete Article HERE!

My Mom Died 2 Years Ago

…And My Grief Killed My Sex Drive

I never knew your mental health could so heavily dictate how you feel about sex. When I was a teenager and in my early 20s, I never thought my sex drive could be “turned off.” I had a constant interest and energy and was always finding new ways to get high off of love. Fast-forward to just a few years later, and I can’t seem to get high off of anything. The confidence I once felt about putting myself out there has been replaced with fear, and the fun and excitement I once felt about dating has been replaced with me deleting dating apps just to avoid people. A lot of this has to do with the grief I’ve felt after the tragic loss of my mother in 2018. Since then, I can count on less than one hand the people I’ve sought sexual comfort in. Nothing and nobody could make me feel better.

When I lost my mom, I lost something I was able to attach myself to. I constantly found myself in this battle between “Am I getting over this too fast?” and “Am I not moving on fast enough?” While some can work through this by finding love and comfort in someone else’s arms, there are many others, like me, who can’t seem to get far enough away from potential partners.

Yes, I miss connection, intimacy, and touch, but until I get the green light from my body and mind, I will continue to protect my sexual well-being.

After a loss, it’s easy to feel like you’re not enough. You become a different person from who you were before your grief. You no longer see yourself as you once were, and trying to navigate this new normal is incredibly challenging. At least that’s what happened to me.

My depression and anxiety kicked in almost as soon as my grief did. Because depression can change the chemical makeup in our brains, people dealing with it can be less likely to have a libido. The tiredness that comes along with it can take away all energy for intimacy. And because depression is a lonely experience, I’ve found it nearly impossible to connect with people in that way. Grief can also make people feel like they’ve lost their sense of control and make them worry about what else they could lose in the future. You can become so focused on trying to move forward that you’re blind to things that might make you feel good. And many times you don’t think you deserve to feel good because you’ve lost something that can never be replaced. This is even worse when you’re in the denial phase of your grief.

It’s been two years since my mom passed, and I’m still working through my grief.

I always fear that my mom is looking at all of the decisions I’m making and shaking her head at them. That shame sometimes prevents me from wanting to be intimate with someone. I’ve had a hard time reconciling with the fact that when someone’s gone, they’re gone and not watching my every move. I know I should be thinking that my mother would be happy that I’m trying to move on and get back to my new normal — which includes having a healthy sex life — but I’m just not there yet.

During sex, we open ourselves up on a physical level while also being extremely vulnerable on an energetic and emotional level. When you’re depressed, anxious, and grieving, it’s hard to open up at all. From my experience, it’s almost harder to have a casual hookup with someone you don’t know much about. Although some may say the opposite, I think waiting to have sex with someone you’re truly comfortable with is better than trying to fill a void.

I know the more I practice being present with myself and my feelings, the better my emotional state will be. Introducing more self-care routines like exercise, rest, and moments to myself will help with the healing process. But one thing I won’t do is blame myself or tell myself I’m unlovable. Yes, I miss connection, intimacy, and touch, but until I get the green light from my body and mind, I will continue to protect my sexual well-being. I won’t rush it.

Grief is not a numbers game. Just because there are different steps of grief doesn’t mean that you take all of them in order or are simply done after a set amount of time. My grief is something that I’ll have with me forever. How I choose to let it affect me, though, is up to me. And I’m still figuring that out.

Complete Article HERE!

Poor communication, discrimination and lack of training

– Why LGBT people may face inequalities in palliative care

By

Palliative, or end of life care can help people with terminal conditions, such as cancer, live as well as possible for as long as possible – and allow them to die with dignity. But end of life care is not a straightforward process. And for patients from the LGBT community, the process presents a whole host of barriers that they and their families may face.

Not only do many people from the LGBT community face difficulties accessing high-quality end-of-life care, they also may face issues with their care. This may sometimes be because of ignorance and prejudice against them during pre-hospital admission. It may also be due to poor communication between patients and care providers about treatment plans, judgement by staff about a patient’s family or relationships, and a failure to properly support the spiritual needs of the patient.

Many have also experienced victimisation, discrimination and personal hardship as a result of their sexual identity throughout their life, and may feel that telling a healthcare professional about their sexual identity would change their interactions or quality of treatment.

Staff may also be unaware of an LGBT patient’s particular needs or how to meet them. For example, patients who have undergone gender reassignment may have been married previously in their former gender. They might have children and grandchildren. Dealing with current partners, spouses, former spouses and children during end of life care takes particular skills, which requires specialist training. As many in palliative care want to be surrounded by loved ones, healthcare workers need to be trained to deal with these types of situations.

Many LGBT people may also hide their relationships, meaning that healthcare workers may exclude key individuals from their loved one’s end of life care. Other factors that can impact end of life care include whether an LGBT person lives alone, if they’re socially isolated, and if they face barriers to services or lack consultation. Ageism, and past negative experiences relating to their sexual orientation or gender identity, might also impact the care they receive.

Bereaved LGBT partners and spouses have also been found to experience less support during the death of their loved one. They complained of being shut out of the care process and ignored.

Healthcare professionals also aren’t typically trained to address the specific needs of the LGBT community when it comes to end-of-life care. These needs will include the need for confidentiality and communication from healthcare providers that is sensitive to their sexuality and preferences. Many LGBT people may also feel too vulnerable to disclose their sexual identity while receiving this type of care, which may make their final months lonely.

Room for improvement

Research shows that LGBT people already have lower health outcomes, partly because of ignorance of LGBT issues among healthcare practitioners. For example, they may not receive routine cancer screenings, and may not be able to access adequate healthcare services.

Sexual orientation and gender identity are also both key areas where inequality and discrimination can occur in end of life care. Poor training has been highlighted as one cause.

But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the Human Rights Act 1998. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.

The issues addressed in articles three and eight have been interpreted by the courts as including how a person plans their end of life care. This means there could potentially be legal redress for any person who feels that their wishes and feelings relating to end of life care aren’t being taken into account by the healthcare workers looking after them.

There are two particular aspects of good end of life care that many LGBT people find are most important to them. First, they want their care to focus on their individual needs. Second, they want their partner to be accepted.

Currently, there are recommendations in place for caring for those from the LGBT community in palliative care. In order to ensure that LGBT people receive the best end of life care going forward, it will be important for healthcare workers to have better training.

Better training will ensure they can communicate properly with LGBT people about their needs and understand their situation. Training will need to include understanding equality, diversity and confidentiality, as well as understanding the unique issues LGBT people face and how this impacts end of life care. Staff or other residents should also report any discrimination to prevent it from continuing in the future.

Complete Article HERE!