When Family Caregivers Become Family Historians

When Family Caregivers Become Family Historians

When your mom or dad is coping with dementia, it can be difficult watching them lose their grip on old memories. After all, losing our memories means losing a part of ourselves. In the same way, memory plays a key role in our ability to hold onto those we love. When we keep memories of someone, that person is with us so long as those memories are kept alive.

To preserve their loved one’s memories, many children of those with dementia take on the role not just of family caregiver, but also of family historian. These caregivers take it upon themselves to act as memory caretakers for their parents, making a dedicated effort to record, research, and preserve their loved ones’ personal histories.

As a family caregiver, becoming the historian of your loved one’s life is often a therapeutic experience. In documenting your mom or dad’s memories and personal history, you’ll be creating a record of your loved one for yourself, for your family, and for future generations. Even more important, you’ll be creating a dementia care tool that could prove invaluable as your loved one’s condition progresses.

Why Record Your Loved One’s Memories?

There are many reasons to begin recording and researching your loved one’s memories and personal history. As your loved one’s child, the record you create will help you preserve your own memory of your mom or dad. You may find yourself developing deeper understanding of how your loved one became the person you know and love. This record will also give your children, your grandchildren, and future generations a window into their family history.

But of everyone in your family, no one stands to benefit as much as your mom or dad themselves. Dementia care professionals have found that “reminiscence therapy” can help those with dementia access old memories more easily. This type of dementia care therapy uses prompts from a person’s past to trigger memories from their younger years.

By recording and researching your loved one’s past, you aren’t just recording your loved one’s story. You’re also building a memory bank to use in dementia care. As your loved one’s dementia progresses, these prompts could prove vital to accessing your loved one’s old memories.

Getting Started as a Caregiver-Historian

Dementia care professionals who practice reminiscence therapy recommend speaking with your loved one about their early life in an effort to prompt old memories. Avoid asking broad questions like “Tell me about your childhood.” Instead, try asking specific questions, like “What kind of food did you eat every Christmas dinner?” These questions often spark vivid recollections, leading your loved one to uncover cherished memories.

As your loved one shares these memories, you will want to record or document them. Dementia care specialists recommend making audio or video recordings, but only if your loved one is comfortable doing so. In cases where you are unable to record your loved one’s answers, it is best to write detailed notes following your conversation.

While most memories you record will be stories, it’s important to remember that sensations are often our most powerful memories. When we touch, smell, see, taste, or hear something familiar, it brings memories associated with that sensation flooding back. Dementia care experts say these are some of the most effective prompts for triggering memories.

Once you’ve collected a substantial number of memory prompts, you can incorporate these prompts into dementia care. Some of the ways you can trigger old memories include:

  • Playing recordings of your parent recalling their memories in their own words.
  • Enjoying favorite movies and music from their childhood.
  • Making old family recipes they enjoyed in their younger years.
  • Reading old letters from family and friends.
  • Going over old photos or spending time with family heirlooms.
  • Visiting locations from where they grew up.

Further Research

Many family caregivers turn the recording of their loved one’s personal history into a kind of passion project. You may also wish to speak with your loved one’s friends and family members, particularly those who were there for your loved one’s childhood.

You might also want to expand your research to the internet, newspaper archives, and historical records. This way, you can collect images, audio files, videos, and artifacts from the period when your mom or dad was growing up. Often, you can incorporate these items into reminiscence therapy. Some dementia care facilities have even taken to decorating rooms with antique furniture, period advertisements, and other historical items.

As dementia progresses, you might find it becomes harder and harder to spend time on collecting and recording memories. For caregivers who find this work emotionally therapeutic, this can be especially troubling. When this happens, dementia care services can provide you with the respite and support you need to continue recording and preserving your loved one’s personal history.

A surprisingly good place to die

A surprisingly good place to die

A campaigning doctor has helped make Mongolia a better place to die than many much wealthier nations. Andrew North met her to find out how.

What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.

One thing you might not think of is ‘a good place to die’. Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.

In a 2015 survey of global palliative care, the UK comes top, Australia second and the USA ninth. And while the richest Western nations lead the pack, Mongolia appears notably high up, especially considering that it’s well down the economic rankings. (It comes 28th in the palliative care survey but ranks 141st for gross national income (GNI) per capita.)

In fact, when it comes to palliative care, Mongolia is performing far better than any comparable economy, and is ahead of several European states with much more developed healthcare systems and greater spending power, including Greece, Hungary and Lithuania. It also eclipses several big economies, including its two giant neighbours, Russia and China.                                                          

In little more than a decade, Mongolia’s approach to palliative care has become a shining example of doing more with less. But how?

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A ribbon of snow marks the dark hilltops from an overcast sky. The wind bites at the canvas folds of the Tumurbat family ger, their dome-tented dwelling. A few lambs – almost fully grown, too late to be sold – huddle together in a wooden pen nearby, the remnants of a once 100-strong flock. As his aunt and two doctors come into the yard, 18-year-old Dorj Tumurbat stands by the gate, foot up on a kennel. The dog jumps for the visitors, held back by its chain. But Dorj stays put, not even turning his head as they cross the yard and then duck inside the ger. Inside, his father is dying.

Tumurbat Dashkhuu has late-stage liver cancer. Although his illness is incurable, there is something the physicians can do: grant him a death that’s as peaceful as possible.

The materials for making a ger have evolved – canvas is increasingly being used for the outer walls rather than animal hides – but they are still constructed to the same basic design. A typical family ger is built around two central wooden pillars (larger ones have more), symbolising the man and woman of the household in harmony. It is bad manners for any visitor to stand in this central, sacred space.

But when Dr Odontuya Davaasuren and her colleague enter the ger, everything is off balance. Enkhjargal, Tumurbat’s wife, is holding back tears, clutching a sheaf of prescriptions and other medical papers. The stove is going out. A pool of water is collecting on the linoleum floor, spilling from a washing machine on one side of the tent.

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Next to the washing machine is a large fridge-freezer, and wires strung across the tent’s wooden frame lead to a television, DVD player and other electricals. The ger is situated in a capacious fenced compound, with a platform built for a second tent.

The family had been doing well from its livestock business, shifting between the pastures in spring and summer and hunkering down during Mongolia’s harsh winter here on the outskirts of the capital, Ulaanbaatar. But with Tumurbat unable to work, they have had to sell almost all their sheep. Enkhjargal has had to take a part-time job in a local abattoir to make ends meet. Diagnosed late, barely a year ago, Tumurbat’s cancer has upended their lives. And he is in agony.

The light from the doorway picks out his face, which is stiff with pain. He sits back across a bed, leaning on a stack of tightly folded blankets. He rests his hands delicately on the source of his torment, a bloated, fluid-filled abdomen, a typical symptom of late-stage liver cancer.

The comforting evidence of family surrounds him. At one end of his bed there is a large wooden board propped up on a table and tied to one of the ger’s rafters. It’s covered with colour photos of big groups of adults and children. To the side there’s a small altar with a little figure of Buddha on top and several brass water bowls below, part of a Buddhist ritual to ward off negativity.

I fail to find any immediate positives in this example of palliative care in action. Tumurbat struggles even to answer questions from Odontuya and her colleague Dr Solongo Surinaa. “All I want is to be without pain,” he whispers.

Solongo is in charge of palliative care at the nearest district hospital, looking after both in- and outpatients. Odontuya asked her to make this home visit during my trip so I could see how palliative care works for those without medical services on their doorstep.

Mongolia is the least densely populated country in the world, and distance is one of the biggest challenges to delivering any service there, including healthcare. It is just under an hour-and-a-half’s drive from the hospital to Tumurbat’s home, which is in a semi-rural hillside area – though it is still part of the Ulaanbaatar capital city region. (The Ulaanbaatar region – treated as a province in Mongolia – has a population of barely 1.4 million, but covers an area nearly three times that of Greater London and five times that of New York’s five boroughs.)

Tumurbat is being hit by surges of what is called ‘breakthrough pain’, which burst through the 60 mg/day of morphine he has been prescribed. Two weeks earlier, I am told, he had come home from hospital in a stable condition, his pain under control. The oncologists said the best place for him was here with his family. The local clinic would provide outpatient support, including his weekly prescription of morphine tablets – all covered by Mongolia’s national health insurance scheme.

But Tumurbat’s condition has worsened in recent days and, as Odontuya and Solongo learn more, it is clear he and his family have not been sure how to react. Enkhjargal has not bought an additional drug, dexamethasone, that had been prescribed to reduce the inflammation around her husband’s liver and thereby temper the pain.

And crucially, Tumurbat was not aware that he could take additional, so-called PRN doses (from the Latin pro re nata, meaning ‘as the circumstance arises’) of morphine beyond his daily prescription to deal with the surges of breakthrough pain. If he were to go beyond four PRN doses in 24 hours, then his prescription would be recalculated and updated.

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On this visit, Odontuya – the more senior doctor – acts as a trouble shooter, explaining how to respond to the pain surges, gently soothing both Enkhjargal and her husband, and providing an impromptu class in spiritual care, advising her how to prepare for his impending death. Enkhjargal is distraught as the two doctors make to leave. Outside she breaks into sobs and buries herself in Odontuya’s shoulder. It is a moment some doctors would struggle with, but Odontuya lets her cry before gently pulling back, and then, holding her arms, urges Enkhjargal to prepare for the end.

The doctor’s most direct advice concerns Enkhjargal’s son Dorj, who was due to start his military service the following week. The family has to talk to the relevant authorities to delay his enlistment, Odontuya tells them. “It is so important that he is there when his father dies,” she tells me as we drive back, “to avoid complicating his grief.”

Odontuya is more than just a conscientious doctor – she’s also largely responsible for Mongolia’s rapid progress in palliative care. Spurred by her own father’s traumatic death from cancer, she’s made it her life’s work to campaign for better treatment for people with incurable illnesses. And it’s working.

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The treatment Tumurbat and his family are receiving is a long way from what Odontuya was taught when she trained to be a doctor in the late 1970s. Growing up in Mongolia’s socialist years, when the country was a satellite state of the Soviet Union, she studied in what was then Leningrad. She speaks fluent Russian. It was excellent tuition, she says, “but we were told simply to treat patients, not to treat them as people. There was no compassion.”

The way her father died changed her outlook forever. He was diagnosed with lung cancer the same year she began her studies in Russia, and in Mongolia’s health system at the time he was effectively condemned to a painful death. Not only did palliative care not exist, but it was impossible to get hold of morphine or other opioid-based painkillers.

Less than a decade later, her mother-in-law was struck down by liver cancer, and Odontuya says she too died in extreme distress. What she calls the “psychological pain” of witnessing a loved one in such a state affected everyone in her family, she says.

It was a trauma that many more families have gone through since, because of a steady increase in cancers nationwide over the past two decades, especially liver cancer. The underlying cause was Mongolia’s already high incidence of hepatitis ­– dubbed a “silent” hepatitis epidemic by the World Health Organization – which was exacerbated by frequent needle sharing in the poorly resourced socialist healthcare system.

Government policies made things worse, according to Odontuya and other doctors I speak to, by handing out free vodka. In the economic turmoil that followed Mongolia’s independence (after the collapse of the Soviet Union in 1991), the authorities were forced to introduce food rationing. But one thing they had plenty of was vodka, and they added it to every ration. “Each family got two bottles a week,” says Odontuya, shaking her head. “It was a very stupid policy.”

Mongolia was already a country of heavy drinkers, and alcoholism became even more common in those early years of independence. Precisely how much impact this had is hard to determine, but with already high rates of hepatitis infection, Mongolian doctors believe the increase in drinking contributed to the rise in liver cancer.

But it was this same cancer crisis that helped make the case for developing palliative care in Mongolia. Odontuya started lobbying for the introduction of palliative care in earnest from 2000 onwards. But first she had to come up with the right words. “[In Mongolia] we didn’t have any terminology for palliative care,” she tells me as she gives me a tour of the country’s first palliative care ward, established in the early 2000s at Mongolia’s National Cancer Center. Pointing out the sign on the door, she laughs: “If you pronounce it wrong, it can sound like our word for ‘castration’.”

But even with the words fixed, the initial reaction from officials was scorn, she says, as they dismissed palliative care as an “activity for charities”. “They asked how they could justify spending money on ‘dying’ patients, when we don’t have enough money for ‘living’ patients.” She answered with her own question: “Would you say this to your own mother, if she gets cancer or some other incurable condition? And I told them, these are still ‘living’ patients.” Even at the end of life, she says, people have human rights.

None of the former health officials I contacted responded. That Odontuya encountered resistance is hardly unique. Palliative care advocates elsewhere have also faced scepticism regarding its value – as much from medical professionals as from bureaucrats. For instance, one US study reported oncologists being reluctant to refer patients for palliative care because it “will mean the end of cancer treatment and a loss of patients’ hope”.

And for many doctors, palliative care chafes against their default philosophy. As Simon Chapman, Director of Policy and External Affairs for the National Council for Palliative Care, a UK-based umbrella charity for people involved in palliative and end-of-life care, puts it: “There is still a view among many clinicians that [a patient] dying is a professional failure.”

Today, Mongolia still has the highest incidence of liver cancer in the world. Many people are diagnosed late, when the disease is advanced and doctors can do little to stop it spreading.

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The Songino Khairkhan district hospital on the west side of Ulaanbaatar has a solidly Soviet feel. Built in Mongolia’s socialist period, its walls are so thick they look like they would stop a tank. And the signs around the building add to the atmosphere, written in the Cyrillic script the Russians bequeathed the Mongolians.

Behind the locked door of the hospital’s main dispensary for morphine and other opioid painkillers, I am firmly back in the present. There is an air of efficient calm as two staff members work at computers, updating the database on recent prescriptions, while their boss Dr Khandsuren Gongchigav gives me a short tour of their workspace. The security is necessary to meet local and international laws aimed at combating drug abuse, and here they distribute only opioids. There is another pharmacy in the hospital for everything else.

Against one wall is a bulky metal security cabinet, its shelves filled with neat stacks of boxes of tablets. Some contain morphine, the strongest of the opioid family of drugs. It’s used for severe pain, including breakthrough cancer pain, because of its fast and powerful effects. There are other stacks – of tramadol, a less potent opioid for what specialists call moderate to severe pain.

There is a lot more to palliative care than pain relief, but experts agree you can’t have a successful palliative care programme without it. That means having an effective system for distributing opioids, which both meets patients’ needs and satisfies concerns about addiction and abuse. Reforming Mongolia’s approach to morphine was an early priority of Odontuya’s campaign.

Before the government agreed to reforms in the early 2000s, the rules were highly restrictive and counterproductive. Only oncologists were allowed to prescribe opioids and at a maximum of 10 tablets per patient – enough for just two or three days in most cases. As a result, people with cancer often died of “pain shock” when their dose ran out, says Odontuya, leading to a widespread myth that the drugs were killing people. Making morphine more readily available has helped educate patients and doctors about its benefits and reduced what she calls “morphine-phobia”.

Opioid medications still require a special form, as in most countries worldwide. But a much wider range of professionals can now prescribe them, including oncologists and family and palliative care doctors. This has led to a 14-fold increase in their use in the country from 2000 to 2014, according to Mongolian health ministry figures. Khandsuren is an oncologist by training, and now oversees opioid prescriptions for all the hospital’s outpatients. The majority are still people with cancer, but non-cancer patients have become more common. 

Every district hospital in the country now has a pharmacy like this one, allowing patients to visit weekly and get all the medication their doctor has prescribed. Nonetheless, in a country so large and so sparsely populated, that still means long journeys for patients in areas beyond Ulaanbaatar or other towns and cities.

Beyond the store cupboard, Khandsuren shows me into a room where they keep garbage sacks filled with empty blister packs. Patients have to hand over the used strips before they can get their next dose. “We do everything here according to guidelines from the United Nations,” says Khandsuren, referring to rules drawn up by its specialist drugs control agency, the International Narcotics Control Board (INCB).

Mongolia’s achievements have turned it into an example for many middle-income countries struggling with similar health problems but which, for a variety of reasons, maintain much stricter rules on opioid use. Doctors from former socialist states in particular have been coming to Mongolia to learn from its experience, their mutual past ties to Russia giving them a common language and training background.

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The National Cancer Center recently hosted some doctors from Kyrgyzstan, one of the former Soviet states of Central Asia. They remarked on how “peaceful” the palliative care department was, says Dr Munguntsetseg Lamjav, one of the centre’s senior staff. In Kyrgyzstan, she was told, it’s much harder to prescribe morphine and patients are always crying in pain.

One of the most striking contrasts with Mongolia is its giant neighbour Russia. So tight are the rules there on prescribing morphine and other opioids, I learn, that consumption has actually declined in recent years, according to INCB figures.

There is also a tendency among Russian doctors, many still influenced by their Soviet-era training, to see pain as a problem to be endured rather than treated. It is hardly surprising then that palliative care there remains very limited. But one result is frequent horror stories of people with cancer or chronic pain dying by suicide because it is so hard to get effective medication.

In fact, many governments around the world remain nervous about making morphine more available – and with good reason. Take a look at the USA, which has an endemic problem with abuse and addiction to legally prescribed opioid painkillers. But there are far more Americans suffering chronic pain (at least 30 per cent of the population according to one study) than there are drug addicts. It is all about balancing priorities, Odontuya argues. And so far at least, Mongolia’s controls seem to have worked well – its health ministry says there are few reports of people abusing opioid drugs. You hear far more concern about alcohol abuse.

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You don’t have to spend long with Odontuya Davaasuren to realise that she’s not someone who gives up easily. I have rarely met someone as committed to a cause – except perhaps in a warzone. And there is an element of underground insurgency to her campaign, which she has pursued while also holding down a full-time medical teaching job, working as a doctor and juggling family responsibilities.

Her flip-top mobile phone rings constantly, until she switches it off. Sometimes she sees patients in her own home after work. “My husband has got used to me using our front room for consultations,” she says, smiling.

The advocacy and training organisation she established, the Mongolian Palliative Care Society, turns out to be little more than a few filing cabinets and certificates at the back of a basement room in the clinic where she works as a family doctor. The society is an umbrella group of charities and palliative care specialists, including all the country’s hospices. Odontuya is the glue holding it all together. “Sometimes I get very tired,” she tells me one day. “But I don’t think anyone else has the same heart for this.”

It has been a quest of relentless government lobbying, made more complicated by frequent political upheavals. There have been nine different health ministers in the last decade, and for each she says that they have had to go and “convince them about palliative care”.

It is in the cramped basement room that I first meet Odontuya, on a day when she is using the space as a classroom. She is a professor at the country’s premier medical institute, the Mongolian National University of Medical Sciences, and her fourth-year students are here for a session on geriatrics. And she is teaching in English, her third language after Mongolian and Russian.

I feel some pity for the students because the class lasts over three hours, and it is well past the halfway point before Odontuya remembers to give them a short break. Slackers at the back, I note, have no escape. “Why don’t you have any questions?” she demands of a young man who thought he had managed to avoid her gaze. But she is an excellent teacher, and by the end of the class I have learned a lot about diagnosing elderly patients.

Her university work complements her campaigning, because she has also set up a palliative medicine course there. Hundreds of doctors and nurses have now been through the training programme, according to Odontuya – helping to build a nationwide network and reservoir of skills.

She has also built the foundations of a similar international community through her own efforts to educate herself in palliative care. It began in 2001, when she studied palliative medicine in Poland, which was ahead of Mongolia in developing its own hospice network. Today, she is increasingly in demand to provide her own palliative care training, particularly in Russian-speaking former Soviet states. She has recently returned from running a course for doctors in Kyrgyzstan.

For a country that had no palliative care to speak of barely a decade ago, the change has been dramatic. All Mongolia’s 21 provincial hospitals as well as the nine district hospitals in Ulaanbaatar have at least five palliative care beds, as well as individual morphine dispensaries. There is also a network of private and charity-run hospices that provide palliative care around the capital city region. Even Ulaanbaatar’s prison hospital has four beds reserved for terminally ill patients. The national health service now has to provide palliative care by law.

“It is the government that has made the policy,” Odontuya says. “All I have done is advocate.” But I am not surprised to hear from colleagues of hers that I speak to during my visit that she has been dubbed the ‘Mother of Palliative Care in Mongolia’. At the country’s Ministry of Health they agree. “We have learned a lot from her,” says the Director of Medical Services, Dr Amarjargal Yadam.

“In the past, many hospitals turned people away because they were incurable,” Yadam says, speaking for the minister, who was away during my visit. “We still need to make a lot of reforms,” she adds, “but we are listening to the people.” Health is now such a priority, she says, that it is ring-fenced from likely future budget cuts forced by a recent economic downturn.

As Odontuya’s students grab their books and rush gratefully out of the tiny classroom, she switches back into her role as evangelist, showing me the many training manuals from Western medical institutes and international health bodies that she has had translated into Mongolian.

And at a time when she was already a grandmother, that meant learning English from scratch – not just to understand the texts, but also to apply for grants to get them printed. She remembers getting the first email from one of her funders, the Open Society Foundations, and then spending the next day going through it with her English-to-Mongolian dictionary. “There was no Google Translate then,” she says. “This is how I learned English.”

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“I have less pain now” says Batzandan, a 57-year-old film and stage actor with advanced cancer. “But I know I am not getting better.” We are talking at his bedside in the palliative care ward of Mongolia’s National Cancer Center. In the past, he may not have been given the whole picture, but Munguntsetseg, the senior doctor on duty, says Batzandan has been told to prepare for the end. “Our policy now is to give patients the full diagnosis,” she says.

But ‘breaking bad news’, as it is often called, is one of the hardest tasks for any doctor – even more so in a country like Mongolia, where any mention of death has long been a taboo subject. There are also particular beliefs about dying on certain days of the week, I learn. “Tuesdays and Saturdays are bad luck,” Odontuya says, “so if someone is close to death on those days, families put a lot of pressure on doctors to make sure they die the next day.”

As much as possible, they try to work within local traditions and beliefs, not against them, using them to their advantage to put a local face on palliative care. Odontuya often uses a Mongolian proverb in her conversations with patients who are close to the end. It is hard to translate directly, but in essence it speaks of the inevitability of death, and she says it helps “patients to accept the real situation, accept a poor prognosis easily, because it is true that everyone will die someday”.

Traditions from Buddhism – the country’s dominant faith – have also been a help. When someone dies, a lama, or priest, reads from special scriptures, which is known as “the opening of the Golden Box”. The priest can also tell if this person had lived longer or shorter than God intended, explains Odontuya, and “sometimes the lama says [living longer] is because of good medical treatment”.

Back on the palliative care ward, Munguntsetseg says she has seen attitudes to death change since the ward was established. “More patients write a will now,” she says. “They would never have done that in the past because it would be seen as a bad omen.”

The hospital also offers patients what is known as “dignity therapy” – which my interpreter translated as “reputation treatment” – encouraging them to tell their life story before they pass away. It began as a way of dealing with patients suffering severe depression, she says, but then they found that other people wanted to tell their stories, to set the record straight. “We had a patient recently who asked his ex-wife to visit, so he could apologise for his past behaviour, and he gave her money too.”

Some palliative care patients have responded by drawing up ‘bucket lists’. During my visit, I met a woman with terminal cancer who had recently returned from a visit to Lake Baikal (the world’s deepest lake) in Siberia, just the other side of Mongolia’s border with Russia. With her week’s prescription of morphine tablets, she had been able to make a journey that had been “a lifetime ambition”.

Before she studied palliative care, Odontuya says she was a “very closed, quiet person”, adding that if anyone had mentioned spirituality in the past, “I would have thought it was religion”. But a visit to a Polish hospice sparked a “revolution in [her] brain”. Then she understood that palliative care is total care, she says, something that covers “all physical, psychological, spiritual and social pain”.

The idea of palliative care being holistic can be traced back to Cicely Saunders, the British nurse and doctor who established the first hospice in the UK in the 1960s. She came up with the concept of ‘total pain’, arguing that it was as important to address the mental, emotional, spiritual and social aspects of patients’ suffering as it was to treat their physical symptoms.

Odontuya worries that spiritual matters could still be sidelined by the modernising pull of more clinical approaches. “The Ministry of Health and our university do not understand what spirituality, spiritual pain and spiritual care mean,” she says. Still, Saunders’s focus on the spiritual side has been an inspiration for Odontuya.

“She lived in modern society, but she thought like a postmodern person,” Odontuya says. Saunders was also a charismatic campaigner, and Odontuya seems to be taking on her mantle – you can already see the impact she has had in Mongolia. But she modestly ducks the comparison, saying: “I am just her little finger.”

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It is a bright, freezing day in the Mongolian capital. Shards of winter sun reflect off of the nearby crop of glass towers, which sprung up in the city centre during the country’s recent minerals boom.

A small crowd is heading towards a giant statue of Genghis Khan on the far side of a square that is named after him. Some people carry placards in Mongolian exhorting the virtues of palliative care, hunching into their coats as the wind stiffens. These doctors, nurses and hospice staff, as well as their friends and family, have come from across the country to hold a rally to raise awareness, part of World Hospice and Palliative Care Day.

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In the midst of the crowd is Odontuya, alternating between greeting friends and making phone calls to check the journalists she has invited are on their way. “Always I am doing advocacy, advocacy,” she says.

I wouldn’t associate Genghis Khan with palliative care, I think to myself, as I follow them towards the statue of Mongolia’s famously pitiless founding father. But time is a great cleanser of reputations, and now the man Mongolians call Chinggis Khaan is everywhere – even the main airport is named after him. And his is the square in Mongolia you choose if you want your gathering to have maximum impact.

The municipality had turned down her request for a rally, Odontuya says, apparently claiming it was closed for an event. She decided to show up anyway. Apart from a wedding party posing for a photographer, there is no sign of anything else going on. As they approach the statue, a guard sees the placards and TV crew waiting nearby, and holds up a uniformed arm to halt the impromptu collective. “This is not allowed,” he barks.

Odontuya and two colleagues persuade him to compromise. Workers from each hospice take it in turns to line up beneath the statues, laughing and chatting as they hold up their placards for the cameras. Genghis glowers from above.

Photos done, it’s time to head off for a picnic in the hills. We drive up through one of the new suburbs creeping up the hills around Ulaanbaatar, past unfinished developments with names like English Garden and Forbes Mongolia.

The mood is very happy. The care workers laugh at the pretentious names. They laugh at everything. The jokes continue as they unload picnic baskets from the cars and carry on up the hill, past a park filled with concrete gers for tourists.

After lunch, there is music, dancing and games – and then an awards ceremony, with Odontuya handing out prizes for the best hospice and palliative care workers of the year. And then there is a prize and a cake for her too. “We love her,” says one young hospice worker, nodding her head towards Odontuya behind us.

Another hospice worker brings out his guitar and starts up a group song. Odontuya peels away to do a couple of television interviews. That evening all of Mongolia’s main TV channels run a story about palliative care.

Odontuya says that they get together like this every year because the hospices are spread so widely across Ulaanbaatar she may not see some staff for months. “I remember going to visit hospices in China and Singapore,” she says. “They have far more resources than us, but they don’t have this atmosphere. We are poor by comparison, but we love each other. We are a family.”

It is, I realise, a theme that permeates all that Odontuya does. From the personal experiences that put her on the path to becoming Mongolia’s ‘Mother of Palliative Care’, to the way she practises it, ‘family’, in every sense of the word, is a guiding spirit.

After I return from Mongolia, I ask my translator to call Tumurbat Dashkhuu’s family and find out what had happened. He died at home a few weeks after my visit, in his ger, with his family around him. And, after following Odontuya’s advice to postpone his military service, his son Dorj was there too.

 

What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.

One thing you might not think of is ‘a good place to die’. Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.

In a 2015 survey of global palliative care, the UK comes top, Australia second and the USA ninth. And while the richest Western nations lead the pack, Mongolia appears notably high up, especially considering that it’s well down the economic rankings. (It comes 28th in the palliative care survey but ranks 141st for gross national income (GNI) per capita.)

In fact, when it comes to palliative care, Mongolia is performing far better than any comparable economy, and is ahead of several European states with much more developed healthcare systems and greater spending power, including Greece, Hungary and Lithuania. It also eclipses several big economies, including its two giant neighbours, Russia and China.                                                          

In little more than a decade, Mongolia’s approach to palliative care has become a shining example of doing more with less. But how?

§

A ribbon of snow marks the dark hilltops from an overcast sky. The wind bites at the canvas folds of the Tumurbat family ger, their dome-tented dwelling. A few lambs – almost fully grown, too late to be sold – huddle together in a wooden pen nearby, the remnants of a once 100-strong flock. As his aunt and two doctors come into the yard, 18-year-old Dorj Tumurbat stands by the gate, foot up on a kennel. The dog jumps for the visitors, held back by its chain. But Dorj stays put, not even turning his head as they cross the yard and then duck inside the ger. Inside, his father is dying.

Tumurbat Dashkhuu has late-stage liver cancer. Although his illness is incurable, there is something the physicians can do: grant him a death that’s as peaceful as possible.

The materials for making a ger have evolved – canvas is increasingly being used for the outer walls rather than animal hides – but they are still constructed to the same basic design. A typical family ger is built around two central wooden pillars (larger ones have more), symbolising the man and woman of the household in harmony. It is bad manners for any visitor to stand in this central, sacred space.

But when Dr Odontuya Davaasuren and her colleague enter the ger, everything is off balance. Enkhjargal, Tumurbat’s wife, is holding back tears, clutching a sheaf of prescriptions and other medical papers. The stove is going out. A pool of water is collecting on the linoleum floor, spilling from a washing machine on one side of the tent.

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Next to the washing machine is a large fridge-freezer, and wires strung across the tent’s wooden frame lead to a television, DVD player and other electricals. The ger is situated in a capacious fenced compound, with a platform built for a second tent.

The family had been doing well from its livestock business, shifting between the pastures in spring and summer and hunkering down during Mongolia’s harsh winter here on the outskirts of the capital, Ulaanbaatar. But with Tumurbat unable to work, they have had to sell almost all their sheep. Enkhjargal has had to take a part-time job in a local abattoir to make ends meet. Diagnosed late, barely a year ago, Tumurbat’s cancer has upended their lives. And he is in agony.

The light from the doorway picks out his face, which is stiff with pain. He sits back across a bed, leaning on a stack of tightly folded blankets. He rests his hands delicately on the source of his torment, a bloated, fluid-filled abdomen, a typical symptom of late-stage liver cancer.

The comforting evidence of family surrounds him. At one end of his bed there is a large wooden board propped up on a table and tied to one of the ger’s rafters. It’s covered with colour photos of big groups of adults and children. To the side there’s a small altar with a little figure of Buddha on top and several brass water bowls below, part of a Buddhist ritual to ward off negativity.

I fail to find any immediate positives in this example of palliative care in action. Tumurbat struggles even to answer questions from Odontuya and her colleague Dr Solongo Surinaa. “All I want is to be without pain,” he whispers.

Solongo is in charge of palliative care at the nearest district hospital, looking after both in- and outpatients. Odontuya asked her to make this home visit during my trip so I could see how palliative care works for those without medical services on their doorstep.

Mongolia is the least densely populated country in the world, and distance is one of the biggest challenges to delivering any service there, including healthcare. It is just under an hour-and-a-half’s drive from the hospital to Tumurbat’s home, which is in a semi-rural hillside area – though it is still part of the Ulaanbaatar capital city region. (The Ulaanbaatar region – treated as a province in Mongolia – has a population of barely 1.4 million, but covers an area nearly three times that of Greater London and five times that of New York’s five boroughs.)

Tumurbat is being hit by surges of what is called ‘breakthrough pain’, which burst through the 60 mg/day of morphine he has been prescribed. Two weeks earlier, I am told, he had come home from hospital in a stable condition, his pain under control. The oncologists said the best place for him was here with his family. The local clinic would provide outpatient support, including his weekly prescription of morphine tablets – all covered by Mongolia’s national health insurance scheme.

But Tumurbat’s condition has worsened in recent days and, as Odontuya and Solongo learn more, it is clear he and his family have not been sure how to react. Enkhjargal has not bought an additional drug, dexamethasone, that had been prescribed to reduce the inflammation around her husband’s liver and thereby temper the pain.

And crucially, Tumurbat was not aware that he could take additional, so-called PRN doses (from the Latin pro re nata, meaning ‘as the circumstance arises’) of morphine beyond his daily prescription to deal with the surges of breakthrough pain. If he were to go beyond four PRN doses in 24 hours, then his prescription would be recalculated and updated.

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On this visit, Odontuya – the more senior doctor – acts as a trouble shooter, explaining how to respond to the pain surges, gently soothing both Enkhjargal and her husband, and providing an impromptu class in spiritual care, advising her how to prepare for his impending death. Enkhjargal is distraught as the two doctors make to leave. Outside she breaks into sobs and buries herself in Odontuya’s shoulder. It is a moment some doctors would struggle with, but Odontuya lets her cry before gently pulling back, and then, holding her arms, urges Enkhjargal to prepare for the end.

The doctor’s most direct advice concerns Enkhjargal’s son Dorj, who was due to start his military service the following week. The family has to talk to the relevant authorities to delay his enlistment, Odontuya tells them. “It is so important that he is there when his father dies,” she tells me as we drive back, “to avoid complicating his grief.”

Odontuya is more than just a conscientious doctor – she’s also largely responsible for Mongolia’s rapid progress in palliative care. Spurred by her own father’s traumatic death from cancer, she’s made it her life’s work to campaign for better treatment for people with incurable illnesses. And it’s working.

§

The treatment Tumurbat and his family are receiving is a long way from what Odontuya was taught when she trained to be a doctor in the late 1970s. Growing up in Mongolia’s socialist years, when the country was a satellite state of the Soviet Union, she studied in what was then Leningrad. She speaks fluent Russian. It was excellent tuition, she says, “but we were told simply to treat patients, not to treat them as people. There was no compassion.”

The way her father died changed her outlook forever. He was diagnosed with lung cancer the same year she began her studies in Russia, and in Mongolia’s health system at the time he was effectively condemned to a painful death. Not only did palliative care not exist, but it was impossible to get hold of morphine or other opioid-based painkillers.

Less than a decade later, her mother-in-law was struck down by liver cancer, and Odontuya says she too died in extreme distress. What she calls the “psychological pain” of witnessing a loved one in such a state affected everyone in her family, she says.

It was a trauma that many more families have gone through since, because of a steady increase in cancers nationwide over the past two decades, especially liver cancer. The underlying cause was Mongolia’s already high incidence of hepatitis ­– dubbed a “silent” hepatitis epidemic by the World Health Organization – which was exacerbated by frequent needle sharing in the poorly resourced socialist healthcare system.

Government policies made things worse, according to Odontuya and other doctors I speak to, by handing out free vodka. In the economic turmoil that followed Mongolia’s independence (after the collapse of the Soviet Union in 1991), the authorities were forced to introduce food rationing. But one thing they had plenty of was vodka, and they added it to every ration. “Each family got two bottles a week,” says Odontuya, shaking her head. “It was a very stupid policy.”

Mongolia was already a country of heavy drinkers, and alcoholism became even more common in those early years of independence. Precisely how much impact this had is hard to determine, but with already high rates of hepatitis infection, Mongolian doctors believe the increase in drinking contributed to the rise in liver cancer.

But it was this same cancer crisis that helped make the case for developing palliative care in Mongolia. Odontuya started lobbying for the introduction of palliative care in earnest from 2000 onwards. But first she had to come up with the right words. “[In Mongolia] we didn’t have any terminology for palliative care,” she tells me as she gives me a tour of the country’s first palliative care ward, established in the early 2000s at Mongolia’s National Cancer Center. Pointing out the sign on the door, she laughs: “If you pronounce it wrong, it can sound like our word for ‘castration’.”

But even with the words fixed, the initial reaction from officials was scorn, she says, as they dismissed palliative care as an “activity for charities”. “They asked how they could justify spending money on ‘dying’ patients, when we don’t have enough money for ‘living’ patients.” She answered with her own question: “Would you say this to your own mother, if she gets cancer or some other incurable condition? And I told them, these are still ‘living’ patients.” Even at the end of life, she says, people have human rights.

None of the former health officials I contacted responded. That Odontuya encountered resistance is hardly unique. Palliative care advocates elsewhere have also faced scepticism regarding its value – as much from medical professionals as from bureaucrats. For instance, one US study reported oncologists being reluctant to refer patients for palliative care because it “will mean the end of cancer treatment and a loss of patients’ hope”.

And for many doctors, palliative care chafes against their default philosophy. As Simon Chapman, Director of Policy and External Affairs for the National Council for Palliative Care, a UK-based umbrella charity for people involved in palliative and end-of-life care, puts it: “There is still a view among many clinicians that [a patient] dying is a professional failure.”

Today, Mongolia still has the highest incidence of liver cancer in the world. Many people are diagnosed late, when the disease is advanced and doctors can do little to stop it spreading.

§

The Songino Khairkhan district hospital on the west side of Ulaanbaatar has a solidly Soviet feel. Built in Mongolia’s socialist period, its walls are so thick they look like they would stop a tank. And the signs around the building add to the atmosphere, written in the Cyrillic script the Russians bequeathed the Mongolians.

Behind the locked door of the hospital’s main dispensary for morphine and other opioid painkillers, I am firmly back in the present. There is an air of efficient calm as two staff members work at computers, updating the database on recent prescriptions, while their boss Dr Khandsuren Gongchigav gives me a short tour of their workspace. The security is necessary to meet local and international laws aimed at combating drug abuse, and here they distribute only opioids. There is another pharmacy in the hospital for everything else.

Against one wall is a bulky metal security cabinet, its shelves filled with neat stacks of boxes of tablets. Some contain morphine, the strongest of the opioid family of drugs. It’s used for severe pain, including breakthrough cancer pain, because of its fast and powerful effects. There are other stacks – of tramadol, a less potent opioid for what specialists call moderate to severe pain.

There is a lot more to palliative care than pain relief, but experts agree you can’t have a successful palliative care programme without it. That means having an effective system for distributing opioids, which both meets patients’ needs and satisfies concerns about addiction and abuse. Reforming Mongolia’s approach to morphine was an early priority of Odontuya’s campaign.

Before the government agreed to reforms in the early 2000s, the rules were highly restrictive and counterproductive. Only oncologists were allowed to prescribe opioids and at a maximum of 10 tablets per patient – enough for just two or three days in most cases. As a result, people with cancer often died of “pain shock” when their dose ran out, says Odontuya, leading to a widespread myth that the drugs were killing people. Making morphine more readily available has helped educate patients and doctors about its benefits and reduced what she calls “morphine-phobia”.

Opioid medications still require a special form, as in most countries worldwide. But a much wider range of professionals can now prescribe them, including oncologists and family and palliative care doctors. This has led to a 14-fold increase in their use in the country from 2000 to 2014, according to Mongolian health ministry figures. Khandsuren is an oncologist by training, and now oversees opioid prescriptions for all the hospital’s outpatients. The majority are still people with cancer, but non-cancer patients have become more common. 

Every district hospital in the country now has a pharmacy like this one, allowing patients to visit weekly and get all the medication their doctor has prescribed. Nonetheless, in a country so large and so sparsely populated, that still means long journeys for patients in areas beyond Ulaanbaatar or other towns and cities.

Beyond the store cupboard, Khandsuren shows me into a room where they keep garbage sacks filled with empty blister packs. Patients have to hand over the used strips before they can get their next dose. “We do everything here according to guidelines from the United Nations,” says Khandsuren, referring to rules drawn up by its specialist drugs control agency, the International Narcotics Control Board (INCB).

Mongolia’s achievements have turned it into an example for many middle-income countries struggling with similar health problems but which, for a variety of reasons, maintain much stricter rules on opioid use. Doctors from former socialist states in particular have been coming to Mongolia to learn from its experience, their mutual past ties to Russia giving them a common language and training background.

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The National Cancer Center recently hosted some doctors from Kyrgyzstan, one of the former Soviet states of Central Asia. They remarked on how “peaceful” the palliative care department was, says Dr Munguntsetseg Lamjav, one of the centre’s senior staff. In Kyrgyzstan, she was told, it’s much harder to prescribe morphine and patients are always crying in pain.

One of the most striking contrasts with Mongolia is its giant neighbour Russia. So tight are the rules there on prescribing morphine and other opioids, I learn, that consumption has actually declined in recent years, according to INCB figures.

There is also a tendency among Russian doctors, many still influenced by their Soviet-era training, to see pain as a problem to be endured rather than treated. It is hardly surprising then that palliative care there remains very limited. But one result is frequent horror stories of people with cancer or chronic pain dying by suicide because it is so hard to get effective medication.

In fact, many governments around the world remain nervous about making morphine more available – and with good reason. Take a look at the USA, which has an endemic problem with abuse and addiction to legally prescribed opioid painkillers. But there are far more Americans suffering chronic pain (at least 30 per cent of the population according to one study) than there are drug addicts. It is all about balancing priorities, Odontuya argues. And so far at least, Mongolia’s controls seem to have worked well – its health ministry says there are few reports of people abusing opioid drugs. You hear far more concern about alcohol abuse.

§

You don’t have to spend long with Odontuya Davaasuren to realise that she’s not someone who gives up easily. I have rarely met someone as committed to a cause – except perhaps in a warzone. And there is an element of underground insurgency to her campaign, which she has pursued while also holding down a full-time medical teaching job, working as a doctor and juggling family responsibilities.

Her flip-top mobile phone rings constantly, until she switches it off. Sometimes she sees patients in her own home after work. “My husband has got used to me using our front room for consultations,” she says, smiling.

The advocacy and training organisation she established, the Mongolian Palliative Care Society, turns out to be little more than a few filing cabinets and certificates at the back of a basement room in the clinic where she works as a family doctor. The society is an umbrella group of charities and palliative care specialists, including all the country’s hospices. Odontuya is the glue holding it all together. “Sometimes I get very tired,” she tells me one day. “But I don’t think anyone else has the same heart for this.”

It has been a quest of relentless government lobbying, made more complicated by frequent political upheavals. There have been nine different health ministers in the last decade, and for each she says that they have had to go and “convince them about palliative care”.

It is in the cramped basement room that I first meet Odontuya, on a day when she is using the space as a classroom. She is a professor at the country’s premier medical institute, the Mongolian National University of Medical Sciences, and her fourth-year students are here for a session on geriatrics. And she is teaching in English, her third language after Mongolian and Russian.

I feel some pity for the students because the class lasts over three hours, and it is well past the halfway point before Odontuya remembers to give them a short break. Slackers at the back, I note, have no escape. “Why don’t you have any questions?” she demands of a young man who thought he had managed to avoid her gaze. But she is an excellent teacher, and by the end of the class I have learned a lot about diagnosing elderly patients.

Her university work complements her campaigning, because she has also set up a palliative medicine course there. Hundreds of doctors and nurses have now been through the training programme, according to Odontuya – helping to build a nationwide network and reservoir of skills.

She has also built the foundations of a similar international community through her own efforts to educate herself in palliative care. It began in 2001, when she studied palliative medicine in Poland, which was ahead of Mongolia in developing its own hospice network. Today, she is increasingly in demand to provide her own palliative care training, particularly in Russian-speaking former Soviet states. She has recently returned from running a course for doctors in Kyrgyzstan.

For a country that had no palliative care to speak of barely a decade ago, the change has been dramatic. All Mongolia’s 21 provincial hospitals as well as the nine district hospitals in Ulaanbaatar have at least five palliative care beds, as well as individual morphine dispensaries. There is also a network of private and charity-run hospices that provide palliative care around the capital city region. Even Ulaanbaatar’s prison hospital has four beds reserved for terminally ill patients. The national health service now has to provide palliative care by law.

“It is the government that has made the policy,” Odontuya says. “All I have done is advocate.” But I am not surprised to hear from colleagues of hers that I speak to during my visit that she has been dubbed the ‘Mother of Palliative Care in Mongolia’. At the country’s Ministry of Health they agree. “We have learned a lot from her,” says the Director of Medical Services, Dr Amarjargal Yadam.

“In the past, many hospitals turned people away because they were incurable,” Yadam says, speaking for the minister, who was away during my visit. “We still need to make a lot of reforms,” she adds, “but we are listening to the people.” Health is now such a priority, she says, that it is ring-fenced from likely future budget cuts forced by a recent economic downturn.

As Odontuya’s students grab their books and rush gratefully out of the tiny classroom, she switches back into her role as evangelist, showing me the many training manuals from Western medical institutes and international health bodies that she has had translated into Mongolian.

And at a time when she was already a grandmother, that meant learning English from scratch – not just to understand the texts, but also to apply for grants to get them printed. She remembers getting the first email from one of her funders, the Open Society Foundations, and then spending the next day going through it with her English-to-Mongolian dictionary. “There was no Google Translate then,” she says. “This is how I learned English.”

§

“I have less pain now” says Batzandan, a 57-year-old film and stage actor with advanced cancer. “But I know I am not getting better.” We are talking at his bedside in the palliative care ward of Mongolia’s National Cancer Center. In the past, he may not have been given the whole picture, but Munguntsetseg, the senior doctor on duty, says Batzandan has been told to prepare for the end. “Our policy now is to give patients the full diagnosis,” she says.

But ‘breaking bad news’, as it is often called, is one of the hardest tasks for any doctor – even more so in a country like Mongolia, where any mention of death has long been a taboo subject. There are also particular beliefs about dying on certain days of the week, I learn. “Tuesdays and Saturdays are bad luck,” Odontuya says, “so if someone is close to death on those days, families put a lot of pressure on doctors to make sure they die the next day.”

As much as possible, they try to work within local traditions and beliefs, not against them, using them to their advantage to put a local face on palliative care. Odontuya often uses a Mongolian proverb in her conversations with patients who are close to the end. It is hard to translate directly, but in essence it speaks of the inevitability of death, and she says it helps “patients to accept the real situation, accept a poor prognosis easily, because it is true that everyone will die someday”.

Traditions from Buddhism – the country’s dominant faith – have also been a help. When someone dies, a lama, or priest, reads from special scriptures, which is known as “the opening of the Golden Box”. The priest can also tell if this person had lived longer or shorter than God intended, explains Odontuya, and “sometimes the lama says [living longer] is because of good medical treatment”.

Back on the palliative care ward, Munguntsetseg says she has seen attitudes to death change since the ward was established. “More patients write a will now,” she says. “They would never have done that in the past because it would be seen as a bad omen.”

The hospital also offers patients what is known as “dignity therapy” – which my interpreter translated as “reputation treatment” – encouraging them to tell their life story before they pass away. It began as a way of dealing with patients suffering severe depression, she says, but then they found that other people wanted to tell their stories, to set the record straight. “We had a patient recently who asked his ex-wife to visit, so he could apologise for his past behaviour, and he gave her money too.”

Some palliative care patients have responded by drawing up ‘bucket lists’. During my visit, I met a woman with terminal cancer who had recently returned from a visit to Lake Baikal (the world’s deepest lake) in Siberia, just the other side of Mongolia’s border with Russia. With her week’s prescription of morphine tablets, she had been able to make a journey that had been “a lifetime ambition”.

Before she studied palliative care, Odontuya says she was a “very closed, quiet person”, adding that if anyone had mentioned spirituality in the past, “I would have thought it was religion”. But a visit to a Polish hospice sparked a “revolution in [her] brain”. Then she understood that palliative care is total care, she says, something that covers “all physical, psychological, spiritual and social pain”.

The idea of palliative care being holistic can be traced back to Cicely Saunders, the British nurse and doctor who established the first hospice in the UK in the 1960s. She came up with the concept of ‘total pain’, arguing that it was as important to address the mental, emotional, spiritual and social aspects of patients’ suffering as it was to treat their physical symptoms.

Odontuya worries that spiritual matters could still be sidelined by the modernising pull of more clinical approaches. “The Ministry of Health and our university do not understand what spirituality, spiritual pain and spiritual care mean,” she says. Still, Saunders’s focus on the spiritual side has been an inspiration for Odontuya.

“She lived in modern society, but she thought like a postmodern person,” Odontuya says. Saunders was also a charismatic campaigner, and Odontuya seems to be taking on her mantle – you can already see the impact she has had in Mongolia. But she modestly ducks the comparison, saying: “I am just her little finger.”

§

It is a bright, freezing day in the Mongolian capital. Shards of winter sun reflect off of the nearby crop of glass towers, which sprung up in the city centre during the country’s recent minerals boom.

A small crowd is heading towards a giant statue of Genghis Khan on the far side of a square that is named after him. Some people carry placards in Mongolian exhorting the virtues of palliative care, hunching into their coats as the wind stiffens. These doctors, nurses and hospice staff, as well as their friends and family, have come from across the country to hold a rally to raise awareness, part of World Hospice and Palliative Care Day.

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In the midst of the crowd is Odontuya, alternating between greeting friends and making phone calls to check the journalists she has invited are on their way. “Always I am doing advocacy, advocacy,” she says.

I wouldn’t associate Genghis Khan with palliative care, I think to myself, as I follow them towards the statue of Mongolia’s famously pitiless founding father. But time is a great cleanser of reputations, and now the man Mongolians call Chinggis Khaan is everywhere – even the main airport is named after him. And his is the square in Mongolia you choose if you want your gathering to have maximum impact.

The municipality had turned down her request for a rally, Odontuya says, apparently claiming it was closed for an event. She decided to show up anyway. Apart from a wedding party posing for a photographer, there is no sign of anything else going on. As they approach the statue, a guard sees the placards and TV crew waiting nearby, and holds up a uniformed arm to halt the impromptu collective. “This is not allowed,” he barks.

Odontuya and two colleagues persuade him to compromise. Workers from each hospice take it in turns to line up beneath the statues, laughing and chatting as they hold up their placards for the cameras. Genghis glowers from above.

Photos done, it’s time to head off for a picnic in the hills. We drive up through one of the new suburbs creeping up the hills around Ulaanbaatar, past unfinished developments with names like English Garden and Forbes Mongolia.

The mood is very happy. The care workers laugh at the pretentious names. They laugh at everything. The jokes continue as they unload picnic baskets from the cars and carry on up the hill, past a park filled with concrete gers for tourists.

After lunch, there is music, dancing and games – and then an awards ceremony, with Odontuya handing out prizes for the best hospice and palliative care workers of the year. And then there is a prize and a cake for her too. “We love her,” says one young hospice worker, nodding her head towards Odontuya behind us.

Another hospice worker brings out his guitar and starts up a group song. Odontuya peels away to do a couple of television interviews. That evening all of Mongolia’s main TV channels run a story about palliative care.

Odontuya says that they get together like this every year because the hospices are spread so widely across Ulaanbaatar she may not see some staff for months. “I remember going to visit hospices in China and Singapore,” she says. “They have far more resources than us, but they don’t have this atmosphere. We are poor by comparison, but we love each other. We are a family.”

It is, I realise, a theme that permeates all that Odontuya does. From the personal experiences that put her on the path to becoming Mongolia’s ‘Mother of Palliative Care’, to the way she practises it, ‘family’, in every sense of the word, is a guiding spirit.

After I return from Mongolia, I ask my translator to call Tumurbat Dashkhuu’s family and find out what had happened. He died at home a few weeks after my visit, in his ger, with his family around him. And, after following Odontuya’s advice to postpone his military service, his son Dorj was there too.

 

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

Why thank you can’t wait

Why thank you can’t wait

Our son, Ben, is responsible for bringing the most remarkable people into our family’s life. They’ve come in the form of teachers, therapists, bus drivers and service providers – all caregivers who have shared their life with ours. I’ve learned that there’s no good reason to wait to say thank you.

Ben was born with severe cognitive, physical and speech development issues that require 24-hour care. If not for his caregivers, I don’t think Ben or our family would be in the good place that we are today.

The relationships we’ve developed with Ben’s caregivers have helped us establish a strong network of support. We are grateful for them and their willingness to care and love him as much as we do.

They’re caregiving has extended further than their job duties. When I’ve needed advice about how to approach a situation or vented about bureaucratic issues that prevented Ben from receiving services, they’ve provided insight or a listening ear to help get me through the tough times.

They hear the words, “thank you,” from me on a regular basis, but I also attempt to do something special for them as well.

Here are 5 ways to say thank you throughout the year:

Create a care package

Put special items in a box or reusable bag to show your appreciation for their work. Bus drivers and bus monitors are often underappreciated for what they do. A care package with a box of tissues, baby wipes, paper towels and glass cleaner will make them feel appreciated and help them be prepared for eventual situations. It also saves them having to buy these items with personal funds.

Consider making a “survive the first week” box for a teacher. Send in a tote bag with lip balm, mints, aspirin, a chocolate bar and other personal items that the teacher can have at their disposal during that hectic first weeks of school.

Give a gift for the road

Therapists often drive throughout the day traveling to different schools and homes to work with clients. Purchase a small lunch bag and fill it with a drink, snack and a magazine for a treat in between clients.

Many caregivers would appreciate a gift card to a local coffee shop or cafe so they can have a moment alone.

Volunteer your time

In some cases, giving a bit of your time can help ease the pressure off a caregiver or give them the opportunity to attend a special event.

I’m active with a leadership team at my son’s school because his teacher asked me to a be a part of the group. His teacher represents the interests of the special education program, and I can show my support of her and advocate about issues that affect her class.

Make or bake something

My favorite gift is a handmade bookmark that has the poem, “You’ll never know” printed on it. Add a bookmark to a book by a caregiver’s favorite author, a paperback for the beach or a volume of inspirational poems.

Not crafty and don’t have the time to bake? Pick-up store-bought muffins or cookies. It shows someone that you care about them.

Write a note

Most of us worry about stumbling over the right words to say how we feel about someone. In fact, that apprehension sometimes prevents us from ever writing the note. But words can mean so much to the receiver. Say thank you, pick one thing you are grateful for and sign it with your name. That’s it.

At the end of each year, I write the bus driver and monitor a note telling them how much it’s meant for me to know that Ben was in safe and capable hands while on the bus.

 

Are you waiting to say thank you to someone special in your life? Try one of the ideas above or use one as an inspiration to develop your own unique thank you.

Doing this already? Tell us who you show appreciation to. How do you say thank you? Add your ideas in the comment section.


vanessaVanessa Infanzon is mom to three beautiful boys. Her oldest son, Ben, is a smart, funny and determined 14-year-old. He doesn’t let anything stop him from doing what he loves – swimming, being outdoors and eating out. Vanessa is also a contributing writer for Ross Feller Casey.

 

Traveling For Treatment: Tips And How To Cope

Traveling For Treatment: Tips And How To Cope

No matter what their diagnosis is, caring for a family member is a lifelong endeavor — a labor of love— that can be as taxing on you as it is on the person you’re caring for.

That endeavor becomes even more difficult if you need to travel to make sure your family member can get the care or treatment they need. Yet, this is hardly a rare occurrence. Approximately 11 million people around the world travel to other countries to receive medical treatment.

Whether you’re traveling across the state, across the country or around the globe, what can you do to help make the process easier on you, your family and the person you’re caring for?

Learn the Language

Countries that are popular destinations for medical tourism, as it’s being called, may have plenty of fluent English speakers who can help you or answer your questions while you’re in a medical facility. What happens when you’re heading out into the city to get food or supplies, though?

Don’t rely on a phrasebook or a translation app — take some time to learn at least a little bit of the language. You don’t need to be fluent, but being conversational in the local language will make the whole ordeal a little less stressful.

Plus, you may find that the more you speak with the locals, the more fluent you become. Immersion in the language makes it easier to learn — you learn naturally, as a local child would while they were learning to speak.

Take Some Time for Yourself

This isn’t easy when you’re in a foreign country and responsible for someone who may or may not be able to care for themselves for a short period of time.

One side benefit of these trips, sometimes called “reverse medical tourism,” is being able to see the sights of whatever beautiful country you’re visiting. You might not be able to plan a whole day cruise or anything elaborate like that, but it’s still important to take a little bit of time for yourself.

Research Everything

Flying across the globe to seek medical treatment for someone you’re caring for is an expensive proposition, so it’s important to research everything before you get on that plane. Look into the credentials and licensing for the doctor you’re planning to see. The medical standards may not be the same as they would be in Western hospitals.

Also, research the infection rate for the facilities where your family member may be undergoing procedures. Antibiotic-resistant bacterial infections are more common in facilities outside the United States, according to the CDC, so if a surgical procedure is in the plans, it’s important to ensure you take all the steps possible to avoid coming into contact with these bacteria.

Pack Light but Don’t Forget the Important Stuff

In the United States, the majority of medical professionals have transitioned to the use of electronic health records — digital charts rather than old-school paperwork. While this helps to streamline medical care and billing in the States, these records may not be accessible to physicians overseas. Make sure you pack all medical records and applicable medical paperwork.

If you’re worried about the weight of your luggage — because we all know how expensive checked baggage fees can be when you’re traveling overseas — make sure to get a digital copy of your files and carry them in that format on a hard drive or USB flash drive. This is also safer for things like films or X-rays, so you don’t have to worry about them getting damaged or crimped during the flight.

On the same note, get copies of all medical records generated while you’re overseas before you head back home. Your U.S. based doctor likely won’t have access to those files, so it’s important to bring them back with you.

Be Prepared to Stay a While

Recovery times will vary depending on your family member and the procedure or surgery you’re traveling so far for. You should be prepared to stay as long as necessary to ensure their recovery is going well and that it is safe to travel.

If the procedure you’re traveling for includes a surgery, it may require a longer stay. Flying in the first four weeks after surgery increases the risk of blood clots, which can be a dangerous complication for someone trying to recover from a medical procedure. The risk goes up if the surgery was done on the legs or below the waist.

Be Aware of Currency

Most insurance companies will not pay for procedures done overseas, though they may reimburse you for it once you return home. You will likely be required to pay for the procedure out of pocket, so make sure you have plenty of the correct currency. Currency exchanges will vary depending on the day.

When it comes down to it, even if you’ve got beaches and mojitos waiting for you, this will likely be a stressful trip and it may push you to the very limits of your ability. The key is not to panic — this is to help someone you love, so if you remember that, everything else will just fall into place.

Caring for someone else isn’t an easy thing, especially if you’re trying to do it halfway around the world. Take a deep breath and remember why you’re doing this — caring for someone is a labor of love in every sense of the phrase.

Image by Oles kanebckuu

Messages From Beyond: Using Technology To Seal Your Legacy

Messages From Beyond: Using Technology To Seal Your Legacy

One year after her husband died, Janice Gentile received an unusual request from her daughter: make a legacy video about their marriage — and their lives.

At first, Gentile, who was 72 at the time, was turned off by the idea. The Holbrook, N.Y., resident was still hurting from the loss of her husband, Cesare, who was her high school sweetheart and to whom she was married for half a century. But her daughter, Laura, urged her to make the video that lovingly traced the lives of both parents.

“It’s about both of us — but since he couldn’t speak for himself, I had to speak for him,” recalled Gentile, who is now 80 and views this video as a central part of her legacy. All four children received a copy of the 23-minute video filmed in her home by a professional videographer — and she saved one of the Blu-ray discs for herself, which she pulls out on special occasions and shows to friends who inquire about it.

Just as early humans used primitive tools to carve storyboards of their lives on cave walls, today’s technology can leave a lasting trace — at least as long as the technology lasts.

“Everyone has a story to tell, but once you’re gone, your stories are gone,” said Diane Hirsch, the woman who filmed the video and president of MyVideoLifeStory.com. If you leave a video memory behind on a disc or memory stick, she said, “future generations will know your life.”

What exactly are we supposed to leave behind after death — besides a will — for those we love? That’s a complicated question that vexes many Americans. New technologies and yet-to-be-discovered technologies keep broadening the possibilities of both the medium and the message. Beyond companies that will film your video legacy, others, such as LegalZoom.com’s forthcoming Legacy division, are exploring innovative ways to let select loved ones continue to connect with you after you die as they face new milestones.

“It’s kind of like you’re saying: Don’t forget about me — whether someone wants to forget about you or not,” said Bart Astor, best-selling author of AARP’s “Roadmap for the Rest of Your Life.” “The concept is kind of weird to me.”

Indeed, most Americans do all they can to avoid thinking about their legacy.

Only 44 percent of Americans leave any kind of will behind, according to a 2016 Gallup poll. “Most Americans never act on the question: How do I want to be remembered?” said Astor.

But some who have been touched by the technological legacy say it’s wonderful, not weird at all. And there are those who only wish — usually too late — that they could be on the receiving end of digital-video memories of their deceased spouses, parents or grandparents.

“The only tangible recording that one young lady told me she had of her mother is a cellphone message,” said Craig Holt, global chief product officer of LegalZoom, who is overseeing the Legacy division that is in the testing stage in the United Kingdom, and which could expand into the U.S. market next year.

Legacy can do much better than old cellphone messages, said Holt. Think of one of its products as more like a time capsule that will dispense prerecorded messages at significant times or dates in the future — such as a grandchild’s 16th birthday.

“This is very different from leaving some photos on a phone or some sort of journal behind,” said Holt. “It shows you’ve done some thinking about the future.”

Holt, for example, has twin children who are nearly 5 years old. In the unlikely event that the 39-year-old executive dies early, he has digitally recorded personalized messages for each of them that will express his love around their 18th birthdays and their potential weddings.

“Easing the pain of loss is about more than financial issues,” said Holt. “There is an emotional legacy, too, and certain things I want to tell people I’m leaving behind.”

LegalZoom’s Legacy plan also includes a “dynamic” will structure that allows for changes to a person’s will to be easily made online instead of through an expensive trip to the lawyer’s office.

Holt declined to estimate what it might ultimately cost consumers to use the service.

Clients, of course, essentially would be betting that LegalZoom and its Legacy division will continue to be around and operational for years after they die.

“You have to hope the company still exists years from now,” said Astor. “It’s like buying an annuity. If the company is no longer there, it’s too bad.”

Meanwhile, the only real “risk” with digitized videos from MyVideoLifeStory.com is that the recipient doesn’t want to see them. That would be the exception, said Hirsch. Keeping a legacy going is really about keeping a family’s history from disappearing.

In the case of Janice Gentile, for example, until she made that video, her children never knew she had once performed a piano concert at Carnegie Hall, said Hirsch.

Janice Gentile spent nearly a half-century married to Cesare Gentile, who was her high school sweetheart. (Photo courtesy of Janice Gentile)

But quality doesn’t come cheap. Hirsch’s videos can cost up to $7,000. She spends hours with each subject — getting to know them before she starts filming. Hirsch faces tough competition with at least a dozen other video legacy biographers offering similar services from New York to Arizona to California. The best way to select a legacy videographer, she said, is via recommendations. Even then, she said, it’s critical to spend lots of time getting comfortable with the videographer before filming begins.

The idea for the business came to her shortly after her mother died. Realizing how unpredictable life is, Hirsch persuaded her 85-year-old father, Raymond, to sit and talk for three hours while she shot video and he talked about his past. Nine months later, he died. “I watch his video all the time, and it still makes me feel good,” she said.

Gentile treasures the fact that her four children and 10 grandchildren will always have her recording as a way to remember both her husband and herself. She said that she’d advise her best friend to do one, too. “Go for it,” Gentile said. “There’s nothing to lose.”

One of her sons has ribbed her about the video. “He says I spent more time talking about the dog than my kids,” she laughed. But her only regret is that she wishes she could have created it with her husband, when he was alive.

Astor said the legacy that he and his wife prefer to leave is more educational than sentimental. Both have established need-based college scholarships — in their own names — at their alma maters.

“To me, it’s all about leaving your values to future generations,” said Astor, who, like his wife, needed student aid to make it through college.

Instead of leaving behind a digital legacy, they’re giving back the old-fashioned way: cash.


KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Featured image: Evgeny Drablenkov / Shutterstock.com

Sharing caregiving tasks with your siblings

Sharing caregiving tasks with your siblings

When an elderly parent becomes unwell or unable to maintain full independence, the child is often the one to step in to provide his/her parent with the loving care they need. Caregiving for a parent is always difficult, but when there are several siblings involved, everything becomes that much more complicated.

There are many different ways that adult children react to their parent becoming dependant on the help of others, and when there is more than one child, these individualized reactions can cause strife and bitter feelings, unless dealt with correctly.

The following are some common ways that this situation can (and does) play out:

1.  Siblings Who Refuse to Help

When the child of an aging parent has other siblings around, he/she may be tempted to take the easy way out and allow the burden to fall on someone else’s shoulders. This can obviously cause a lot of resentment among the siblings who end up with all or most of the responsibilities.

One such example is Gloria P.*, who shoulders the entire burden of caring for her aging father.

As Gloria shared, “The responsibilities of caring for my dad, who has dementia, are daunting – and my brothers never visit or help in any way. I took in his dog, I pay his bills, I drive him places – but they do nothing, and honestly, I resent that.”

Carol Bradley Bursack1 recommends several ways to deal with siblings who refuse to take on their fair share of responsibilities:

  • Ask for help. Be direct and tell them exactly what you need or what they might do to ease your burden.
  • Have a care plan. A care plan can help you organize tasks and responsibilities to make it easier for them to get involved. Also consider keeping an online medical & health record so that you’re always on the same page.
  • Let go of expectations. By learning to let go of your expectations and hurt and allowing yourself the liberty to find help elsewhere without feelings of resentment, you are ensuring your own peace of mind.

2.  Siblings Who Forcefully Take Control

Alternatively, there may be several children who would like to help – but another sibling refuses their help, choosing to control the situation and have the last word in their parents’ care.

“The opposite problem also exists, when one sibling takes on the entire burden, believing he/she must do everything and shutting out the other siblings. In my family, our oldest sister took Mom on as her personal project. We’re not allowed to have an opinion. Yes, she’s good with financial stuff and Medicare – but that doesn’t mean we don’t want to be involved in our mother’s care! She just won’t let us do anything for our mother, despite our protests,” says Diane S.

3.  Multiple Siblings with Conflicting Interests

Even when all or most of the children pitch in and/or get involved in their parents’ care, there can be a lot of conflict caused by different opinions, or, according to Alexis Abramson, gerontologist and author of “The Caregiver’s Survival Handbook,” even by pre-existing tension between siblings:

“When siblings squabble over who will care for Mom or Dad or refuse to help one another with caregiving tasks, the problem often isn’t about caregiving itself, but conflicts and power struggles that may have existed since childhood.” – Alexis Abramson

Many caregivers and senior care managers recommend circumventing such issues by having a neutral third party involved as a mediator.

If the main issue is the differences of opinions, one great recommendation is given by Heidi T., an experienced family caregiver:

“Your first consideration should always be to fill the wishes of the parent wherever possible. If not, try to make the kinds of decisions the parent would have made in the past. This way, instead of getting your personal feelings involved and doing what’s best for yourself, you know you are doing the best you can for your parent.”

Ellie’s Story

Ellie L. from New Jersey is one of seven siblings and she often struggles with keeping the peace between her siblings. The following is her take on sharing the caregiving burden, as well as the mindset that helps her ensure that her mother gets the best care possible without any hard feelings among her siblings.

“One of the hardest things about having an elderly mother,” Ellie begins, “is juggling the many opinions and keeping peace. It’s really true what they say – one mother can take care of seven children, but seven children can’t take care of one mother.

“The first thing I try to remember,” she continues, “is that if other family members give opinions or try to be ‘helpful’ they are doing it from love.

“Everyone makes mistakes; no one does a perfect job taking care of others. If you don’t like the way your sibling is handling it – realize that she’s doing the best she can.

“In my own family situation, I have no reason to suspect abuse. Of course, if one does suspect some kind of abuse, one has to take action!! If not, you have to trust the caregiver to make the best decisions he/she can. (It doesn’t help to mix in for everything… too many cooks spoil the broth!)

“Sometimes, my siblings make decisions that don’t make sense or that were wrong – but once it happened, it’s over and there’s nothing I can do about it. Instead of causing family discord because of the past, I choose to accept it and move on.

“If I feel strongly that something needs to be done a certain way, while my sister feels the opposite, I need to remember that two people can have opposite opinions and neither one is wrong. For example, I feel that our Mom needs evaluation for depression, and my sister thinks I’m just imagining things. In this case (and in many other cases like this one), there is no danger to giving in and waiting some time before re-evaluating her condition. It gets tricky if you think that there is danger, but I find that it’s pretty rare that it gets to that. After all, unless you’re dealing with unreasonable people, your siblings all want what’s best for their mom.

“Years ago, when my sister’s mother-in-law was unwell, she had one sister who was mostly involved in the caregiving. She once complained, ‘They live out of town and they like to have opinions. I’m here, taking care of everything, and my siblings in another town have an opinion on how I do it! You know, if you really want to have opinions, move here and do it yourself.’

“When I heard that,” Ellie concludes, “I made up my mind that if my sisters are going to do things I’m not able to take on myself, I have no right to have an opinion.”

Jessica C., who helps care for both of her parents, agrees with this: “My parents live with my sister. We have three other siblings who live around the country. When I spent a few months at my sister’s home (which is in another state), I gained a new appreciation for what she does for my parents, as well as how difficult caring for them can be. My other siblings, who didn’t share this appreciation, tended to bark out orders. Because of my experience, I have learned to allow my sister to make the decisions, and I encourage my other siblings to do the same. The most important thing is the care and wellbeing of our parents.”

Top 5 Tips for Shared Caregiving

When sharing the caregiving burden with your siblings, Ellie recommends keeping the following pointers in mind:

  • People make mistakes – and sometimes what you believe is a mistake may actually not be a mistake at all.
  • Two opposite opinions can both be right.
  • Appreciate what they’re doing instead of thinking about how you could do it better.
  • You all share love for your parent and the fact that you have different opinions is okay.
  • Always support each other and respect each other’s opinions. This is especially important because, similar to parents who undermine each other and thus undermine their child’s growth, siblings who don’t support each other in their parent’s end-of-life journey end up undermining their care – and this is true even when you’re in the right.

 

*Some names have been changed to protect the privacy of the individuals involved.

1 See Top 3 Excuses from Siblings Who Don’t Help with Caregiving

Featured image: Joseph Sohm / Shutterstock.com


About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.

The Most Important Things You Need To Understand About Your Parents’ Medicare Coverage

The Most Important Things You Need To Understand About Your Parents’ Medicare Coverage

Navigating the ins and outs of the world of insurance can be a difficult task no matter how old you are. The laws are constantly in flux, and talking to an insurance agent can leave you wanting to toss your phone in the trash. When you’re caring for a family member, it can get even more complicated. To help make the navigation easier, here are a few of the most important things you need to understand about your parents’ or family member’s Medicare coverage.

Medicare Comes in Parts

You’ve probably heard commercials talking about Medicare Part D. What does that mean, and what happened to parts A, B and C?

Part A covers hospital visits and any care related to those visits. Most retirees qualify for this automatically.

You have to sign up for Part B, which covers physician’s visits. The premium for this is automatically deducted from Social Security payments.

Part D, the one you’ve probably heard the most about, covers prescription drug costs.

Part C, though it isn’t officially called Part C, is designed to cover the gaps between the other three parts of Medicare. It’s most commonly called Medicare Advantage, but you can’t always sign up for Advantage while you’re signed up for the other three parts of Medicare.

Confusing, isn’t it?

Thankfully, the federal government has set up an online plan chooser to help you pick the best plan for yourself or your loved one. If you’re still confused, you’re not alone and you’re in luck — each state has set up a state health insurance program (SHIP), which puts you in touch with a live person to help you navigate all the various parts of Medicare.

Ask for Itemized Bills

Even with all the coverage Medicare provides, you will likely find yourself looking at bills from hospitals, doctors’ offices or labs that weren’t covered by Medicare. While this is to be expected, it’s important to go over each of these bills with a fine-toothed comb.

Make sure each bill you receive, whether it is one that needs to be paid by you or one that was paid by Medicare, is actually for a service you received. Most of the time it will be correct, but transcription errors can lead to you receiving incorrect bills.

If you think something is wrong, or you’ve received a bill for a service that was never rendered, ask for an itemized bill. This will make the hospital go back over their records. If a mistake was made, chances are you’ll never hear anything about the bill again.

Keep Your Paperwork Organized

Most of the time you spend when dealing with Medicare will be keeping track of appointments and paperwork. Not only will it help you find errors that require the request of an itemized bill, it will also help if you’re dealing with multiple doctors.

It can be hard, if not impossible, to get some doctors to read a patient’s chart. You might find yourself paying for repeats of tests or procedures that may or may not be necessary. If you think a test has already been done or a procedure has already proven ineffective, speak up. Bring the paperwork to back you up.

Ask Questions

Asking questions is your very best friend when it comes to Medicare. Whether you’re talking to a SHIP representative while you’re picking your parent’s plan, or a doctor or nurse, ask questions and take notes. A few questions you should always have in your arsenal include:

  • Is this procedure covered by my parents’ insurance? If not, is there a similar alternative that is covered?
  • What are the options available for psychological treatment covered by Medicare? This is an essential question if you receive an Alzheimer’s or dementia diagnosis. While there are a number of resources available, they are not all covered by Medicare.
  • Have you read the patient’s chart? It’s not a rude question, even if it might sound that way. A chart is a wealth of information that is far too often overlooked.
  • What is covered when it comes to preventive care? Preventive care can be a great way to, as its name suggests, prevent problems in the future. Knowing what is covered can save you a lot of money in the long run.

Keep your questions in a notebook or a memo file on your phone and if you think of new ones, add them in as well!

Even people who have spent their entire life studying the ins and outs of Medicare often find themselves puzzled when a new law or piece of legislation hits the books. If you’re taking your first steps into the world of insurance, be prepared to be confused. Just know you’re doing the best you can and there are tools and people out there to help you through the most confusing parts.

Image by Cathal Mac an Bheatha

Let’s Stay Connected

Let’s Stay Connected

Our lives are so busy these days; we’re cooking, cleaning, taking care of the kids, planning parties, and working. Not to mention all the time we are spending at the gym. With our fast pace lives, this leaves little time for family.

How many times have we seen someone that we haven’t seen in awhile? We want to keep in touch with everyone, but work and life get in the way of quality time, especially if you’re busy taking care of others or being taken care of. I personally have a mother who I care for and though we see a lot of each other, it’s still hard for us to get out and see the rest of our family.

While this is a struggle for us, there are some ways we keep in touch that I wanted to share with you.

Technology

One of the biggest ways we stay connected is through technology. Between messaging, video chatting, email, social media, etc, we don’t miss a thing. With so many types of devices these days, we have a wide selection to choose from. Devices and apps such as Skype, Google Hangouts, Facetime, and of course our Nucleus, a home intercom system that makes it easy for us to stay on the same page. A lot of my siblings have Nucleus units in their homes as well and we love to connect that way. All they have to do is tap on mom’s picture and they can check in on her even though she’s miles away. This means she can chat with them without asking me, “how do I work this thing?”

Phone time

Since video chatting can often be a lot for my mom, so she likes to stick to phone calls instead. To help her out, I’ve put all the numbers she needs on speed dial so she is able to call our family on her own whenever she wants. To help your family in care to have something to look forward to, I think setting up weekly phone dates with a loved one is a great idea! That way it gives them something to look forward to and it helps keep constant communication.

Bring Back Family Dinner

Don’t you miss the days where your family sat down every day at 6:30 to a homemade meal? Since it’s hard to get family in town all together, we’re able to get together with one another thanks to technology. Every month or so we like to video chat everyone in for dinnertime. We all actually have a Nucleus intercom system in our kitchens so we’ll video chat once in awhile. That way we can enjoy a meal and each other’s company just like the old days. Our family can be together no matter where we are, sharing successes, telling stories, and laughing. To make it feel like we’re all really together, sometimes we even make the same meals!

Planning Scheduled Visits

While I know finding time in our busy days can be tough, in person visits are always the best way to stay connected with a loved one in care. I know that when my family comes to visit in person is when my mom feels most connected. While we don’t get to do this often, in person visits are always uplifting.

These are just a few examples of how to stay connected to family. While it may take a little extra effort to stay connected, we all are so happy to resort to these small changes. What ways do you keep in touch?


nucleus logothe Nucleus Team

Nucleus is a wireless home intercom system is up and coming in the smart home community. With two or more devices you can see into any room or a family member’s home with just a click of a button. Alexa enabled, this private and secure device helps families stay connected. To learn more, check out nucleuslife.com.

Little gifts to brighten a caregiver’s day

Little gifts to brighten a caregiver’s day

Caregivers can be tough to shop for! When you’re busy taking care of everyone else, there’s hardly any time left for hobbies.

The best way to brighten a caregiver’s day is always going to be taking something off of our to-do list for us. Having an afternoon off from running errands or a little time to ourselves is always appreciated.

It’s hard to wrap “stopping by the pharmacy” or “an afternoon with grandma,” so here are a few ideas you can hand over…

For when you’re not there to say it in person…

For someone who needs a boost…

For someone you really care about…

For the caregiver who doesn’t ask for help…

For when you wish you were there to help in-person…

For the impeccably organized caregiver…

For the caregiver who doesn’t have the time for a break…

For someone who doesn’t want to hear they should take care of themselves…

Why you shouldn’t rule out medical marijuana just yet

Why you shouldn’t rule out medical marijuana just yet

One of the hardest jobs in the world is being a caregiver to a terminally ill loved one. You want to take away their pain and bring joy back into their bodies, but many times are unable to do so.

When modern medicine can no longer treat patients with late stage diseases — such as Lou Gehrig’s disease, cachexia, AIDS, cancer and multiple sclerosis to name a few — professionals often suggest hospice to the family.

Though somewhat controversial, there is a homeopathic medicine that can help your loved one by reducing their anxiety, increasing their appetite, lessening nausea and vomiting and lowering their pain levels: medical cannabis.

Your body already produces its own cannabinoid chemicals, but an increase in these chemicals can bring your loved one several much-needed benefits.

A State-Specific Alternative Medication

The cannabinoid chemicals found in the human body help to regulate your appetite, pain, memory, thinking, concentration, body movement and the five senses. Marijuana’s main ingredient is delta-9-tetrahydrocannabinol (THC). The plant also consists of more than 100 other cannabinoid chemicals.

Cannabidiol, also known as CBD, is another cannabinoid chemical researchers are growing and testing to treat specific conditions, such as childhood epilepsy. The CBD oil does not promote an intoxicating effect, which decreases the likelihood of abuse.

Of course, you should check your state’s laws before seeking medicinal marijuana as an alternative medication. It may be the option that helps to prolong your loved one’s life while managing symptoms, but if your state doesn’t allow it, using cannabis as treatment would be illegal. However, states like Florida, where medical marijuana is legal, often have online eligibility surveys that you can fill out to determine if your loved one’s condition qualifies.

As many as 28 states have legalized medicinal marijuana with possession limits. Even CNN’s chief medical correspondent Sanjay Gupta now advocates for the usage of medicinal marijuana, citing that the treatment does not increase likelihood for addiction and abuse. The incidence of developing dependence can happen in up to 10 percent of patients, which is a lower percentage compared to cocaine (20 percent) and heroin (25 percent).

There are also FDA-approved THC medications that reduce pain and inflammation as well as manage muscle control issues. CBD oil does not affect the mind and helps to decrease pain and inflammation. CBD may help patients with mental illnesses and addictions.

How Can It Help?

One of the studies conducted on cannabis extracts shows a positive outlook for the homeopathic treatment to kill certain cancer cells in animals while reducing the size of other cancer cells. There are ongoing preclinical and clinical studies to test marijuana’s extracts for its ability to treat diseases and conditions.

Currently, there are two marijuana medications approved by the FDA: dronabinol and nabilone. Both medications help to increase appetite and treat nausea. If you caring for a loved one who cannot hold down food due to their condition or its treatment, dronabinol and nabilone may help.

Sometimes the medication typically prescribed to boost appetite in terminally ill patients causes dangerous side effects, complicating treatment further. If your loved one is suffering from malnutrition and unable to take prescribed medication due to side effects like blood clots, medicinal marijuana may be the only humane option available.

Using Medicinal Marijuana to Manage a Condition

As a caregiver, you may feel helpless watching your loved one’s pain increasing while you’re unable to increase their pain medication. Increasing narcotics to control the pain can also be dangerous and result in overdosing. Medicinal marijuana is safer in this aspect.

If you live in a state where access to medical cannabis is legal, why not see if it helps?

Have you cared for someone who used medical cannabis to treat an ailment? What was the experience like? Tell us in the comments section below.

Image by Libreshot

Simple Ways Technology Can Help Caregivers

Simple Ways Technology Can Help Caregivers

Caregivers of the world: help is closer and more affordable than you might think. Despite daily technological innovations, it’s still easy to picture technology as a pricy luxury that only top hospitals or millionaires can afford to employ. Thankfully, that isn’t the case. There are countless technological aids readily available to help you help your charge.

Ready for a crash course? Here are 7 simple ways technology can help you with caregiving:

1. Provide Connections

While social media certainly has its pitfalls, no one can deny that it’s a useful way to keep in touch with loved ones. You name a photo-sharing, video-sharing or communication enabling media, and it has likely helped someone, somewhere, gain positive social interaction with distant loved ones.

Understandably, not everyone may want or need their own social media accounts, social media makes it easier for caretakers to share videos and photo albums to help their charge feel and stay connected. When it comes to video chatting, Skype remains a perennial favorite. It’s simple to use and isn’t android or iPhone specific.

2. Promote Mental Exercise

There really is an app for everything, including apps specifically designed to help improve memory and other cognitive skills. Some apps are broad in their mental fitness goals, while others are tailored to specific needs, like apps that help autistic children and adults learn to read facial cues. You can also simply install apps for favorites like Sudoku, crossword puzzles or Scrabble equivalents for more familiar mental fun.

3. Promote Physical Exercise

Many factors can limit physical exercise or provide motivational setbacks. Anything from transportation setbacks to anxiety over new situations can make going to the gym or joining a rec team a seemingly impossible task.

Assisted living facilities and in-home caregivers alike can use a variety of emerging technology to encourage and facilitate exercise. For example, nursing homes have experimented — with positive results — by combining virtual reality with stationary equipment as a way to make stationary exercise more exciting and engaging.

On a far more accessible level, a simple and mainstream device like a Wii can provide safe, fun exercise through Wii Fit programs.

4. Manage Medical Information

Whether you’re a concerned child, parent or a professional facility, it’s important to store and track a patient’s information in one central location. Professional facilities, in keeping with the times, utilize electronic medical records and scheduling systems to keep all employees up-to-date on patient care.

For example, caregivers who work at long-term care facilities might have access to information dashboards that streamline everything from appointments to billing to prescription tracking.

Personal caregivers, like friends and family members, can use a variety of apps and tools designed to help track information related to a dependent’s medical care. These tools can range from providing reminders to take or refill medicine to acting as a one-stop hub for all important medical information.

5. Navigate Impairments

Whether it’s hearing, visual, speech or other impairments, there’s a good chance some innovative techie is working hard to come up with an app or tool to help make life a little easier. There are already plenty of apps designed to help people with physical or mental disabilities better navigate the world. Some of these innovations include speech-to-text apps to help the hearing impaired enjoy phone calls or help the less dexterous send emails without typing. There are apps to magnify text for visually impaired or amplify conversations for the hearing impaired.

6. Ensure Safety

It can be difficult to balance safety with independence. Take elder care, for example. You want an aging relative to enjoy the emotional benefits of staying in their home as long as possible, but you don’t want to worry about them falling and injuring themselves or leaving home and getting lost.

Plenty of emerging tech helps caregivers navigate that tricky relationship between safety and independence. Solutions range from:

  • GPS tracking accessories for Alzheimer’s patients
  • Apps that alert caregivers if there hasn’t been movement for a significant period
  • PERS (Personal Emergency Response Systems) that lets users call for help with the push of a button

7. Provide Support

Being a caregiver is never easy. Even on the best days, there are worries and setbacks, fears and questions. But thanks to the wonders of the Internet, support is only a click away. It can be difficult to find a local support group for your specific situation, but the Internet is home to thousands of blogs, message board and support sites that connect people with shared life situations, no matter the physical distance. Not only do these sites provide emotional support, they also enable users to share research helpful information.

Keep an eye out on the app store, run a Google search or talk with a doctor to learn more about the technology available to help serve your loved one’s specific needs.

Image by Freestocks.org

3 Things to Know about Caregiving Youth During the Holidays

3 Things to Know about Caregiving Youth During the Holidays

In the United States, there are at least 1.4 million children and 5.5 million young adults who provide unpaid care to family members with disabilities, mental illnesses, injuries sustained through military service, and substance abuse issues. Here’s what you need to know about their lives during the holiday season:

Cold weather may exacerbate the physical health conditions of their loved ones, meaning both the worries and caring duties of caregiving youth multiply. As caregiving youth are home for longer periods of time with no school to attend, caring duties may increase and intensify. Young adult children may come home from college and find themselves expected to take on more care provision. When children and parents share in providing care for a sibling or grandparent, parents may be tempted to delegate more caregiving responsibilities to the children so that they may have some respite. Remember that children will want a chance to unwind after a busy school term. Give them space to read a book, watch television, and spend time with their friends.

In addition, keep in mind that the notion of a “normal” holiday season is always relative for caregiving youth—things can change instantly. This can be a time of instability, particularly for those youth caring for loved ones with mental illnesses or substances abuse issues. If the holiday season triggers a depressive episode or heavy substance use,

for keeping the household running.

Money, Money, Money. It is important to understand that there is an intersectionality issue at play between poverty, disability, and caregiving. Caregivers, young and old, as well as those with disabilities, are more likely to be living under financial strain or affected by poverty. It can be financially difficult for parents to keep up with all of the holiday parties and the gift giving that lasts all through December. For many caregiving kids, a parent’s money woes can trickle down to being their money woes. The stress barometer of the family household may rise immensely when parents are worried about the additional pressure of providing gifts for the family, along with making ends meet. Kids can easily pick up on the added tension in the home. If you’re a parent, give yourself some grace this holiday season and don’t feel like you need to do it all. If you’re a teacher, sports coach, or club leader, be mindful of finding ways to celebrate that are cost-effective and inclusive.

They experience a diverse range of emotions. Sometimes frustrations can mount when they realize their holidays at home are not the same in comparison to their non-caregiving peers. The visits of extended family members during the holidays may also serve as an unexpected source of frustration. In a recent interview with a teenage caregiver, I was told of the annoyance felt during her aunts’ holiday visits. Her aunts would pester her about cleaning her room. Knowing she provided around-the-clock care for her grandparents every day of the year, she found their questioning condescending. It’s critical to be aware that in many instances, caregiving youth are not only the “experts” in their family members’ care, they also serve as managers of their households. Be sensitive to the shifts in family dynamics that may occur when out of town family members come to visit.

Like adults, caregiving youth are also susceptible to the dark days of winter. Be watchful for signs of depression, particularly for those under high stress or grieving. Finally, remember that

Spending extra time with their families can be reassuring and comforting for them. For caregiving youth who have experienced loss, this is the perfect time to either honor old traditions or create new ones.

***

If you’re looking for ways to help, donate to the American Association of Caregiving Youth, the first and only national organization dedicated to supporting children with caregiving responsibilities.

This article was originally posted at The Huffington Post.

Thoughtful gifts for family caregivers

Thoughtful gifts for family caregivers

It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:

Your time.

We’re hoping you’ll call and say:

  • You’re free this weekend and would love to keep an eye on mom.
  • You can take her to the doctor’s the next few appointments.
  • You’re running to the store and would be happy to pick up whatever I need.
  • You’re going to come mow the lawn this week, so what time works for me?

Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.

Coloring books

From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained

 

Helpful guides

There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.

Inspiration and affirmations

We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.

Time for introspection

Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.

A great companion gift is the promise to help out for an hour or two every week to give them time to write.

Peace of mind

Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.

Time together

Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.

A good rest

It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.

Daily support

We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.

Practical help

I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.

If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.

perfect gift for family caregivers

Why You Shouldn’t Wait Until ‘Something Happens’ to Find a Caregiver

Why You Shouldn’t Wait Until ‘Something Happens’ to Find a Caregiver

Looking into future care options for an elderly loved one is often approached from a negative perspective. However, planning for future care needs can be a surprisingly reassuring process. It’s something to be taken positively, as a safety net that you can put in place in the event that something was to happen. The key is to educate yourself and your loved one before that time comes.

While it might be a just-in-case scenario, finding a caregiver or caregiving community for your loved one shouldn’t be brushed aside. All too often, family members or older adults themselves hang back from exploring options in senior care, but this process is better investigated sooner rather than later.

The ideal time to explore these options is when your loved one is healthy. They shouldn’t take place after something concerning has happened.

Plan Just Like You’ve Planned for Other Life Events

Most people plan ahead for major life events, and the reason is simple: these events require planning to go well!

Oliver Hazan, Vice President of Sales and Marketing at the continuing care retirement community Cross Keys Village, points out that arranging care for loved ones before something alarming happens has benefits that go beyond even peace of mind:

“The services and the lifestyle that are available in a good retirement community can actually slow down the effects of aging on most residents. Proper nutrition, regular and enjoyable physical exercise, and stimulating social interaction will – so to speak – turn back the average senior’s odometer.”

Furthermore, Hazan says that families who wait until care is needed may unfortunately have fewer options:

“Many communities have a one-year or longer waiting period before the perfect apartment or cottage becomes available, and most villages also have a medical qualification process, requiring your doctor to sign off and vouch for a degree of wellbeing before you are approved to move into an apartment or a cottage. (This is for your protection, as no reputable village would knowingly set residents up to fail in their new surroundings due to mobility or memory impairment).”

Senior care, and the care for any loved one, is too important to be left to the last minute. No matter what form of care you’re looking at, be sure to ask questions and find out the parameters thoroughly before you need them.

Explore Options at Your Leisure

Because of the multiple options available in seeking care for your loved one, the more time one has to read about them and think through them, the better. Are you thinking of hiring an at-home caregiver several times a week? Full-time? Considering a CCRC?

Call around to find out which caregiving style or organizations meet the criteria. Then, it’s a good idea to meet with caregivers or their agencies, visit CCRCs and other care options and ask questions. Ask for brochures on their services and activities.

“Gathering information about senior living should a joyous occasion, full of anticipation,” says Hazan. “It ought to be done leisurely, over months if not years. Doing it in a rush, while stressed and possibly sleep-deprived after ‘something happens’ is not something I would wish on my parents or anyone else’s.”

Move From Worry to Enjoyment

Seeing the benefits of planned future care can make all the difference in your loved one’s life. The pleasures of an improved or new environment, combined with freedom from worry, can itself make an older adult feel more relaxed and able to focus on life’s small enjoyments.

Why wait for something bad to happen when you actionably plan for a better future?

Image by Jake Thacker

Senior Living: What Medicaid pays for…and what they don’t

Senior Living: What Medicaid pays for…and what they don’t

As you age, you want know that your health needs will be taken care of. There are a number of unique costs associated with aging, particularly when you progress to a point that you can no longer care for yourself in your home. What can you rely on Medicaid to pay for you, and what will you need to plan to pay for yourself?

Nursing Home Care

Most states have a Medicaid plan in place that will help pay for nursing home care. While you will have to meet income and asset requirements as well as require these long-term care services in order to qualify for Institutional Medicaid, Medicaid coverage is the ideal way to pay for a nursing home for many aging individuals. In some states, like New York, there is an asset limit and no income cap, but since Medicaid is a joint federal and state program and hence the rules vary considerably from state to state, be sure to check the regulations in your state. Once these state requirements have been met, you’ll be able to choose from a list of Medicaid-approved nursing home facilities.

Assisted Living

In some states, Medicaid will also cover a stay in an assisted living center, as part of Community Medicaid. The first requirement is that you need the level of care offered there—that is, that you are no longer able to care for yourself in your own home. Assisted living facilities are often less invasive and provide fewer medical services than a nursing home, so for many aging adults, this is an ideal solution.

Retirement Communities

Retirement communities are designed with areas for elderly individuals who are still able to live independently alongside those who have the need for a higher level of care. Unfortunately, Medicaid does not cover the cost of living in a retirement community for those who do not have a medical need for services rendered.

Home Care

If you’re still able to remain in your home with a reasonable level of care, home care might be a viable option for you. By working with Medicaid, you can receive a variety of home-care services, including meal delivery, help with daily tasks, and other necessary services. Each state requires that those who are eligible for Medicaid make less than a predetermined amount per month and any income above this cap will render the individual ineligible for Medicaid assistance. In some states—like New York, for example—income above the state limit do not automatically render the applicant ineligible and excess funds can be placed in a pooled income trust to be used for specific expenditures. The rules and regulations can get complex and it is often advisable to reach out to a Medicaid professional in your state or to educate yourself fully.  

Adult Day Care

In some cases, you might find that you’re able to remain home due to the care of an adult child or spouse, but that you’re not able to be at home alone during the hours when they’re at work. That’s when adult day care is highly beneficial. You’ll receive the services that you need during the day while interacting with other individuals in your age group, and at the end of the day you’ll return to your own home. In New York and New Jersey, if you meet the requirements for Medicaid, you are eligible to have it pay for this service.

There are a wide variety of programs available to care for your needs as you age. While it may at first be difficult to navigate, over time you’ll discover what works best for your unique situation.


Benny Lamm is a communication specialist and blogger. He enjoys playing the guitar, spending time with family and social networking.

How Relatives Can Spot Financial Exploitation of Seniors

How Relatives Can Spot Financial Exploitation of Seniors

When an individual is unable to manage their finances alone due to age or disability, it’s necessary for someone else to step in and help. All too often, unfortunately, financial abuse results from those interactions. In 55% of cases of financial exploitation, family members and caregivers with high trust levels are the culprits. In cases of investment fraud, losses can be even higher. While you can’t guarantee that your loved one won’t be the victim of financial abuse, understanding how it occurs and how to prevent it can help keep your loved one safe.

Who Commits Financial Abuse?

There is a wide pool of individuals who have been responsible for elder abuse. Anyone can be guilty: family members, friends and acquaintances, neighbors, and caretakers are high on the list, but professionals, attorneys, bank employees, doctors or nurses, and even pastors can be responsible for financial abuse of elderly individuals. In other cases, predatory individuals and con artists come after the senior without their loved ones’ knowledge.

The Most Common Scams

The most common scams are divided according to the individual responsible. By being aware of them, you can increase the odds that you’ll be able to prevent your loved one from being impacted.

Family Members often use power of attorney or joint bank accounts to allocate funds as they feel appropriate, rather than in an elderly loved one’s best interests. They may create a deed or title transfer in order to shift assets to themselves or to someone that they control. In other cases, living trusts and wills allow them to use money they want. They may deny services to conserve funds for their own purposes or threaten to abandon or harm the victim if they don’t use the money the way they want. More simply, family members and other close acquaintances may take the senior’s money, property, or valuables. They may take ATM cards, steal checks, or borrow money and not pay it back. Cashing social security checks or giving away the elder’s money or possessions without their consent are often common among family members.

Unscrupulous Professionals frequently use predatory lending, annuity sales, or investment or securities schemes to take money from unsuspecting seniors. They may use internet phishing or identity theft to steal from the senior. Medicare scams and in-home care scams are also particularly common.

Predatory Individuals use lottery and sweepstakes scams, grandparent scams, charity scams, and telemarketing scams to target elderly individuals who aren’t prepared to protect themselves. They may attempt a home repair scam in which repairs are sold, but never completed or aren’t completed well. Traveling con men also frequently target seniors. Another common ploy criminals use to defraud unsuspecting seniors, is by gaining access to a blank or canceled check and then proceeding to syphon funds out of the seniors account—especially if checks do not incorporate security features that help combat alteration and counterfeiting.

Indicators of Abuse

One of the first signs of abuse is unpaid bills that should have been taken care of by the individual in charge of a senior’s finances. This also includes seniors who are suddenly unable to pay bills that they should be able to cover on their usual income. Termination of utilities, appearance of property liens or foreclosure notices, collection letters, eviction notices, and other notices of discontinuation of services should all be red flags. A quick look at the kitchen cabinets is also a great way to identify abuse: when a senior has no food in the house, it’s a sign that something is going wrong.

Next, examine your loved one’s accounts. If there are large withdrawals that they can’t explain or transfers between accounts that don’t make sense, it’s a strong indication that financial abuse is occurring. If bank statements and canceled checks no longer arrive at the senior’s house, it’s important to find out and understand where they’re going, locate them, and keep an eye on the accounts. Unexplained withdrawals, especially large ones, are a red flag. Frequent transfers or unusual account activity are all indicators that financial abuse may be occurring.

Make sure your loved one fully understood legal documents at the time they were signed. Power of attorney documents that weren’t understood at the time of signing can be a sign of financial abuse. If oversight of their finances has been transferred to someone else without an explanation to the senior or their consent, their wills or estate documents have been changed, or there’s an absence of documentation about financial arrangements, you need to look deeper into their finances. Keep an eye on any sudden addition of a name to an account or joint accounts that have been opened unexpectedly.

Keep an eye on the actual expenses your loved one has versus the amount they are spending. If the cost of their care doesn’t appear appropriate for the size of their estate—for example, there are large withdrawals for in-home care or nursing home care that aren’t appropriate to their current finances—it might be time for a closer look. Listen to the explanations given by the individual in charge of their finances. If they seem implausible, you need to dig deeper into their story.

Watch your loved one for any signs of abuse. If they show sudden changes in their mood or demeanor or signs of fear of their caregiver, it’s a sign that something is wrong. Make sure the senior shows an understanding of financial arrangements that have been made for them, and make sure they aren’t evasive concerning those arrangements.

Other telltale signs of financial abuse may include suspicious signatures on checks and documents, the sudden appearance of new “best friends” who are suddenly members of the trusted circle, or missing belongings or property. Keep an eye out for excessive use of credit cards, especially use that isn’t normal for the individual. If a caregiver suddenly expresses excessive interest in the amount of money being spent on the senior, it warrants notice.

Addressing Financial Abuse

Keep in contact with the individual in charge of your loved one’s finances and anyone who has access to them. Hold regular money meetings so that everyone understands where the money is going. Encourage the senior to spend more time with elderly neighbors and relatives to reduce their isolation and ensure that they don’t feel alone. This is particularly necessary if financial abuse has already occurred.

Once financial abuse has occurred, close any joint accounts. Revoke power of attorney. Find a responsible person or agency to put in charge of handling financial transactions for your loved one. It’s also necessary to report issues to law enforcement and work with them and the bank in order to reduce the odds of financial abuse.

If these scenarios seem familiar, it’s time to speak up! Seniors should be protected, and they should never have to tolerate being financially abused by anyone—especially those closest to them. You can’t guarantee that your loved ones will never experience financial abuse, but awareness is the key to prevention.

By Noel Morgan

Things NOT to say to a caregiver

Things NOT to say to a caregiver

Someone you know has recently taken on caregiving responsibilities. You want to show your support, but you aren’t sure what to say? Here are some tips on what not to say and suggestions on how to be supportive.

I hear a lot of these comments from people who probably should know better; I attribute it to them wanting to help, but not having the correct vocabulary, similar to when someone passes away. They want to commiserate, show empathy and affection, but don’t understand what to say or do. It’s okay. I’m far from perfect, too, and have said dumber things in my life. We live and learn and do the best we can. – Dean P.

What not to say

“The worst things I heard while care giving were, ‘Everything happens for a reason and God doesn’t give us more than we can handle’…also, ‘It won’t last forever’, no, it won’t but, that means my mom will have died and that’s not really a comfort.” – Odilia S.

I hate it when people say “I don’t know how you do it.” I suppose that’s meant to be some kind of compliment, but what I hear is “I sure wouldn’t want to deal with what you have to.” – DeDee M.

Don’t tell a caregiver with a sibling that will not lift a finger to help, visit or call his mother that the sibling should be let off the hook because “he had a difficult upbringing.” Don’t these people realize you grew up in the same house with the same screwed up parents? – Debra H.S.

Any comment the begins with “just be glad…” – Tammy H.H.

“You’re just a caregiver, you don’t have a real job?” – Debra R.

I hate it when people ask me what I do all day. I am a caregiver and it isn’t easy! – Kim P.

People ask some very personal questions. I don’t know when it became okay to talk about my husband’s hygiene and sex life, just because you’re curious. I just roll my eyes when people inquire. – Mandy L.

Don’t tell them not to worry because their loved one won’t be around forever. – Elizabeth M.F.

My pet peeve is when people comment, “I know just how you feel!” Reality is you can’t possibly know how I feel unless you live the EXACT same life I have. Even if you are an only child caring for your mom with TBI/Dementia and you pulled up stakes to take care of things…you really don’t know just how I feel. – Cameron G.

“You’re not working outside the home, so you have PLENTY of time! I’m just too busy ’cause I’m single and have to do everything for myself.” – Jeannette B.L.

“[People said] my mom was selfish for continuing to live on so I can continue to take care of her. That was the most hurtful thing I had ever heard. I cry and my heart breaks every day. My mom passed from breast cancer this past Feb. I took care of her until her last breath. I would do it over and over.” – Helene B.

So, what should you say?

Words are cheap…go over and help…drop by with a treat…vacuum the living room…or sit with loved one..so caregiver can get out…the thing I prefer to hear…is from someone in same position..saying…I know it’s hard…because…it validates it somehow…the most helpful thing said to me at the beginning of this journey came from my best friend..who also cares for her mom with dementia…I was bawling from the range of emotions I was feeling…and feeling lost…she said…so you don’t recognize yourself…eh?…I was so relieved…that she had those feelings as well…I so needed that emotional support…no I didn’t recognize myself…and neither did she…and it was okay… – Beth S.

There’s a saying in Spanish (Quieres se murió. Toma lo mató.) that, translated, basically says: ‘Don’t ask, just do.’ Don’t ask me to call you if I need a break. Ask me which day this week you can relieve me. – Maya S.

Tembi has other suggestions for how to make a caregiver’s day over at The Kitchen Widow.

A Graduation Ceremony for the Rest of Us

A Graduation Ceremony for the Rest of Us

A Graduation Ceremony for the Rest of Us

Each year, I have the rare privilege of having a front row seat to one of the few respected rituals in contemporary life: college graduation.  It’s beyond unfortunate, however, that we don’t ritualize life’s other markers beyond graduation.

In honor of life’s often overlooked but life-altering transitions, here’s what a ceremony for caregivers might look like . . .

What Are We Honoring? 

Our ceremony will honor our willingness to respond to life roles that we were drafted into—unexpectedly.   That’s right, the roles that called us to care that didn’t occur within our expected time frames and didn’t conform to our plans.  These care roles weren’t the roles that we spent our lives sculpting our resumes to attain.  Explaining care doesn’t go over well at parties—trust me, I’ve tried—because people don’t know how to respond. Care isn’t a position. It’s not a company. There are no promotions.  It’s not a bucket list item.  These life roles came at us, whether we were ready or not.

Honoring care authentically means none of us would individually walk across a stage for a handshake and picture.  For our ceremony, that would be deceptive and impossible—we’d never fit everyone in the camera frame.  Invisible life transitions like caregiving are always social—our responsibilities and connections highlight how we are rooted in and grounded with others.  Our ceremony will call attention to the fact that our lives aren’t defined by other people’s beliefs about ambition.  No, our ambition isn’t neatly packaged.  It’s private and public, familial and stigmatizing, life-altering and life-affirming.  This ceremony will honor our willingness to walk not simply toward our goals, but also our willingness to open doors into people’s lives when few others would.

Who Would Speak? 

Commencement speakers are the celebrities of college graduations.  Carefully chosen and vetted, a person speaks for the graduating class.  An inspiring figure.  A public celebrity we’ve seen on television. A politician or sports figure that comes from afar to tell us about the art of living, armed with sweeping answers and clichés to rid of us of our uncertainty and tell us there is nothing really to fear because the world beyond is for the taking.

For our ceremony, we’d do things much differently.  Importing a national figure to talk about our everyday, lived experiences wouldn’t make sense to us.  When someone tells us they have the “answers”, we tune out.  We don’t have the energy or patience for such speeches. We’re not even looking for answers and we’re not keen on listening to others who charismatically clean up and organize our lives in fifteen minutes or less before heading out of town.  We’re used to messy—clean clichés wouldn’t work.

Instead, perhaps all of us in attendance would write out a line or two about our experiences and challenges, or draw a picture or create a tune, integrating our creations into a babble of voices and representations.  It would be noisy no doubt, but whatever is created would be connected to others’ creations.  We would be both creators and audience—our words and creations and images and sounds and presence would be our rousing anthem. Not a Katy Perry kind of anthem though. Unlike college graduates, we’re not waiting to be inspired. We know too well the expiration date of inspiration.  Our experiences tell us that inspiration without love and care and a commitment to others rings hollow.  I’m talking about an anthem of our own making that allows us to pause time long enough to mark our care transitions—however confusing—while surrounded by others.

What Would Be Said?

This is so very complicated because we know graduation speeches always include a brief shout out to the past and an unending preoccupation with what is coming, where people are going, and who they hope to become.

Our ceremony couldn’t help but be drastically different.  We don’t think like most college graduates—we don’t see ourselves as unbounded, floating in the wind of life.  Our roles connect us to those we love and care for.  Sometimes we feel our connections constrain us but we also know they are the life fulfilling necessities we wouldn’t want to live without. We aren’t free agents. We are social agents.  That’s what will be said.  And shared. And felt.  And celebrated.

Most people dream of where they will visit and what sights they might see and experience after graduation.  Grief.  Loss.  Anger.  Loneliness.  Silence.  These experiences are typically not invited to graduation speeches.  But these are the places we have visited and these are the places that have visited us.  They have compelled us to expose parts of ourselves we didn’t want others to notice.  They’ve made us vulnerable, inspiring us to endless self-questioning and doubt.  They aren’t glamorous destinations but they are necessary parts of our journey that shouldn’t be omitted because leaving them out would mean erasing vital parts of our experiences.  Let others edit their words of wisdom to only include inauthentic half-truths.  Not for our ceremony though.

What About Moving Our Tassel?

Today, during our celebration, we don’t need to mark our care transition with the ritual placement of our tassels because we are already marked.  We don’t have to tell people we are important by reminding them of the awesomeness of our yet-to-be-lived future.  We don’t have to strategically self-present like college graduates and tell the world what we think they want to hear.  Today, we are as we are. We are what it looks like in the midst of disorientation and resilience.  We are college students’ future selves.  The only difference is that for the first time, we can see and appreciate who is around us. We are no longer consumed with looking through people to find a glimpse of the future.  We can appreciate those around us—that’s right, you—for who we are now.  Yes, this is where we need to be, here—complicated.  Tangled. Connected. Grounded. Not out there beyond—but right here. Yes, right here. Not valuable for who we are going to be.  Valuable for who we are and what we are doing now.

Excuse me, but I think I’m going to stay here a bit longer.  Unlike a college graduation, I don’t have a party to attend.  Nothing to run to.  Not anymore.  Do you notice what’s going on?  People are still arriving at our ceremony. The seats around us are constantly being filled because there are no onlookers—no spectators or visitors—just participants engaged in this thing called living.  Stay with me here a bit longer, would you? I want to close my eyes and feel the presence of acknowledgment and shared struggle.  Grab a seat, there’s one right next to me.

Why is caregiving stressful?

Why is caregiving stressful?

Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?

Lack of help

By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.   

Endless tasks

My husband’s aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.  

Financial worries

Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.

Medical tests

Waiting for the results of medical tests can be nerve-wracking. Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.  

Anticipatory grief

Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.

Referral and aftercare

After being hospitalized for eight months my husband was released to my care. He was home a year and then referred to physical therapy. When therapists had done all they could, he was referred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.

“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages in Caregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.


 

Harriet is the author of numerous books, including Affirmations for Family Caregivers.

Stop telling me to take care of myself.

Stop telling me to take care of myself.

Self care — it’s easier said than done.

We’re always being told we should take better care of ourselves, but we rarely get the help we need to actually do that. Here’s how caregivers feel when they’re told they should put their oxygen mask on first:

Sometimes it feels like another criticism thrown at us. Yes, self-care. How dreamy that vision is. How easy that is for others to tell us that is what we need when we are already acutely aware of it. What I really think I would love to have and what I really think would be the most “self care” mindset…is having or knowing that someone ELSE is going to take care of me for a few minutes, even maybe take care of a task, or take one of my responsibilities off my hands for a little while. – Cathy S.F.

We all know we need to take care of ourselves. This is not news to us as caregivers yet everyone who offers this advice to us can’t seem to offer how to do that when the choice we have is “take care of me or take care of our loved one”. I’m going to choose my loved one every time. I think most of us are in the position that if it isn’t ME providing the necessary care, it’s NO ONE providing it and that is just not an option for our loved ones who require total care etc. We do our best to care for ourselves but it’s literally impossible to take time away from our loved one to do so…It’s not noble or martyrdom, it’s just reality, a fact of our lives. So we do our best each day, listen to the unhelpful “advice” from people who will never “get it” until they are in the same position, and continue to find moments in our busy days for our little and glorious bits of self care (while still taking the best care possible of our loved ones 24/7). – Kelly D.

Taking care of myself is looking for the best options and making sure my loved one is safe so I can sleep at night. Trusting others to help and care while looking for what other options are out there to help. The closest family is 10 hours away, so no family meetings or help. I don’t have the answers but I will continue to fight and learn. I am not trying to be noble, I just want what is best so I can sleep. – Julie D.

The suggestions are simply not doable for a lot of us – especially when you ARE the only living family member left, when you are already suffering from a debilitating illness yourself, when you can’t even take a walk around the block because there is no one to sit with your bedridden family member who cannot help themself and constantly has emergencies, etc. Way to put more unrealistic pressure on us that we must be doing it all wrong. It is what it is! – Lemia L.

via Facebook

How to comfort a grieving teen

Bridget Park is a high school senior from Reno, Nevada. Inspired by the tragic loss of her brother, Bridget wrote her debut memoir at the age of 15 in the hopes that her story would encourage others to find healthy ways of grieving. In this talk, Bridget shares her insight on how to comfort a grieving teen.

Seize the opportunity: 6 Things to do with Nana and Papa

Seize the opportunity: 6 Things to do with Nana and Papa

It’s more than simply a case of mind over matter: a senior citizen who is active and happy tends to have innumerable health advantages over one who is reclusive and idle. A healthy senior is one who feels well-loved. “Studies show that older adults who have consistent social interaction and strong interpersonal relationships are likely to live longer with fewer illnesses than those who feel isolated and lonely,” said Janet Alonzo of Continuity Care Home Health Agency.

Any day is a perfect opportunity for families to show the senior adults in their lives just how much they care about them. It’s also a chance to nurture a lasting bond between grandparents and grandchildren — while giving their primary caregiver a much needed break.

Alonzo suggested six ways, big and small, to help seniors connect with their families:

Share a Meal.

Not just any old meal. Serve some of Grandma’s own well-loved recipes, or, better yet, have her supervise the cooking process. Teaching grandchildren how to make a family favorite casserole or pie is a priceless memory, said Alonzo.

Extra points: Create a set of placemats in advance for the occasion using construction paper and copies of family photos, both old and new. Slip them inside clear plastic sleeves, available at an office supply store, for easy cleanup.

Help Gramps Go High-Tech.

Some seniors are intimidated by technology, said Alonzo, but often all it takes is a short one-on-one tutorial from their tech-savvy grandchildren to make them feel comfortable. Grandkids can help them set up instant messaging, a Facebook or Instagram account, or practice basic texting so that grandparents can keep in touch.

Extra points: Show grandparents how to use Google Hangouts so they can “meet” with all the grandkids at one time and chat online. Or sign them up for one of the growing number of family-centric online services, such as Panasonic’s HomeTeam, where, for a membership fee, grandparents and grandkids can play online games, read online books and message together.

Take a Drive Down Memory Lane.

Alonzo said that one of the keys to preventing depression in the elderly is getting them out of the house and their same old routine. She suggests taking grandparents on a field trip to the home where they grew up, a school they attended or other memorable spots from their youth. The stories generated from such a trip could be priceless.

looking through a photo album togetherGet to the Root of Things.

Break out the old family photo albums and enlist Grandma’s help in labeling them on the back with informational notes so that grandkids can put names with faces. Create a family tree by filling in the blanks on a printed template, or use a genealogy website such as Ancestry.com. Grandkids can conduct “interviews” with grandparents about their lives and record them on video or audio.

Sometimes Simple is Best.

Even if Grandpa is not into technology, families who are separated geographically can still make the day special. “Sometimes a good old-fashioned phone call or a handwritten letter is a precious lifeline.” Alonzo said special packages containing a hand-drawn poster or homemade book from the grandkids are especially prized, because of the love and care that went into making them. Grandparents can post them in prominent places and refer to them again and again.

Above All, Make the First Move.

Alonzo stressed that, even if people are not especially close to their parents, there is no better day to take the first meaningful steps toward a stronger relationship. “When you open the door a little wider, you are also making it possible for grandparents to share more special moments with their grandkids. And that could be the best health boost you could ever give them.”


Continuity Care Home Health Agency, LLC is a family owned and operated, fully licensed agency that is Medicare certified and JCAHO accredited, providing skilled in-home nursing care and rehabilitation as a result of an injury, stroke or other condition and serving Kingwood, Humble, Spring, The Woodlands and Houston area populations with compassion, dignity and respect. For more information on the agency or its services, please visitwww.CCareHomeHealth.com or call 281-348-2328.

Let’s team up!

Let’s team up!

By Ann Fry, MSW

I’d like to discuss the needs of the cancer patient and the provider of their needs as a “team.” In other words, how do you really work together on this project we can call CANCER or “The Big C”?

First and foremost, let’s declare you are in this together — the patient, well, it isn’t choice — he/she has cancer. But, the caretaker “chooses” to be there and to help and to care for the other. Perhaps it’s obligation because of marriage vows or parental or child responsibilities. However, they choose to stay and help as they can. So, how can we turn this into a team effort?

Second, let’s not think of it as a team, but let’s actually BE a team.

I work with corporations, coaching their managers and their employees to work together to make a better corporate culture or environment. I help all the pieces of the pie figure out what it takes to be a better team. I want to use that knowledge to help you here.

Here’s a question to pose to yourself:

What does it take to be part of a team or to BE a team?

Stop reading this and write down some responses.

Now, that you’re back to the article, let me describe some of my answers:

  1. A cooperative unit
  2. People involved in some joint action
  3. Collaboration

For a sports team to work, people DO have to join together, cooperate, go after a common goal.

The same can be said for a family team, and thus for a personal team working towards their common goal. For our purposes, we are using dealing with the Big “C” together for the well-being of you all.

You might not be punting, or running for the goal or might not have a ball or a stick in your hands, but you are moving forward, hoping for an outcome that is favorable and that you can all agree to and put energy towards.

With that definition, ask yourselves, what are our goals?

  • Do you want the cancer to be gone?
  • Are we willing to face the scary parts together for the ultimate goal that it will “knock off” the cancer?
  • Can we keep each other on track?

Here’s an example of excellent teamwork from a husband and wife team I know well. She had brain cancer, which then spread to the need for stem cell treatment. Whether earlier in chemo OR during the time she was in modified isolation, he was always there. He slept in the chair in her room every night, so when she awakened, he would be a familiar face for her. When she was in isolation, he had a full couch in her “suite” and would sleep there with his mask, gown and gloves. Now, in order for that to happen, he had to get team support from his grown kids. They had to take care of the pets at home, bring things as needed. He also needed to get support and “buy in” from his workplace. They allowed him to set up his computer and work remotely from the hospital.

She is now, home, still in semi-isolation. He is able to go physically to work now sometimes and they are advancing in positive ways.

I invite you to discuss with each other what your purposes are for your team, where you want to go with it, what you want your outcomes to be.

Remember, that alone we can do only so much… but together, we can do so much more!

Why we cancel plans

Why we cancel plans

We all have a friend or two who’s constantly bailing on plans at the last minute. Or showing up late. Eventually, we give up and stop bothering to invite them.

But what if that friend isn’t just flaky. What if they’re staying home to watch their little brother who requires 24/7 care? Or a grandmother with dementia? Or a parent going through chemo? If you’re not sure what’s going on with your friend, here’s where to start. So often people are afraid to ask their friends for help or burden them with their problems. Reach out to the people you care about when they start to pull away.

Serving as a caregiver, at least sporadically, seems to be a nearly universal task, yet so many people don’t seem to understand what it’s like. Being a long-term caregiver to someone with significant needs is very different from a parent caring for an ill child for a week or two, but it’s more socially acceptable to cancel plans for a kid with a cold than a chronically ill spouse.

We asked people who help regularly how they felt about canceling plans. Nearly universally, caregivers wish they could get out and see their friends more. Even if they can’t, they appreciate being invited.

Helping to make it easier for them to attend — by choosing plans they could bring their loved one to or helping to find someone to provide care — is very much appreciated. There are lots of simple ways to lend a hand and help them free up some time.

It’s not because I don’t want to go out; it’s due to me being exhausted from being a caregiver. – Lorne S.

I’m scared to make plans because I’ve had to cancel or back out of so much! – Sue A.

Even if you do go, you feel guilty, afraid “something” will go wrong if your not there. – Paula H.

I always say it’s easier to get baby sitters for a toddler than it is for a disabled elderly adult. – Delyth E.

My husband’s condition means not making it to all sorts of things. It’s just how it is. Given the choice between being able to go to all those events or having the life I have with my hubby, I’d choose him every time. – Helen C.

I actually can make it to lots of things but just have been dropped due to everyone thinking I can’t with my mom on hospice. – Doris S.

It’s hard to make plans anymore or go places because I’m tired all time and can’t get any of my so called family to help. They always have excuses after excuses. – Karen J.

It’s frustrating to not be able to go and I’m sorry that I can’t. But it’s good to know that people are thinking about me enough to invite me. – Ryan E.

I’m so accustomed to an emergency trumping any plans that I rely on buying opera/theater tickets from a season ticket holder at the door, I never want to carpool with other people, and pre/post event dinners are like my vacation: something I haven’t done since 2002. – Yenelli A.

My friends haven’t had to help anyone. Sometimes they think I’m just blowing them off. – Tim H.

I often feel like I’m letting people down, that they will in fact cease inviting me because I seem uninterested or at worst unreliable. I want so badly to attend and mean to go, but if my husband needs me I must decline. I fell bad, but I can’t leave him when he needs me. – Karen B.

People get upset with you when you can’t attend an event, even though that event is exactly where you would love to be. – Marlene M.

Even though my husband can stay alone, I feel guilty if I’m gone too long…it’s always something. I love him very much! – Susan L.

I respond with “I presently can” as my calendar is a moving target. – Julie D.

Both my husband and I are caregivers at work and at home and there is never enough time to just be by ourselves. – Barbara M.

Somehow, some way one MUST find a way to take care of themselves…to take a break; to restore some semblance of balance and space. Consider yourself equally important to the one who needs your care. Ask for help. – Marlene A.

I get so lonely at times. I see my pals out having fun and wish i was with them or just able to leave but not enough money or time. – Adriana E.

As a professional caregiver, my plans often pushed back due to staff absenteeism. I need to provide coverage on short notice. – Lotomai T.

I can’t remember the last time my husband and I did anything just the two of us. – Joy Z.

We miss out on a lot of things but family comes first. Please don’t give up on me. – Marcie K.

5 great ways to help (without being asked)

5 great ways to help (without being asked)

Are you eager to support the caregiver in your life, but aren’t sure what to do?

Here are 5 of the best ways to help:

  • If you live in the area, offer to pick up some groceries for him or her when you’re doing your shop. This kind gesture can be an enormous help and it won’t make the caregiver feel like you’re going too much out of your way if you say you are going to the grocery store regardless.
  • Call a couple of times a week to let the caregiver know that you’re thinking of him/her. This phone call will allow the caregiver to vent about the frustrations and difficulties of the day that s/he may be holding inside. Don’t worry about saying something to make it all better. Just lend an ear! Express your sympathy by acknowledging the stressors of daily caregiving and remind them of your support.
  • Offer to make dinner for your friend/family member one night. This will be a great way to spend time catching up and relieve the caregiver of one less thing to worry about. Alternately, invite the caregiver to go out to dinner at a nearby restaurant. Dining out can be a mini-vacation for a caregiver! When in doubt, always ask what the caregiver prefers to do and voice that you would be happy with either plan. Or you can have a healthy and delicious meal delivered right to the caregiver’s doorstep!
  • Spend the day learning the basic care the caregiver provides for his/her loved one and help in anyway possible. Not many people understand a caregiver’s role in a sick or aging loved one’s daily life and it will mean a lot to both the caregiver and the cared-for that you took the time to learn. When the caregiver needs a weekend to rest or even an hour to spend some time alone, you can look after the cared-for loved one.
  • Find out what the caregiver needs. Maybe it is something that will make caregiving a little easier, like a bath bench or a subscription to a delivery service. It might be something thoughtful for the caregiver, like a massage or spa service. Ask other family and friends to give! Anything that you give him/her will be appreciated. Start looking with a curated selection of gifts just for the caregiver.

 

Quick and Dirty Tips for supporting the caregiver in your life

Quick and Dirty Tips for supporting the caregiver in your life

The folks at Quick and Dirty Tips have a treasure trove of knowledge on all sorts of topics. We’ve gathered together their best advice on how to support caregivers and their loved ones.

3 rules for visiting someone who is ill

How to respond to important emails

6 ways to improve your empathy

How to improve listening skills

How to keep in touch with friends

How to talk to someone coping with death and loss

What to say when someone dies

When a coworker has a death in the family

Want to get an idea of what caring for a seriously ill person involves? Check out their guide to caring for someone with a serious illness part one and part two.

Your Help to a Caregiver is Far More Valuable than Well-Meaning Words

Your Help to a Caregiver is Far More Valuable than Well-Meaning Words

“Yes, I know how difficult this can be.”

“I can see that your life will have changed dramatically.”

“I understand.”

When serving as a co-caregiver for both of my aging parents, I heard these, and many other similar statements routinely from others in my social and professional circles. While I was confident (and remain so) that these individuals were sincere and meant well, I have to question how much they truly understood the entire scope of what I was experiencing.

Caregiving can be a physically, mentally and emotionally draining job. Caregivers can be easily run ragged with new responsibilities. During a single day, a caregiver may meet with medical professionals, advocate on a senior’s behalf, provide transportation for an aging parent, cook meals, clean a senior’s home and/or arrange for homecare support.

At night, a caregiver’s mind does not shut off.

He or she may toss and turn in bed and be unable to sleep soundly due to worrying about a loved one’s condition. Insomnia becomes a caregiver’s worst enemy. With remembering my own caregiving experience, there were many days when I was continually on the go and trying my best to manage.

I believe the only people who truly understand what caregivers endure are the people that watch and hear of the work of caregivers (ex. healthcare workers; professional psychologists; counsellors) and, most especially, other caregivers.

If you have never walked in a caregiver’s shoes, how can you honestly say, “I understand”?

Don’t get me wrong – caregivers want and need support. I, for one, certainly appreciated all the help that came my way when Mom and Dad were alive. Even years after both my parent’s passing, I continue to believe that caregiving is not an individual endeavor but best achieved with many hands. Please, however, resist making broad generalizations with caregivers. Instead, consider how you can help – even on a smaller scale. A woman I know visits a blind woman on a weekly basis and reads her mail. This act may sound small, but the gesture goes a long ways as, without sight, the blind woman will have no idea of required payment amounts on her monthly bills. Perhaps you could offer to pick up groceries for a caregiver or shovel his/her sidewalks clear of snow? Or perhaps you could give a caregiver your undivided attention over a cup of coffee where you turn off your own cell phone and simply listen?

Considering our country’s demographics and rapidly-aging population, chances are high that you will become a caregiver yourself at some time in the future. It is likely then that you will best realize what a caregiver actually goes through. A sympathetic shoulder can be a great thing; however, saying “I understand” when you don’t will be only empty words.

Resist talking the talk until you have walked the walk.

Replace “I understand” and ask “How can I help you?” instead. It will be far more appreciated.

5 ways to deal with a friend who’s always busy

5 ways to deal with a friend who’s always busy

Quarterlife comes with a ton of obligations – from our day jobs, to work events, engagement parties, weddings, and family occasions that fill up our calendars. If you have a friend who’s overwhelmed with these responsibilities, and has been too busy to set a time to meet up, here are five things you can do to get your friendship back on track — courtesy of our friendship expert, Nicole Zangara.

1)  Take action! 

Call up your friend and get out your planners, open your google calendar, get a post-it note — whatever you use to manage your schedule, set a date and time to make this happen.  Go as far as to schedule what you will be doing, and block out enough time for that event, whether it’s a movie night in or dinner and drinks.  When you both can agree on a date (even if it’s far, far in the future) you’re both committing to that day and time. Rather than giving or getting the excuses, you have something planned, and have given your word to each other that you’ll try your best to keep it.  Hey, our parents scheduled playdates for us, so jump on the bandwagon!

2) Check in with your friend to see if everything is okay.

Is there something going on in his or her personal life? A recent breakup or family issue could be to blame for your friend’s absence. Maybe she’s overwhelmed, and doesn’t even realize how unavailable she’s been.  Ask how your friend is doing, and see if they need some time to talk about all the stress that they’ve been dealing with. As hard as it may seem, don’t take this absence personally. We all get busy and unfortunately, our social life usually gets hit first, since it may not be the highest priority at that time (versus job and family responsibilities).

3. If your friend is always busy, and this friendship means a great deal to you, then it’s time to have a talk.

Not over text or over email, but an actual face-to-face, one-on-one conversation, sans technology, to talk about your friendship.  Tell your friend that you miss spending time together, and that you’re feeling hurt and sad that they are always busy.  Let your friend know that you value the friendship, and you want to be a part of his or her life, and vice versa.  Ask how that could be possible, discuss ways and agree on how to better keep in touch.

4. If the friendship isn’t worth your time, take a step back and evaluate whether this is worth getting upset over.

Do you keep trying to make plans with this friend, and get nowhere?  You shouldn’t be working harder than your friend, so if you’ve attempted numerous times to talk to her and to check in, move on and find some friends who value your time as well. Chances are, if she’s doing this to you, she’s doing this to everyone, and that says a lot about her character.

5. Something to note is that this situation is somewhat normal in terms of getting older.

Maybe you and your friend work opposite work schedules (the night shift versus the normal 9 to 5), or you have to do more traveling on the weekends when your friend has weekends free. Or your friend is working while attending graduate school, so her time is limited.  As we get older, we have more responsibilities and more on our plates, but it’s important to establish a balance.  We need to make time for our friends, even if it’s a check in, or a text that sends the message that you’re thinking about your friend, with an apology for being so busy. You may not be able to change your schedule or how busy you are, but you can at least let your friend know you’re thinking about her, and that you’re looking forward to your next scheduled get together, whenever that may be.
If you’re the busy one, check out our tips for how caregivers can prioritize friendships.
This article originally appeared on ThisIsQuarterlife.com
8 gifts for the caregiver in your life

8 gifts for the caregiver in your life

It can be difficult to show your support, especially when you’re far away. Here are ways you can help your friends and family who are providing hands-on care and remind them how much you appreciate what they do.

Of course, I encourage you to ask the caregiver what they want. However, sometimes it’s difficult to articulate what you need. Many caregivers have been let down before and are hesitant to ask for help again. Show them that you’re serious about helping by starting off with these ideas.

Provide respite care

Coming over for a few hours yourself or providing a gift certificate for a few hours of respite care is a wonderful way to show them you understand how hard they work.

Take care of the paperwork

Taking care of bills, managing insurance claims, and other paperwork can be incredibly stressful and time-consuming. If you’re a long-distance caregiver, taking responsibility for financial and legal tasks is something you can do from afar that will be greatly appreciated.

Transportation help

Can you help provide rides to appointments or by running errands? If you aren’t able to do this personally, you can still provide gift certificates for transportation services or arrange for things like groceries and supplies to be delivered at their convenience.

Craft supplies and activities

It can be hard to keep carees entertained. Finding an activity that’s a good fit for someone’s abilities and interests can mean peace and quiet for their caregiver.

Cleaning services

Can you arrange to have someone take care of the cleaning and laundry for them? This is a great way to give a caregiver an extra hour for themselves.

Something delicious

Cooking can be a rewarding hobby and an act of love – or it can be time-consuming drudgery. If dietary restrictions aren’t an issue, a gift certificate to their favorite local cafe or a service like Seamless is fantastic. Some organizations, like Meals to Heal, provide prepared meals tailored to the specific nutritional needs of people with illnesses.

Something just for them

Before caregiving took over their life, what were they interested in? Pick out something they’ll really enjoy and do what you can to make sure they’ll get the time they need to enjoy it.

Your ear

The best support a caregiver can get is your understanding and appreciation. Call just to say hi and make sure they know you mean it when you ask how they’re doing.