Breaking bad news

Breaking bad news

How do you tell someone that they’re seriously ill, or even dying? Chrissie Giles explores how doctors learn and how they deal with the stress and trauma, for both their patients and themselves.

I was 14 when I was told that Dad was dying.

I was sitting on the floor of our lounge. Mum said that she had some news. Sensing the worst, I fixated on the newspaper open in front of me, staring at an advert for German cut glass. It was cancer, in his pancreas, and he might only live a few more months.

They were going to try an operation, she told me and my sister, to reduce the pain. As a nurse, she must have known that this was unlikely to work, but she knew her audience and didn’t want to overload us with information. She must also have known that pancreatic cancer has one of the bleakest outlooks, due in part to a lack of symptoms in the early stages. By the time you start to notice the nausea, jaundice or weight loss, it’s too late to hope that it’s something less serious.

That night, as I wrote my diary, I could think only about how I felt. Reading it back now I wonder what it was like for my mum, still reeling from the news herself and having to tell the rest of us.

§

As a doctor, Kate Granger often deals with discussions of bad news and end-of-life issues. But there’s another reason the subject interests her. Three years ago, at age 29, she was diagnosed with a very rare and terminal form of cancer that affects soft tissue. She’s spoken and written widely about her experiences living with a terminal disease. She spearheaded the #hellomynameis campaign, to get people working in the NHS to introduce themselves to every patient they meet. She’s planning to live-tweet her own death.

Granger was diagnosed with cancer while on holiday in the USA. “I came up against some tough episodes of breaking bad news when I got back to the UK,” she says. “When I got my MRI results, I was told when I was by myself by a junior doctor who didn’t know what the plan was going to be.”

In pain and alone, she was told “without a warning shot” that her MRI scan showed that the cancer had spread. “He was basically giving me a death sentence. He sort of couldn’t wait to leave the room and I never saw him again.”

Her experiences have shaped her as a doctor. “I think I was a fairly compassionate, empathetic doctor, but having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs Smith that she’s got lung cancer’ as a task.”

I ask several doctors to share their experiences and the patients that stick in their mind. One remembers a woman who came in soon after Christmas. She’d been in and out of the doctor’s over the last nine months or so, with general symptoms that are all too easy to ignore: feeling tired, swelling. Then she had suddenly become jaundiced and short of breath, so a relative brought her into A&E.

It was one of those situations, the doctor says, where you pull the curtain back and immediately think, “This is not good”. “On very few occasions do you touch something and say, ‘This is cancer’.” When she examined the patient’s abdomen it felt “rock hard”.

“She kept saying to me, ‘It’s going to be fine, isn’t it?’ And I’m saying, ‘We’ll do everything we can, let’s just do a few tests and figure out what’s going on.’ At that stage in my mind, I knew it was bad, but I still had to figure out exactly what flavour of bad it was.”

The woman was anxious to be home on New Year’s Eve to make a call to family overseas. But blood tests confirmed that she’d need to stay.

“She said to me, ‘Tell me the worst-case scenario.’ I looked at her. She looked at me. And in my mind I was thinking, ‘She’s not ready for this diagnosis.’ Then her relative stepped in and she said, ‘No, no, she means what’s the worst-case scenario in terms of how long does she have to stay in hospital?’

“At that moment, you realise that we all know exactly what we’re talking about, but we’re all accepting it to different degrees.”

Compartmentalisation seems to be important in coping – she mentions several times that bad news, death, is part of the job. “You have to be strong for the family. I can easily go back into the staffroom and cry my eyes out, but in that moment I have to be there, I have to be the hand to hold, or the shoulder for the patient to cry on.”

The doctor speaks of the first patient she cared for, a man with metastatic prostate cancer. She was called into his room by his wife, and as she arrived, the man took his last breath. His wife broke down onto the floor in front of her. “In that moment, you have to say, ‘I’m sorry, he’s gone.’ And you kind of just have to suck it up and be there for them in that moment because that moment is everlasting for them.”

§

It’s an office that could be anywhere, except for the clinical examination bed in the corner, complete with curtained cubicle. The A4 sign blu-tacked to the door reads: “Room booked for breaking bad news all day”.

Six medical students sit listening. “They’re real. They cry, they shout,” the facilitator, a doctor, tells the circle in front of her. Nerves crackle in the air, a few people let out self-conscious laughs. The facilitator is referring to the two actors who have come to rehearse scenarios with the students, who are one year from being qualified doctors.

Understandably, they have a lot of concerns: about getting emotional, whether or not they should touch patients, saying the wrong thing, not saying the right thing, not saying anything at all.

The scenarios are given out. The students’ eyes hurriedly scan down their sheets of paper. Cringes. Sharp intakes of breath. One scenario is based around telling a parent that their son has suspected schizophrenia. Another, that a person’s relative has unexpectedly died in hospital. One peers over his neighbour’s shoulder. “You got the short straw,” he says, shaking his head.

When the time comes, his neighbour heads for the door. “You might want to take in some tissues for this one,” the facilitator tells him. “Yeah, for me,” the young man replies.

The rest of the group watch on a live video link, seated in plastic chairs in a half-moon in front of the screen. They touch their faces self-consciously, arms crossed protectively across their bodies. The speaker hisses.

In the room sit a couple. The woman fiddles with her handbag, refusing to accept the news. The man stares silently at his hands, fists clenched around his mobile phone. “Is that true, or just something you say?” he says aggressively to the young doctor. He’s just been told that his baby, born at just 26 weeks, has severe brain damage and is unlikely to survive.

The students’ eyes dart to each other across the room. A shake of the head, a smile, a wince, sensing their colleague’s pain – pain they are all going to feel for themselves sooner or later.

§

Telling the truth takes its toll.

Researchers at Aristotle University in Greece have found, perhaps unsurprisingly, that telling a (pretend) patient that they had cancer was more stressful for a doctor than concealing the diagnosis. Doctors who don’t tell the truth, they suggest, may be doing so to keep control of the situation and avoid their and their patients’ emotional reactions.

The stress of having ‘bad news’ conversations can lead some doctors to put them off, or to deliver news in a less-than-optimal way, says Dr Laura-Jane Smith, a respiratory registrar in training who works in London.

Finding the right time and place to have conversations about things such as progression of disease can be challenging, and patients react in all sorts of ways. “Some people will want to have that conversation when they realise that they’re unwell. Some people will strongly say, ‘I’ve been in hospital before, there’s no way you’re sending me to [intensive care],” says Smith. Some just don’t want to know.

There’s also the danger of shooting the messenger. Katherine Sleeman, medical doctor and lecturer at King’s College London’s Cicely Saunders Institute, quotes froma study that found that patients perceived doctors as better communicators when they gave a more optimistic view of palliative (non-curative) chemotherapy. “It seemed as though you can inform patients that a disease is incurable but at the expense of the relationship with them, which is fascinating,” she says.

The demands that patients and families put on doctors – to find a balance between honesty, truth and hope, to be human, yet not too human, to know everything, even the unknowable – add to the stress.

“I think we find it difficult to admit that we don’t know,” says Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care at the University of Cambridge, “because patients come to us, and we look to ourselves to be people who investigate, make decisions, make a diagnosis and have an action plan.”

He thinks that doctors find it quite emotionally difficult to acknowledge uncertainty – something born of not the doctor’s incompetence but more the unpredictability and uncertainty of so much of medicine, particularly the later stages of many diseases. “It is frightening. No one ever enjoys having these sort of conversations,” he says.

It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…”

For my sister, a doctor for eight years, it isn’t so much telling the bad news that stays with her, but the small, seemingly insignificant things that went along with it: noticing a pristine newspaper, unread, on the bedside locker of a patient who had just died, despite attempts at cardiopulmonary resuscitation. Finding a cheque waiting to be paid in in the wallet of a man who’d had a fatal accident.

These things – the physical manifestations of the nearly-done, not-done, never-to-be-done – seem to resonate. Unopened birthday presents, cancelled holidays, unworn clothes: all symbols of a life ending prematurely, of potential diminishing, of a future fading. They’re what remain after the practicalities of dealing with a patient and their relatives are long forgotten.

You do what you can to process it, one doctor says. Review what has happened from a medical management point of view: analyse, rationalise, conclude. Did we do everything we could? Would we do anything differently next time? Have a cup of tea, splash your face with cold water, have a cigarette, get on with the next patient.

Then your shift ends.

§

Self-medication takes a variety of forms. For some doctors, it’s straight to the pub. One (teetotal) doctor’s prescription: “Go home, order a pizza, eat lots of ice cream, sit in front of the TV and watch trash.” Another has a friend who’s also a doctor, and they’ve agreed that either of them can call the other at any time and vent.

Annabel Price, Consultant in Liaison Psychiatry at Addenbrooke’s Hospital, Cambridge, says that some doctors are more vulnerable to being affected emotionally by breaking bad news than others. This may be because they are struggling with bereavement or mental health issues in their own lives. Or it may happen if there’s a patient or medical case that they relate to particularly closely.

Doctors need to be resilient, but so do the organisations that they work in. “You would hope that if a situation is very difficult for an individual… the team then would help them to manage it, either by allowing them to step back or by providing them with extra support to be able to do that,” says Price.

“I would be very optimistic if I said that that works 100 per cent well every time and that all teams function in that way, but that’s the ideal that I think we should be working to: recognising that doctors are people, just as much people as our patients are, fallible humans who have our strengths and weaknesses, and weak points and struggles, just like anybody else.”

Dedicated services do exist for doctors to get help with their mental health, for example, but are those in need willing or able to find and use them?

One paper, advising junior doctors on how to look after their mental health, identifies three challenges for doctors seeking medical help. The first is stigma, including the fear that seeking help will lead to their fitness to practice medicine being challenged. The second is the idea that doctors can feel that they are somehow “letting the side down” if they need time off. The last is barriers to care. “Doctors do not make good patients,” the authors write. “Typically they do not follow their own health care advice, they self diagnose and self medicate, and they present late after ‘corridor consultations’. Once unwell, doctors are often reluctant to consult a general practitioner (even if registered) or to take time off work.”

Moreover, healthcare systems are far from perfect. Resources – including the time, space and supportive colleagues conducive to productive, healthy working lives – are often limited.

I asked Twitter if doctors need, and can get, support when breaking bad news. An Australian doctor summed it up: “Can’t even get time at work to go to the toilet while working in [the emergency department], let alone support when breaking bad news”.

§

When you are giving bad news about a life-limiting illness, many patients and their families want to know all they can about the condition: treatments, cures and how long patients survive. But the data aren’t always available. Studies are often small, or dated, or in populations of patients so different that findings are hard to extrapolate to the patient sitting in front of you. Everybody and every body is different – so certainty can be in short supply, at the very time when people want it most.

“How long have I got?” is an especially dreaded question. No clinician I speak to says that they give patients actual numbers, often preferring to talk about whether it is a matter of years, months, weeks or days. This is because prognostication – judging the course of a disease or condition – is notoriously hard. While there are ways to assess imminent death in, for example, a patient with terminal cancer, it can be extremely difficult to estimate how long a patient with frailty, dementia or a chronic lung condition will live.

Research shows that doctors tend to overestimate the survival of terminally ill patients, predicting them to survive more than five times as long as they end up doing.

Stephen Barclay never gives numbers to patients asking about survival. He reinforces this practice to his medical students: “I teach the students very firmly not to give numbers because often the information isn’t there,” he says. “And if the information is there, it’s average survival and by definition of an average, 50 per cent of patients live longer and 50 per cent live shorter.”

Giving people a ‘sell-by’ date is not only virtually impossible but can be harmful. “I’ve certainly had a number of patients who have been told, ‘you’ve got six months’, and when six months comes they assume they’re going to die today and that can be really difficult if they’re clearly living longer,” Barclay says. Conversely, if things are clearly moving on a lot more quickly then having a particular date in mind can encourage people to have unrealistic hope.

Laura-Jane Smith agrees that you have to choose your words carefully. “What I have realised from having spoken to patients is that they never forget that conversation, and actually quite often they don’t forget the specific words that you use,” she says.

“You fall into the trap of wanting to dress it up, and wanting not to use words like ‘cancer’ and ‘incurable’ and ‘life-threatening’,” she says. “The more that I do it, the more I try and find ways to say things as clearly as possible without being blunt and I think that’s much more effective.”

Individual words matter. Professor Elena Semino and colleagues at Lancaster University have been conducting a study of how certain kinds of language are used in communication about the end of life. They’ve created a set of over 1.5 million words, collected from interviews and online forums, where patients, carers or healthcare professionals meet to talk with their peers.

Violence or war metaphors (“battling my disease”, “keep up the fight!”) can be disempowering or disheartening for people with cancer, potentially demanding constant effort or implying that a turn for the worse is a personal failure. But in other contexts, they can empower people, helping someone express determination or solidarity, or bringing a sense of meaning, pride and identity.

“You don’t need to be a linguist to realise what metaphors a patient’s using,” says Semino. Doctors should ask: are those metaphors working for the patient at that point? Are they helpful, giving them a sense of meaning, identity, purpose? Or are they increasing anxiety?

§

While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.

Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.

“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”

While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.

Barclay cautions that the urge for so-called “professional tidiness” – getting these end-of-life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.

For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.

But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.

Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.

“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”

Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.

§

Though my Dad’s terminal diagnosis came nearly 21 years ago, my mum remembers his reaction clearly. “Dad turned to me and said, ‘Well, I’ve had a good life, a very happy life’.” He was reluctant to have the operation that might prolong – but not save – his life.

I remember him coming home from the hospital soon after, to rest before the operation. We’d bought him an apple turnover, his favourite cake, but it remained uneaten. Dad was propped up in bed, writing a list of things to do. He phoned a neighbour and invited him to take the tools he wanted from our garage. He read a letter an old friend posted through the door, triggering the only tears my mum remembers.

A couple of days later, earlier than planned, he was taken back to hospital. He didn’t come home again. But the short time that he lived knowing he was terminally ill gave him the chance to say goodbye. And us the same.


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

Portrait of a family caregiver: Politics and caregiving

Portrait of a family caregiver: Politics and caregiving

In a poll of 600 caregivers, 87% of respondents said their top concerns were Medicare and Medicaid, health care reform, and the economy. This comes as no surprise, since caregivers are one of the largest underfunded, under-supported, and unrecognized groups in America. Even with a population of 65 million, family caregivers are barely addressed in the political arena. According to Margo E. Schreiber, former director of the Illinois Department on Aging, this is because caregivers most likely aren’t active advocates– they are so immersed in their day-to-day responsibilities that they forget they can have enormous political clout. Suzanne Mintz, co-founder of the National Family Caregivers Association, believes many family caregivers don’t connect their circumstances to a larger societal issue.

However, that doesn’t mean the family caregiver isn’t a force to be reckoned with, politically speaking. The hardest-working and successful caregiver advocates were formally caregivers themselves. In addition, nearly half of Americans who vote at election time are over the age of 50, many of them already involved in caring for another and aware of the issues the population faces. Often legislators and politicians are witnesses or participants in care for a loved one.

Eighty percent of long-term care in this country is provided by a family member, saving the country billions of dollars in healthcare costs. Our country would collapse financially without family caregivers.

Since family caregivers are serving the community, that community should ensure that caregivers have jobs when they are ready to return to work, health and disability insurance throughout their time of service, the ability to save money for retirement, and approval and collegiality from their community. – Joanne Lynn, Sick to Death and Not Going to Take it Anymore!

Imagine if 65 million caregivers created their own political platform, like they did in Australia? The needs of family caregivers aren’t specific to that demographic– most of our nation faces severe economic insecurity and lacks the resources to provide for the future generation. Medicare is facing insolvency. Caregivers, as a unified force, have a tremendous influence– it’s time we leverage it.

The mistakes of today, a fresh start tomorrow

The mistakes of today, a fresh start tomorrow

Finally laying down to sleep, we are beyond exhausted.

Today, we didn’t eat much, and when we did, it was whatever we could get our hands on fastest. We meant to spend an hour at the gym but there wasn’t enough time.

Even when that hour finally came, that window of time just for ourselves, where we had planned a variety of activities, we sat in front of the T.V. and didn’t move until we’re dragged back to reality.

As our head sinks into the pillow we fear that tomorrow will be the exact same. Negative thoughts concerning failure, fear, and anxiety creep into our head. But then we make a firm resolve: we will not wake up tomorrow with this harmful record playing in our heads. We will open our eyes to a new day and a fresh start.

We will have recognized and accepted the mistakes of yesterday; we will attempt to take better actions, to make better choices for ourselves and our loved ones; but we will remember that we are only human, that we might trip up. We will likely make mistakes. And when we do we will forgive ourselves.

We will forgive ourselves by finding the courage to make tomorrow a new day and allow for the possibilities of new outcomes.

Wise-to-accept-todays-blunders (2)

The cost of aging in America

The cost of aging in America

People are living longer than ever before. In 1900, people aged 65 and older composed just over 4 percent of the U.S. population. By 2050, they will make up more than 20 percent. This unprecedented population growth is the result of significant medical advances over the past century, especially those related to the treatment of infectious disease such as pneumonia and tuberculosis. But aging population growth — especially among those older than 85, who are most likely to require expensive long-term care, suffer disability or require assistance with daily activities — comes with serious financial consequences for aging Americans and their families.

  • The number of people who require the most expensive care — 85 and older — will triple by 2050.
  • Unpaid family members provide as much as $450 billion in care annually.
  • Careers for paid caregivers are expected to double by 2022, but average salaries for these careers currently range from just $18 to $20k per year.

MPH@GW, the online master of public health, created the following infographic to help explain the economic ramifications of a growing aging population in the United States. Please help us spread the word about this important issue.

Brought to you by MPH@GW, an MPH degree

 

How employers can support family caregivers

How employers can support family caregivers

1in414% of Americans in their 40s and 50s are juggling their careers along with caring for a parent. 60% of family caregivers work full- or part-time. It’s not just older workers who are providing unpaid care for family and friends – 35% of caregivers are between 18 and 49. In fact, 16% of all adults provided some level of unpaid care for an elderly relative this year. The problem is only going to become more pervasive, as the number of older americans will more than double in the next 20 years.

One in 4 working caregivers have contemplated changing jobs because of their caregiving responsibilities. They’ve cut their hours, avoided business trips, and even turned down job promotions. In the end, 16% quit their jobs and another 13% retire early. It pays to care. Don’t lose your most valuable employees!

 

How can caring employers support their caregiving employees?

Health insurance

Nearly all employers take co-pays into consideration when choosing health insurance policies to offer their employees. Fewer consider whether or not insurance coverage provides adult day care and respite care. Some policies allow employees to add an adult family member to the policy and provide geriatric care management support. Caregivers can benefit from access to counseling and therapy to deal with stress and grief. Take a look at your current health insurance coverage options to see what’s there to support caregivers – and consider adding to it.

Additional paid time off

20% of caregivers have taken significant time off of workFive sick days is fine for a healthy worker, but those days quickly vanish for caregivers. Removing the distinction between vacation and sick days to provide a general block of paid time off (PTO) provides additional flexibility. Providing additional paid time off will allow caregivers to take care of their own health.

Treat people as individuals

It’s true that women bear more of the caregiving burden than men when you look at the statistics, but many men bear significant caregiving responsibilities. Forty percent of men serve as primary caregivers and many more provide regular caregiving support.

Flexible schedule

Giving your workers a flexible schedule is the biggest – and easiest – thing you can do to help working caregivers. Allowing your workers to adjust their hours, compress their work schedule, or work part-time temporary could very well save a staff member from being forced to quit. Allowing someone an exemption to mandatory overtime or providing them enough advance notice so they can make arrangements is also a huge help. These are steps that have been shown to improve employee satisfaction for all workers, not just family caregivers.

Remote working

Being away from home can be stressful for caregivers, especially for those with a significant commute. Working from home allows caregivers to provide assistance throughout the day while still being productive employees. Allowing caregivers to work from home allows them the peace of mind of knowing they’re there to handle anything that may come up.

Unpaid leave

Many caregivers are afraid that taking unpaid time off will jeopardize their jobs. In the US, companies with 50 or more employees are bound by the Family and Medical Leave Act (FMLA), but some employees fear that taking leave will stall their career or even put their future in jeopardy.

Access to experts

Access to experts through an Employee Assistance Program (EAP) can be a huge perk. Some workplaces offer seminars and assistance filling out paperwork for FMLA, retirement planning, long-term care, living wills, estate planning, and other legal services. Others even provide courses on coping with the stress of informal caregiving and the resources available.

Advocacy

Big corporations have the power to speak up in support of legislation that supports caregivers. Look into the laws that impact family medical leave, long-term care, and estate planning.

Understanding

Regardless of our titles, we’re all people. Compassion can go a long way toward fostering mutual respect. Company-wide training for supervisors can help them understand and prevent potential conflicts. Work with your employees and HR to find ways that caregivers can take personal calls, attend doctors appointments, and manage stress while keeping up with work. Removing the stigma from working from home, setting a flexible schedule, and utilizing company-sponsored counseling will make for a happier, more productive workforce.

Have a policy

60% of caregivers say it's had a negative impact on their jobsAd-hoc decisions open you up to potential liability issues. Provide clear policies in your employee handbook, along with definitions of “caregiving responsibilities” and “family.” It’s clear that spouses, children, and parents are family members, but what are you comfortable giving workers time off to care for in-laws, cousins, or aunts? Decide now and put it in writing so you don’t make an arbitrary decision later.

Besides FMLA, caregiving responsibilities are mentioned in the Americans with Disabilities Act, Equal Pay Act, Pregnancy Discrimination Act, Civil Rights Act of 1964, Employee Retirement Income Security Act, and others. US Hastings College of Law provides a guide to preventing discrimination against employees with family responsibilities. Litigation regarding discrimination against family caregivers has increased 400% in the past decade.

Caregivers are great workers

Caregivers are dedicated, resilient, and resourceful. Don’t be afraid to hire someone who has an employment gap because of caregiving.

Statistics: Pew, Health Advocate, & AARP.

Helping your sibling ask for what they need

Helping your sibling ask for what they need

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the last of 6 tips: taking that circle of support you created and turning that into chores done and free time for your caregiver.

6) Offer to help them explore the possibilities of using a caresite ( i.e. a free, easy to set up and easy to use website that helps caregivers get the support they need in the ways they want it).

6 tips to support caregiversOver the past several years, a new valuable tool has emerged to help caregivers. I call these caresites. They are free websites that are very easy to set up and use. The main ones are Lotsa Helping Hands, Caring Bridge, and Carepages.

These sites allow caregivers to decided how private or open they want the site to be.

They also allow caregivers to easily let people know what is going on, what they need and when and how they need it to be provided. They offer a help calendar where all the caregiver needs to do is post the task (e.g. driving the children to their after school activities) that needs to be done and people can sign up for it directly on the site. It gets these thing handles while eliminating the need for phone calls and emails and frees up the caregiver for the things that are more important to do.

Another wonderful thing these caresites do is offer a way for people who care about the person being cared for and the caregiver to post messages (and prayers) of love, healing support and encouragement.

Want to know more? Read the rest of the tips here.

Creating a circle of support for the caregiver in your life

Creating a circle of support for the caregiver in your life

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the fifth of 6 tips: letting your loved one know that you’re there to support them and help them avoid burning out.

5) Explore ways to share the care and be part of the caregiver’s circle of support.

holidaytipsNobody can do it alone. That’s a well established understanding in the world of caregiving.

Doing it alone is a surefire way towards exhaustion and, ultimately, burn out.

Exhaustion and social isolation are bad for our health.

Believe it or not, the latest research shows that caregiving is good for the caregivers’ health. In fact, caregivers live longer – are 18% more likely to do so (as per a study of caregivers of people who’ve suffered strokes – by Dr. David Roth of Johns Hopkins University).

In order for caregivers to enjoy this longevity benefit of caregiving, they must find ways of preventing exhaustion and social isolation.

You can help them by sharing this tip with them and then offering to explore some ways of enlarging their circle of support. You may need to help them get past beliefs they may have that get in their way of reaching out and accepting love and support. You may also need to help them to clarify what aspects of privacy are important to them and find ways to protect them while opening up to support.

Help them to open up the circle and let the love flow.

BTW – The health benefits will also flow to those who step forward to provide that support.

Want to know more? Read the rest here.

Honoring the caregiver in your life

Honoring the caregiver in your life

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the forth of 6 tips: showing your loved one that you recognize the incredible work they’re doing.

4) Honor and affirm the caregiver for their generosity, perseverance, and commitment.

holidaytipsCaregivers are extraordinary people. Or they are ordinary people who have stepped up in ways that are extraordinary.

However they have come to their caregiving role and situation and however they feel about doing it, many will rebuff our attempts to honor and affirm them for the personal qualities they are bringing forth right now. They might say that they are doing it out of love and loyalty. Or that they had no choice, that it’s a burden, but there’s no one else to carry it.

An exercise I offer in my book Coaching for Caregivers: How to Reach Out Before You Burn Out asks caregivers to list the various things they are doing as a caregiver. Then it asks them what values of theirs they are honoring by doing each of those things – even if they are doing them reluctantly or out of guilt, resentment, etc. Regardless of motivation, their caregiving actions are ways that they are walking their values.

So, honor and affirm them for doing that. Another gift that requires no wrapping!

Want to know more? Read the rest here.

Learning to really listen

Learning to really listen

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the third of 6 tips: checking in with your caregiver and really listening.

3) Ask questions about the caregiver’s well-being and be a good listener.

holidaytipsWhen is the last time someone asked you about your well-being? Or how your soul is doing?

I’m not simply talking about a “how are you doing” conversation. I’m talking about an inquiry about how you are truly doing from someone whom you trust, who truly wants to know, who cares about how you are doing and will truly listen.

In Hebrew, the conversational question is mah shlomech? (the masculine form) or mah shlomcha? (the feminine). Most people treat it as “how are you doing?” But, literally it means “how is your wholeness?” When’s the last time someone you care about asked you that question?

So, I suggest you lean into this question and let whatever happens happen. Your caregiver friend might be so appreciative that the conversation will easily flow. Or they might be so unaccustomed to the question that they’ll respond in their usual way.

Regardless of their response, this is another gift you are offering – simply being present and showing that you care. And this gift doesn’t even require any gift wrapping!

Want to know more? Read the rest here.

Privacy and family caregiving

Privacy and family caregiving

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the second of 6 tips: talking about privacy and confidentiality in caregiving.

2) Agree about whether this conversation – or part of it – is confidential or not.

holidaytipsIt would seem like this idea is a no-brainer. Of course it would be confidential.

But let’s look at what confidentiality can look like. In it’s simple form it may mean you won’t tell anyone what the caregiver told you. Or there may be a small group of people that the caregiver would be comfortable being in the know.

Or it may mean that you and the caregiver agree about what, if anything, might be shared with other people. For example, you might not share the nature or details of the medical condition that the person being cared for is dealing with. Or share only the most basic information about it. But you might agree that it’s okay to let people know that she is going for treatment and needs rides for her children to their after school activities. You might offer to be the coordinator of this or help the caregiver to set up a caresite (we like Caring Bridge & Lotsa Helping Hands) that has a calendar on it that people can directly use to find out what is needed and sign up for it.

So the “what” and the “who” are areas to discuss and come to an agreement on.

Having this conversation can help the caregiver open up to your caring and support while feeling secure that her personal boundaries will be respected.

Having this conversation is in itself an expression of caring and support. It’s a powerful one. It’s a gift. And, a pretty distinctive and wonderful gift for this time of year!

Want to know more? Read the rest here.

Starting the conversation about caregiving

Starting the conversation about caregiving

Caregivers need to find ways to manage their stress this holiday season and you, as family and friends of a caregiver, can use holiday gatherings to help them do this. But first you need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Here’s the first of 6 tips: starting a conversation about family caregiving responsibilities.

1) Begin a respectful, productive conversation with the caregiver without invading their privacy.

Why is this important to do?

One of the very common predicaments of caregiving is how isolated the caregivers can become. Social isolation is bad for our health. It can be especially harmful to caregivers.

How do caregivers become socially isolated?

All too often caregivers are so intensely focused on what needs to be done that they don’t have time or energy to reach out – either for support or even simple socializing.

Their friends, on the other hand, often don’t reach out to them for a number of reasons.

  • They’re busy themselves and aren’t aware of their friends’ isolation.
  • They’re afraid they’ll be blown off by the caregiver, their reaching out being seen as intrusive.
  • Or they simply don’t know how to start a conversation with them.

This coaching tip will provide you with a straightforward way to start the conversation.

Find a private time and place and ask permission to discuss their caregiving situation. For example: “I want to check in with you about how caregiving is going and (not “but”!) I don’t want to intrude. Can we talk?”

There’s no guarantee about how this inquiry will land and what kind of response you’ll get; however, respecting their space by asking for permission to speak about this is an expression of love and support in its own right.

Want to know more? Read the rest here.

6 Tips for Embracing Caregivers at Holiday Gatherings

6 Tips for Embracing Caregivers at Holiday Gatherings

holidaytipsHolidays increase stress for everyone, especially caregivers. A new APA study found that more than 6 out of 10 Americans report significantly more stress during the holidays.

Caregivers need to find ways to manage their stress this holiday season and family and friends can use their holiday gatherings to help them do this. But first they need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Before we start, I offer a few questions for you to consider and comment on.

  • Which friends of yours are doing caregiving – either directly or from afar?
  • Who can you imagine might be open to having a conversation with you about how they are doing?
  • What will it take for you to be willing to step forward and start a conversation with them?

 

1) Begin a respectful, productive conversation with the caregiver without invading their privacy.

Find a private time and place and ask permission to discuss their caregiving situation. For example: “I want to check in with you about how caregiving is going and (not but!) I don’t want to intrude. Can we talk?” There’s no guarantee about how this inquiry will land and what kind of response you’ll get; however, respecting their space by asking for permission to speak about this is a love and support in its own right.

2) Agree about whether this conversation – or part of it – is confidential or not. 

This is important in engendering enough trust that the person feels safe sharing what is truly going on for them.

3) Ask questions about the caregiver’s well-being and be a good listener.

This conversation is about being truly present. The best way to see if your help is desired or even appropriate is by your attentively listening and not being too quick to get into problem solving. Ask one or two broad and general questions and then let it happen. For example: “Tell me how it’s going.” “What’s it like for you these days?” “I so much admire all of what you’re doing; how are you managing to do it?”

4) Honor and affirm the caregiver for their generosity, perseverance, and commitment.

Caregiving is one of the most generous acts we can ever be called upon to do – even if we are doing it ambivalently , reluctantly, resentfully, out of sense of guilt etc. We are being called upon to put another’s needs ahead of our own and to be willing to interrupt other priorities we are tending to in our lives. It also calls upon other qualities that may indeed reflect our deepest held values. In fact, it calls upon these even if we’re doing if for some of the less noble reasons I mention above. So, if the spirit of the conversation permits it, offer some affirmation of the way you see that person truly walking their values in the ways they are caregiving.

5) Explore ways to share the care and be part of the caregiver’s circle of support.

If the conversation goes in this direction, ask what you could do in the following week that would lighten their burden in a practical way. You might offer to have a follow up conversation soon to find some follow up ways of helping – directly and also in helping them strengthen their network of support.

6) Offer to help them explore the possibilities of using a caresite.

Caresite is a term I’ve coined for the free websites that are available on the web to help famiIy caregivers let people know what is going on, what they need, when/how they need it, and also to receive loving affirmations and prayers from people who care about them. The most popular caresites are Caring Bridge, Lotsa Helping Hands and CarePages. If this prospect sounds intriguing to them, set up a time to sit by their side and do some exploration of these caresites on the web. Let them know if you would be willing to help them choose and set up a caresite or help them find someone else who can do it. (The current experts these days seem to be people who are 12 years old!).

 

My big message this holiday season? This all about relationship and connection. Caregivers can not do this alone. You can use the warmth of your holiday gathering to open up the healing possibilities that are right in front of you.

5 ways to support the caregiver in your life

5 ways to support the caregiver in your life

Your friend’s wife was just diagnosed with cancer. Your cousin just became the caregiver of her disabled sister. Your friend’s grandmother just moved in with them. Your coworker’s son was just in an accident. You want to help, but aren’t sure what to do. Here’s where to start…

1. Pick up the phone

Caregivers often find it impossible to make it to social events. Keep up with your friendship, even if they’re not holding up their end – they’re holding up a lot right now. Regular phone calls, text messages, emails, or letters mean a lot to caregivers.

2. Run to the store

You’re going to run errands anyway. Check in and see if you can pick up a few items. It can be tough for caregivers to find time to run errands – or to run errands with their caree in tow. Plus, it’s nice to have a quick chat.

3. Listen

Sometimes it’s hard for new caregivers to understand that the world is continuing on without them. Caregivers might not want to talk about what’s going on with them, or they might have a hard time relating to your life. They’re likely feeling overwhelmed. Let them vent without trying to fix things or making judgments.

4. Give an hour

Relieving them of their caregiving responsibilities for an hour or two can make a big difference. They need time to run errands…and relax. If their loved one requires more medical assistance than you can provide, just being there to provide the patient with company can give your friend the chance to shower, read a book, or take a nap. You could also come by and help them with chores.

5. Pick up a bill

Caregiving is expensive, even with insurance. Encourage them to set up an Amazon wish list or pick another way to let people know how they can help out.

Ways to support caregivers on #GivingTuesday…and every day!

Ways to support caregivers on #GivingTuesday…and every day!

Caregivers make up the 65 million Americans who selflessly give their time, energy and resources to care for loved ones. From sick spouses, and children with special needs to aging parents or relatives with handicaps. Caregivers are the ones who sustain our communities, but who will support them?

The Caregiver Space is a dedicated online space for exhausted caregivers to safely express themselves, find emotional support and the tools they need to live healthier lives.

give love this #givingtuesdaySupport someone on our forums

You know how hard caregivers work. Sending a caregiver a note of encouragement and support can make a big impact on their day.

Connect on our chat

Sometimes you need to talk right now. That’s why it’s so important to have people in our chatroom 24/7, so no one is ever alone. Having the chat open when you’re online and being available to chat can make a huge difference when someone’s having a hard time.

Share your expertise

Are you a caregiving expert? We’re always on the lookout for qualified experts – with both official accreditation and real world experience – who can write articles to guide caregivers.

give time this giving tuesdayTell a caregiver about our site

What caregiver has enough support? Everyone can use a little advice and encouragement. You can help us build a stronger community by letting other caregivers know we’re here for them.

Help us with a donation

Every dollar you spend matters, it’s your vote that says “I support this.”

Giving Tuesday is an opportunity to consciously vote for the non-profit organizations you value. Consider supporting caregivers this Giving Tuesday.

Your dollar matters. Vote with it by donating to The Caregiver Space.

How to be a better patient

How to be a better patient

Our site is for caregivers, sure, but I know that the patients our caregivers help visit our site, too. Recently, a husband reached out to me to express concern that his wife, who is his primary caregiver, is burnt out from caring for him. How can he lessen the load?

Here are suggestions from both family caregivers and professional caregivers on you can be a model patient:

Express appreciation

A ‘thank you’ often gives me an extra pair of wings – and it makes my heart smile. – Felicia H.

I currently have my Mom living with me. She tells she loves me 40 times a day, how grateful she is and I am her pretty girl and the special one daily. I have moments of frustration and being overwhelmed, but I cherish her gratitude. – Trice G.G.

A man I care for tells me thank you every single day before I leave…it really warms my heart every time. – Morgan B.

[My dad] told me everyday that he loved me. So even on the hard days when I had no sleep with lots of other things that needed to be done for my kids it was a reminder to serve my dad the best I could. – Laura C.S.

My Mom understands. She went through similar, and then some, when she was caregiver for her Mom. That makes all the difference some days. – Ed R.

Show that you care

Mom always asks me “How are you?” – Ana L.

When my son sits down with me and pulls my head into his lap and pushes the hair out of my eyes. I do that for him when he’s having a difficult day. To have him return the gesture, to have him show that level of affection melts my heart! – Lisa K.G.

Be glad to see them

Whenever I got home after running an errand [my husband] would cry out with a big smile on his face, “There she is!” – Beth T.

My husband tells me he loves my company. – Sally M.

Make them laugh

I don’t think there is one day that goes by that I don’t laugh at something my mother says. She cracks me up on a regular basis! – Rita G.

If she smiles and we can laugh together that’s the best. – Sue R.

My son is non-verbal, so just to see him happy and smiling melts my heart! Sometimes he gets silly and tries to make me laugh ~ so funny!! Makes my day. Knowing he is home with me, feeling loved and cared for brings me the strength I need and makes the sacrifice worth it all. – Jerilyn B.

Share what you know

One of my clients has taught me how to make jam and bake a pie (I’m a city girl)….it was great to get her back into the kitchen she loves, and for us to connect in a new way. That has lead to more trips to fruit stands, which leads to getting out of the car and walking with a cart…good exercise, and a bit of socializing goes a long way to a better night’s sleep. – Kerry N

Trusting me with their private feelings and thoughts means a lot! – Lisa M.G.

Sharing old stories–reminiscing! Elders sharing how they found happiness; what brought joy to their hearts & minds as a child or through life. What pastimes they enjoyed: music, whittling, bird watching, fishing, hunting, riding, traveling, sewing, telling stories–funnies, collections: vehicles, guns, pictures, dishes, spoons, stamps, etc. Vintage people are AWESOME! They’ve succeeded thus far! – Carolyn M.B.

Help with what you can

Mama folds all the laundry in the house. It’s her job and will not let anyone else do it. – Linda L.R.

When I’m not able to, my client cleans up his paper and does a few dishes. His concern touches my heart. – Shirley V.

Be considerate and cooperative

Let me sleep! Which is rare, lol. – Anna L.R.

When he eats all of the meal that I cooked and comments on how good it was. I know that is kind of simple to most but for me, it’s like I won the lottery. – Diane M.

Stay positive

He tries to help in anyway he can and never gets upset with me. His spirit is uplifting and patient..just what I need to calm my nerves on bad days. – Nora F.

He tries very hard to stay strong and positive for me, because he knows positivity it what I use to stay sane. – Christine D.R.

Take care of them, too

My husband sends me to the Spa! – Jan P.

My mom invites her neighbors over to socialize, but I’m pretty sure she does it so I have free time. – Robin B.

7 comments NOT to say to an Alzheimer’s caregiver

7 comments NOT to say to an Alzheimer’s caregiver

7-Comments-NOT-to-Say-to-an-Alzheimer’s-Caregiver7-Comments-NOT-to-Say-to-an-Alzheimers-Caregiver1Hard as it may seem to imagine the charismatic Churchill ever stumbling when speaking; however, we are all at risk of saying something we later regret. Often, this is as a result of answering too quickly, misunderstanding the situation or overlooking the repercussions. Alternatively, we may simply find silence awkward and would rather say something rather than nothing (so as to fill otherwise dead air). We mean well– however, words come out wrong when we speak hastily.

If you know a caregiver of someone with Alzheimer’s disease, be especially cautious with what you say and how you say it.

From my own experience with this condition (Alzheimer’s stole my father’s memories from him before he passed away), I found that others did not always completely understand my role and/or what I was going through and did not always offer what might not considered to be the most well-thought out advice. Fair enough – if you are not a caregiver, or have not had any experience with Alzheimer’s disease, it may be difficult to realistically understand what someone in this position is going through and/or the outcomes of the condition. But please do yourself and the caregiver a favour and think before you speak – a caregiver can be flustered, distraught and/or overwhelmed with daily responsibilities and cannot always give others the benefit of the doubt or will ask to clarify meaning. Have you ever been distracted and misinterpreted something which was said?

Please steer clear from these select phrases

You must feel alone. (OUCH!)

Caregivers may feel like they are adrift at sea in a leaky lifeboat; however, they are never truly on their own. With an estimated 500,000 Canadians having Alzheimer’s disease or a related dementia (source: The Alzheimer’s Society Toronto), you won’t have to look too far to find someone else affected by the condition. Sharing with and learning from another caregiver in a similar situation can be both therapeutic and beneficial. Additionally, there are many programs and services available across the country for Alzheimer’s caregivers. Instead of leaving the caregiver floating aimlessly, hand him/her a life jacket and recommend contacting The Alzheimer’s Society of Canada or the closest provincial chapter of The Alzheimer’s Society.

Your mother / father is wrong. (OUCH!)

Mom / Dad may think that today is Tuesday rather than Saturday (or mistakenly recognize you as a childhood friend from many years ago), but, trust me, pointing out such errors is futile. You may likely hear the very same statement a few minutes later (I can’t tell you how many times I heard the same stories from Dad but after he lost his ability to speak, I was grateful to have heard his voice for as long as I did). Arguing with someone with an Alzheimer’s patient is also embarrassing and maddening for someone in the early stages of dementia, as he/she may likely realize that his/her memory is starting to slip. It’s far better to smile and accept what the senior has said as truth – remember that it is Alzheimer’s disease which confuses the facts.

Things aren’t going to get better. (OUCH!)

With scientists continuing to toil in medical labs, I remain optimistic that the day may well come when a cure for Alzheimer’s disease will finally be found. While this may not be in either the senior’s or the caregiver’s lives, this pessimistic outlook will not be appreciated.

Things are going to get better. (OUCH!)

Conversely, you cannot realistically make such a lofty promise. No one knows when a cure will be found and, in the meantime, a caregiver will realize that this may well come too late for his/her loved one.

Finding things to do with your mother / father must be tough. (OUCH!)

Alzheimer’s patients will lose their memories but can still be engaged in plenty of other activities. I always liked to walk with Dad – a pastime he always enjoyed. In addition to being something we could do jointly, walking kept Dad limber too (another plus!). Winter walks were inside Dad’s care home while summer walks were outside. I also remember when my family took Dad out to a local ski hill. While this paled in comparison to the mountain slopes he once carved his way down, Dad was very confident on his skis!

Being a caregiver has to be difficult. (OUCH!)

Yes, caregiving can be overwhelming. Try balancing the needs of a senior with Alzheimer’s disease with your own life. Caregiving can easily become a secondary full-time job. Watching my father’s decline (and being unable to stop it) tested me to the very limits. Caregiver obstacles exist on many levels, but it may be better not to emphasize these– a caregiver does not have to be reminded of the demanding times.

I know how you feel. (OUCH!)

This nothing-short-of-cringe-worthy and hollow phrase has turned into a pet peeve of mine. It’s such an easy thing to say – you may sincerely believe that you are thinking of the caregiver, but the comment shows little thought and compassion instead. Emotions can run rampant and the caregiver may be feeling everything from joy (that Mom/Dad acknowledged a visit) to deep sadness and regret (over an impending passing of a loved one) in a single day. Have you experienced the same ride as a caregiver? If not, resist saying “I know how you feel” as it is, as best, a reflex action.

When talking with an Alzheimer’s caregiver, you can ensure better results by accentuating the positive or making a concrete offer instead. Try saying something like:

  • “Your mother/father would appreciate all the help you are providing”
  • “You are doing a great job with advocating for your parent”
  • “Other caregivers could learn a great deal from you”
  • “I understand how this can be a difficult time for you”
  • “Could I pick you up anything at the grocery store tomorrow and save you the trip?”

Finally, take a lesson from Winston Churchill. Pause and maybe pour a little gravy on those words before you speak them – this can help make them taste better if you have to eat them.

Photo credit: Some rights reserved by Alzheimer’s Association – Greater Illinois

A Caregiver’s Special Needs

A Caregiver’s Special Needs

This March we’re focusing our efforts not only on raising awareness of caregivers for special needs children, but also raising awareness of the special needs of caregivers. We know that it may be hard for family and friends to understand the enormous responsibility of caregiving– we want to help by offering you a “need” that you might have, curated, designed and ready to share on your Facebook page, Pinterest account, blog or through email. There’s no shame in having needs as a caregiver, although we know how hard it can be to admit them. We hope the Caregiver’s Special Needs CareCards help you to start the conversation.

The challenges and rewards of professional caregiving

The challenges and rewards of professional caregiving

“Caregiving has the potential to alter us at the core of our being, opening our heart’s capacity to live fully even in the midst of loss.” – Beth McLeod, Caregiving: The Spiritual Journey of Love, Loss, and Renewal

Caregiving can be mentally and physically draining at times, but it is also extremely fulfilling. As a professional caregiver, individuals have the opportunity to make a profound difference in a family’s life. This post will focus on both the challenges and rewards of caregiving, as well as resources for managing different aspects of the job.

Stress

Being a caregiver can be draining. It requires constant attention to a patient’s needs, as well as the ability to respond quickly to an emergency situation. It’s common for caregivers to feel guilty if their help isn’t well received, and this can take an emotional toll on caregiver well being. The best way for caregivers to deal with this stress is to ensure they set aside time for themselves to attend to their own needs.

Unacknowledged care

Because of the condition of their patients, some caregivers don’t receive the thanks or appreciation they deserve for their hard work. Families of aging loved ones can help by making sure to acknowledge the difference caregivers are making in the life of their loved one.

Patients refusing help

American society encourages self-reliance and independence, so older adults are often reluctant to accept help from others. Patients may deny their need for care or resist help, which can make a caregiver’s job difficult. Make patients feel more independent by giving them a task or something to work on.

 

With the many struggles involved with caring for the elderly, it instills caregivers with a sense of satisfaction and the feeling that they are making a difference. Being a caregiver can also improve one’s ability to develop relationships with others, and can lead to personal growth.

In a famous quote, former first lady Rosalynn Carter said,

There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.

Professional and family caregivers have an essential role in society, and it’s important that they are given the necessary resources and support.


Matt Larson is an entrepreneur who is passionate about using technology to solve big problems and make the world a better place. He cares deeply about the importance of families and was inspired to start CareSimply after talking with many families who struggled to find care for their loved ones.

For the Friends of Caregivers… Part Two

For the Friends of Caregivers… Part Two

Adrienne often says that her caregiving role isn’t over even though her two care recipients have passed away. Katie’s isn’t either.

On Saturday, I went to her grandmother’s house for a barbeque to celebrate her birthday. It was my first visit, although I had always heard Katie speak very fondly of her time there. Although both her uncle and grandmother are gone, the house still holds their unreserved love for their granddaughter/niece: pictures of Katie are everywhere, her memorabilia, her college mascot decorates mugs, magnets and T-shirts. Katie’s life lives in this two-story home.

The week her uncle died, I talked to Katie every day. I got a call from her one night saying that the roof over her uncle’s bedroom was caving in. This phone call marked the beginning of her desperate attempt to preserve the home (and family) she loves. Once her grandma passed, Katie embarked on a legal battle to keep the house in the family name. She did the research, defined the unknown terms, hired the lawyers, became the executor of the Will. Did I mention that she managed to study and complete her LSATs? (Katie got one of the highest SAT scores in high school– I’m betting she hit a home run with this notoriously nasty test too).

Katie has shown unbelievable determination and leadership. She has surpassed every expectation I’ve had of her. She is one of those people whose days must have 27 hours in them– 24 hours could not possibly be enough time to accomplish everything that she has. Oh, she’s also working part-time. Another detail I forgot to mention because it seems unbelievable from an outsider’s perspective. Her caregiving role is still very much apart of her identity. But now she’s a caregiver for uncle’s and grandma’s legacy.

After months of conflicting schedules, Katie and I finally got a chance to see each other. As we caught up, I told her about the work we’re doing at The Caregiver Space. I watched her face register the comprehension of our undertaking and I finally became aware of the crucial role she held all of these years. She began to tell me things about her caregiving journey I had never heard her talk about and she expressed her appreciation of the site we’re building.

“I wish it was available for you when you needed it,” I said.

Katie response completely took me by surprise: “Allie, you know me, I wouldn’t have used it.”

A moment of shock–and then I understood. Katie has maybe asked for help a handful of times in her life. At the barbeque, we were celebrating her yet she did all of the work, politely declining our offers to help. The lawyers, the Will, her grief– she has accepted all of this as solely her responsibility. To risk oversimplifying her method, if Katie is dedicated to a cause, she knows she can only rely on herself to see it through. Unfortunately, the past disappointments in her life seem to support this idea.

Or perhaps she feels asking for help is a sign of weakness. I have a painfully hard time of it myself. It’s not that I necessarily feel weak asking for help, but rather I have (false) ideas about what I “should” be able to do. I set unrealistic expectations for my ability to handle life’s curve balls. I have faith that I will make it to the other side, but before I do, I am allowed to be confused, to ask for clarification, to lean a little on a friend when I’m having a hard time standing on my own. If Katie would lean on me, I would happily use all of my strength to keep her up.

I hope caregivers like my friend Katie will be able to take the first step towards asking for help by developing the willingness to receive it.

As a friend of a caregiver, I understand now the limitations of my assistance. But I also understand where I can be of maximum service. I offered to do any research she needs to keep the memory-filled home of her childhood in the family name. I am available to go with her to meet lawyers or other professionals so she has some backup. I can help her through showing her her love and support in creative ways. Like getting all of my friends to chip in on a spa package so she can take a much needed break to decompress. I will not always have the answers for her, I may not even be able to ask the right questions, but I can honor the parts I recognize and love about her. Her strength, her determination, her playfulness, her loyalty. I am lucky to have been able to see the home she considers to be an extension of herself. But lucky mostly because I have such a fierce, lovely friend.

Katie, I’m dedicating my work here to you.

For the Friends of Caregivers… Part One

My friend, let’s call her Katie, has been a caregiver for her grandma and uncle for almost as long as I’ve known her. But did I really know that? I’m not sure it registered until last Friday when I saw her for the first time since I started working at the Caregiver’s Survival Network.

I met Katie in high school. We became very close when we were sophomores, going to the beach on weekends, taking vacations together. She always talked about her grandmother and uncle, how much she looked up to them. She was the girl in high school that put family first, before parties, before everything. This was a foreign concept to me at the time, as I’m sure it was for many of our friends. I remember admiring Katie for being able to say no to plans because she had made a commitment to go to her grandma’s house. I still admire that she was able to do that. Again, that was not something I was capable of doing when I was sixteen and at the peak of my self-involvement. Maybe she didn’t feel as if she had a choice. I can’t say for sure, but I can say that from the stories she told, her grandmother and uncle were her heroes.

If I was aware of the caregiving population in high school I might have noticed the transition in Katie’s role, from a devoted granddaughter/niece to caregiver. However, I was not. I was painfully unaware of the responsibilities my beloved peer held. If I were to hazard a guess, I would say Katie began her (more involved) caregiving journey right around high school graduation. “More involved,” because I believe she has caregiving in her blood. Not just for her family by birth, but the family that has grown up around her. Namely for her friends. She is of the die-hard loyal breed. The kind that would storm after someone who just insulted you while you were too hurt to say anything. Or the kind that stuck by your side when everyone else had given up.

While I was stressing about starting college, registering for classes, saying goodbye to high school friends, Katie was dealing with that plus the added fear that she was leaving two members of her family whose health had taken a downturn. She would no longer be a 30 min car ride away, but a plane ride. Her long-distance caregiving role manifested itself through stress, worry, and fear concerning the health of two of the most important people in Katie’s life. She visited regularly. Got away from school as often as she could. I seldom saw her in our four years at college. If we happened to be home at the same time, she was with her family.

I never got a chance to meet those special people in Katie’s life. In a little over a year, from seniors to graduates, both were gone. Her uncle died while she was at school. I can only imagine the pain this must have caused her, her worst fear come to pass.

Here’s where I have to be painstakingly honest, for all of those friends of friends who have lost loved ones. I had no clue how to help her. My heart hurt for her loss. But the words to express that seemed insufficient. I had never dealt with the grief of a peer. If I could have done anything in the world to take away her pain, I would have. I pray that she knew because I’m not sure I was able to say it out loud. I was too focused on my appearance: did I seem like the supportive friend? Am I saying exactly the right thing? Yes, there are things that are not at all helpful to say to the bereaved. But I focused on how she would take every single word I said. In that panic and confusion, I’m sure I said the “wrong thing.” However, it wasn’t about me.

To me, that’s the key difference between caregivers and non-caregivers. Caregivers get used to the idea of giving without much inhibition. In high school, to spend time with my family over socializing with my friends seemed like the end of the world. Maybe Katie felt that way too. But it didn’t stop her from seeing the ones she cared for. My ability to give selflessly to my friend in need was inhibited by self-centered thoughts. Instead of being there for her, I worried about how much it seemed I was there for her.

Here’s what I’ve learned. It’s okay to be upfront with you’re own experience with grief. No one benefits when you say “I know what you’re going through” when you don’t. I can only imagine the loss. Same thing with caregiving. Even though I read caregiver stories every day, I will never assume I know what it feels like until I’ve been in the role myself. But I feel I can be there for Katie in a way I couldn’t before, by acknowledging her role as a caregiver.

It’s also okay to ask what your friend feels s/he needs. Do you want company? I’ll be in your neighborhood for the next couple of hours. Do you need some coffee? Groceries? A movie? Allow for flexibility. Your friend is probably taking it day by day.

It’s the kind of strength that Katie has shown that hardens my resolve to be of service to loved ones in my life and to those caregivers whose strength is unrecognized by the masses.

Stay tuned for part two.

FTD Caregivers

FTD Caregivers

Em*, suitably given the position as my godmother, has always led by example– she demonstrates what a open, loving life looks like. Through her I have discovered that life is an illustration of growth, recovery, and spirituality. And by no means am I the only one influenced by her grace and insight. She is a doctor advocating for and supporting those suffering from dementia, as well as their caregivers. Last weekend I saw her for the first time since I started working with the caregiving community. As always, it was incredible to see her, but this meeting held a special significance. I can now appreciate and understand the work the Em does so much more than I ever could have before. Although her education and work focuses on dementia patients, caregivers are never a second thought. She knows the toll caregiving can take, especially when a loved one has a disease as devastating as dementia.

She informed about a type of dementia I’d never heard of, one that is particularly nasty. Frontotemporal degeneration. Or Pick’s disease. The disease affects the judgment center of the brain and deletes the filter we have for “good ideas” and “bad ideas.” Instead ideas become reality, no matter how out-of-character or unsafe. The site, The Other Dementia reveals a shocking fact: “FTD accounts for as many early dementia sufferers as does Alzheimer’s under age 65, and often appears in men and women as young as their thirties.” The disease is hard to diagnose because the symptoms begin appearing slowly and vary from case-to-case.

Em explains that the caregivers of FTD patients deal with such extreme behaviors that they needed a separate support group from Alzheimer’s caregivers. Because patients are prone to inappropriate social behavior, The Association for Frontotemporal Degeneration has created awareness cards for patients and caregivers to hand out, excusing his or her behavior and explaining a little about the disease. Spreading awareness is what prompted me to write this post. FTD moves with stealth so it often takes years to accurately diagnose. But the more people who know about FTD/Pick’s disease, perhaps the sooner it is recognized and the sooner support is sought.

The story of any caregiver is incredibly humbling. With FTD caregivers, I am particularly in awe. I can only imagine the vigilance and courage needed to care for a loved one with the disease.

Over lunch, Em shares with me a particularly moving story of a man caring for his wife with Pick’s disease. She was amazed by his ability to decide that he would have, in his words, a “get to” day rather than a “have to.” By choosing a “get to” day he allows himself to think of his actions as service to his wife rather than a chore. This is a beautiful sentiment. For me, it’s fortunately very easy. I get to go to work to a job I love, I get to take the train downtown giving me time to read, I get to pay rent because I have an apartment I cherish, I get to clean-up because I value order and space (and a bug-free apartment!)– the list could go on. Swapping out “have to” for “get to” transforms aspects of our lives that typically spark anger or resentment into gratitude. Of course, understandably, caregivers may have to work harder to replace the “have to” with “get to.” However, this should never be a reason to stifle feelings of anger, depression or loneliness. No matter how caregivers cope with their responsibilities, they are always prone to isolation, exhaustion, and illness. But there are ways to manage resentment and anger healthily– for me, this is one of them.

*Names has been changed to protect the identity of the patients and caregivers.