End-of-life care considerations for LGBTQ older adults with Carey Candrian, PhD

AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.

0:00 AMA Moving Medicine for June 21, 2022
1:04 What disparities affect LGBTQ older adults, specifically?
2:04 What is driving these disparities in LGBTQ older adults?
4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health?
5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care?
8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps?
8:43 What are the drivers of this discrimination?
9:53 What kind of data would be helpful—and how can it best be collected by care providers?
11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults?
13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?

Doctor Who Has Witnessed Hundreds Die Explains How It Feels For Person Dying

It’s one of life’s greatest mysteries – what happens when we die?

By Daisy Phillipson

Although science is yet to figure this out, a palliative care doctor who’s witnessed hundreds of people pass away has drawn on his experience to describe what the dying process looks like.

Answering a reader question on the subject for The Conversation, Seamus Coyle, honorary senior clinical lecturer at the University of Liverpool, said: “As an expert on palliative care, I think there is a process to dying that happens two weeks before we pass.

“During this time, people tend to become less well. They typically struggle to walk and become sleepier – managing to stay awake for shorter and shorter periods. 

“Towards the last days of life, the ability to swallow tablets or consume food and drinks eludes them.

Some people think our brains release a rush of chemicals in our final moments. Credit: Unsplash
Some people think our brains release a rush of chemicals in our final moments.

“It is around this time that we say people are ‘actively dying’, and we usually think this means they have two to three days to live.”

That being said, some people go through this process in just a day, while others continue on for nearly a week, which Coyle said is often distressing for the families.

He explained the actual moment of death is trickier to decipher, adding: “But a yet unpublished study suggests that, as people get closer to death, there is an increase in the body’s stress chemicals.

“For people with cancer, and maybe others, too, inflammatory markers go up. These are the chemicals that increase when the body is fighting an infection.”

One detail he was asked about is whether the last moments of life could be euphoric, perhaps triggered by a flood of endorphins.

Although Coyle couldn’t give a definitive answer as it hasn’t yet been explored, he did point to a 2011 study that showed the levels of the happy hormone serotonin tripled in the brains of six rats as they passed away.

“We can’t rule out the possibility that something similar could happen in humans,” he said.

As for the bit we’re all concerned about – pain – the doctor explained: “In general, it seems like people’s pain declines during the dying process.

“We don’t know why that is – it could be related to endorphins. Again, no research has yet been done on this.”

During his time in palliative care, Coyle has witnessed the full spectrum of deaths, from people who are anxious right up to the end to those who accept their fate early on.

“Ultimately, every death is different – and you can’t predict who is going to have a peaceful death,” he said.

“I think some of those I have seen die didn’t benefit from a rush of feel-good chemicals.

“I can think of a number of younger people in my care, for example, who found it difficult to accept that they were dying. They had young families and never settled during the dying process.

“Those I have seen who may have had an ecstatic experience towards the end of their lives were generally those who somehow embraced death and were at peace with the inevitability of it.”

Complete Article HERE!

Enriching the dying experience

— End-of-life doulas help those who want to personalize their journey

By Nancy Burns-Fusaro

As a master gardener, Noreen Kepple is familiar with the natural cycle of life — with birth and growth, with dying and death. Her next chapter is a natural progression.

“Human beings are part of that cycle,” Kepple said one day last week as she spoke about her work as an end-of-life doula. “I think that’s what led me to end-of-life care.”

Kepple, 70, an early childhood educator by training, spoke recently at Stonington Free Library about her new calling — accompanied by Greta McGugan and her sister-in-law, Lavina Kepple — at a presentation titled “What is an End-of-Life Doula?”

This presentation, designed to discuss a doula’s role in the dying process and share ways doulas enrich the dying experience for patients and their families in non-medical ways, was well-attended and attracted many “brand-new people” to the library, noted Karla Upland, library assistant director.

The Kepples and McGugan, all Stonington residents, completed the certificate program at the University of Vermont’s Larner College of Medicine in 2020, where they studied to become end-of-life doulas. The term, Noreen Kepple said, is becoming more and more popular as members of the baby-boom generation come of age.

Add the pandemic to the mix, she said, and the thousands of people who were forced to die alone in hospitals while separated from family members, and there’s no wonder people have been pondering their own end days and those of their loved ones.

“Most people in this country die in hospitals,” Noreen said. “I think many more of us hope to die at home. … The pandemic underscored the need for people to not die alone. People are thinking about their own deaths and of how they’d like it to be. Dying at home can be a more rewarding process.”

Dying at home, she continued, is also a process that can be guided with help from a trained doula.

The word “doula” — which comes from the Greek word meaning “woman who serves” — is often associated with birthing, babies and new mothers. In the last few years, as more and more people seek to take control of their own dying experiences, it has become also associated with the dying process.

“Birth and death are so similar,” said McGugan, 56, the mother of three adult children and the grandmother of 10 who was present at the births of her grandchildren. “They’re really the same thing.”

An “end-of-life doula,” Noreen Kepple told the 30 people gathered at the library, can also be known as a “care doula,” a “death midwife,” an “end-of-life coach,” a “transition guide,” a “soul midwife” and “many, many others.”

Whatever the name, she said during a phone interview last week, an end-of-life doula is a non-medical companion who offers emotional and sometimes spiritual support to the dying and their families.

“A doula can have many kinds of service,” Noreen Kepple said. “They can help plan a vigil, help with paperwork and legacy projects.”

If someone is a good cook, for instance, Kepple went on, a doula might help organize recipes.

“Some doulas help record oral histories,” she said. “It’s really whatever the client wants.

“It’s important to be present, to be an active listener and to be open-minded.”

“Open minds and open hearts,” said McGugan. “We meet people where they are.”

“Back in the day,” McGugan said, people would have learned about dying at home and probably would have been present at the passing of a grandmother or elder relative, and would have been “holding the hands” of the person passing.

“We weren’t as afraid of death then,” she added. “Today we live in more of a death-denying culture.”

“Our culture has a hard time with death,” said Lavina Kepple, 73, a former schoolteacher who is training to be a hospice volunteer. “Taking the course really helps you look at your attitudes about death and dying.”

One of the books the three women studied while taking the online program through the University of Vermont, Noreen Kepple said, and one she recommends to people interested in learning more about the work of a doula is “Cultivating the Doula Heart: Essentials of Compassionate Care.”

The book was written by Francesca Arnoldy, the program director and course developer at UVM’s doula certificate program.

Arnoldy, who is also a bereavement researcher with the Vermont Conversation Lab, a hospice volunteer and author of “Map of Memory Lane,” said the program has grown exponentially since its inception in 2017.

As more and more people want an “intentional” dying experience, Arnoldy said during a telephone conversation from her home in Vermont one day last week, and choose to “personalize their end of life,” it makes sense that more and more people are enrolling in the eight-week online class, which prepares participants to “meet the growing demand for end-of-life support as people live longer.”

“I just trained nine more people to be instructors,” Arnoldy said of the program, which includes topics like “Dimensions of Grief and Loss,” “Non-Judgmental Support, Acceptance, and Unconditional Positive Regard,” and “Entering Sacred Space.” “And we are already full for this year.”

It’s an intensive course, Arnoldy said, with lots of reading, writing, modules, discussion boards and plenty of support.

“We do lots of sharing,” Arnoldy continued, noting that coursework requires roughly eight to 10 hours of studying a week. “It’s deeply personal … and there’s lots of feedback … lots of support.”

The course is appropriate for all those interested in exploring end-of-life possibilities, she added.

“Everyone has a seat at our table,” Arnoldy said, “although people with fresh grief might want to take time to heal before enrolling.”

“As a doula, I trust in my clients’ inherent wisdom and strength,” Lavina Kepple told the group gathered at the library last month as she read aloud from Arnoldy’s book. “A doula knows that each person is entitled to the completeness that is his or her journey.”

“It’s important to get people aware that doulas are out there,” said Noreen Kepple, who suggested that, in addition to the program at the University of Vermont, people interested in doula work look into an organization called The National End-of-Life Doula Alliance, a nonprofit that “welcomes and supports all end-of-life doulas, trainers, and interested parties, regardless of background or level of experience.”

The three women are already planning their next talk, a training session for the staff at Seniors Helping Seniors in Mystic.

Upland, who organized the sound and livestreaming technology for the Stonington Free Library presentation, has also made it available on the library’s YouTube channel via the library website.

The doula presentation at the library was well-received, Upland said in an email. “The audience was very engaged and attendees expressed interest in either employing an end-of-life doula for a family member, or becoming trained as doulas themselves.

“Many of the questions revolved around locating and engaging local end-of-life doulas for palliative care work,” she said.

Complete Article HERE!

What if hospice services weren’t just for the dying?

By Michael Ollove

Gloria Foster wasn’t ready for hospice, even though, with a prognosis of less than six months to live, she qualified for it. She was debilitated by diabetes and congestive heart failure, and was living with both a pacemaker and a device to help pump blood from her heart to the rest of her body. She also was tethered to an oxygen tank.

But Foster didn’t want to enter hospice, if, as is normally required by Medicare, she would have had to forgo treatments that might, against all odds, reverse the course of her disease.

“Why did I need hospice?” Foster, 73, asked in a phone interview recently from the home she shares with a grandson in Asbury Park, New Jersey. “Hospice is more or less when you’re ready to die. I just wanted to work my way back to doing as much as I could.”

But under a Medicare pilot program that began in 2016, Foster was able, for a time, to receive home care generally available only to hospice patients. Unlike hospice rules that normally govern Medicare, the public health plan for seniors, she wasn’t required to give up treatments for her terminal health conditions.

Still alive long beyond her prognosis, Foster credits the program, which ended for her in December 2019, with stopping her frequent hospitalizations, improving her mobility and greatly boosting her spirits.

“When it came to an end, I was very upset,” she said of the at-home services. “I cried, as a matter of fact.” She said she’s been hospitalized six times since then.

An independent evaluation of the five-year pilot — the Medicare Care Choices Model — recently provided its most robust data so far: The results found that participants were able to stay out of the hospital and live longer at home than a comparison group while also saving Medicare money.

The results were so encouraging that many who work in palliative and hospice care think the study’s conclusions will lead to some of the most important policy changes ever undertaken in the field — and not just for those in Medicare but also for patients with Medicaid, the state-federal health plan for low-income Americans, and for patients with private insurance as well.

Many who work in the field of hospice or palliative care hope the pilot project’s results will be the catalyst for bureaucratic changes that could deliver a raft of traditional hospice and palliative care services to millions more Americans struggling with debilitating chronic disease, whether imminently terminal or not.

The changes they would like to see include permanent removal of the requirement that patients give up curative treatments to access hospice-style benefits. Many also hope Medicare, Medicaid and private insurers will reexamine the requirement that home-based comprehensive palliative care services be provided only to those with a prognosis of six months or less to live. That denies many with serious chronic health conditions services they say would be beneficial and might also cost less, in part by keeping patients out of hospitals.

“This is a huge deal,” said Edo Banach, president of the National Hospital and Palliative Care Organization, which represents hospice and palliative care providers, and was among those who lobbied the U.S. Centers on Medicare and Medicaid Services, known as CMS, to undertake the pilot.

Hospice has evolved

When Congress created a Medicare hospice benefit in 1982, lawmakers and advocates mainly were focused on cancer. At that time, when treatments for cancer patients proved ineffective, the trajectory toward death often seemed clear. Hospice care was seen as an alternative to heroic but also, for patients, often agonizing measures to keep people alive at all costs.

Hospice switched the health care emphasis to symptom relief while enabling dying patients to use their remaining time in as fulfilling a way as possible by, for instance, spending time with family or simply sitting outside on a pleasant day.

But since 1982, cancer treatments have dramatically improved, extending lives, while higher percentages of Americans are dying of diseases other than cancer, particularly of illnesses related to dementia and respiratory illnesses such as chronic obstructive pulmonary disease, known as COPD.

And, as with many cancers today, the timetables of those diseases are less predictable.

“Six months for a patient with COPD isn’t realistic, because the trajectory of the disease isn’t the same as cancer,” said Susan Lloyd, CEO of Delaware Hospice, which participated in the pilot. “Even cancer is more chronic because of better treatments available. There needs to be a change in viewing the time frame to meet where patients actually are today.”

Many advocates and providers think other patients with serious but not necessarily terminal conditions also would benefit from a full array of palliative care services delivered in the home. The goals of both palliative and hospice care are to relieve symptoms and align medical care with the patient’s wishes and values. The main difference is the terminal prognosis in hospice.

CMS said it plans to issue a final report on the pilot early next year that will include data from the most recent report as well as qualitative results from interviews with participants, their families and providers.

Advocates hope that the latest data ultimately will result in changes that would enable many more Americans to receive full palliative care services at home, including those unwilling to give up on their disease treatments.

The pilot “opened up an avenue for so many more people to enter the program without having to admit, ‘My God, this is the end of my life,’” said Dr. Marianne Holler, chief medical officer at the VNA Health Group, which participated in the Medicare pilot and provides hospice services in Ohio and New Jersey. Foster was one of the group’s patients.

“Patients should not have to pick Column A or Column B at the end of their lives,” Holler said.

Holler and other providers said the pilot’s results demonstrate the cost-effectiveness of hospice care and argue for rules changes on eligibility and reimbursement.

Fewer hospitalizations

The pilot followed 4,574 participants from January 2016 through September 2020. They were entitled to services identical to — with some exceptions — those typically available with the Medicare hospice benefit. The project sought to answer whether participation would improve patients’ quality of life, increase election of the full hospice benefit and lower overall Medicare expenditures.

Among the findings:

— Compared with a control group not enrolled in the pilot, participants required less intensive medical interventions. For example, they had 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays. They also spent 38% fewer days in an inpatient intensive care unit and 30% fewer days in other inpatient hospital units.

— A large majority of participants — 83% — made the transition to the traditional Medicare hospice benefit. Participants were nearly 30% more likely than nonparticipants to elect the Medicare hospice benefit before death.

— Participants were less likely to receive aggressive life-prolonging treatments in the last 30 days of life than their counterparts. They also were able to spend about six more days at home than those in the comparison group.

— As a result of all the findings above, Medicare expenditures for participants were 17% lower than for nonparticipants. The savings were even greater for those who lived less than six months after entering the pilot.

“When you give people more choice and greater freedom to make choices in their best interests, they make decisions that are better for them in terms of quality of care but better for the country in terms of costs,” Banach said. “The demo worked.”

The pilot waived a key requirement of Medicare’s hospice benefit: Patients weren’t forced to forgo treatments of their terminal conditions, such as chemotherapy, immunotherapy and radiation, intended to promote recovery or even a cure.

The pilot was open only to those with one of four diagnoses: cancer, chronic obstructive pulmonary disease, congestive heart failure or HIV/AIDS. To be eligible, people still needed to have received a prognosis of six months or less.

Once deemed eligible, patients could receive traditional hospice services in their homes, delivered by a multidisciplinary team of doctors, nurses, counselors, social workers and chaplains.

The services they received were similar to those provided under the Medicare hospice benefit: case management and care coordination, around-the-clock access to their hospice team, counseling services and symptom management.

The pilot did not cover some services that are part of the traditional Medicare hospice benefit, such as in-patient respite care, a care aide in the home and coverage for durable medical equipment, such as hospital beds.

Before she joined the pilot in 2017, Shirley Klionsky, 91, of Marlboro, New Jersey, recalled, “It was hard. Something was always going wrong, and I was always going to the hospital.”

That ended during the pilot, thanks to the hospice team’s weekly visits and monitoring of her advanced lung and heart disease. “It was the best thing I could have done,” she said.

Klionsky wouldn’t have entered the program if it had meant giving up the treatments for her disease. Hospice wasn’t for her.

“That would have meant dying,” she insisted, “and I said no to that.”

Complete Article HERE!

Facing death

— A medical student experiences the first death of a patient

By

Every medical student has felt apprehensive about facing death at some point, right? Maybe you have experienced someone dying before, or maybe it is something you have never seen and only rarely contemplated. Regardless, there is a subtle tension lurking during your first two years of pre-clinical studies, during which disease and death are intellectualized and abstract. Then clerkships start. Working throughout the hospital, you feel that death is lurking just around the corner. It is palpable. It is hearing a code blue being called on the overhead speaker. It is entering the room of a comatose patient who is technically “alive” but not truly “living.” Whatever one’s experience has been with death, I am confident I am not alone in having felt apprehension and anxiety towards the idea of watching a patient die for the first time.

I managed to get through half of my third year without even being near a patient who died. As I began my rotation in trauma surgery, my anxiety about the experience had evolved into dread. I was certain that whenever I did finally see someone die, it would surely result in panic. In a weird way, I wanted to just get it over with. I could hear one of my professors saying, “We all go through it, it is best just to rip the band-aid off.” As it happened, on just my second night of trauma surgery, a level 1 rolled into the bay. Five gunshot wounds – one to the arm, one to the leg, three to the abdomen. He was in and out of consciousness by the time he got to us. When he was able to speak, he only sputtered out short phrases about being scared. In almost no time, he was sedated, intubated and on his way to the OR. We scrubbed in as fast as we could.

The operation lasted five hours, but it felt much longer. For the most part, it never really looked good. His bowels were shredded from bullet fragments and every time we closed one bleeding artery, we found another. It seemed no amount of epinephrine or fluids could keep his blood pressure up. About two hours into the operation, he coded. The attending surgeon barked an order at me and I started doing chest compressions. They defibrillated him. He still had no pulse. Back to compressions. I felt the crunch of his ribs fracturing beneath my palms. My face shield fogged up from my own labored breathing and I felt sweat building up in my skin-tight surgical gloves.

“This is it, this is the first patient I will see die.” The thought crept into my head for a split second, but there was no time for those thoughts or feelings — I had to do more compressions and another shock. Suddenly, he had a pulse! A brief wave of relief came over me. We operated for another hour, but despite our efforts, his pulse continued to become slower and weaker with each passing minute. Eventually, we found a hole in his aorta and it became clear to everyone in the room that there was likely no way to prevent this man’s death. Yet, we recognized the importance of striving towards the one-in-a-million chance to save a life; so, we continued to work.

But after another hour, the surgeon received a call. A child had fallen from a tree and required the team’s attention in the operating room across the hall. There was no longer the time or resources to work toward that minuscule chance of survival for the person on the table in front of us. The surgeon called off compressions. We stopped plugging holes, most of which at this point had little blood left to spurt out. Most of the team ripped off their surgical gowns and hurried off to start the routine over again next door. Suddenly, the only people in the room were me, an intern, a nurse and this man on his literal death bed.

His heart was barely beating, a mere technicality keeping him alive for a few more moments. My job was to keep my hand on his aorta and notify the surgeon when there was no longer a pulse so he could call the time of death. All of the monitors had been turned off and the room was silent. I held the now deflated tube of tissue between my fingers, closely focusing to detect the weak, irregular pulsations coming from a desperately failing heart.

Now, there was much more time and space for that dreaded thought to creep in. Surely, this is when I would recognize the reality of the situation and panic from the experience of witnessing death so intimately. Yet surprisingly, fear and dread were hardly present. Rather, I was simply sad. I was sad for this man I knew nothing about whose life was violently cut short. I was sad for his friends and family. At the same time, however, I was proud. I was proud to be feeling for this dying stranger rather than wrapped up in my own anxieties about death. More importantly, I was proud to have been part of what felt like the best effort possible to save this man’s life. My thoughts were interrupted when I recognized the stillness of the aorta. It was over. The surgeon came back to call the time of death and we sutured his wounds as neatly as we could. Even throughout this routine, I felt the gravity of the task at hand. My sense of pride persisted, knowing that we were still working hard to make the coming experience for his loved ones at least slightly less traumatic.

What made facing death more tolerable that day was the efforts made along the way. Feeling powerless is perhaps the most overwhelming aspect of death. But it is now abundantly clear that small efforts in the world of medicine provide a certain sense of empowerment and peace even in the face of horrific and inescapable outcomes. What I will remember from my first death is that we worked to provide a fighting chance and maybe even some eventual comfort to his loved ones. Efforts like these provide clinicians hope for a better outcome next time or, at least, help a family find some peace knowing that everything possible was done. They preserve patients’ dignity in both life and death. Now, I am sure that feelings like fear and anxiety will oscillate throughout my career — after all, medicine is imperfect, things go wrong and people suffer despite our best efforts. I recognize now, however, that the best way to combat our sense of powerlessness when facing outcomes that are out of our control is to appreciate the small differences we are able to make. Ultimately, these seemingly-minimal differences give medicine its meaning, make the hard times more tolerable and, more broadly, make this a field I am proud and confident to be joining.

Complete Article HERE!

Advance directives: A new look at future health care wishes

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment.

By Gloria Brigham, EdM, MN, RN

As highlighted during the COVID-19 pandemic, individuals have preferences about their life and future. These preferences arise from values, cultural norms, knowledge and available information. They are influenced by past experiences and the consequences of previous decisions. Periodically, preferences change.

Health care planning for the future is important to ensure that your wishes are known and followed when you are unable to speak for yourself. Sharing what matters to you most (in writing) is one way to clearly communicate with loved ones and health care providers.

What is an advance directive?

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment. It is valid from the time of completion until the end of life. In Washington state, there are two types of advance directive that can be completed by adults 18 and older:

  • Durable power of attorney for health care – The durable power of attorney for health care is also called a medical power of attorney or health care agent. This is an individual that you choose to make health care decisions (on your behalf) if you are unable to make them for yourself. The health care agent cannot be under 18 years old, your health care provider or an administrator/employee of a health care facility where you receive care or live.
  • Health care directive – A health care directive is also referred to as a living will. This written document includes the type of medical care and treatment that you wish to have near end-of-life, if any. This document informs health care professionals of your preferences in the event of an accident or life-threatening illness when you are unable to speak for yourself.

Who should complete an advance directive?

It is advised that everyone over the age of 18 have an advance directive. The reality is that no one knows when an event might occur that renders us incapable of making our own decisions.

How is an advance directive completed?

Fill out advance directive forms found on the Honoring Choices Pacific Northwest website1. An attorney is not needed for an advance directive. Once your advance directive forms are complete, they are legally valid when notarized or signed by two “disinterested” witnesses. Witnesses must be 18 years of age and cannot be related to you by blood or marriage and cannot be your attending provider or an employee of your provider or the health care facility where you are a patient or receive care.

How is POLST different from an advance directive?

According to the Washington State Medical Association, Portable Orders for Life-Sustaining Treatment (POLST) is a medical order that addresses emergency care wishes for seriously ill individuals. POLST is not for everyone. It is intended for individuals in poor health who want to have the choice not to pursue selected treatments in response to a health emergency2.

Inspiring individuals to complete an advance directive supports individual choice and autonomy regarding personal care preferences at end of life. Once complete, advance directive copies are provided to the people close to you, such as your health care agent, loved ones, and your health care providers. If advance directive changes are necessary, share those changes and provide an updated copy of the advance directive to those that matter to you. For additional information visit www.honoringchoicespnw.org.

Complete Article HERE!

Some people think they would rather die than have help brushing their teeth

– but care is not tragic

‘My personal assistants and I, live life at full speed’ (posed by models).

For disabled people like me, care can be brilliant and has enabled me to experience university, holidays abroad and nights out dancing with pals. There is nothing to pity in that

By

I’ve seen it so many times: the head tilt, the look of concern and sympathy. You would think I had just announced a family bereavement, rather than mentioned that, because of the nature of my disability, I need 24-hour care.

This response is not unusual. The thought of a relatively young person (I’m 27) needing care generates pity like nothing else. Behind the condescension, I suspect there lurks a specific dread: the reminder that, one day, you too could need care. The horror!

The thought of having care workers conjures all sorts of unpleasant images, including the idea of a life cut short and potential unreached. Care, to most people, is the bad thing that happens before you die. But to need care long before it becomes end-of-life-care signifies a failure of youth; the epitome of tragedy.

Well, I’m here to tell you that’s not true. For disabled people like me, care is brilliant, fulfilling and life-enabling. It is so good that lots of us are desperate to receive more of it, instead of wishing that we needed less. The choice is not between a life with care and a life without it, but between a life with care and no life at all.

There is a fundamental misconception about what care entails. People often assume it to be much more clinical than the reality. Yes, my personal assistants (PAs) dress me, wash me and take me to the loo, but they also come shopping with me, cook me tasty dinners and share a pint with me and my friends in the pub. We spend a lot more time laughing (usually at ourselves) than we do thinking about the bathroom (itself the site of much hilarity). Is this really what it looks like to live a tragic life?

The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.

Of course, relying so heavily on a team of care workers has its downsides, from recruitment to managing rotas, to just wanting to be alone sometimes. It’s hard. But life is hard for many people – yet no one would turn to someone who’s just been made redundant, for example, and say: “If I were you, I don’t think I could go on.” Some people seem to think they would rather die than have help brushing their teeth. It truly boggles the mind.

Many fail to see the possibilities that care creates – not to mention the friendships that flourish within the care relationship. My PAs, past and present, are some of my best friends – but even this sentiment can give rise to unwanted sympathies. People assume it means I can’t make friends elsewhere (for the record: also not true). My PAs are my friends not because they have to be but because we like each other. And because the bonds of trust, understanding and a shared lived experience are incredibly strong; often, they are the only ones who really see the effect inaccessibility and ableism have on my life.

Receiving care is anything but a tragedy. My PAs and I, live life at full speed. I defy anyone to look at us – really look at us – dancing round the kitchen or popping out for dinner, and feel sorry for us.

Complete Article HERE!