Identify the Sources of Caregiver Stress

Identify the Sources of Caregiver Stress

Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress.  Some family members may think you’re exaggerating. What’s all the fuss about?

“I’m not rushing you,” my husband declared. “Take your time.”

My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.

Knowing the sources of stress helps caregivers to cope with it.

Whether you’re a professional or family caregiver, grief is woven into your day.  I grieve for my disabled husband, who spends his days in a wheelchair. If I’m honest with myself, I wonder how long he will live. Author Eleanor Silverberg, in her book, Keeping It Together: How to Cope as a Family Caregiver without Losing Your Sanity, thinks grief is an integral part of caregiving.

“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she  writes. And grief takes many forms.

Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.

Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.

Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.

Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?

We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”

I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!

Geriatric ERs Reduce Stress, Medical Risks For Elderly Patients

Geriatric ERs Reduce Stress, Medical Risks For Elderly Patients

The Mount Sinai Hospital emergency room looks and sounds like hundreds of others across the country: Doctors rush through packed hallways; machines beep incessantly; paramedics wheel stretchers in as patients moan in pain.

“It’s like a war zone,” said physician assistant Emmy Cassagnol. “When it gets packed, it’s overwhelming. Our sickest patients are often our geriatric patients, and they get lost in the shuffle.”

But just on the other side of the wall is another, smaller emergency room designed specifically for those elderly patients.

Patients like Hattie Hill, who is 105 years old and still living at home. A caregiver brought her in one rainy day in late spring because she had a leg infection that wasn’t responding to antibiotics. Hill, who also has arthritis and a history of strokes, said she prefers the emergency room for seniors because she gets more attention.

“I don’t have to wait so long,” she said. “And it’s not so loud.”

Packed emergency rooms are unpleasant for everyone. But they can be dangerous for elderly patients, many of whom come in with multiple chronic diseases on top of a potentially life-threatening illness or injury.

“Who is going to suffer the most from these crowded conditions?” asked Ula Hwang, associate professor in the emergency medicine and geriatrics departments at the Mount Sinai School of Medicine. “It is going to be the older adult … the poor older patient with dementia lying in the stretcher with a brewing infection that is forgotten about because it’s crazy, chaotic and crowded.”

Seniors who come into traditional emergency rooms are frequently subjected to numerous and sometimes unnecessary tests and procedures, according to research and experts. They stay longer and their diagnoses are less accurate than younger patients. And they are more frequently admitted to the hospital by ER doctors overwhelmed by the constant influx of very sick patients.

“You’ve got this surge of more and more older adults coming to the emergency departments,” said Kevin Biese, co-director of geriatric emergency medicine at the University of North Carolina School of Medicine. “Yet there hasn’t necessarily been this recognition that [they need] different screening, different treatment and they are going to have different outcomes.”

Geriatric emergency rooms, which are slowly spreading across the country, provide seniors with more expertise from physicians, nurses and others trained specifically to diagnose and care for the elderly, researchers said.

The staff in these specialized ERs collaborate closely not only to treat the seniors’ immediate health problems but also to reduce their risk of confusion, bed sores and over-medication. Senior ERs are designed to be more quiet and tranquil.

Geriatric ERs have the potential to lower health care costs because staff can more carefully discern who needs to be admitted and who can be cared for outside of hospital walls, Hwang and others said. That tends to reduce hospitalizations among the elderly.

Mount Sinai, which opened its geriatric emergency room in 2012, is part of a nationwide effort to find a better way to treat elderly patients. The first geriatric ER opened in New Jersey in 2008, and now there are more than 100 such units nationwide.  Several others are being planned, including in California, North Carolina, Connecticut and Texas.

Geriatric ERs vary widely. Some are separate units with trained staff; others are merely sections within traditional emergency rooms with extra hearing aids and other senior supplies. But professional medical organizations have developed guidelines to standardize design, staffing and patient screening.

The boomlet in geriatric emergency rooms stems in part from an increase in older patients with complex conditions who are seeking care in regular ERs. That has caused some providers and hospitals to seek more effective and efficient ways to treat them.

About 20.4 million patients over the age of 65 were treated in emergency rooms in 2011, up from 15.9 million a decade earlier, according to a national hospital survey conducted by the Centers for Disease Control and Prevention. As the population ages, older patients are expected to make up an increasing share of ER patients.

The Affordable Care Act also has fueled the expansion of senior emergency rooms. The law assesses penalties when too many patients return to a hospital too soon after discharge. Facilities have tried to reduce readmissions in part by providing better emergency care and triage.

Now, that growth could continue as hospitals face additional pressure to provide more efficient and less costly care to their Medicare patients. The Centers for Medicare and Medicaid Services announced in January that within two years, half of all traditional Medicare payments will go to providers based on quality of care rather than quantity of services.

Emergency departments are the perfect places to make changes that could help control spending, because they are gateways between home and costly hospitalizations, Hwang said. About 60 percent of elderly patients who get hospitalized come through the emergency room, according to a 2013 Rand Corporation study. A quarter of those hospitalizations are preventable, according to one 2012 federal study.

“Hospitals that before didn’t think there was any need for this are saying, ‘Can you help us create a geriatric ED?’” Hwang said.

Hospitals also may view specialized emergency departments as a marketing tool to reach the growing elderly population.

The geriatric emergency room at Mount Sinai is set up differently than traditional emergency rooms. It has thicker mattresses to help reduce the chance of bed sores, raised toilet seats, hand rails in the hallways and reduced-noise curtains.

The department is allotted 20 beds, but the main hospital sometimes steals them for other patients. That leaves some older ER patients waiting in the hallway.

Over a two-day period in May, dozens of older patients were treated for falls, dizziness, severe pain and shortness of breath.

John Fornieri, 80, came in after falling on his floor at home. Fornieri, an artist with arthritis and a heart condition, said he nearly lost consciousness. An x-ray showed he had broken a hip.

Fornieri said he was grateful that the geriatric emergency room staff was trained to care for the elderly. “Seniors need a different kind of attention,” he said. “We can’t see and we can’t hear like we used to. We can’t even talk the same.”

Denise Nassisi, a physician who runs the geriatric ER, said her patients are at greater risk of falling, medication errors and infections than younger patients. Seemingly routine injuries can have devastating effects. Broken arms, for example, can make it difficult for elderly people to care for themselves.

Many also have dementia or other cognitive impairments that make it harder to get an accurate account of their medical history and the reason for their ER visit, she said. About half of the patients arrive unaccompanied by relatives or caregivers.

In the past, Nassisi said, doctors frequently just admitted the patients, leaving it to the hospital staff to do a more complete workup. But now, Nassisi and her team of social workers, therapists, nurses and others try to screen, diagnose and treat patients more thoroughly in the ER, she said.

Part of their job is to determine whether older patients can be safely discharged. That means they aren’t automatically admitted to the hospital, which would raise their risk of confusion and loss of independence. “We are trying to change the culture of just admitting,” Nassisi said.

A patient doesn’t need a clean bill of health to be discharged. One 81-year-old patient came in for a toothache but also had a long list of illnesses: coronary artery disease, chronic pulmonary disease, arthritis, high blood pressure, prediabetes and high cholesterol. She was released with pain medication, antibiotics and an appointment with a surgeon.

Another patient, who was 83 and had high blood pressure, anxiety and cancer, had fallen in her kitchen. She, too, was discharged after staff ensured she could walk on her own and had help at home.

As providers determine where the patients should be treated, they also try to prevent them from becoming delirious, developing additional problems or taking potentially harmful medications.

Physician assistant Jaclyn Schefkind evaluated Hill, the 105-year-old patient.

“How are you doing?”

“Bad,” Hill said, wincing in pain.

Schefkind looked at Hill’s leg, red and swollen. She said they were going to get her some stronger antibiotics and something to relieve the pain.

“Let’s start with Tylenol,” Schefkind said. “I don’t want to give you something too strong because it’s not safe when you’re older.”

Shortly afterward, the team decided the best place to admit Hill so doctors could get her infection under control. A nurse pulled Hill’s blanket up to her chin, packed up her belongings and rolled her through the door toward the main hospital.

This story was reported while participating in a fellowship supported by New America Media, the Gerontological Society of America and The Commonwealth Fund.

KHN’s coverage of aging and long-term care issues is supported by a grant from The SCAN Foundation, and its coverage of late life and geriatric care is supported by The John A. Hartford Foundation.

By Anna Gorman

Featured image: Ponpirun / Shutterstock.com

Simple, stress-busting tips for seniors & caregivers

Simple, stress-busting tips for seniors & caregivers

Caregiving for your loved ones is exhausting- both mentally and physically, as well as time-consuming. But the reward of satisfaction that comes with caregiving is incomparable and unmeasurable. As parents age, they lose control over their mobility, and face challenges with activities of daily living sometimes due to a physical or mental disability.

If you are the caregiver or want to hire a caregiver, firstly assess your parent’s needs, arrange for medical care and associated services, cover transport to medical or therapist appointments and co-coordinate related issues. That means – caregivers need and should take advantage of all the help and support one can get.

Stress can be harmful to a caregiver’s and senior’s physical and mental health, and can lead to physical ailments, chronic disease, cognitive decline, as well as depression and anxiety. Most elderly people prefer to remain in their homes as they age. By taking steps to ensure that your loved ones are safe and well taken care of at home, are socially connected and are involved in activities that keep them occupied, you can play a vital role in boosting your loved one’s mental health.  

Here are some ways in which caretakers and family members can aid in senior care:

Delegate responsibilities

Work as a team, and delegate tasks to other family members if you are the caregiver of your aged parents, so that you get valuable insights into what needs to be done. Be realistic about who, how and when a member is ready to take up responsibilities, keeping emergency situations in mind, and recognize someone must in charge.

Recognizing the signs of stress

Common signs of stress in seniors include changes in eating habits-reduced appetite, changes in sleep patterns, memory issues, frequent illness, and social withdrawal. Take steps to help reduce stress to improve their mental and physical well-being.

Bridge the generation gap

Encourage seniors to participate in community activities that bring generations together, or plan a family get together so that grandchildren can spend quality time with their elders and also gain from their experience.

Get involved in activities that allow for creative expression

Encourage seniors to get creative, which is both engaging and mentally stimulating. Yoga, painting classes, physical fitness class, religious gatherings, brain games, or engaging in social work can all be beneficial for seniors.

Make home modifications to improve accessibility and safety

Challenges in movement, gait and other physical disabilities can restrict adult mobility. Make your home safe and more accessible to seniors by installing safety devices.

Plan shared meal times with friends and family

Sharing meals with family creates time for bonding, sharing stories, and provides a greater sense of belonging. Arrange for periodic family and friend’s dinners at someone’s home or at a restaurant to help keep socially connected.

Consider pet adoption for companionship

Pets, especially furry friends are often used as therapy to provide stress-reduction benefits, lifting seniors’ moods and loneliness.

Make use of technology

The use of technology has eased caregiving chores and worries. There are devices that can check your parent’s vital signs electronically, remind a person to take pills, help locate a person who has wandered from home and mobile phone apps provides patients and caregivers with a valuable feedback loop.

Caring for the caregiver

Taking care of caregiver (or yourself) is important so that you can keep up with other demands of your own life. Juggling with the demands of caregiving can take a toll on your health hence maintaining a healthy diet, getting enough sleep, and finding time for exercise can be helpful. Find ways to reduce stress by practicing meditation, pursuing hobbies that are relaxing like gardening, reading, listening to music etc. Be socially active to avoid isolation and depression.


By Henry Kingston

Henry Kingston is a passionate Health blogger, Loves writing as it’s his obsession. He has written on various topics like health care, non-medical home care for the elderly and about different other aspects of life. Follow @Henrykingston30 for more updates.

Why is caregiving stressful?

Why is caregiving stressful?

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

Lack of help

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

Endless tasks

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

Financial worries

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

Medical tests

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

Anticipatory grief

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

Referral and aftercare

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

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


 

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

The science of stress

The science of stress

Does this sound familiar?


Image source: Fix.com by Rick Aroroa.

 

Are you worried about the toll stress is taking on your life?

Caregivers aren’t usually able to address the cause of stress, but we can control how we react to it.

Cut stress in 15-minutes with these mindfulness techniques

Cut stress in 15-minutes with these mindfulness techniques

Mindfulness has ancient religious roots, but today it’s become a largely secular practice that’s been demonstrated to relieve stress, improve attention and memory, and reduce blood pressure.


Source: Fix.com. View the original post.

Nicola Brown

Nicola Brown is passionate about travel, food, digital media, and psychology. An award-winning writer and communication consultant, she is owner and principal of Think Forward Communication and Editor-in-chief at AnewTraveller.com

3 ways to get rid of stress – no judgements!

3 ways to get rid of stress – no judgements!

Among the lists of things that are common to humans, stress is one of them. We have all gotten stressed out at one point or the other; even babies feel stressed. I do three things to relieve stress depending on the nature of the stress, and the time and convenience I have.

Dancing

Dancing is one of things I do to relieve stress when I am at home, the location is convenient. It could be as simple as swaying to a slow rhythm or dancing to a pop song. I am not a very good dancer, but it doesn’t matter, I am not doing it to become a professional. I find dancing really helps relieve my stress. Sometimes I stand in front of a mirror to watch myself dance, I give myself little tasks like how many new dance moves I can invent or the different ways I could move my body. Seeing the different bizarre dance moves I come up with makes me laugh and before I know it, I’m not so stressed anymore. Other times, I play the song in my head without listening to it and just shake my body however I want, I make funny faces while dancing and just think of how people will laugh if they should see me right then, it makes me laugh even more. Dancing is a great remedy for relieving stress, especially if you are a goofy dancer like me, it works if you’re good at it too.

Talk it out…to myself

The other thing I do to relieve stress is talk about it to myself. Now I don’t want to look crazy talking to myself in public, not that I don’t do it sometimes, but I send myself text messages instead. Or write in the little notepad app on my android phone. It’s like having a friend you tell everything to the moment it happens, but when I actually think of ranting to my friend every single time I’m stressed, I also think of losing a friendship, so I rant to myself instead. I text myself short messages, it’s like checking on myself, I receive the messages and I respond. I use the notepad when I have a lot to say, I just keep on writing and writing till I’m sure I have fully vented. This works best when I’m on the train or in any sitting position, I just take out my phone and write about the issue. I also find it helps me put things into perspectives, for example I have found solutions to problems that give me stress by writing about it. Each thought I’m trying to write or text takes a while to process and within those little moments, things become clearer, it’s either I solve the problem or I just feel better about it. One day, I was on the train for two hours and I felt like I have really written a lot on my notepad app, so I decided to transfer it to Microsoft Word on my computer, just to see how much I had written, and I found that I had written five pages worth of materials about the situation, I was amazed and that alone made me feel great!

Daydream

Lastly, I daydream when I am stressed. I could be home or in public, but I am careful not to miss my stop while daydreaming on the train and I’m careful not to burn my food while daydreaming at home. There are other hazards I try to avoid while daydreaming, so generally, I daydream while laying on my bed or watching television, it’s safer that way. Usually, I would create characters my head and put them in my situation, rather than put myself in my daydreams. I would then think of happy stress-free ways in which my characters are resolving the situation or simply magically getting out of it. It makes me feel better to think of other people that might be facing the same issue, I don’t feel so alone and it’s just good to think of the fact that there might be a way for the issue to be resolved realistically or magically. Therefore daydreaming helps me in that sense. Sometimes I put myself in the daydreams and think of the farthest thing from the situation that is stressing me. This is what most people would do, it helps a lot too.

 

There are many unique ways in which people relieve stress, it might have become a habit or routine that we just do automatically without even thinking about it, but if we really think about it, we’d find we have our own individual ways of relieving stress. It could be universal too, it just means the method is so good, other people are using it.

How do you keep stress from getting you down?

Adrienne plays Words With Friends, Jonah plays pool, Ed works out (of course!), Harriet writes… share your favorite stress buster in the comments below or on the forum.

How I used billiards to cope with my stress and anxiety

How I used billiards to cope with my stress and anxiety

From a very young age I’ve valued the sacredness of being alone.

As a self-identified introvert I learned early that I function best when I’m able to steal away time for myself to recharge and gather my thoughts. I had the usual childhood stresses you could expect of any awkward middle schooler and the added instability growing up in a divorced family: constantly jostled between two homes. Amidst all the flux around me, I found solace in a practice and place that was entirely my own. At 13, I took up the game of pocket billiards (or pool in it’s more common day usage). My interest in the game wasn’t peaked by the usual connotations of seedy back room hustlers, cigarettes, whiskey and high stakes gambling, I found in the game purity, comfort and a safe place to cultivate my curious mind.

Pool was my escape and refuge from all the stresses and insecurities I wrestled with growing up.Jonah

I found beauty in the myriad of shots that lay before me every time I chalked my cue and stepped to the table. The table bed, the lay of the balls after the break, it was a place where I knew I could resolve the disarray before me, weaving my way in and out of clusters of balls with the most basic of tools: the power of my mind to conceive of the shots and my body to execute each careful and precise stroke.

As I grew through high school, I turned to the game more and more as a respite to clear my head from everything that felt hard, overwhelming or disappointing. I was lucky to have a Boys and Girls Club located right across the street from my Dad’s house. Even on my most busy days, spending 45 minutes as a study break to get on a table, was exactly what I needed to put everything that was cluttering my thoughts on hold. Somehow in the midst of shifting my gaze and mental focus to my practice drills, I was also letting my subconscious take over, mollifying all the worry and anxiety that was ready to detail me. Pool became a sort of social anxiety medicine for myself. I stepped out of my crazed environment, and took hold of something that I had a firm grasp of that I wanted to explore deeper.

I began to claim pool as an almost spiritual like practice.

My family and peers began to recognize the unique relationship I formed with the game. It was a breeding ground for deep self-investigation and a remedy or coping tool for the most difficult times in my life. I found time for competition too as I honed my skills, finding a mentor at 16 and going on to qualify and compete in the junior national 9 ball championships two years later. The benefits though of the game have always come back around to caring for my mind.

The benefits of discovering an outlet to manage overwhelming times in my life have been tremendous.

I’ve dealt with the sadness and disappointments of breakups and deaths, anxiety attacks and depression. Having learned now what it takes to be a caregiver, I’ve begun muse and reflect on the pool practice that I discovered so long ago because it’s proven to be a rock that I can continue to return to again and again.

Ways caregivers can cope with stress

As a caregiver, have you been stressed lately? In this video, PhysEd focuses on defining stress and techniques on how to deal with it. PhysEd emphasizes that exercising is the key to cope with anxiety, stress, and depression. PhysEd suggests that performing aerobic exercise for about thirty minutes a day can make a big difference. PhysEd also review questions that caregivers may be concerned about, such as, who will take care of a loved one if something happens to a caregiver? Lastly, it is always best to maintain a positive mindset as a caregiver.

Send out an SOS when you feel stressed

Send out an SOS when you feel stressed

At the beginning of your caregiving journey things were pretty simple. You provided a comfortable bed for your loved one, did the laundry, made medical and dental appointments, fixed nutritious meals, provided taxi service, and daily companionship. By itself, each task is simple, but life can change simple things to complex ones.

Your loved one may get a cold and be bedridden for days. She or he may develop a second chronic disease. A sudden toothache can change caregiving plans in a flash. Already short on sleep, you may become cranky, sleep deprived, and discouraged, so discouraged you want to send out an SOS distress call, the international signal for distress. While other caregivers are willing to help you, there are steps you can take to lower your stress.

Go to bed at the same time.

This recommendation comes from sleep experts and, though you may not be able to follow it every night, it is a worthy goal. Going to bed at the same time helps to program your body clock and expect sleep at that time. A good night’s sleep helps to prepare you for the next day.

Eat regularly and eat right.

Tempted as you may be to eat on the run, this isn’t good for digestion or overall health. Sugary snacks give you a temporary burst of energy, but this burst fizzles quickly. A wiser step is to keep healthy snacks – carrot stocks, apple wedges, and grapes – on hand when you need to munch on something. Almonds and walnuts may also quell your hunger.

Discuss thorny issues.

Diana B. Denholm, PhD, LMHC, offers this advice in her book, The Caregiving Wife’s Handbook. “Even in households with the best communication, some issues are daunting to raise,” she writes. Not discussing issues leads to stress build-up, according to Denholm. Her advice: answer questions yourself, prepare for conversations, use communication tools, set a discussion date, prepare yourself emotionally, and “create understandings.”

Stay physically active.

Several years ago, when my husband’s aorta dissected for the first time, I was so stressed I could hardly make conversation. He was hospitalized for days and I visited him every day. After the visit, I went to the athletic club and walked on a treadmill. A staff member recognized me and asked about my husband. I summarized the situation and she replied, “I love it when people use exercise to cope with stress.”

Schedule daily “Me Time.”

Writing is my special time. What is yours? Doing something for yourself each day renews your spirit and your energy. Your “Me Time” can be working on a hobby, reading, or going to a museum. While you’re caring for a loved one you need to care for you.

Care for your spirit.

You may do this with meditation, prayer, reading spiritual and religious books, attending church services, and volunteering in your community. In her book, Passages in Caregiving, author Gail Sheehy asks caregivers to explore and affirm spirituality. “Believers of all faiths can find solace in their own creeds and rituals,” she writes. “But even nonbelievers, faced with existential issues, may find that talking with a trained spiritual counselor . . . awakens feelings of compassion and communion with all humans facing the same issues.”

Connect with other caregivers.

You may also care for your spirit and yourself by logging into The Caregiver Space website regularly, reading the blogs, and posting blogs of your own. You are not alone. Thousands of caregivers are ready and willing to answer your distress call. Don’t feel guilty about asking for help. You are not a failure, you are a realist – a dedicated, loving caregiver adapting to life. We are in the caregiving trenches together, and can support and learn from one another.


The Challenges of Caring for a Loved One With Memory Loss in a Hospital Setting

The Challenges of Caring for a Loved One With Memory Loss in a Hospital Setting

One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.

It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:

 

  • They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
  • Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
  • They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
  • Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.

 

Now you have an understanding of what the potential reasons for enhanced memory or

behavior problems are. It is important to note there are concrete steps you can take to help

manage these problems or at least try to reduce the severity and longevity:

 

 

Work With Hospital Staff at time of Admission

The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.

 

Have a Familiar Family Member Spend as much time as possible with the patient

Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.

 

Discuss Hospital Policy on Management of Patient with Aggressive Behaviors

 

Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient.  Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.

 

Consistency of Staff and Routine

Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.

 

Placement of Patient

If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.

 

Visual and Verbal Reminders

Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”

 

Use Calming Techniques

Using a smile or gentle touch can go a long way to calming an agitated person.

Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why. 

Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.

 

Bring Familiar Items from Home

If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible. 

Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.

All caregivers deserve support

All caregivers deserve support

I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.

Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.

It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.

Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.

One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.

Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.

That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.

I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.

The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.

But there’s a solution.

We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.

We can still do that.

If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.

If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.

If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.

If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.

Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.

We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.

We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.

Let’s leave the political arguments for another Facebook page and get back to supporting each other.

Managing Conflict Between Siblings

Managing Conflict Between Siblings

Caregiving requires a lot from a person and takes its toll on everything, including family relationships. No one knows this more than the siblings tasked with the care of Mom and Dad. From sibling rivalries to dividing tasks, caring for one’s parents with one’s siblings can be the perfect setting for tension, conflicts, and disagreements.  

So how can we deal with these instances? During a time when siblings ought to working together, how can we avoid conflicts from arising? Or better yet, how can we deal with the hostility and differences?  

Long Term Care in America

We hear the struggles that many individuals go through when faced with long term care needs. We read about debt-ridden, older individuals outliving their savings. We watch reports of elderly individuals silently suffering abuse in one-star nursing homes.

Yes, we are vehemently against these instances, but we have always had a somewhat detached view of these occurrences. This all changes when our parents end up needing the care.

The reality is that long term care in the country is dismal. Without a solid plan, individuals and their families are left to face the sky-high costs. While some families are more than capable of shouldering the prices, many are left to look for other means.

This is why industry experts urge families, especially aging parents, to secure long term care insurance. As highlighted in Long Term Care Planning Series: Wives and Mothers Need It Most, many individuals have found solace in long term care insurance because it removes the burden of caregiving from the shoulders of adult children. It reduces the conflicts among siblings.

Common Issues Among Siblings

Friction among siblings can be normal, but it can also be disruptive, especially if not handled right. In order to address these issues, we must be able to identify them first:

Financial Issues

Caregiving costs money—a lot of it. According to the study conducted by AARP, family caregivers spend an average of $6,954 annually—nearly 20% of their income— on out of pocket expenses. Ideally, siblings equally split the bill that comes with caring for Mom and Dad. But at times, our siblings just cannot pitch in to cover the costs, and it can be frustrating.

Time Constraints

Being catapulted into caregiving can easily cause discord and disarray among siblings. Different people have different schedules, and sometimes schedules will clash. We all know that caregiving demands time and a great deal of effort, and we might feel as though the bulk of the task falls on our laps.

Willingness to See Mom and Dad in “that State”

Although the situation may call for all hands on deck, some siblings are just not emotionally prepared for the task. Seeing a parent’s health deteriorating will take its toll on all children, but some are just not capable of handling and coping with the situation. This may then cause resentment from his or her siblings.

Finding Common Ground for Better Caregiving

Issues are common among siblings, but we must not let it get in the way of our parents’ care. It is easy to feel slighted when the situation appears to be unfair. However, bear in mind that this is the time to work together and rely on each other for support.

Honesty and objectivity will help immensely during tense situations. Be direct with requests for help and discuss issues with an open mind. We must always remember that caregiving for our parents requires teamwork. We work together to resolve issues. We do not tear each other down and use stress as an excuse.

 

Healing the divide

Healing the divide

Every day, hundreds of Israeli volunteers drive ill Palestinians from the West Bank and the Gaza Strip to hospitals in Israel. Shaul Adar joins them on the road and learns why they see their neighbourly help as a step on the journey to peaceful coexistence.

At 6.30am, the Eyal border crossing is a picture of human misery. The official name is “border crossing”, but nobody uses this term. Israelis and Palestinians alike say “Makhsom” – meaning barrier or roadblock – which reveals the psyche of movement between Israel and the West Bank.

Thousands of Palestinian workers, mainly men, who have made it through the rigorous security check via steel pens, are looking for a bus, pickup truck or employer that will take them for a valuable day of work inside Israel proper. The narrow road leading from the crossing to the main road and on to the centre of Israel is gridlocked. Israeli police and border patrol are watching from a distance while it seems every traffic law is disregarded. It can take hours in overcrowded conditions, facing petty tyranny from the guards, and there is no guarantee of being allowed to the other side.

Behind rows of buses is a policeman from the Palestinian Police Force and Leila, his three-year-old daughter, who suffers from high blood pressure. They are on their way to Tel HaShomer hospital, near Tel Aviv, for treatment for the little girl. They are foreigners in this country – from Israel’s estranged neighbours, no less. Yet amid the car engines, horns and general mayhem, the father and daughter sitting on a rock appear to be the calmest people around. They are comfortable in the knowledge that someone is coming to pick them up. That someone is my brother, Amir Adar, a software engineer, a 60-year-old Israeli citizen and a volunteer for Road to Recovery, a group of Israelis who drive sick Palestinians to Israeli hospitals from Israel’s borders with the West Bank and the Gaza Strip.

Israel has occupied the West Bank and Gaza since the Six-Day War in 1967. Although there are hospitals in the West Bank and Gaza, they are not as well-equipped as the ones in Israel. Many people with cancer, people who need a transplant or children who need dialysis have to go to Israel for life-saving treatments. While the Israeli health system is not responsible for the health of Palestinians, the Palestinian Authority pays high tariffs for any treatment for its citizens (as well as those in Gaza), which makes the Palestinian patients welcome and valuable guests. The problem is getting them into Israel, and to the hospital, in the first place.

Today, both the West Bank and Gaza are fenced and Palestinians require a permit to enter Israel. There is some cooperation between the Israeli government and the Palestinian Authority, which runs civil matters in the West Bank, but the Hamas movement, which controls Gaza, is committed to the destruction of Israel.

Following the collapse of the Oslo Accords and peace treaty in the 2000s, the short journey from Gaza to an Israeli hospital is now a Herculean task. Sick Palestinians need to see a local doctor, who will refer them to a specialist, who then may ask to send them for treatment in Israel. From there, the Palestinian Authority Health Office will need to authorise it, get a permit from an Israeli coordination officer, find the right hospital, and send a commitment to pay the bill. This process alone can take weeks or even months.

With relationships between Israel and the Palestinians at a nadir, each case is scrutinised by both sides. To get the permit to enter Israel, Palestinians may be asked to work for the Shabak, or Shin Bet, Israel’s internal security forces. This makes any travelling patient a suspected traitor in local Palestinian eyes, while equally the Israelis fear a breach of security. The patient is only allowed one person to accompany them and that person must be cleared by the security services. Many, mainly young men, are not allowed in, so the burden falls on grandmothers and grandfathers to put a child at ease. Each journey in and out is a long haul of bureaucracy, checks and border crossings, and fear of being in the wrong place at the wrong time.

Palestinian patients make their way to the crossings from the West Bank and Gaza, clear all the checks, and then need to make the much longer, expensive and intimidating way across Israel. This is not a time when a Palestinian can feel safe inside Israel.

This is why my brother is here today.

Ordinary volunteers like him take sick Palestinians from border crossings to Israeli hospitals and back again. Without them, patients like Leila would have no option but to take a taxi into Israel, which is too expensive for most Palestinians. Road to Recovery’s 500 volunteers provide them with a free ride and the company of an Israeli to ease their fears.

Thanks to the morning rush hour, the 30 km drive takes three hours. The journey takes us through some of the most affluent neighbourhoods of Israel, a world away from the living conditions in the West Bank, and, traffic aside, there are no further problems or delays. “Shukran,” says the father warmly (thank you in Arabic). “No thanks needed,” answers Adar in Arabic. “It is my duty. It’s also an opportunity to brush up my Arabic.”

5.30am, Haifa

It is dawn the next day. I am at Rambam Medical Centre in Haifa, in the north of Israel by the sea. In a battered white Citroen people carrier named Junky are two girls from Gaza, and one mother and one father. The driver is Yuval Roth, the founder and engine behind Road to Recovery.

The 60-year-old white-haired Israeli is a semi-retired maker of stilts for performance artists, a former juggler who taught generations of Israeli jugglers, and son to a Holocaust survivor father. In 1993, he lost his brother Udi, who was kidnapped and shot by a Hamas unit on his way back home from a reserves service in Gaza. Roth’s reaction was to join the Parents Circle – Families Forum, a joint group of bereaved Israelis and Palestinians from the West Bank and Gaza. There they can share their pain and discuss ways to improve the situation.

In 2006, he was asked by Muhammad Kabah, a fellow member of the forum, to drive his brother for cancer treatments in Israel.

“For me it was just like a helping a neighbour,” says Roth, when he starts the 160-km journey south to the Erez crossing into Gaza. “I’m from Pardes Hanna and he is from a village near Jenin. There is a border between us but we are still neighbours. That was the start and then I had more requests, so I’ve asked for help from family and friends.”

Roth began driving sick Palestinians on a regular basis, with others soon joining his cause. Word of mouth spread, and six years ago Roth received a donation of US$10,000 from the singer Leonard Cohen, and Road to Recovery was born.

“His donation pushed me to found the trust and enabled us to increase the number of volunteers,” he says. The resulting media coverage has brought the organisation to the awareness of like-minded Israelis and in 2015 it was able to make more than 8,000 patient trips, covering over 550,000 km, with an operating budget of 570,000 shekels ($150,000). The proposed 2016 budget is double that, at 1.17 million shekels, raised largely from donations from Israel and abroad.

The greatest sacrifice the volunteers make is not the missed sleep, the snail’s pace of their drives or the waiting. It is losing the option to turn a blind eye to suffering. While most Israelis don’t want to know about the hardship of Palestinians, let alone sick Palestinians, Road to Recovery volunteers are brought face to face with the misery of the conflict’s most vulnerable people.

“I do it for many reasons,” says Adar. “First, to help people who need it the most. For me it’s not a tall order, nothing too demanding. It’s also a political act and I want to set an example for my children. This is the place I’m living in. If I close my eyes the problem will still remain. For any chance of an agreement in the future we must have a better day-to-day life right now. I owe it to myself as a human being not to sit idle.”

These are the last days of spring in Israel. Jacaranda trees are in full purple bloom, huge flocks of storks and pelicans are making their way back north to Europe, and the hills are still green before the harsh summer will turn them dry yellow. But the land is under a cloud. The relationship between Israelis and Palestinians has been deteriorating constantly since the breakdown of the Oslo accords, and today it is arguably worse than ever. Most young Israelis and Palestinians have no opportunity to meet each other; fear and hate are the prevalent feelings.

These are the days of incitement and a poisonous atmosphere. In April 2016, Bezalel Smotrich, a right-wing member of the Knesset, the Israeli parliament, said that he would not want his newborn child to be taken care of by Arab staff at an Israeli hospital. The remark revolted many Israelis. Israel is a highly divided society but the fact that an active member of parliament would say such a thing was shocking. The Israeli health system is supposed to be a meritocracy, with many Israeli-Arab doctors and nurses. Jews and Muslims and other minorities are meant to receive treatment without discrimination.

“Indifference drives me mad,” said Arnon Rotbart, 51, a lawyer in Tel Aviv, and a fellow Road to Recovery volunteer. He wishes the Israeli public would give more thought to the living conditions of Palestinians. “These people need help,” he told me when we met in his office. “They can value the goodwill of Israelis to show compassion and empathy and they can spread it around them. The hateful, aggressive approach, the utter indifference, is something that I want to make a stand against. When a member of the Knesset says that he doesn’t want to be near an Arab baby in the maternity ward because in 20 years time that baby will grow up to be a murderer, I want to ask why we won’t give that baby the tools to be our friend.”

I also met Road to Recovery’s coordinator with Hamas, who did not want me to publish her name. Her day job is in a factory, but in her spare time she works with Road to Recovery because, she says, every child deserves medical treatment and shouldn’t pay the price for the conflict. “I feel that Israel is responsible for the condition in the Gaza Strip, the hospitals and the lack of facilities. I can’t ignore it,” she told me.

I ponder this in the back of Roth’s car, as I talk with Maisa, the mother of Lian, a three-year-old girl. They live in Rafah, in the south of Gaza. The girl has had a liver disease and had to undergo a liver and kidney transplant. “I did some tests in Rambam and I was found eligible to donate a liver lobe. It was a very easy decision for me,” says Maisa in fluent Hebrew. “First she had the liver transplant and later the kidney and she is, praise God, all right. I’m also, praise God, well. We come every month or two for a check-up or if there is an emergency.”

Roth is driving the children to the border – the Eyal crossing – so they can get back home to Gaza. That is relatively far away from Haifa or the West Bank – a taxi would have cost the families around 500 shekels. A journey to Haifa from the Gaza border can last six hours, including inspections, but Maisa says that recently it has become much better. “We only have to go through a security check once. The staff at Rambam are very good to us. For me, it’s like a second home. We lived there for three years, and it’s like a family to me now. They give with all their hearts with true love to children and parents. They wake up in the early hours and they do good for people, for sick children. I’ve never heard of anything like it.”

As our journey to Rambam goes on, Roth’s two phones ring every few minutes. The garage is calling about a repair for his other car, Muhammad Kabah is looking for work, and there is a barrage of calls about a juggling festival Roth is organising in the next week during the Passover vacation.

“I used to be a mediocre juggler but I’m proud to say that I’ve raised generations of wonderful Israeli jugglers,” says Roth. “Everybody can be one and I taught many who became world-class. The key point is to throw the item correctly to the right place. Yes, gravity will bring it down but much later then you think. If you throw it right you make more time for yourself. So don’t panic! Once you understand it there is no stress and you can juggle away.”

I ask how many balls are in the air running Road to Recovery. “Today it’s about seven,” he says. “Manageable.”

The other girl in the car with us is Afnan, a charismatic nine-year-old from Gaza City. She is perhaps the organisation’s best-known patient, following an Israeli TV piece two years ago about the 2014 conflict known as Operation Defensive Shield. Afnan, then bald from cancer treatment, was on her way back home from Haifa with her father when, following a Hamas missile attack, the roads and crossing were closed. Staying in Haifa was the safe option, but Afnan was homesick after not seeing her mother and brothers for nine months.

The decision to turn back led to tears and heartbreak as Roth – also the driver that night – ended up detouring to Kibbutz Hatzerim near Beersheba, 200 km south of Haifa, where he grew up. With Israeli Air Force jets taking off from the nearby base on their mission to bomb in Gaza, and Beersheba targeted by Hamas rockets, Afnan met Israeli kids her age in a shelter. It was surreal. “They show that TV programme at universities now, in courses about conflict solving,” says Roth. “After just a few questions about the conflict, the kids started to play with her normally. Kids are clean, not yet corrupted by hate, and we need to learn from them.” A few hours later, the crossing opened and Roth was able to drive Afnan and her father to their home, albeit to a war zone.

Jerusalem Green Line. Palestine and Israel

8am, near Jaayus

Halfway to the Erez crossing, on the motorway to avoid the metropolis of Tel Aviv, you can see the olive-tree-covered hills of Samaria on one side and Greater Tel Aviv on the other, with the barrier, sometimes fencing and sometimes the infamous wall, separating Israel and the West Bank. I peer out the car window to the east, where, just a few kilometres away, is the village of Jaayus. Two days ago there, I met Naim El Beida, Road to Recovery’s Palestinian coordinator for the West Bank. He, alongside Roth, is one of two indispensable people to the operation.

El Beida works as a building site manager in Israel (“I helped build the country,” he said with pride). He is always with his phone and a big black diary, organising trips to hospitals and making sure there are no last-minute problems. El Beida, a peace activist, was referred to Roth when a poor relative was looking for transport for his sick son. The father knew that El Beida was well connected in Israel and a mutual friend told him about Roth. “I immediately liked the activity,” he told me. “I believe it is the path for coexistence, without violence or wars. These two people can’t separate; nobody will take us so we have to live together.

“One patient led to another and now I don’t have a moment for my own. My number is passed from sick person to another. My wife told me, ‘It’s the phones or me,’ but because of my belief in my work and the help it provides for my people I told her it will be the phones!”

Today, El Beida’s number is available in every Palestinian hospital and with every medical secretary. He is one of the first people a seriously ill Palestinian would call after receiving grave medical news. He helps in many ways – as a translator, a fixer, smoothing out small problems that get in the way of a patient getting treatment. He sees the families before the first trip and after it. The difference is huge.

“I know that everybody is afraid the first time. They don’t believe it can happen. If during the previous week a group of soldiers come into your home and mess it around and cause havoc and a day later, I tell them, a Jew will come to the crossing and take you to a hospital, you’ll be confused. Some people have never met nice Israelis like our members. Some of them have just met soldiers and Shabak security service – only threatening Israelis. One mother came back from her first ride and couldn’t believe it. She said: ‘These are Jews? The driver spoke Arabic and bought sweets for the kid.’

“I told her that there are many Jews, some are good and some are bad, and it is the situation that caused them to be bad. In a different situation we would have met and become friends.”

“I wake up at 3am for work,” he told me and four other Israelis who visited him that morning. “I return in the evening and then start coordinating trips until I collapse into bed. It does affect the family, the kids and my health, but it is my calling. I want to sow the seed of respect between the people and help everybody that needs it.”

10am, Moshav Ma’agalim

As our car drives further south we reach the light-brown borders of the Negev desert and turn west towards the Mediterranean. After a rainy winter the colours are a mix of the red soil and the dark green vegetation. The Israelis who live here are in the range of Hamas missiles and have had their share in the never-ending circle of violence.

Moshav Ma’agalim is a small cooperative of religious Jews, and when Roth makes a stop there to deliver stilts to a customer, everybody takes the opportunity to stretch their legs. You can feel the tension. Nobody says a word but some glances are exchanged and when we make the short way to the Erez crossing in less than half an hour, everybody is relieved.

While Road to Recovery has its supporters, a common reaction is “the poor of your city come first” – the Hebrew version of “charity begins at home”. In other words, why are you helping outsiders (and, to some, their enemies)? Roth does actually help poor Israelis as well, as part of his volunteering work outside of Road to Recovery. But that saying follows the volunteers everywhere. “Among my friends there’s a lot of support, but I keep hearing that phrase,” says Amir Adar. “I almost prefer blatant racism to this. I wonder how many of them help the poor.”

Road to Recovery is politically neutral, but the vast majority of the members are middle-class Ashkenazi (Jews of European descent) lefties. Some of them were high-ranking officers in the Israeli Defense Force, others were ordinary soldiers who 30 years ago served in Gaza and chased the stone-throwers they now carry in their cars.

There are a low number of Arab-Israelis among them, but a recent TV programme aired in January on Channel 2, the most popular TV channel in Israel, brought Road to Recovery a wave of new volunteers, with new moral conundrums for Roth to deal with.

Roth received a call from the head of Israeli settlers in the Samaria region, saying that they wanted to help. “I almost choked,” Roth tells me as we drive. “I told him that I’d call him back because I didn’t know what to do. I asked other members and they didn’t understand my question – they said yes, of course we should work with them, but it’s still not clear-cut for me.”

This is the kind of dilemma you can find in this crazy region. The settlers want to help but there remains an ideological rift for Roth. “I don’t have a problem with a right-wing Israeli – I’d welcome him into the organisation. But in my world there is no such thing as a nice settler. The fact you are a settler is the problem. Thanks for your will to help but you are sitting on a land that doesn’t belong to you and that’s a problem.”

10.30am, Erez crossing

We can see by now the fences around Gaza and a big wall; yellow signs warning not to take photos of the security facility welcome you to the big crossing at Erez. Despite this, it is a surprisingly modern and pleasant terminal, and our car is allowed to park near it. The kids, Afnan and Yuval, are clearly happy to be near home. Their parents unpack suitcases and plastic bags. Afnan, with a big green Maccabi Haifa Football Club bag on her back, carries a number of boxes of Matzoth, the unleavened substitute for bread for observant Jews during the coming seven days of Passover. She gives a hug to Yuval and the two of them and their parents make their way into the terminal to be examined by the two sets of crossing guards, Israeli and Hamas.

There are three more Road to Recovery cars parked here. One of them is driven by Amram Mitzna – a former brigadier general in the Israeli army, the second-highest rank, a former mayor of Haifa, and a former chairman of the Israeli Labour Party.

Among Road to Recovery’s other members are Aluma Goren, a former captain of the Israeli national basketball team, and Eran Schandar, a former state attorney.

What a contrast, I think, to the two children I am waving goodbye to. They are the most vulnerable people. They live in the harshest conditions under the despotic Hamas regime and the ever-watchful eye of Israel’s Shabak security service.

Even the Palestinian health bodies are not too eager to help such families, according to Road to Recovery’s Gaza coordinator: the Palestinian Authority in the West Bank is in conflict with Hamas in Gaza, so the Authority is less than keen to be seen helping people from the Strip. The contrasts between the abject poverty in Gaza and the affluence of Israel, the mayhem of daily life in Gaza and the Israeli bureaucracy, lead to a constant culture clash that can drive even the most committed person into despair. Even among Road to Recovery volunteers there are moments of doubt.

I hear stories of patients’ families turning treatment areas into storage spaces while they gather donations – money, goods – mainly from Arabs living in Israel. Roth says he’s heard the stories and can understand it to some extent, as some families come from terrible poverty. “Some of them don’t have anything.”

Yes, he says, there are some times when people take advantage of Road to Recovery, and some do rile him. Like yesterday, when a volunteer drove to Rambam Medical Centre to collect a patient who wasn’t there. It turned out that the family had gone out shopping in Haifa. “They didn’t understand what we are. We are not taxi drivers,” says Roth. “It happens every now and then, but 95 per cent are people who need us and without us they could die.”

“A Gazan is like an onion with so many layers,” said the coordinator. “They will tell you what you want to hear because they attempt to survive between Israel and Hamas. I know what happens in the cars, the relationships that are formed and the understanding that we are the same. That is why Hamas opposes our actions in principle. They are willing to let it happen because they know it is a matter of life and death. But they do it with gritted teeth.” (The Israeli government is more than fine with their activities – it secures money for the hospitals, after all.)

If running Road to Recovery is juggling with seven balls in the air, cooperating with Hamas is juggling them on a tightrope over a volcano. A lethal conflict is always a possibility, and once in a while there is a breakdown in communication. The last one was over a “fun day”, when the organisation takes sick Palestinian children not to the hospital but to the beach or a festival for relaxation. Hamas deemed this a step too far and “normalisation with the Zionist enemy”. But in most cases the desperate need for life-saving treatments helps ease the tension.

11am, on the road to Haifa

After a short break, Roth collects two young mothers with a toddler each and we head north once again. It’s another 160-km journey but Roth doesn’t show any sign of tiredness. It is a quiet, calm drive, although again Roth’s phones are buzzing with calls – at any one time it could be last-minute problems at a crossing or something to do with the juggling festival. But he values the drive. He says it’s time he can spend on maintenance of the most important resource – the volunteers.

In rare cases when a patient doesn’t turn up, or when a passenger’s family is brusque, Roth does his best to smooth things over. “A week ago a volunteer poured his heart to me after he drove somebody and didn’t get even a thank you or goodbye. They just left. I do understand his feeling. There are people like that but I try to remember we don’t know what they’ve been through at the hospital.”

Sometimes people get too involved. They form a bond with a family, and expectations that may not be met. By the nature of their work, volunteers have to deal with dramatic situations, such as when a nine-year-old boy with cancer had an infection and a high temperature. He had to go for emergency treatment in Israel, but could only go with his grandmother. The boy, fearing for his life, cried that he wanted to die with his mother by his side. Her permission arrived at the last minute, when the boy was at the crossing, allowing the mother and child to travel for the treatment that saved his life.

Naturally, there are also deaths, many of them of children. Road to Recovery volunteers may visit the bereaved. In some cases the relationship forged during the treatment is strong enough to be maintained even during and after a death. As Roth tells me, “We try and visit bereaved families and we are told, ‘Though our child has passed, it doesn’t mean we have to end our relationship.’ When it comes from them, it does give you strength despite the sadness.”

A long day’s work comes to an end as we pull in one last time to Rambam Medical Centre in Haifa. The two mothers and kids complete the journey and check in.

In a perfect world there would be decent hospitals for the Palestinian people. In a better world the Israeli hospitals and the Health Ministry would take care of the crossings and transportation. In the real world it’s up to Yuval Roth and his group. Roth’s next hope is to make Naim El Beida a full-time West Bank coordinator with an office. “That is the dream and it will make a huge change,” says Roth. “In the meantime our job is to drive the needy and by that to create a little hope, some pockets of a better future.”

Some names have been changed.

Be careful what you ask for

Be careful what you ask for

John was a highly successful civil engineer and a loving husband. He was by nature a real go-getter. And so when his wife was told that she would need complicated heart surgery for a dysfunctional heart valve, he went into full throttle. They arranged to have her surgery at the best cardiac hospital in the country. They flew to the Midwest for what they thought would be a few weeks’ stay—a few days to settle in, a lengthy surgery, and then two weeks for recovery and rehab. The plan was for them to return home where Linda would undergo an intensive program for cardiac rehabilitation in order to get her right back to her active life. John did his homework, learning about the possible pitfalls of this surgery, and figuring out how they would overcome each one.

But things didn’t go as planned, and Linda’s post-operative course grew more dire by the day. At two weeks, she remained on the breathing machine, one complication after another plaguing her recovery. John was at the bedside day and night, pacing the halls, begging for more information, reading all that he could about the complications that were arising and possible treatment options. He asked to join the doctors’ rounds every day and stood with them as they pondered the various causes of her deterioration. As they scratched their heads, he scratched his. As they discussed medication side effects, he suggested new ones to try. John loved his wife and he would do anything to save her.

Yet Linda continued to steadily decline, and by the time a mutual friend pulled me in for advice, it was obvious to me that she was dying. But when I spoke with John, I realized that he had no idea. He had been so consumed by the drive to cure her, come what may, that even though he understood each problem as it arose, he couldn’t see forest for the trees. And the doctors, his only guides through this terrain, had not told him. Rather than honestly delivering difficult news, they had supported him in his grief-stricken efforts to keep up the fight. Even when they must have realized it was lost.

John had asked for everything that he thought could possibly help his wife, and he had gotten almost all of it.

Most doctors, particularly those in the ICU, are trained to “do everything,” medically speaking. That means that as bodies begin to fail, we automatically reach for the machines and catheters that sit idling in the wings, using them to prop up organs, resuscitate hearts, breathe for failing lungs. These tools are truly miracles of modern medicine—many thousands of lives are saved by them every year in ICUs around the world. Yet when used on bodies that are truly dying, there are serious drawbacks. The number of overly mechanized deaths is rising. The statistics are staggering– 30% of people in the US die either in or recently discharged from an ICU. Many of them are on machines until their last breath or heartbeat, encased by machinery, separated from their family, and far from home. And this is not the way that most of us, when asked on surveys, would want to pass from this world.

How can this be happening? Why aren’t we reserving these powerful machines and treatments for cases where they have a good chance of helping? Why are we routinely treating patients in ways that go against common sense and stated preferences?

The answer is more complicated than it might appear. The physician, who is the de facto guide for medical decision-making, was trained in a culture which highly values the tools of our trade. Doctors are imbued with a sense that caring is best demonstrated through concrete action. More important, this same training did not prepare us for the breaking of bad news or the ability to recommend switching goals of care to a focus on quality of life as opposed to life-prolongation. We are poorly equipped to handle emotions of sadness or anger from our patients or their families, and see those responses, and the prospect of death in itself, as a sign that we have failed. And so we are inclined to just keep treating, instead of processing and reflecting on next steps, even after the trajectory has become painfully clear. Many of our patients therefore end up riding on what I have come to call the “End of life conveyor belt,” where their dying bodies become progressively dependent on our technologies and treatments until they die, attached to machines in an ICU or ventilator facility.

Within this shaky environment, the attitude and behaviors of patients and their families can have a big impact, whether exacerbating or productive, on the problem. The truth is that the doctor will take a lot of her cues from your behavior. Maybe it shouldn’t be that way, but I believe it’s true. We all want to believe that there is one “right” treatment path, and that it will be followed and tweaked along the way by some scientific formula, but the reality is much more human than that.

In times of stress, many of us appreciate marching orders. And the doctor is no exception. A clear directive can be a comfort, even if it has become outdated. Parsing out a patient’s preferences, current and future within various “what if” scenarios, wrestling with medical uncertainties, or moving a hopeful family into a more realistic place can be difficult, and at times, overwhelming for a physician. Research shows that it takes time and continued effort to help patients and families absorb bad news. And there is much difficult emotion to be faced by the doctor along the way, including anger, disappointment, and blame, something we are not well-trained to manage. And with a competent and eager surrogate like John on the case, who was committed to “doing everything,” it is disturbing but not surprising that the course was set at full throttle without re-evaluation.

But the good news is that doctors are also responsive to a different kind of messaging from patients and their families. If given permission, they are much more likely to give their honest assessments. If you want realistic information from your doctor, go ahead and ask her. Some options might include: What would you do if this were your mother? Do you think she’ll ever be able to talk again? Eat again? Breathe on her own? Will she ever wake up? Be able to come home with us? If you don’t want to know the answers to these very important questions, you may get pulled further along a course of care that, given opportunity for further reflection, you wouldn’t actually want. So I’d advise you to take a deep breath and ask for the truth you might think you don’t want to know.

When it comes to this stage of life, every moment is precious, and the best way to get what you really want is to have a clear understanding of what is going on. Sometimes your doctor needs your permission to go there.


Jessica Nutik Zitter, MD, MPH practices critical and palliative care at Highland Hospital in Oakland, California. An expert on the medical experience of death and dying, she is the author of EXTREME MEASURES: Finding a Better Path to the End of Life (Avery Books, Feb. 21, 2017). A graduate of Stanford University and Case Western Reserve Medical School, Dr. Zitter completed her residency in internal medicine at the Brigham and Women’s Hospital in Boston. She was a fellow in pulmonary and critical care medicine at the University of California San Francisco, and earned a Master’s in Public Health degree from University of California, Berkeley.

Jessica is at:

Twitter: @JessicaZitter

Facebook: /JessicaZitter

Talking about eldercare

Talking about eldercare

Are you thinking it’s time to schedule a family meeting to talk about your aging parents?

Don’t do it.

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I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.

Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.

Start the conversation

You don’t need a special occasion to talk about aging.

The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.

First, write down all the questions you have for your parents. Maybe you want to ask them:

  • What will you do if you need help every day?
  • How much can your family help you?
  • What would you do if you couldn’t stay in your own home?
  • How can you adapt your home to make it safer?
  • How can we pay for medical care?
  • How can we pay for home health care?
  • How can we pay for nursing care?
  • What’s most important to you if you become very ill?
  • Who do you want to make decisions for you if necessary?

Then, answer all of these questions for yourself. What would you want if you were ill or injured?

Look over your insurance policies, your medical coverage, your savings, and  your bills. Fill out a living will. Think about what your family would do without you.

Then think about how you should approach these topics with your parents.

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Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.

Know what matters

The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.

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The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.

These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.

These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.

Plan from the beginning

We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.

When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.

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Don’t make it awkward

Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.

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There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.

Then you’re talking about this amazing book you just read, not planning their demise.

If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.

An essential guide to manage your life as a parent and an ALZ caregiver

An essential guide to manage your life as a parent and an ALZ caregiver

I’ve once found my mother-in-law reaching for a slice of cake from our garbage can, as she was leaving the yard to go for a walk. Luckily, I was there to stop her from actually eating it and helped her get back inside. When I asked her why she would take that cake, she looked at me with a heavenly smile on her face, a smile much like those honest, angelic faces our kids make, and said “I was in the mood for something sweet, and you always make the best cake”. She didn’t know better and my heart tore right there and then.

A year and a half prior, she was diagnosed with progressive Alzheimer’s.

The street we live on is a cozy little space with no more than twenty houses; we’ve been there for our weddings and funerals, our kids crying for the first time and starting school. We’ve been holding each other’s hands in divorce, affairs, family tragedies and happy endings. In essence, life on our street is filled with love, laughter, secrets, gossips and friendship – everything about living here is colorful, perplexed and lifelike – just as we all are. And, after all these years, we are no longer just neighbors – we are family, with each other in sickness and in health. In a situation like mine, that helps a lot.

What is Alzheimer’s?

Alzheimer’s is the most common form of dementia, causing problems with memory, thinking and behavior. Alzheimer’s causes a memory loss so severe that it disrupts most people’s intellectual abilities, interfering with their daily life. The disease accounts for 60 to 80 percent of dementia cases. Alzheimer’s isn’t a normal consequence of aging, although it is most commonly linked with the elderly. Symptoms usually develop slowly and get worse over time, and currently – there’s no cure, even though research is ongoing.

A caregiver’s responsibility

With hospital stays getting shorter, more care is needed at home. While medication may help a little, every other form of caregiving boils down to having a lot of patience, love, understanding (of both the disease and the person having it), rationalizing the problem and being straightforward about it.

In our community, women are the traditional caregivers for both children and the elderly, so it’s important for women who take up this role to rationally approach it in order to find balance.

A year and a half ago, my mother-in-law came to live with us due to her diagnosis; at first, her state wasn’t as difficult to bear, but, in time, it started getting worse and we had to regroup. She joined our family, consisting of her son and me (we’re both employed full-time) and our two kids, her grandkids.

A novelty to all of us at the house, ALZ wasn’t really something we had ever dealt with. At first, it was all a game of guess-and-score but we’ve gradually managed to find a system that works, fortunately.

If you have an ALZ situation at home, here are a few things that may help you get more organized and lead a quality, undisrupted life (as much as possible):

Know your “enemy”

The first step to knowing what to do, how to act, and what measures of help to rely on is to gather as much information as possible about the affected person’s diagnosis, and make sure you are an integral part of their care and education team. If you are doing research online, be cautious; limit your online research to truly reputable websites and don’t trust everything you read. Ask the MD for recommended sites and reading material, and talk to them about the severity of, in my case, the in-law’s state. Apart from general reading, your MD is the best person to talk to about this condition.

Understand that it’s draining

Since you cannot change the circumstance you are in, change your attitude towards the problem; at first, it’ll seem like your whole world has crumbled and that you’ll never get back up. Stretched between my mother-in-law, the kids and their needs, my husband and myself, every new day at the house felt like dying. However, I didn’t – the situation has only made me stronger and had me think harder of ways to make things easier for myself.

To live through this – please understand everything about caring for a person with ALZ is very emotionally draining, as it is physically and mentally. You’ll be triggered often and on the verge of breaking, but accepting the situation is challenging will make things easier.

Build a support system

One of the unwritten rules of suburbia is to be there for the neighbors when you need them (and vice versa) – whether it’s in the middle of the day or night. You can call in a state of an emergency, and they’ll rush to your house with their uncombed hair and their unmade faces, in their pajamas and slippers. They’ll come and help, and that’s what matters.

Tell a few people from your neighborhood (or everyone, depending how tight you are) of your situation and ask them to help when they can. They can sometimes help sit in when you are at work, help the ALZ person find their way home if they get lost, or just be around the person with dementia so there are always familiar faces around. A person who has a dementia problem may start panicking and get scared when they are surrounded by faces they don’t recognize, so relying on people you can trust is (almost) crucial.

Talk to your children

Even without being told the facts, children will often be aware of difficult atmospheres and tensions. To avoid confusion and to make things slightly easier for everyone, talk to your children about the situation and explain what’s going on.

While you don’t have to use medical terms or get into intense elaborations, it can be reassuring for them to understand what the problem is. That way, they’ll not only be able to help, but they’ll also get an education on the disease. Further, the more they understand the situation, the more love, patience and effort they’ll invest into the relationship with the affected person.  Additionally, with the kids realizing their grandparent’s behavior is a part of an illness, they’ll feel a relief knowing it’s not directed at them.

Talk to your boss

With a problematic situation at home, it won’t be a surprise if your focus and commitment at work decrease. Before you get into trouble, talk to your superiors about the position you are in. See if there is a possibility of cutting hours or an extra day off. Also, if your job entails changing shifts often, ask your boss to fix one shift you’ll be working in. That way you’ll be able to set a schedule that will be beneficial for further organizing all the chores at home.

My personal advice is not to ask to work from home, because you’ll go nuts; focusing all of your energy on the problem and having it in front of you 24/7 will additionally drain you. Going to work will be a stress relief (as much as possible), as it a change of scenery and circumstance.

Split responsibilities

Ask your spouse to help, regardless of whose parent is affected. It is not up to you to have the entire burden on your back. If your kids are grown up and responsible enough, ask them to help, too – they can go for a walk with their grandparent, read to them, watch their favorite shows together, take them to their friends’ house – anything that will instill the diseased with pleasant emotions.

Mind the tone

It is very important for everyone at the house to understand that ALZ isn’t a form of planned behavior, but a sickness. To a healthy person, repeating one and the same sentence or question may be very frustrating, leading to stress and rude behavior.

Everyone in your family should agree not to raise their voice at the affected person or harm their dignity in any way; telling them they are stupid, crazy and annoying, mocking them or refusing to answer their questions (even if they’ve asked it a millionth time that day), you’ll be hurting them more than the disease does. Watch your tone and behavior, please.

Hire help

If it gets impossible to be the primary caregiver, hire help. Even, if your budget allows it from the get go, see to hire trained help that will aid in this situation. A person can come two or three times a week and provide any assistance your affected ALZ person needs. With amazing home care in San Francisco, my family has managed to work things out (as much as it can).

Consider a tracking device

There is a very arguable morality behind even suggesting something like this, but it’s very effective. If your affected person’s dementia is getting out of control and they are losing focus, leaving the house in the middle of the night, wandering around the neighborhood or hiding around the house or elsewhere, putting a tracking device on them (much like those you’d put on a pet), is very helpful.

Take care of yourself

Whenever you can, try to take care of yourself as much as possible.

Sleep, try physical activity or yoga for de-stressing, look not to miss pampering sessions or any type of soul food you’ve enjoyed – movies, galleries, theatre. Seek to see your friends often outside the house and talk of things other than ALZ. Eat your favorite food and enjoy it. Hug and kiss your kids as much as possible, they are the best therapy. Find solace in your husband, too. Join a support centre for people with ALZ (you can do this online or find one in your community) and share experiences with people going through the same. It is painful and unfair, the whole thing – but don’t forget to love yourself.

You didn’t ask for what’s happening, but you can deal with it, no doubt. Have faith in your strength and resilience, and be smart and organized with your game plan. You’ll get through it just as I have, I promise.

The One Word That Can Change Your Caregiving Experience

The One Word That Can Change Your Caregiving Experience

As family caregivers, it can feel as though there are more losses than gains in our lives. Our loved one loses their health and independence, and we can lose our time, identity, patience, and even careers. Change and loss become dependable constants in our caregiving life.

One of the most common complaints of change amongst caregivers is the feeling of isolation. With time as our most valued commodity and stress as our new and uninvited best friend, making room for the support we need is very often one of the first things we let fall by the wayside. We are simply too busy, and if we aren’t too busy, we are simply too tired to engage in the things that once made us excited.

Adding to that can be our friends who sometimes call less frequently, or make assumptions that we are probably too busy to attend the party and so the invite never gets sent, or we just can’t muster the energy to go to book club because it’d mean having to do one more thing that day. And sometimes it’s us who pull away from the friend that continues to perkily say of our terminally ill partner or parent, “They’re going to get better, I just know they will!” because that kind of fantasy doesn’t help us at all.

All of this is reason enough to say, “Good riddance!” to people for a while. Why bother with making plans you may have to cancel, attend parties that you could need to leave mid-champagne toast, or worse yet, need to get off the couch and fix your hair to attend? I give you full permission to say, “See ya!” to all that. But in saying goodbye I am going to ask you to say hello. Say, “Hello” to someone new, someone like you, someone who is also a caregiver. Why?

hello caregiver

Sharing your experience with someone else that speaks your language with no need for translation is a powerful way to be supported by someone who understands where you are coming from. If there is only one thing that you do for yourself this month, I urge you to make finding a new friend in caregiving be that thing.

Where might you find your new BFF? How about daring yourself to attend a local caregiver support group meeting? Or, there may be people who are members of caregiving websites you visit (like this one!) that you could send an email to and introduce yourself. Or you could do what I did in one of the most uncharacteristic moves of my introverted life…

When my dad was living in the memory care unit of an assisted living, I knew no one who had a parent in the same environment. I felt like an explorer without a map. The pain of watching his decline was on certain days unbearable. Visiting with him daily, I began to notice one or two other daughters passing me in the halls with frequency yet we never gave more than polite nods of hello to one another. Until the one day my caregiving experience changed forever and for the better.

Dad was one of two men living in the unit. The other man’s daughter was one of the women I saw just about every time I was visiting my father. She and I had done a lot of hello nodding to each other.

One fall afternoon as I was leaving for the day, this daughter was walking out the door about 40-steps ahead of me. Giving no thought to what I was about to do, I sprinted up ahead to catch her. Winded and catching my breath (because caregiver’s true confession: I wasn’t exercising regularly) I introduced myself and quickly realized that I was talking to one of the sweetest people I would ever meet. She blurted out her latest issues; I nodded and responded with lots of, “Yes! Me too” statements and before we left the parking lot, we had exchanged emails and scheduled a lunch with another daughter whose mom was also living in the unit.

That lunch with two strangers had happened one year before my dad died. To this day, five years later, the three of us, now former family caregivers, are still friends. What is unique is that we each were born in different decades, yet the experience of caregiving let us transcend our ages. We spent hours sneaking out to the diner for lunch after visiting our parents to share our stories and latest caregiving conundrums with each other. We looked in on one another’s parents and reported back with anything worthy of concern. We would fill our email inboxes with funny stories and updates. We took proactive trips to visit the nursing homes that we would eventually need to admit our parents into after inevitable declines in their health. We combined our families and shared a Christmas celebration in the unit the year our parents were not well enough to travel. We were there at the funerals with lots of chocolate, flowers and emotional support. And, we were there and are still here to offer listening ears to the unique feelings that appear post-caregiving.  

When I think of my caregiving friends, I’ve never felt to be truer the expression, “I don’t know what I would have done without you.”

Caregiving and the people you will meet change your life in the most new and unexpected ways. Why not go out and meet one of these people today? All you need is the word, “Hello!”


Want someone to talk to? Sign up for our caregiver buddy program, join our private Facebook group, or join the conversation on our caregiving forums.

Carrying Out Caregiver Duties Without Burning Out

Carrying Out Caregiver Duties Without Burning Out

According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.

In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.

Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”

With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.

In this article, we want to briefly overview three essential ways to do just that.

1. Engage Family & Social Networks

As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.

To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.

2. Mind Your Own Health

As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.

A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.

Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.

3. Take Advantage of Specialized Support

There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.

You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.

Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.

Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.


By Adinah East, VP Quality Improvement, Caring People Inc

Book Review: Connecting Caregivers

Book Review: Connecting Caregivers

Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask

Edited by Linda Burhans

198 pages, Skylar Thomas Publishing (June 1, 2016)

 

Connecting Caregivers is a collection of writings by experts in the fields of aging, dementia, home care and other related fields, offering hard found wisdom and practical resources for caregivers. Ms. Linda Burhans, a caregiver advocate who has facilitated over 1,200 support groups and workshops for caregivers, contributes personal stories from her work and edited the book. She describes herself as the gal who cares for the caregivers.

A Book By Many Authors

Each chapter is organized under one of the three parts: “Learning to Navigate,” “Learning to Cope,” and “Learning to Accept.” Some provide detailed information about practical matters, such as finding the right home care service, while others offer perspectives on changing cultural attitudes towards aging. The topics do vary and each could be published as separate articles on their own. The information from one chapter does not necessarily relate to the following one. Readers may find the book most useful as a reference on specific topics, such as dementia care and the help a geriatric care manager or aging care specialist can provide to families in navigating the “healthcare maze.”

The chapters do not seem to be focused on specific perspectives or angles. Christine Varner’s chapter on signs and symptoms of dementia begins with her acknowledgement that she had trouble finding the flow of the chapter as she began to write, and follows with details about her dad’s diagnosis of Lewy Body disease. Some chapters seem like short notes. The chapter, “The Caregiver “AAA” Dilemma,” was two pages long and urged the reader to ask for and accept help.

Sprinkles of Inspiration and Pockets of Advice

Most of the chapters take on a conversational tone, as if a counselor is sharing advice with you. Ms. Burhans’ touching stories from her work with caregivers are scattered between chapters. Her story about Mike, who dyed his hair and dressed in clothes from his younger days to ignite his wife’s memories of him, is heartrending, while demonstrating how a bit of creativity can help connect with those suffering from dementia. Another memorable story is the one of a bedridden, former teacher who found purpose again in helping a child discover the love of reading.

The chapter, “Power of Story” by Paula Stahel reminds the reader that sickness does not remove a person’s lived past and that many have incredible stories to share. She suggests recording their stories by asking open ended questions and recording the conversations or hiring a professional historian.

Along with the inspirational stories, there is also advice on functional matters such as understanding home care options and legal preparation for incapacity. The chapters discuss the different kinds of dementia, meaningful engagement with those who suffer from it, and transitions to memory care communities. Authors also promotes journal writing and support groups as caregiver self-care tools. One author, Ms. Mary Jane Cronin, offers writing prompts for those new to journal writing.  

A couple of chapters (“What Are the Signs and Symptoms of Dementia and What Should I Do?” and “Is a Memory Care Community the Right Choice for My Loved One?”) emphasize that there is “no heroism in doing it alone.” It is not only okay, but imperative, to ask for and accept help from family members in caring for sick loved ones, and to use resources such as adult day care, home care, respite care, and residential programs.

Don’t Forget to Connect With Your Loved Ones

An important message I got from “Connecting Caregivers” is that family caregivers must acknowledge their own feelings (for instance, of guilt, resentment, loneliness, confusion). With acknowledgement, a caregiver may begin to learn to accept what they cannot change and even to “just be” with their sick loved ones.

Ms. Carole Ware-McKenzie’s chapter has a great reminder for caregivers – see your loved ones as people. That’s often forgotten by caregivers as we juggle medical appointments, bills, and chores and sometimes treat them as responsibilities to bear. Ms. Ware-McKenzie writes, “[j]ust realize, when you are looking at the lady in her wheelchair, that is the sum of who she is. She had dreams, goals, and adventures that are still playing in her head.”

“Connecting Caregivers” affirms to readers the struggles of caregiving and offers possible ways to manage stress and challenges, and perhaps to even have fun while doing it.  

Podcasts to help you get to sleep

Podcasts to help you get to sleep

Getting to sleep when you’re dealing with the stress and anxiety of caregiving — and anticipating your next interruption — is no easy feat.

Luckily, there are podcasts to help you slip back into slumber. Here are a few I’ve tried and found helpful.

Sleep With Me: A sleep inducing podcast

This collection of meandering monotone monologues is just like that history teacher who you couldn’t stay awake for. It’s a sure bet.

Game of Drones: The Game of Thrones sleep aid

Another project by the same folks as Sleep With Me, but for Game of Thrones fans. You might not believe GoT could be so boring, but he’ll prove you wrong and help you get a good night’s rest.

Deep Energy: Music for sleep, meditation & relaxation

If you want something without words, this is the answer.

The Daily Meditation Podcasts

These meditations aren’t specifically designed to help you fall asleep, but they do the trick for me. They’ve also been helpful in making my every day life a little smoother.

The Great Detectives of Old Time Radio

I sometimes find that these old time radio detective stories keep me awake with suspense, so tread with caution.

Orvis Fly Fishing Guide

My grandfather’s instructions had a knack for putting me to sleep, so this one works wonders for me.

On Being

This interview podcast may not quite put you to sleep, but it’s relaxing and informative.

How to Begin the Conversation About Care and Aging

How to Begin the Conversation About Care and Aging

If you have a loved one who is aging the issue is not if but when a time will come that additional help may be needed. In my experience as a medical social worker and a caregiver for my parents I know this is a conversation that is very difficult to initiate. Nobody likes to talk about aging, illness or death. Let’s be honest, this is something we all will face. This conversation involves tackling tough topics:

  • Getting sick and not being able to care for yourself.
  • What do you want done if you are unable to make medical decisions for yourself.
  • How do you feel about aging and eventually facing your own death?
  • What insurance or money do you have available if you need additional help?
  • Is it time to leave the place you have called home?
  • Is your will or healthcare power of attorney properly completed?

 

You want to start this conversation from a place of love and caring. It also has to be a collaboration. You also have to start slowly and be aware that it is a process. This will not be one discussion but a series of talks over time as circumstances change and new challenges may arise.

There are things you can do to help it go as smoothly as possible:

 

Start Early

Begin the conversation when your parents are alert and healthy and can make decisions from a competent place. They will be more comfortable and less defensive having this discussion when there are no current problems or deficits.

Wait for an Opening or Create One

Move slowly. Mention a friend whose parents are ill or that you are updating your will. Suggest that it got you thinking about your mom and dad. Ask if they have thought about aging and what they would want to happen? What kind of help would they want and from who? Would they want to remain at home or consider moving to a place where more support might be available?

Motivation

Share the reason you are wanting to talk about this. You want them to be safe, prepared, and understand what options are available for them. You are not angry at them and don’t believe they are incompetent if that is true. Tell them you want them to continue to have as much quality in their life as possible and you want to contribute to make that happen.

Timing

Make sure the time you initiate this discussion is optimal. Don’t do it when you have to leave in half an hour. Do it when there are no distractions or additional people that don’t need to be a part of the conversation. Don’t include too many people because that may make your senior feel more defensive. Choose a stress free time to initiate this talk.

Participants

If you have a good relationship with your parents than you may be the ideal candidate to initiate this talk. If not you may want to include a trusted family member  friend, doctor, priest, neighbor, that can help your loved ones feel more comfortable about addressing these sensitive topics. If you are doing this with someone else you may want to meet ahead of time to plan on what direction you want the conversation to go and who will play what role. Rehearse what you want to say and try to anticipate their responses. Make sure the message you give your parents with someone else is a unified message.

Choose the opening topic

You don’t want to throw out all of these major questions at one time. That will feel overwhelming and cause any future discussion to derail. Pick the topic that you believe is most relevant to them and one that your parents will be most open to.

Maybe they just came back from a doctor visit. You can use that as a place to begin to address questions about potential health concerns. If you know they are feeling their home is becoming harder to maintain that gives you an entry way to ask about what their thoughts are  about the next step if the house becomes increasingly hard to manage.

Some Final Thoughts

If the conversation does not go well don’t be discouraged.  A process has begun that you can return to and reference at a future date. Take notes about what has been said. Perhaps you can all agree on a future time to set including whatever requests your parents make regarding the parameters. Maybe the participants can agree to gather information to facilitate the next meeting. Ask your parents if there is someone else they would like to attend future discussions.

Try to remain empathetic and compassionate with each other as you enter this uncharted water. If it is clear you need an impartial mediator to manage the discussion you might want to get a geriatric care manager. They can be found at aginglifecare.org.

Finally, be patient. This is new territory for you all. When a parent agrees to work through these issues, there is no greater gift they can give you.  

Working while caregiving: how we do it

Working while caregiving: how we do it

Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.

Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.

Lauber Rick - On Bench with BookRick Lauber

When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.

Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.

A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.

In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.

Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.

In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.

He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.

Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Richard Lui

MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!

He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.

Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.

Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.

His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.

Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.

While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.


So many of our community members are in this situation. Here’s what a few of them have to say…

I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb

I have [professional] caregivers during the day, so I can work. – Cathy

I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa

I feel part wife / part maid/ part cook / and I work part time. – Susan

I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley

I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel

I have to do everything plus work full time. – John

I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison

I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie

When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia

I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina

I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia

I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara

I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy

I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith

I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter

Some comments have been lightly edited for clarity


Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.

If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.

Many Cancer Survivors Change Their Prescription Drug Use for Financial Reasons

Many Cancer Survivors Change Their Prescription Drug Use for Financial Reasons

A new analysis indicates that many cancer survivors change their prescription drug use (including skipping doses or requesting cheaper medications) for financial reasons. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study provides important information on the financial burden experienced by cancer survivors, suggesting non-elderly cancer survivors are particularly vulnerable to this phenomenon.

Although research has shown that cancer drugs can represent considerable costs for cancer patients and their families, there is limited information about changes in prescription drug use for financial reasons among cancer survivors. To further investigate this, researchers from the American Cancer Society, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health used 2011-2014 data from the National Health Interview Survey, an annual household interview survey conducted by the CDC. This nationally representative survey included 8931 cancer survivors and 126,287 individuals without a cancer history.

Among non-elderly adults, 31.6 percent of those who had been recently diagnosed and 27.9 percent of those who had been previously diagnosed (at least two years earlier) reported a change in prescription drug use for financial reasons, compared with 21.4 percent of adults without a history of cancer. “Specifically, non-elderly cancer survivors were more likely to skip medication, delay filling a prescription, ask their doctor for lower-cost medication, and use alternative therapies for financial reasons compared with non-elderly individuals without a cancer history,” said the American Cancer Society’s Ahmedin Jemal, DVM, PhD, a senior author of the paper. The study also showed that among privately insured non-elderly cancer survivors, one-third of survivors enrolled in high-deductible plans asked their doctor for lower-cost medications compared with less than one-fifth of survivors enrolled in low-deductible plans.

Changes in prescription drug use for financial reasons were generally similar between elderly cancer survivors and elderly individuals without a cancer history. This is likely because of uniform healthcare coverage through Medicare.

The findings may have significant policy implications. “Healthcare reforms addressing the financial burden of cancer among survivors, including the escalating cost of prescription drugs, should consider multiple comorbid conditions and high-deductible health plans, and the working poor,” said Dr. Jemal. “Our findings also have implications for doctor and patient communication about the financial burden of cancer when making treatment decisions, especially on the use of certain drugs that cost hundreds of thousands of dollars but with very small benefit compared with alternative and more affordable drugs.”

In an accompanying editorial addressing the financial toxicity of cancer, Daniel Goldstein, MD, of the Rabin Medical Center in Israel and Emory University, stressed the need to avoid unnecessary testing and treatments. He added that “when two different treatments exist with equivalent efficacy and safety, the cheaper treatment should always be chosen.”


Full Citation: “Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States.” Zhiyuan Zheng, Xuesong Han, Gery P. Guy Jr., Amy J. Davidoff, Chunyu Li, Matthew P. Banegas, Donatus U. Ekwueme, K. Robin Yabroff, and Ahmedin Jemal. CANCER; Published Online: February 20, 2017 (DOI: 10.1002/cncr.30560).

About the Journal
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.

Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

New Federal Rules Will Require Home Health Agencies To Do Much More For Patients

New Federal Rules Will Require Home Health Agencies To Do Much More For Patients

Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.

The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.

They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.

Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.

The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.

While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.

“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).

Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.

Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.

Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:

Patient-Centered Care

In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.

Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.

“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.

While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.

Patient Rights

For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.

Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.

A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.

NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.

Caregiver Involvement

For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.

Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.

“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.

Plans Of Care

Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.

“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.

In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.

Discharge Protections

Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.

The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.

“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

By Judith Graham

10 Financial Questions All Parents Must Discuss With Their Children Before It’s Too Late

10 Financial Questions All Parents Must Discuss With Their Children Before It’s Too Late

No one can predict the future. As mom and dad start to age and life gets a little more challenging, we do our best to tend to their medical needs to keep them as healthy for as long as possible. But one area that is often overlooked by many parents and their kids is having the money talk. Who inherits any assets that mom and dad have? Who oversees the estate? Is there enough money to pay for a home healthcare worker if needed?

When illness or death strikes, it’s a stressful time. To make things easier on everyone, it’s best for parents to talk about finances with their children years ahead of time, when everyone can think clearly and is more relaxed.

While there is indeed a lot of ground to cover, here are 10 must-ask questions that need to be answered.

 

  1. Have they named a durable power of attorney to manage their finances?

The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.

 

  1. Where do they keep their financial records?

Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also, find out the location of keys or codes to lock boxes or safes.

 

  1. What are their bank account numbers and names of their financial institutions?

In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?

 

  1. What are your parents’ monthly expenses?

Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.

 

  1. How do they pay their bills?

If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?

 

  1. How much is their annual income and where does it come from?

Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?

 

  1. Do they receive Medicare, Medicaid or Social Security?

If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.

 

  1. What kind of medical health insurance do they have in addition to Medicare?

Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?

 

  1. Do they have long-term care insurance?

A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?

 

  1. Do they have an accountant or financial planner?

Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.

 

It’s best for parents and children to figure things out about money and plan for the future as soon as they can. All too often it’s too late, and trying to discuss money in a stressful time leads to more stress, arguments, saying things you regret, hurt feelings and broken relationships. Have the money talk now, before it’s too late.

 

Kurt Kazanowski, MS, RN, CHE, is author of A Son’s Journey: Taking Care of Mom and Dad, and has more than three decades specializing in hospice, home care and senior care.

How should you grieve?

How should you grieve?

The pain and sorrow of bereavement is supposed to get easier to bear as time passes. But what if it doesn’t? Psychiatrists call it ‘complicated grief’ – and it can be treated. Andrea Volpe reports.

After Stephanie Muldberg’s 13-year-old son Eric died of Ewing’s sarcoma in 2004, she was lost in a sea of grief. Her days were long, unstructured, monotonous. She barely left her New Jersey home. When she did leave, she planned her routes carefully to avoid driving past the hospital, just a few miles away, where Eric had been treated during the 16 months of his illness, or the fields where he had played baseball. Grocery shopping was a minefield, because it was painful to contemplate buying Eric’s favourite foods without him. To enjoy anything when he could not felt wrong. And Muldberg never thought she would be able to return to the temple where he had celebrated his bar mitzvah – and where his funeral was held.

Looking back, she describes herself as not knowing how to grieve after Eric died. “I didn’t know what to do, how to act in front of people – what I needed to do privately, who I could reach out to. I was fearful of making people more emotional, too emotional, and having to comfort them,” she tells me, by Skype. “I didn’t know how to talk about what I was thinking.” Muldberg’s long dark hair is pulled back and she’s wearing a white T-shirt. One of the things she says is that she thought if she stopped grieving, her memories of Eric would fade, and she’d lose her connection to her son for ever.

The passage of time often seems the only remedy for grief, but time didn’t help Muldberg. In the years following Eric’s death, she says, she felt consumed by grief. Then a family physician heard a talk by Columbia University psychiatrist Katherine Shear about treating chronic and unremitting grief and thought Shear might be able to help her.

Four years after Eric died, Muldberg arrived at the New York State Psychiatric Institute in Manhattan, for her first meeting with Shear. She answered Shear’s questions with as few words as possible. It was as if she were barely present in the small, windowless room. Her face was drawn and clouded; she sat crumpled in her chair, arms crossed tightly around her, as if the weight of her loss made it impossible to sit up straight. It felt to her as if Eric had died just the day before. Shear diagnosed Muldberg with complicated grief, the unusually intense and persistent form of grief she has been researching and treating for almost 20 years.

Grief, by definition, is the deep, wrenching sorrow of loss. The initial intense anguish, what Shear calls acute grief, usually abates with time. Shear says that complicated grief is more chronic and more emotionally intense than more typical courses through grief, and it stays at acute levels for longer. Women are more vulnerable to complicated grief than men. It often follows particularly difficult losses that test a person’s emotional and social resources, and where the mourner was deeply attached to the person they are grieving. Researchers estimate complicated grief affects approximately 2 to 3 per cent of the population worldwide. It affects 10 to 20 per cent of people after the death of a spouse or romantic partner, or when the death of a loved one is sudden or violent, and it is even more common among parents who have lost a child. Clinicians are just beginning to acknowledge how debilitating this form of grief can be. But it can be treated.

I first learned about complicated grief while riding the subway in Boston, where I read an advertisement recruiting participants for a study at the Massachusetts General Hospital, which I later discovered was related to Shear’s research. By then, I’d been a widow for about a decade. I was 33 when my husband died and it was fast – just six weeks from when he was diagnosed with pancreatic cancer. My grief had a different kind of complication: I was pregnant, and our son was born seven months after his father’s death. By the time I read that subway ad, he was in elementary school, and I was holding my own. I gradually went back to work. Single parenting was overwhelming, but it kept me focused on what was right in front of me. Having a young child is filled with small pleasures and motherhood enlarged my sense of community. I fell in love again. But it still felt like I walked with a limp, and that limp was grief.

Often, I felt that the course of my grief – as it slowed or accelerated – wasn’t within my control. Sometimes I’d buckle, and wait it out. Sometimes I’d push back. Somehow, I knew it was going to take as long as it took. There wasn’t anything to do about it except live. Freud, writing in Mourning and Melancholia, one of the first psychological essays on grief, saw it this way, too: “Although mourning involves grave departures from the normal attitude of life, it never occurs to us to regard it as a pathological condition and to refer it to a medical treatment. We rely on its being overcome after a certain lapse of time, and we look upon any interference with it as useless or even harmful.” That’s how it went for me.

I’d be the first to say that my path through grief has been intellectual. I’ve spent years contemplating what grief is. That subway ad made me wonder: Was my grief a disease? To be diagnosed with an illness is to seek – or wish for – a cure. But conceiving of grief as a disease with a cure raises questions about what is normal – and abnormal – about an experience that is universal. Is grief a condition that modern psychology, with its list of symptoms and disorders and an ample medicine cabinet, should treat, as if it were an illness rather than an essential part of being human?

A little more than a year ago I began sitting in on clinical training workshops at Columbia’s Center for Complicated Grief, which Shear directs. The first workshop was both a challenge and a relief. It was strangely comforting to be in the company of so many people – grief counsellors, social workers and therapists – who spent their time thinking about what it meant to grieve. It would be almost another year until I called Stephanie Muldberg to see if she’d be willing to talk at length about what her treatment was like.

Sometimes I can feel in our conversations how deliberately she chooses her words. She is, she tells me, a very private person. At times her desire to talk about her experience of complicated grief feels in tension with her natural inclination to be more self-contained. “I think the problem is people don’t talk about grief, and I want to normalise the fact that people can talk about it, and make it easier, and not so taboo,” she tells me.

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For something so fundamental to being human, there’s still a great deal we don’t know about the grieving process. It wasn’t until the 20th century that psychologists and psychiatrists claimed expertise over our emotions, including grief. The conventional wisdom about grieving is that it’s something to be worked through in a series of stages. Lingering on any stage too long, or not completing them within a certain window of time, might be dysfunctional. Clinicians disagree about how long is too long to grieve, about whether the grieving person should wait for her grief to shift on its own or do something to initiate that process, and about what to do, and what it means, if grief is slow or stalled.

The idea of grief as something we need to actively work through started with Freud. John Bean, a psychoanalyst who has trained extensively with Shear and worked with her to treat patients in her research studies, explains to me that because Freud believed we have a limited supply of psychological energy, he viewed the central emotional “task of grieving” to be separating ourselves emotionally from the person who died so that we can regain that energy and direct it elsewhere. Freud thought this would take time and effort and it would hurt. His theory of “grief work” persists, often in tandem with newer theories of grief.

If grief is work, then Elisabeth Kübler-Ross provided the directions for how to do it. Kübler-Ross first proposed the five-stage model in 1969 as a way to understand the psychology of the dying, and it quickly became a popular way to understand bereavement. Today, those stages – denial, anger, bargaining, depression and, finally, acceptance – are practically folklore.

But it turns out grief doesn’t work this way. In the past several decades, more rigorous empirical research in psychology has challenged the most widely held myths about loss and grief.

When George Bonanno, professor of clinical psychology at Columbia University’s Teachers College, researched the paths people take through grief, he discovered there’s more variation to how we grieve than psychologists thought. His office, in a massive gothic brick building in New York City’s Morningside Heights, is crammed with books and lined with Chinese sculptures. On a rainy afternoon he outlines the three common paths he identified. Some people, whom he terms “resilient”, begin to rebound from loss in a matter of weeks. Others adapt more gradually, following a “recovery” path. The intensity of those first days, weeks and months of mourning subsides. They “slowly pick up the pieces and begin putting their lives back together”, typically a year or two after losing someone close to them. People with complicated grief, like Muldberg, struggle to recover. Their grief becomes what Bonanno calls “chronic”, staying at a high level of intensity for years.

One school of thought that has influenced Shear is called the dual-process model: grief is stressful, so we alternate between confronting the emotional pain of our loss and setting it aside. Even grieving people, research has shown, have moments of positive emotion in their lives. Hope returns gradually. If the stage model maps a single, clear path through grief, then the dual-process model could be seen as a charting a wave pattern through grief.

It’s now an axiom of grief counselling that there’s no one right way to grieve. That seems like a good thing, but it’s also a problem. If everyone grieves differently, and there’s no single theory of how grief works, then who’s to say that someone like Muldberg isn’t making her way through grief in her own way, on her own clock? Even though it was clear to her and to those around her that, four years after her son’s death, she was still suffering, bereavement researchers don’t agree about how to explain why her grief was so prolonged – or what to do about it.

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Shear, who is in her early 70s, is the warmest shrink you’ll ever meet. Everything about her conveys equanimity, especially the way she can sit with the stories of patients whose grief is unrelenting.

It wasn’t always that way. “At the beginning,” she tells me, she was “afraid to sit in the room with someone who was really intensely grieving because I was still a little bit uneasy with death and dying, but also because it makes you feel so helpless – because you feel like there’s nothing you can do”. The grieving person, she says, “feels like the only thing that’s going to help” is bringing back the person they are grieving – “and you agree”.

“Grief is not one thing,” Shear says. “When it’s new, it crowds out everything else, including even people and things that are actually very important to us. It stomps out our sense of ourselves, too, and our feelings of competence. We think of grief as the great disconnector, but over time, it usually settles down and finds its own place in our lives. It lets us live in a meaningful way again. It lets us have some happiness again.”

Two weeks later, I’m jammed into a hard plastic desk in an overheated university classroom listening as Shear, who is professor of psychiatry at Columbia’s School of Social Work, explains the underlying principle of her work, which is that “grief is a form of love”.

She quotes me C S Lewis’s A Grief Observed to explain what she means: “Bereavement is an integral and universal part of our experience of love. It is not the truncation of the process but one of its phases; not the interruption of the dance, but the next figure.” This is called an attachment approach to grief. It’s shared by many grief researchers and counsellors, and it can be traced back to the British psychiatrist John Bowlby. Attachment is what gives our lives security and meaning. When an attachment is severed by death, Shear says, grief is the response to the lost attachment. Peel back the psychological theory, and what you’ll find is something that anyone who has experienced grief knows intuitively: “Nature is so exact, it hurts exactly as much as it is worth, so in a way one relishes the pain, I think. If it didn’t matter, it wouldn’t matter,” writes the novelist Julian Barnes in Levels of Life, his extended essay on grief following the death of his wife.

Shear explains that it’s our close bonds to those dearest to us that also help us want to care for other people and confidently explore the world. These attachments are woven into our neurobiology. The longing and yearning of acute grief, and the feeling of unreality that comes with it, she says, are symptoms of just how much grief short-circuits our bio-behavioural wiring.

Shear agrees with Bonanno that over time most grieving people integrate their loss into their lives. But people with chronic grief face some complicating factor. Complicated grievers tend to be women. They are often excellent carers but not so good at taking care of themselves or accepting help. Often, their emotional reserves of self-compassion and self-motivation have been drained. Shear says that “we don’t grieve well alone”, but frequently people with complicated grief become isolated because their grief has remained at high levels for so long; the people around them may feel that they “should have gotten over it by now”.

Shear believes that adapting to grief and loss is “a normal, natural process”, she says. “We’re not talking about grief itself being abnormal. We’re talking about an impedance in some problem of adaptation.” Think of it this way: her therapy jump-starts a stalled process, the way a defibrillator restarts a stopped heart.

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Shear’s office, with its striped beige wallpaper and mahogany furniture, is so spotless it would feel like a hotel room it if weren’t for the picture of her grandson as a chub-cheeked toddler on her panoramic Apple monitor. It’s a sticky day in July, and she’s telling me how she came to study and treat grief.

In the 1990s, Shear was researching anxiety and panic disorders at the Western Pennsylvania Psychiatric Institute and Clinic when she became involved with research on depression and anxiety in elderly people. One of the common triggers for depression in the elderly is the death of a spouse, and the team she was working with identified a cluster of symptoms in depressed patients that weren’t depression. They expressed deep yearning, were often driven to distraction by thoughts of their deceased spouse, and had great difficulty accepting death, to the point that persistent, acute grief became a risk to their physical and mental health.

To differentiate grief-related symptoms from depression and anxiety, Shear worked with a research team that included psychiatric epidemiologist Holly Prigerson. It was Prigerson who, in 1995, had published a questionnaire that identified complicated grief as a specific syndrome and could accurately assess its symptoms. Shear has relied on it as a diagnostic and assessment tool in her research ever since. Shear and her colleagues also used it to design a new treatment, complicated grief therapy. Prigerson, who now holds an endowed professorship at Weill Cornell Medicine in New York City, and directs Cornell’s Center for Research on End-of-Life Care, continues to work on the epidemiology of prolonged grief.

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In their first meeting, Shear asked Stephanie Muldberg to keep a daily grief diary, recording and rating her highest and lowest levels of grief. Muldberg kept this diary for the duration of the therapy. Every day for almost half a year she was paying such close attention to her grief that it became inscribed in her daily life. Not that her grief wasn’t already a pronounced everyday presence, but now, with Shear’s help, she was facing it head-on rather than avoiding it. The diary was one of several techniques Shear used to help Muldberg look her grief in the eye.

Muldberg says that the grief diary helped her pay attention to herself in a way she hadn’t been able to do in the four years after Eric’s death. Using the diary, she began to see that she had some happy moments interspersed with some low times of grief. “There were always going to be hard times during the day for me, but I wasn’t only focusing on the hard times, I was starting to learn how to move forward.”

Complicated grief therapy (CGT) takes place over 16 sessions, structured, Shear says, by techniques adapted from approaches used to treat anxiety disorders, including cognitive behavioural therapy, a well-researched approach to psychotherapy, and exposure therapy, used to treat avoidance and fear in anxiety disorders. The structure itself is part of the therapy, she says, because structure is reassuring to people who are feeling intense emotions.

Shear has been testing CGT since the mid 1990s. In 2001, she and her colleagues published a small pilot study that showed promising results. Since then, they have published several randomised controlled studies supported by the National Institute of Mental Health, demonstrating that CGT helps patients who have complicated grief to reduce their symptoms better than conventional supportive grief-focused psychotherapy. Shear is a pioneer, but she’s not an outlier. Currently a group therapy version of CGT is being studied at the University of Utah. Researchers in the Netherlands and Germany are also exploring variations on cognitive behavioural therapy and exposure therapy to treat traumatic and prolonged grief. And a recent study in Wales confirms one of Shear’s main findings, which is that the techniques in her treatment are more effective together than separately.

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A few sessions into her treatment, Shear asked Muldberg to do something she had never done, which was to tell the story of the day Eric died. It’s a technique Shear adapted from prolonged exposure therapy that she calls “imaginal revisiting”. At first, Muldberg says, she was apprehensive because she wasn’t sure if she could remember what had happened. Over the course of three weekly sessions, Muldberg told the story of Eric’s death, rating her levels of emotional distress as she did. The purpose of this technique is to “help people connect with the reality of the death in the presence of a supportive person who is bearing witness to it,” Shear explains. “We want to keep grief centre stage,” she says. “If you do let yourself go there, paradoxically your mind finds a way to face that reality and to reflect on it.”

Then, as with the grief diary, Muldberg had “homework”: listening to a tape of herself telling the story every day between sessions. At first, this was distressing, but she gradually learned how to manage her emotions, recognising, she tells me, that she wasn’t going to forget Eric. The intensity of her feelings began to lessen, so that by about halfway through the therapy she began to feel better.

Muldberg admits she was sometimes sceptical of what Shear was asking her to do, and she says sometimes she pushed back. Part of CGT includes psychoeducation, in which the therapist explains to the patient the premise and purpose of the therapy. Shear’s explanations, Muldberg says, helped her understand that “there was a reason I was feeling this way”. She describes Shear’s approach as “I don’t want to push you but we’re going to figure out ways that you can accomplish these things, feel good about them, and do them.”

A few weeks after Muldberg started revisiting the story of Eric’s death, she worked with Shear to make a list of the places and activities she had been avoiding since he died, and gradually started trying to face them. Shear calls this “situational revisiting”, a form of prolonged exposure therapy. “We do this to provide people with an opportunity to confront the reality of the loss and actually understand its consequences, because being there without the person is going to be different than being there with the person. We want people to start to reflect on that,” she tells me.

For Muldberg, many of the things she had avoided were the everyday parts of being a mother, such as going to the grocery store, but she says, “I didn’t realise how much harder avoidance was than doing some of these things.” Together with Shear, she broke down tasks, such as driving past the baseball field where Eric had played, into smaller steps until she could do them again.

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Sitting in that classroom listening to Shear explain these exercises makes my chest tighten until my heart aches. I can’t imagine doing them myself, let alone how anyone with complicated grief could withstand them. It seems like a wrenching exercise in repeatedly tearing a scab off a wound.

When I ask Shear about this she acknowledges that her approaches are counter-intuitive because they “ask people to go toward their grief”. She tells me it’s by explicitly detailing and describing their grief that people with complicated grief become unstuck, as they learn to shift back and forth between the pain of grief and restoring their lives. Shear is more interested in having patients engage with the therapy techniques than she is with getting them to reach a certain point. To her workshop audience, she puts it this way: “We do not try to lower grief intensity. I’m just trying to turn the Titanic one degree.”

In one of my conversations with Muldberg, I remark that CGT seems counter-intuitive, almost confrontational, and that these exercises seem extremely emotionally demanding. She is quick to correct me. Therapy was challenging, she says, but it came as a great relief to finally feel understood and have the support to face Eric’s death. “When I started to do things, I started to feel better,” she tells me.

For Shear, “feeling better” is a sign that our natural adaptive abilities are kicking in, allowing a person who is suffering from complicated grief to begin the emotional learning process that ultimately helps grief subside. This also creates an opening for the person to begin to reimagine their life after a devastating loss.

At the same time that Shear was helping Muldberg come to terms with the reality of Eric’s death, she was also helping her begin to envision the future. Part of losing someone very close, Shear says, is that we lose our sense of identity. Part of grieving is regaining it.

In another CGT exercise, the therapist asks a scripted question: “If someone could wave a magic wand and your grief was at a manageable level, what would you want for yourself? What would you be doing?” Someone with complicated grief can’t imagine a future without the person they’ve lost, or without the unrelenting, intense grief that’s taken up residence in their life. It’s a future-oriented question for someone who has lost sight of the future. Just asking the question, Shear says, can activate our innate exploratory system and spark hope.

One way to think of the therapist’s role in CGT is that she’s teaching her patient what grief is. “Loss is a learning process. The problem is, it’s unwanted information,” says therapist Bonnie Gorscak, one of Shear’s long-time collaborators and a clinical supervisor at the Center for Complicated Grief. Learning from loss, Gorscak says, means being able to “stand in a different place and look at grief”, to approach the pain it causes, experience it, and have some respite from it. It’s a counter-intuitive approach for therapists, too. Sitting with someone with complicated grief, Gorscak says, “is some of the worst pain I’ve ever sat with”.

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CGT is challenging, but it works. Still, Shear’s therapy has sparked controversy, starting with the very idea that there is a form of grief so severe and debilitating that it meets the definition of a mental illness.

In recent years, Shear and a group of colleagues have advocated for a grief disorder to be included in the Diagnostic and Statistical Manual (DSM), psychology’s diagnostic bible, because they believe complicated grief is a clear-cut, diagnosable syndrome, separate from depression, anxiety or post-traumatic stress disorder. (Shear and Prigerson, once collaborators, now disagree about the best way to diagnose complicated grief, but they agree it should be viewed as a mental disorder.) Without sanction by a DSM diagnosis, psychotherapy in the US is not covered by health insurance. Without insurance reimbursement, CGT is out of most people’s reach. In 2013 the DSM-5 listed Persistent Complex Bereavement Disorder as a “condition for further study”, calling for more research on the issue.

The major issue therapists have with complicated grief is that they believe it pathologises a fundamental human experience. Leeat Granek, a health psychologist at Israel’s Ben-Gurion University, is concerned that including a grief disorder in the DSM could narrow the spectrum of acceptable ways to grieve and create a narrative that would distort the ways people understand their own grief. She believes that this would lead to “a lot of shame and embarrassment for the mourner because the expectations around grief are no longer realistic”.

Donna Schuurman, senior director of advocacy and training at Portland’s Dougy Center, which supports grieving children and families, questions the idea of a grief disorder. She rejects the use of terms such as “complicated”, “debilitating” or “persistent” to describe grief reactions and as the basis for constructing a diagnosable syndrome. Schuurman agrees that “grieving people may have chronic issues or chronic problems related to what has happened after someone dies”, but says that “often those issues were already there before the death”, and that “chronic issues ought not to be framed as mental disorders of grief”.

“Medicalizing or pathologizing the experience of someone who is having difficulty after a death does not do justice to the full social and cultural context in which he or she is grieving,” she writes. “Grief is not a medical disease, it is a human response to loss. Many people who are experiencing severe challenges after a loss are doing so because the social expectations around them are not supporting them.”

Instead of labelling complications of grief as symptoms that define a disorder, Schuurman says she would focus on the experiences and behaviours that were contributing to any “serious challenges” a grieving person was facing. “We can label it depression, drug or alcohol abuse, etc., as any good therapist should do,” and “try to look at underlying issues, and not just symptoms, to be of help,” she explains. Good professional help, she believes, “could take a variety of forms and theoretical backgrounds”.

New scientific research on grief, Shear’s among it, is challenging some of the foundational premises of grief counselling as it has been practised, often in community settings. As George Bonanno discovered, there are several common trajectories through grief, meaning that there are some commonalities among grieving people as they adapt to loss. Still, Shear says, “each experience of grief is unique, just as each love experience is unique”. CGT, she says, “helps people find their pathway to adapting to loss”.

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One way to answer the question of whether or not grief is a disease is to ask if the treatment provides a cure. Stephanie Muldberg describes her grief as “a wound that wasn’t healing”, but CGT isn’t a cure the way antibiotics cure an infection. Grief doesn’t end, it just changes form. Muldberg says CGT taught her how to live with grief as part of her life. She still carries her grief for Eric with her, but she is also back in the world. She travels with her husband and daughter. She volunteers for the Valerie Fund, an organisation that supports families of children with cancer and blood disorders, and that helped Eric and their family when he was sick.

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I ask Shear when her fear of sitting with intensely grieving people had subsided. “Well,” she says, “there’s this entire field of study called terror management.” I was expecting her to tell me about her feelings but she answers by telling me how research explicated them – exactly what she’s done in designing a therapy for complicated grief. I look up terror management: it’s the theory that in order to deal with the fear of our own mortality, we find ways to find meaning and value in our lives – like helping people. In that sense, what Shear has done with CGT is to create a form of evidence-based compassion. It’s compensation, perhaps, for the existential helplessness of the therapist, but it also compensates for many of our communal failures helping people grieve. We are too busy, too secular, too scared to deal with grief. It’s hard for Western culture – American culture in particular – to sit with something that can’t be fixed.

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The more I thought back over my conversations with Stephanie Muldberg, the more I thought about how her therapy with Shear helped her put Eric’s death in context of her life story. The idea that a story needs a beginning, middle, and end goes back to Aristotle. People with complicated grief can’t see the arc of their own stories. They can’t get to what classic plot theory calls denouement – resolution. Most of us, when faced with a loss, find a way of putting what happened into the form of a story: this is what happened, this is who I was, this is what the person who died meant to me, and this is who I am now. But people who have complicated grief can’t do this.

metamorphosis after grief

Grief is a problem of narrative. A story, in order to be told, needs a narrator with a point of view who offers a perspective on what happened. But you can’t narrate if you don’t know who you are. Many of Shear’s therapy techniques are about learning to narrate in the face of great pain and devastating losses. Start with the grief diary, which records the emotional story of your everyday life. Follow that by imaginal revisiting, akin to a wide-angle shot in cinema, which helps organise a story arc amidst intense emotion.

Plotting out the story restores the narrator and the narrative. Then, you can begin to imagine a new story, a new plot for yourself. It’s not a choice between grief or living, remembering or forgetting, the way Muldberg once worried it was. The book of life is a multi-volume set. A sequel can only start when the first volume is brought to a close and when the narrator knows she’s going to be all right.

Breaking a promise

Breaking a promise

So many of us have promised our parents that we’d never put them in a home.

And then, one day, we do.

Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.

Here’s what our community has to say about it.


I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.

What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.

I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.

My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.

When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.

Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.

Social isolation

I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.

Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.

That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.

Your safety

I promised that for both of my parents.

But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.

It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.

I still care for my mom in my home. – Lorne S.

My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.

Your health

Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.

I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.

I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.

It’s not abandonment

“Abandoning” is the key word here.

When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.

My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.

You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.

Let’s come together as caregivers

Let’s come together as caregivers

As America becomes more and more fractured, caregiving is one thing that can bring us together. The burden of caregiving is inescapable.

Rural, urban, suburban, caregiving cuts across geographic divides. No political affiliation is immune to illness, disability, or aging.

No amount of money can insulate you from the stress of caregiving. Even the wealthiest worry about the cost of medical care and support.

We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.

Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.

We’re not taking sides because there is no “other side.”

There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.

The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.

No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.

Let’s come together and ask that every political platform include support for caregivers.

The 6 issues family caregivers face

The 6 issues family caregivers face

eldercare confidentialWhen it comes to eldercare, America is facing a disconnect between fantasy and fact. That’s the theme for the new book Eldercare Confidential: Cautionary Tales for Adult Caregivers and Caretakers of Parents and Spouses.

“We all have this idea of an eldercare Shangri-La, where our parents can live and have their every need taken care of,” said the book’s author, Chris Cooper. “We all think that this care home will be funded by the government and that we will be relieved of heart-wrenching caregiver decisions.”

Unfortunately, that place doesn’t exist, Cooper said.

“It’s the Shady Acres myth, and even if it did exist, most Americans couldn’t afford it since the government doesn’t generally cover expenses for long-term care.”

That leaves caretakers and caregivers with the decision-making for their loved ones. Eldercare Confidential was written for those caregivers and caretakers—the adult children and spouses thrust into the role of fiduciary—or steward—for loved ones. The decisions they have to make can be stressful—even debilitating, said Cooper.

“That’s why I wrote Eldercare Confidential. There’s no other book like it on the market. It outlines the six major issues confronting these caregivers and caretakers—what I call the Six-Headed Eldercare Beast.”

Those potential pitfalls range from money, medical and psychological mistakes, to social, environmental and legal mistakes.

Cooper knows how vital this information is from experience. As a professional fiduciary licensed with California, he works with seniors, disabled individuals and others who can’t manage their affairs on their own. He has seen the sometimes disastrous mistakes that people have made because they weren’t prepared for their new role of taking care of Mom and Dad.

“Forewarned is forearmed,” Cooper said. “I’ve given straight talk and practical guidance to navigate those challenges.”

Cooper said his entire career has been about advocating for those who can’t help themselves. In addition to being a professional fiduciary, he founded Eldercare Advocates, which provides geriatric care management and long-term-care consulting, as well as Chris Cooper & Company, an independent, fee-only Registered Advisory firm based in San Diego and Toledo. He is enrolled to represent clients before the IRS and in fair hearing processes before the Department of Health and Human Services at the state level.

“In short, I help people who really need someone to stand by them and support them. That has been my responsibility—and pleasure—my entire career,” he said. “I’m proud that I get to continue this mission with my new book.”


Chris Cooper is a professional fiduciary licensed with California and a national certified guardian with the Center for Guardianship Certification. As a professional fiduciary, Chris works with seniors, disabled individuals and others who can’t manage their affairs on their own. He is the founder of Eldercare Advocates, which provides geriatric care management and long-term-care consulting. Chris has established the fee-only financial planning firm Chris Cooper & Company in Toledo, Ohio, and San Diego. He regularly appears on both local and national news shows and is quoted in newspapers and magazines nationwide. For additional information, please visit his website at chriscooper.com.

Learn more about Eldercare Confidential at chriscooper.com.