‘Money, work, family, friends: the same things keep coming up’

– Irish nurse on the regrets of people on their deathbed

Night nurses provide crucial support in the final hours of a patient’s life at home. The job is challenging but enriching.

Night nurse Mary Kavanagh: “We fall into the routine of the patient”

By Tanya Sweeney

To the uninitiated, Caroline Webb’s job may feel like a hugely difficult, almost unpleasant one. And even to Meath-based Caroline herself, the idea of returning to work as a night nurse, after years of working in other sectors, gave her slight pause for thought initially.

Caroline qualified as a nurse originally in 1991, but explored different career paths before a friend working in hospice care told her three years ago of a night nurse job available through the Irish Cancer Society.

“I first thought, ‘not a hope, I couldn’t go back into nursing again’,” she admits. “But since I got the job, I haven’t looked back. I can barely tell you how important, and how rewarding, this work is.”

In fact, speak to any of the night nurses who work alongside the Irish Cancer Society, and they are unanimous on one thing. Despite working in various outposts of nursing and care, this work is among the most profound and enriching jobs they have ever had.

That’s not to say that the work is easy. Night nurses tend to work an 11pm-7am shift in the home of a patient requiring end-of-life care. Everyone in the country, irrespective of location or financial circumstance, is entitled to 10 nights of care via the Irish Cancer Society (the service is accessed through the patient’s palliative home care team, or GP). The night nurse then feeds information back to the palliative care team to ensure continuity in care.

Chief among the nurses’ duties is to address the needs of the patient, from pain management and symptom control, and, where possible, ensure a pain-free and dignified death.

Often, the nurse on duty can end up talking with the patient on their deathbed in the quiet of nighttime.

“Usually, the same regrets keep coming up,” explains Webb. “They regret not keeping up contact with family and friends, not living life in the moment, and being worried about money when they have no need to worry about money.

“Sometimes a patient will ask us if they are going to die,” she adds. “We have to be quite truthful with people if they ask us. Often we say, ‘what do you think yourself?’ How do you feel?’

“In a lot of cases, they’re either testing us, or they realise that something is going to happen. We have to say to the family too, if the person isn’t already aware that they are going to die, and they ask us about it, we have to answer truthfully.”

As one of the most emotionally heightened and sensitive outposts of the nursing profession, plenty of compassion, emotional intelligence and tact is required for the job at hand. Life experience – and often, prior experience with loss – might also put a nurse at an advantage.

“I honestly don’t think really young people would be able for this,” observes Webb. “I don’t think someone in their twenties could walk into this situation and know what to say, or more importantly, what not to say.

“I’ve experienced the death of my own mam, and you know that people are so shocked when death finally does happen. You can relate to them and somehow tell them, without really saying it outright, that you’ve been though this yourself and can understand completely.”

Night nurses are there to provide support, reassurance and guidance to family members in their darkest moments.

“It’s an holistic, multi-faceted approach that we use,” says Lucan-based Mary Kavanagh, who has been a night nurse for a year.

“If you go into a home, it’s not like, ‘Superwoman or Superman is here’. We are doing things their way, and while a patient in hospital might need to fall into the routine of the ward, we fall into the routine of the patient. What I hope I achieve is to take the fear of dying and death away from the family and the patient.”

Though family members are only too happy to carry out the final wish of their loved one to die at home, looking after a dying patient outside of a hospital setting is daunting, and often harder than anyone could have anticipated.

“Most people want to be at home for their final days,” says Kavanagh. “After all, where is our favourite place to be, only with our own family and our own animals? Still, it’s a huge decision for a family, and what we offer is, they say, an invaluable service.”

When Sylvia Coyle spent her final days in the family home in Kildare surrounded by loved ones, the family benefited greatly from the Irish Cancer Society Night Nurse service.

“It was mum’s wish to stay at home with us and the Irish Cancer Society’s Night Nurse enabled her to do that,” says Sylvia’s daughter, Alison.

“As well as caring for her, our night nurse Geraldine talked to mum about her worries, which was a great comfort to her. Geraldine looked after the whole family – guiding us through a very difficult situation. She was invaluable to us. This is a vital service for any cancer patient who wants to be at home during their final days – we simply couldn’t have managed without it.”

Only when the nurses pass the threshold of the house do they know how the shift will unfold. Sometimes, the house can be packed with extended family and neighbours. Other times, the patient might have been in discomfort for many hours.

“Very often, you’ll see the sheer relief on a family member’s face when you get to the door,” says Louth-based Carol Adams, who has worked in nursing for 25 years. “They’re just so happy that someone can care for their loved one, and they might be able to get the rest needed to function for the next few days. The families we work with are so resilient and strong for their loved one. The love of a family in this situation is truly amazing to witness. It’s very special.”

Many people hope for, and often expect, a peaceful death for their loved one. Unfortunately, reality can get in the way, and a person’s final days can often be fraught with shock and unexpected upset. It can lead to challenging moments for everyone involved.

“One very distressing thing that can happen is what we call ‘terminal agitation’,” explains Webb. “It can happen with very young people when they don’t want to die and they fight with everything they can. They won’t settle and often have to be sedated. It can be very upsetting.”

Maynooth-based night nurse Emer McGearty says that trying to encourage a peaceful and relaxing environment in the home can help with the unexpected agitation of patients.

“It can be very shocking for a family to witness that,” she agrees. “You don’t want their last memories to be of their loved one being so unsettled. You want their memories of them being relaxed and at ease.”

“The other thing that can be challenging is when family members may not be on the same wavelength as we would be about things like medication,” notes Webb.

“You might also be dealing with family dynamics and it can create a bit of tension. In this case, as a nurse, you can’t take part and you can’t take sides.”

McGearty says that a good night nurse will need to be in the right frame of mind heading into a shift.

“You have to leave personal or family issues at the door and make yourself totally available for the family and the patient,” she says. “Likewise, you need to be able to switch off after a shift and to not bring it home with you.”

Yet naturally, some patients linger on in the memory.

“Every case is sad, but it’s particularly sad if it’s a young person, or a young person with young children,” notes McGearty. “One or two people really stick in my mind – there was one young man in his twenties who had a toddler, and another lady my age with breast cancer, who had children the same ages as my own.

“You also hear a lot of people who were in good health their whole lives, and maybe put off having a holiday or travelling until retirement, but were diagnosed with cancer soon after they retired. It does put everything into perspective, and make you really appreciate what you have.”

The service is funded almost entirely by public donations to the Irish Cancer Society. Boots Ireland and the Irish Cancer Society have recently launched their annual ‘5K Walks for Night Nurses’, taking place in Dublin and Cork on August 17.

To date, Boots employees and customers have raised over €1.3m to fund the service, which adds up to over 3,715 nights of nursing care for families around the country.

In 2016, the initiative introduced Honour Tags, which are on sale in Boots stores for €2. Customers can purchase a tag in honour of someone who has passed away from or survived cancer. “The service really isn’t there without the help of the public,” says Kavanagh. “At the time my father passed away, I didn’t know the service was available, and I really wish we had.”

Complete Article HERE!

We took a snapshot of the last year of people’s lives – here’s what we found

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Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

Self-Care for Family Caregivers

First, Care for Yourself

On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.

Effects of Caregiving on Health and Well-Being

We hear this often: “My husband is the person with Alzheimer’s, but now I’m the one in the hospital!” Such a situation is all too common. Researchers know a lot about the effects of caregiving on health and well-being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers.1 The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.

Older caregivers are not the only ones who put their health and well-being at risk. If you are a baby boomer who has assumed a caregiver role for your parents while simultaneously juggling work and raising adolescent children, you face an increased risk for depression, chronic illness, and a possible decline in quality of life.

But despite these risks, family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They report:

  • Sleep deprivation
  • Poor eating habits
  • Failure to exercise
  • Failure to stay in bed when ill
  • Postponement of or failure to make medical appointments for themselves

Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs. Caregiving can be an emotional roller coaster. On the one hand, caring for your family member demonstrates love and commitment and can be a very rewarding personal experience. On the other hand, exhaustion, worry, inadequate resources, and continuous care demands are enormously stressful. Caregivers are more likely to have a chronic illness than are non-caregivers, namely high cholesterol, high blood pressure, and a tendency to be overweight. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed.

Taking Responsibility for Your Own Care

You cannot stop the impact of a chronic or progressive illness or a debilitating injury on someone for whom you care. But there is a great deal that you can do to take responsibility for your personal well-being and to get your own needs met.

Identifying Personal Barriers

Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, with taking care of others an easier option. However, as a family caregiver you must ask yourself: “What good will I be to the person I care for if I become ill? If I die?” Breaking old patterns and overcoming obstacles is not an easy proposition, but it can be done—regardless of your age or situation. The first task in removing personal barriers to self-care is to identify what is in your way. For example:

  • Do you think you are being selfish if you put your needs first?
  • Is it frightening to think of your own needs? What is the fear about?
  • Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
  • Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?

Sometimes caregivers have misconceptions that increase their stress and get in the way of good self-care. Here are some of the most commonly expressed:

  • I am responsible for my parent’s health.
  • If I donʼt do it, no one will.
  • If I do it right, I will get the love, attention, and respect I deserve.
  • Our family always takes care of their own.
  • I promised my father I would always take care of my mother.

“I never do anything right,” or “Thereʼs no way I could find the time to exercise” are examples of negative self-talk, another possible barrier that can cause unnecessary anxiety. Instead, try positive statements: “Iʼm good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind tends to believe what you tell it.

Because we base our behavior on our thoughts and beliefs, attitudes and misconceptions like those noted above can cause caregivers to continually attempt to do what cannot be done, to control what cannot be controlled. The result is feelings of continued failure and frustration and, often, an inclination to ignore your own needs. Ask yourself what might be getting in your way and keeping you from taking care of yourself.

Moving Forward

Once youʼve started to identify any personal barriers to good self-care, you can begin to change your behavior, moving forward one small step at a time. Following are some effective tools for self-care that can start you on your way.

Tool #1: Reducing Personal Stress

How we perceive and respond to an event is a significant factor in how we adjust and cope with it. The stress you feel is not only the result of your caregiving situation but also the result of your perception of it—whether you see the glass as half-full or half-empty. It is important to remember that you are not alone in your experiences.

Your level of stress is influenced by many factors, including the following:

  • Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
  • Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
  • Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
  • Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
  • Whether or not support is available.
     

Steps to Managing Stress

  1. Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Donʼt wait until you are overwhelmed.
  2. Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
  3. Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):“God grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    and (the) wisdom to know the difference.
  4. Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
     

Tool #2: Setting Goals

Setting goals or deciding what you would like to accomplish in the next three to six months is an important tool for taking care of yourself. Here are some sample goals you might set:

  • Take a break from caregiving.
  • Get help with caregiving tasks like bathing and preparing meals.
  • Engage in activities that will make you feel more healthy.
  • Goals are generally too big to work on all at once. We are more likely to reach a goal if we break it down into smaller action steps. Once you’ve set a goal, ask yourself, “What steps do I take to reach my goal?” Make an action plan by deciding which step you will take first, and when. Then get started!

Example (Goal and Action Steps):
Goal: Feel more healthy.
Possible action steps:

  1. Make an appointment for a physical checkup.
  2. Take a half-hour break once during the week.
  3. Walk three times a week for 10 minutes.
     

Tool #3: Seeking Solutions

Seeking solutions to difficult situations is, of course, one of the most important tools in caregiving. Once youʼve identified a problem, taking action to solve it can change the situation and also change your attitude to a more positive one, giving you more confidence in your abilities.

Steps for Seeking Solutions

  1. Identify the problem. Look at the situation with an open mind. The real problem might not be what first comes to mind. For example, you think that the problem is simply that you are tired all the time, when the more basic difficulty is your belief that “no one can care for John like I can.” The problem? Thinking that you have to do everything yourself.
  2. List possible solutions. One idea is to try a different perspective: “Even though someone else provides help to John in a different way than I do, it can be just as good.” Ask a friend to help. Call Family Caregiver Alliance or the Eldercare Locator (see Resources list) and ask about agencies in your area that could help provide care.
  3. Select one solution from the list. Then try it!
  4. Evaluate the results. Ask yourself how well your choice worked.
  5. Try a second solution. If your first idea didnʼt work, select another. But donʼt give up on the first; sometimes an idea just needs fine-tuning.
  6. Use other resources. Ask friends, family members, and professionals for suggestions.
  7. If nothing seems to help, accept that the problem may not be solvable now. You can revisit it at another time.

Note: All too often, we jump from Step 1 to Step 7 and then feel defeated and stuck. Concentrate on keeping an open mind while listing and experimenting with possible solutions.

Tool #4: Communicating Constructively

Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need. The box below shows basic guidelines for good communication.

Communication Guidelines

  • Use “I” messages rather than “you” messages. Saying “I feel angry” rather than “You made me angry” enables you to express your feelings without blaming others or causing them to become defensive.
  • Respect the rights and feelings of others. Do not say something that will violate another personʼs rights or intentionally hurt the personʼs feelings. Recognize that the other person has the right to express feelings.
  • Be clear and specific. Speak directly to the person. Donʼt hint or hope the person will guess what you need. Other people are not mind readers. When you speak directly about what you need or feel, you are taking the risk that the other person might disagree or say no to your request, but that action also shows respect for the other personʼs opinion. When both parties speak directly, the chances of reaching understanding are greater.
  • Be a good listener. Listening is the most important aspect of communication.
     

Tool #5: Asking for and Accepting Help

When people have asked if they can be of help to you, how often have you replied, “Thank you, but I’m fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can’t handle everything yourself.

Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store. A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.

Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength.

Tips on How to Ask

  • Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
  • Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no?
  • Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
  • Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do.
  • Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
  • Avoid weakening your request. “Itʼs only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with Grandma from 9 a.m. until noon?”
     

Tool #6: Talking to the Physician

In addition to taking on the household chores, shopping, transportation, and personal care, 37 percent of caregivers also administer medications, injections, and medical treatment to the person for whom they care. Some 77 percent of those caregivers report the need to ask for advice about the medications and medical treatments. The person they usually turn to is their physician.

But while caregivers will discuss their loved oneʼs care with the physician, caregivers seldom talk about their own health, which is equally important. Building a partnership with a physician that addresses the health needs of the care recipient and the caregiver is crucial. The responsibility of this partnership ideally is shared between you, the caregiver, the physician, and other healthcare staff. However, it will often fall to you to be assertive, using good communication skills, to ensure that everyoneʼs needs are met—including your own.

Tips on Communicating with Your Physician

  • Prepare questions ahead of time. Make a list of your most important concerns and problems. Issues you might want to discuss with the physician are changes in symptoms, medications or general health of the care recipient, your own comfort in your caregiving situation, or specific help you need to provide care. The physician only sees a moment in time with the patient. Make sure you let him/her know what your concerns are in terms of daily care/health.
  • Enlist the help of the nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about various tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home.
  • Make sure your appointment meets your needs. For example, the first appointment in the morning or after lunch are the best times to reduce your waiting time or accommodate numerous questions. When you schedule your appointment, be sure you convey clearly the reasons for your visit so that enough time is allowed.
  • Call ahead. Before the appointment, check to see if the doctor is on schedule. Remind the receptionist of special needs when you arrive at the office.
  • Take someone with you. A companion can ask questions you feel uncomfortable asking and can help you remember what the physician and nurse said.
  • Use assertive communication and “I” messages. Enlist the medical care team as partners in care. Present what you need, what your concerns are, and how the doctor and/or nurse can help. Use specific, clear “I” statements like the following: “I need to know more about the diagnosis; I will feel better prepared for the future if I know what’s in store for me.” Or “I am feeling rundown. I’d like to make an appointment for myself and my husband next week.” Or “I need a way for my mother to sleep at night as I am now exhausted being up every two hours at night with her.”

 

Tool #7: Starting to Exercise

You may be reluctant to start exercising, even though youʼve heard itʼs one of the healthiest things you can do. Perhaps you think that physical exercise might harm you, or that it is only for people who are young and able to do things like jogging. Fortunately, research suggests that you can maintain or at least partly restore endurance, balance, strength, and flexibility through everyday physical activities like walking and gardening. Even household chores can improve your health. The key is to increase your physical activity by exercising and using your own muscle power.

Exercise promotes better sleep, reduces tension and depression, and increases energy and alertness. If finding time for exercise is a problem, incorporate it into your daily activity. Perhaps the care recipient can walk or do stretching exercise with you. If necessary, do frequent short exercises instead of those that require large blocks of time. Find activities you enjoy.

Walking, one of the best and easiest exercises, is a great way to get started. Besides its physical benefits, walking helps to reduce psychological tension. Walking 20 minutes a day, three times a week, is very beneficial. If you canʼt get away for that long, try to walk for as long as you can on however many days you can. Work walking into your life. Walk around the mall, to the store, or a nearby park. Walk around the block with a friend.

Tool #8: Learning from Our Emotions

It is a strength to recognize when your emotions are controlling you (instead of you controlling your emotions). Our emotions are messages to which we need to listen. They exist for a reason. However negative or painful, our feelings are useful tools for understanding what is happening to us. Even feelings such as guilt, anger, and resentment contain important messages. Learn from them, then take appropriate action.

For example, when you cannot enjoy activities you previously enjoyed, and your emotional pain overshadows all pleasure, it is time to seek treatment for depression—especially if you are having thoughts of suicide. Speaking with your physician is the first step. (See the FCA fact sheet Depression and Caregiving.)

Caregiving often involves a range of emotions. Some feelings are more comfortable than others. When you find that your emotions are intense, they might mean the following:

  • That you need to make a change in your caregiving situation.
  • That you are grieving a loss.
  • That you are experiencing increased stress.
  • That you need to be assertive and ask for what you need.
     

Summing Up

Remember, it is not selfish to focus on your own needs and desires when you are a caregiver—itʼs an important part of the job. You are responsible for your own self-care. Focus on the following self-care practices:

  • Learn and use stress-reduction techniques, e.g. meditation, prayer, yoga, Tai Chi.
  • Attend to your own healthcare needs.
  • Get proper rest and nutrition.
  • Exercise regularly, even if only for 10 minutes at a time.
  • Take time off without feeling guilty.
  • Participate in pleasant, nurturing activities, such as reading a good book, taking a warm bath.
  • Seek and accept the support of others.
  • Seek supportive counseling when you need it, or talk to a trusted counselor, friend, or pastor.
  • Identify and acknowledge your feelings, you have a right to ALL of them.
  • Change the negative ways you view situations.
  • Set goals.
     

Complete Article HERE!

6 Ways to Help Someone Who Lost a Loved One to Suicide

Family members and close friends of someone who dies by suicide are at increased risk of suicide themselves. Here’s how you can help.

By Sarah Klein

There’s a common estimate that every suicide leaves behind six survivors who are the most affected by the death. Not to be confused with suicide attempt survivors, who have taken action toward ending their own lives, suicide survivors or suicide loss survivors are friends or family members of someone who died by suicide.

Suicide loss survivors are themselves at an increased risk of mental health conditions and suicide in the future. One study found that people who knew someone who died by suicide in the previous year were 1.6 times more likely to have suicidal thoughts, 2.9 times more likely to make a suicide plan, and 3.7 times more likely to make a suicide attempt than people who did not know someone who died by suicide.

Family members may be genetically predisposed to suicide, while friends and peers may be influenced by the behavior of a person who died by suicide—or distraught by the “emotional destruction suicide leaves in its wake,” says John R. Jordan, PhD, a clinical psychologist in Pawtucket, Rhode Island, and the author of several books and articles on bereavement after suicide.

To address this increased risk, experts in the field of suicide practice something called suicide postvention. “[Clinical psychologist] Edwin Shneidman coined the term to mean what we do after a suicide has happened to help people who are loss survivors and help reduce their risk of suicide,” Jordan says.

Postvention tactics can include professional measures, like therapy sessions or meetings with a support group. But help can also come from family and friends. If you know someone who is a recent survivor of suicide loss, here are expert-recommended ways you can help.

Be present

“Even though this is changing, suicide is still a very stigmatized death,” Jordan says. “Losing someone to suicide can be tremendously isolating. Many people either don’t know anybody or don’t know they know somebody” who was close to someone who died by suicide, he says. Help break down those isolating walls by being there for your friend or family member

Kim Ruocco’s husband died by suicide in 2005. A Marine Corps pilot, he came back from what she describes as a “pretty difficult deployment” in Iraq with PTSD, depression, and anxiety. Their sons were 8 and 10 at the time.

Ruocco, who has a master’s degree in social work and is now the vice president of suicide postvention and prevention at the Tragedy Assistant Program for Survivors, says she took comfort in people simply being by her side. “The people who were most helpful to me could be in my presence and tolerate my pain and didn’t have to say anything,” she says. “There are no right words really, but it was really comforting to have someone who can be with you with that much pain.”

Deflect feelings of blame

Grief is never easy, but grief in the wake of suicide can be particularly complicated, says Mara Pheister, MD, an associate professor in psychiatry and behavioral medicine at the Medical College of Wisconsin, who has researched suicide prevention and postvention. “There’s the sense that it is a little different than the grief involved in losing someone in general. There can be a lot of guilt, a lot of what if,” she says.

Because a suicide loss survivor may already be blaming themselves for not doing something differently, comments like, “How could you not have known?” or “Why didn’t you stop him?” are particularly unhelpful, Dr. Pheister says. “That’s not something that needs to be said.”

Other survivors may be working through feelings of blame surrounding what turned out to be their final interaction or conversation with the person who died, Ruocco adds. “Help them understand that suicide is a multi-factor event that comes together on a kind of ‘perfect storm’ day,” she says, and encourage them to try to let go of that kind of guilt.

Let them dictate how much detail to share

Although it can be uncomfortable and scary to talk about suicide, avoiding the topic altogether might make a suicide survivor feel like you’re pretending nothing happened. Don’t shy away from talking about suicide—but don’t pry for details, either. Listen to how the survivor is talking about it and take cues from them. “Be there for them if they want to talk about it,” Dr. Pheister says. “It depends on what the person feels like bringing up themselves, what they’re okay talking about.”

That includes how you talk about the person’s death, Ruocco says. “Everyone is different in what kinds of words they want to use in connection with their loved one’s death,” she says. “Listen carefully to how the survivors are talking about the death and use those words.”

When in doubt, ask for guidance. Say something like: “I can only try to imagine what this is like for you. Would it be helpful for you to talk to me, or would you rather not talk about it?” Jordan says. However they respond, treat the person with compassion, as you would anyone who is grieving the death of a loved one, he says.

Celebrate the life the person lived

Put aside your curiosity about how the person died and instead share stories of how they lived. Funny stories of her husband or memories she may not have heard before were most comforting, Ruocco says.

“Use their loved one’s name, remember who they were before they struggled with whatever their issues were, acknowledge that the death doesn’t define them,” Ruocco says. “Talking about the life they lived is incredibly helpful.”

Reassure the survivor their feelings are normal

Alongside the guilt that a survivor might be feeling, there could also be sadness, self-doubt, anger, helplessness, and a wide range of other totally normal reactions, Dr. Pheister says. “Depending on how much the person [who died by suicide] was struggling, the survivor might [also] feel relief, which then induces more guilt,” she says. You can help by reinforcing that these and many other emotions are all well within the range of normal reactions to suicide loss. For example, help them “recognize that relief is the natural response to the removal of stress,” Dr. Pheister says.

Talking about how a person is feeling—and that it’s okay to feel that way—might help stave off some self-judgment and self-doubt, Dr. Pheister says.

Help them embrace their grief

Survivors often expect to grieve for a set period of time and then get over it, Ruocco says, which isn’t always the case. “Grief and loss become a part of who you are; people grieve their entire lives,” she says.

With time, grief can certainly become less painful—but it may still linger, she says. She counsels survivors to think of it in a somewhat more positive light. “Grief is love. You grieve because you loved someone. See it as a connection with a loved one.”

If you or someone you know is thinking about suicide, call the toll-free National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

Complete Article HERE!

Natural Burials Are Rising, and That’s Good for the Planet

Natural burials offer a greener alternative to traditional cemeteries, but Big Funeral is fighting back.

By

Even in death, Americans just can’t stop themselves from destroying the planet, according to new research.

Right now there are around 22,500 active cemeteries in the United States. These sanitized spaces, with bunches of flowers lain among neat rows of gravestones on manicured lawns, are so closely associated with the American idea of mourning that it’s difficult to imagine an alternative.

Yet the practice is deeply unsustainable. Every year, in laying their dead to rest, Americans bury approximately 73,000 kilometers of hardwood boards, 58,500 tons of steel, 1.5 million tons of concrete, and 3.1 million liters of formaldehyde. A typical four-hectare cemetery contains enough wood to construct 40 homes and sufficient volumes of embalming fluid to fill a backyard swimming pool. As the Baby Boomers start to die, these environmental impacts are only going to grow.

“People hate to think about it. They think, ‘I’m going to be embalmed, put in a vault, and have a nice, dry, quiet existence for my body,’ but that’s a total farce,” says Chris Coutts, an associate professor in the Department of Urban and Regional Planning at Florida State University. “The bodies quickly start to rot, and those fluids, if they’re in the body, find a way out of the vault and into the soil, and they can create a plume. It’s a concern if it migrates into water tables. The whole point of embalming fluid is that it doesn’t degrade, so it’s going to be around a long time.”

Coutts is the lead author of a new paper examining the benefits of a greener alternative to the traditional rituals of death: natural burial. While higher-density family vaults can reduce your environmental footprint compared to an individual burial, it’s still a high-impact way of shuffling off your mortal coil. Even cremation, which has doubled in popularity since 2000, leaves an environmental smudge on the Earth, thanks to its high energy consumption and the ensuing air pollution.

Increasingly, Coutts et al. have found, people are rejecting the lawn-park cemetery model, and instead choosing to commit their bodies to a wilder resting place. In most cases, this means eschewing traditional American funerary rites altogether and burying the body without chemicals in a biodegradable casket or a simple shroud. At its best, natural burial allows your death to leave almost no physical damage on the natural world, while helping to protect and conserve threatened landscapes for those still living.

One example is the 142-hectare Glendale Memorial Nature Preserve in Florida, a family farm located in an area full of endangered native longleaf pine and wiregrass. The plan for the cemetery called for 80 percent of the land to be restored and conserved as natural habitat, with around 28 hectares set aside for natural burials. Add-on items include coffins constructed from old bookshelves, while the conserved habitat is also available for recreational activities including hiking and camping. Telling ghost stories remains optional.

John and Bill Wilkerson, the brothers who run the business, say that the income they’ve generated from the burials has allowed them to resist the financial pressure to sell the land to developers—a proposition that was adamantly opposed by their late parents.

The lawn-park cemetery in America might feel like an inescapable ritual, but the idea is relatively recent, arising in the 19th century, as urban elites grew increasingly affluent. Rural cemeteries like Mount Auburn in Boston or Laurel Hill in Philadelphia were not only useful for memorializing the supposed importance of the deceased bourgeoisie, but also for providing their surviving relatives a pleasant getaway from increasingly crowded cities.

The practice of embalming grew popular around the time of the American Civil War, Coutts adds. “They needed to preserve and ship the bodies back to wherever they were going to be buried, and embalming became prevalent. It’s the common expected practice, but it’s really just people going through the motions: It’s what we’ve always done, it’s what we continue to do, but that’s changing,” he says.

This resource-intensive method of burial is far from universal across the globe. Muslim communities practice natural burial as a “basic religious obligation,” according to Coutts and his fellow authors, while in countries such as Australia, grave sites can be reused for new inhabitants after a certain amount of time has elapsed. In the Peruvian Amazon, before the arrival of Christian missionaries, bodies were lain among the buttress roots of large trees. Some Tibetans practice sky burials, placing the corpse on a mountain and allowing it to decompose gradually.

The first natural burial site in the U.S. was established in 1998 in South Carolina. There are now 162 natural-burial providers in the U.S., of which 99 are hybrid cemeteries, offering both natural and traditional burial. A further 54 offer exclusively natural burial, while nine are active conservation burial sites.

Yet America’s lucrative death-care industry is fighting back, determined to protect a billion-dollar market by perpetuating the idea that a resource-intensive funeral is the only guarantor of lasting peace. Indeed, hybrid burial sites are mostly a way for the sector to cash in on the growing popularity of natural burial, a form of greenwashing that offers little in the way of concrete benefits, says Joe Sehee, who founded the Green Burial Council, which certifies natural burial sites, in 2005.

“There were people who just didn’t like the idea [of natural burial],” Sehee says, “people within the industry, particularly people who liked the merchandise-based model of death care: chemical, casket, and vault companies.”

Perhaps more sinister than this greenwashing are the attempts by the funeral industry to lobby for new regulations that will protect its economic position. There are very few federal laws around the handling of the dead, with states and local governments generally left in control. Around half of U.S. states regulate the amount of time that a body can remain un-embalmed, yet no states require a body to be buried in a coffin. Only a handful of states forbid bodies being buried outside of established cemeteries.

This loose legal framework bodes well for natural burial, and badly for Big Funeral. Correspondingly, the mainstream funeral industry has lobbied state governments to pass legislation protecting its share of the market, such as mandating embalming, only permitting burial in established cemeteries, and requiring the involvement of a licensed funeral director to perform tasks that could ordinarily have been performed by the next-of-kin. Restricting citizens’ freedom to access natural burial is bad for the environment, and could deter those who might have chosen this wilder option because it was cheaper than a traditional plot.

Coutts himself, after years of studying the benefits of a natural burial, sounds almost excited by the contribution he will be able to make to conservation from beyond the grave. “I’ve often just dreamed about walking out into the desert with a bottle of water and just sitting under a tree and waiting for it to come,” he says. “But that would be a luxury and it’s probably not feasible. I have it in my will that I want my body to be buried naturally in a conservation burial ground.”

Complete Article HERE!