It takes a village to care…

Caregiver’s & Patient Care Directory Project

CareNovate Magazine is excited to announce our caregiving & patient care directory project – Health Resource Directory Project.

We are curating a comprehensive list of caregiving (health, wellness, etc) resources, services, products, apps, websites that are available, on the pipeline and soon to be launched.

If you have a or have used or using resource, solution, an app, website that can help caregivers, families, baby boomers, sandwich generation families with typical caregiving responsibilities (organizing chores, medication management, care coordination, respite, seeking caregivers, etc), please feel free to add it here.

Below is a comprehensive list of patient care resources for family caregivers, nursing, patient care advocates and families. Our goal is to have a central location with these  resources, tools to help save time. We continue to add to the list. We welcome suggestions, additions. Email us or contact us.

Alzheimer’s Disease Resources

Assisted Living, Senior Housing & Homes Information



Facing the consequences of self-defeating behavior

When you are trying to remove self-defeating behavior from your life, the first step is to know that you have a problem. I have previously explored some of the different strategies that you could apply to help you recognize whether or not you had self-defeating behavior. Once you have recognised your self-defeating behaviour, it is time to assess the extent to which your actions have had an effect on other people besides yourself. Think of it this way, your self-defeating behaviour is a tool that you are using to get something you need, an unfulfilled need. This tool at one point in time might have been successful but at some point in time it became self-defeating. So the second step in recognising this and knowing that every action that you take has consequences.

Many people, when they discover that they have a behavioural problem, shy away from examining the full extent of the damage that this behavioural problem has caused. They are afraid of what they might discover but whether they choose to look, or not, the problem will have done the same damage. Clearly, a problem exists and it needs to be resolved. Avoidance is not an effective problem solving skill, therefore, the best way to tackle the problem is to be honest and take on the challenge of eliminating the behavioral problem.





The Best Medicine: Why Having a Circle of Friends Is Crucial for Caregivers Guest Post By Joni Aldrich

Facing the cancer battle of a loved one is a daunting task, especially when you’re a primary caregiver. During this difficult time, you can’t overestimate the importance of having the unconditional support of friends.

“Friends, you and me…you brought another friend…and then there were three…we started our group…our circle of friends…and like that circle…there is no beginning or end.” ~ Eleanor Roosevelt

When you contemplate the significance of a circle, there are many associations that come to mind, including the phrase “circle of life.” In reality, circles have always had both spiritual and mystical significance, dating back to the beginning of time. Consider the circular shape of Stonehenge. Then look up into the sky and see the two spherical shapes of the moon and the sun.

Much closer to home than celestial orbs is our “circle of friends.” When you think about it, in this hectic time of work, work, work—well, friends are a rare commodity indeed. You see, friendships have to be nurtured or they’ll wither and fade. That takes additional work and a lot of heart, because there are times in life when friendships are tested and tried. When cancer invades your life or the life of a family member or friend, the true meaning of “friendship” becomes apparent. At no time in life are friends more valuable than when your world has been invaded by the shock and crisis of a life-threatening disease.

In 2004, my husband, Gordon, was diagnosed with cancer. In one day, my life changed completely. Thankfully, my friends didn’t. They were my “constant.” They were there to remind me that I was loved and that I was never alone, and they were there to make sure that my burden was never more than what I could bear.

There were many days when my friends literally kept me sane. The cancer years were full of agonizing struggles. I vividly remember one of the worst days, when Gordon’s first oncologist called me at work and told me that he had given up on my husband. I asked if we should seek treatment elsewhere. The doctor responded that it was now a “salvage operation.” And I fell apart. My friend Becky immediately came to my aid and helped me get out of the office. She calmed me enough so that I was able to make it home without hitting a tree. What would have happened, if she had not been there to support me?

Here are some suggestions for helping a friend during a traumatic cancer crisis:

Make sure that your friend is aware that you want to be helpful and involved.  Having a friend who volunteers to help and upon whom a caregiver can depend is critical. This doesn’t mean that you have to be “clingy”—just call and visit often.

Don’t wait to be asked to bring things. People are sometimes too proud and self-sufficient to accept help when it’s offered, and sometimes they might be unable to articulate even to themselves what they need. If you’re going to visit, why not take a pot of soup, a casserole, or muffins along with you? These items can be frozen and used later if they are not needed immediately.

Consider a care package of staples. Flowers, cards, and other traditional “thinking of you” gifts will always be appreciated by caregiving friends, but keep in mind that the items caregivers need most are more mundane. Non-perishable food is always good to have on hand, or you could pick up a box of tissues, paper towels, or any item that tends to be used up quickly. You might also consider providing supplies for the patient: alcohol swabs, lip balm, unscented skin moisturizer, hand sanitizer, a warm blanket—all these things are inexpensive, but useful. 

Friends have to be available for “consultation” 24/7. Emotions don’t keep regular working, or even waking, hours. No, you may not like that call in the middle of the night, but that might be the time your friend needs you the most. She might simply be unable to sleep, or she might be sitting up in the emergency room or the surgical waiting room at some unusual hours. Since those occasions are often unexpected, your friend will probably be alone— technically. Being a true friend means that you have your “available” sign on, no matter what time it is.

Aid is especially important when the patient is receiving treatment out of town. The patient’s needs and concerns, and those of his family, grow exponentially when it becomes necessary to leave home for treatment. Many new complications present themselves, such as mail that needs to be collected, pet care, and yard work. If these responsibilities are shared between dependable friends, the load becomes more bearable.

In my book The Saving of Gordon: Lifelines to W-I-N Against Cancer (Cancer Lifeline Publications, 2009, ISBN: 978-1-4392550-3-2, $19.95), I include a “Wall of Dedication to My Girls. This dedication came directly from my heart to all of the wonderful ladies who got me through the most trying times of my life. Since my situation ended tragically with the loss of Gordon, my friends formed the cornerstone of rebuilding my life without him.

I would not have been able to make it through had they not been there for me, unconditionally. I try to remember that every day and offer my support to others who may need help. “My girls” have become my daily inspiration.

For more information about Joni Aldrich and her work helping caregivers to those with cancer, visit her website at

From AARP: A Juggling Act: Work and Caregiving /Guest Posting by Elaine Ryan

When her mother’s dementia progressed, Jamie from Alabama stepped up to help her remain at home. She is one of the 42 million Americans who give their hearts as family caregivers every day, helping older parents, spouses or other loved ones live independently, with dignity.

“We all pitched in to help,” Jamie said. “In the early years, it was possible for us to take turns having her stay in our homes for several months at a time. Her illness had not yet progressed to the point where she could not be alone, so I continued to work my full-time job while she stayed with me. I had to juggle work responsibilities with doctor appointments, a couple ofsurgeries and cooking meals, as I did not feel she should do that anymore on her own. …

I frequently felt that I needed to be in two places at once — at home and at work.


>> Read Jamie’s story

Family caregivers at work

Jamie is one of the 42 percent of U.S. workers who have been caregivers for aging loved ones in the last five years. In fact, most family caregivers work full or part time while caring for their parent, spouse, aunt, uncle or other loved one. Here are the facts:

  • The majority (68 percent) of family caregivers report making work accommodations because of caregiving duties including: arriving late/leaving early or taking time off, cutting back on work hours, changing jobs or stopping work entirely.
  • Family caregivers age 50 and older who leave the workforce to care for an aging parent lose, on average, nearly $304,000 in wages and benefits over their lifetime.
  • Nearly half of U.S. workers expect to be providing care in the next five years.

You shouldn’t be asked to choose between caring for your loved one and keeping your job

Many American workers have no paid or unpaid sick leave. This means they face loss of pay — or loss of their jobs — if they need to take time off from work to care for a loved one. Yet, like Jamie, they still tackle remarkable responsibilities, juggling their work and caregiving tasks. I know firsthand how challenging this can be.

Read More:

What’s Different About Family Caregiving Today? Guest Post by Lynn Friss Feinberg

This is a pivotal time. Converging socio-demographic trends and more complex care needs are contributing to historically unprecedented challenges in family care of older people in the U.S.

For most of human history, requiring help in old age was uncommon. As Atul Gawande writes in Being Mortal, “The natural course was to die before old age.”

Only 41 percent of people born in 1900 survived to age 65.

In sharp contrast, an estimated 84 percent of people born in 2010 will live to age 65 or older. In the past three decades, the population 90 years and older has nearly tripled. The majority of the very old have one or more disabilities and need supportive services.

There is no going back to the “old days” of family caregiving.

Historically, most care for older relatives was short term. It was an expected role of women who typically did not work outside the home. Care was provided within the privacy of the extended family, all usually living nearby.

Today, families and care needs are changing at a dizzying pace.Young and old holding hands

The caregiving tasks we ask of families are more complex, overwhelming, costly and difficult to manage than ever. And the situation is urgent: A new study shows that boomers will drive up Alzheimer’s-related costs from $307 billion in 2010 to $1.5 trillion by 2050.

Although recent researchshows that 90 percent of unpaid caregiving for people age 65 and older currently is provided by family members, we face a growing care gap. Reliance on families to provide care in the way it was delivered in the past is unsustainable.

>> Sign up for the AARP Advocacy Newsletter

The modern family looks very different than our grandparents’ generation.

Never before have so many women, the traditional family caregivers, been in the paid labor force. Yet, unlike the old days, a woman’s “provider” role is no longer confined to staying home and taking care of families’ everyday living needs.

Today, two wage earners are needed in most households to support families economically and to ensure retirement security. Among 55- to 64-year-olds (the most common age group to take on eldercare responsibilities), older women’s labor force participation increased from 41 percent in 1980 to 59 percent in 2012 — and is projected to reach 67 percent by 2020.

Several demographic shifts illustrate the dramatic changes in family composition creating complex family structures for caregiving. The share of U.S. adults who have never married is at a historic high. One in five (20 percent) adults (age 25 and older) has never been married, up from 9 percent in 1960. Greater divorce among people age 50 and older, and more remarriage (especially among older adults), may also affect patterns of family care in the future.

Public policies need to adjust to the realities of the changing American family.

Many experts believe that our nation’s lack of a comprehensive, coordinated and affordable long-term care system intensifies family caregivers’ insecurity. Working families are increasingly left on their own to fill greater care gaps.

New policies are needed for a better system of community-based long-term care and family support. Also needed is a larger and higher-quality paid workforce to provide supportive services and mechanisms to help families afford paid care.

Lynn Friss FLynn Friss FFeinberg2einbergeinberg is a senior strategic policy adviser for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.


Preventing Nurse Fatigue to Keep Patients Safe: Guest Post by Joan Spitrey

Preventing nurse fatigue to keep our patients safe

Joan SpitreyMonday, December 01, 2014

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Preventing nurse fatigue to keep our patients safe

With the holiday season upon us, it is not unusual to feel the stress of this busy time of year. Our schedules become filled with fun times with family and friends, but our own health often gets neglected.

However, as healthcare providers, we have a responsibility to our patients. They rely on us to have sharp minds and quick responses to their ever-changing needs. They need us to keep them safe. Therefore, it is imperative for nurses to take measures to prevent fatigue.

In many high-risk professions, time on the job is limited in order to ensure proper rest. This in turns keeps the professional alert and sharp when making decisions that can impact others lives and safety. Some professions with work/rest limitations are truck drivers, pilots and even physicians. However, there are no regulations to prevent the hours worked by a nurse or any mandated rest time in between shifts.

In September 2014, the American Nurses Association (ANA) updated its position stated on nurse fatigue — Addressing Nurse Fatigue to Promote Safety and Health: Joint Responsibilities of Registered Nurses and Employers to Reduce Risk.

The statement calls for a collaborate effort by not only the employer, but also the nurse. The ANA recognizes that nurse fatigue directly affects patient care and has been linked to increases in errors, ability to learn, risk taking and impaired mood and communication.

Not only is the job performance affected, but also the health of the nurse. Fatigue and shift work has been linked to sleep pattern disturbances, injuries, obesity, diabetes mellitus, cancer and adverse reproductive outcomes, to name a few.

The risk to the nurse and the public is further impacted from drowsy driving after long shifts and/or little quality rest time. Multiple studies have determined that driving after being awake for more than 17 hours mimics that of someone driving while intoxicated.

In 2004, the Institute of Medicine recommended that nurses not exceed 12 hours of work in a 24-hour period and 60 total hours in a seven-day work week. However, considering the scientific research that demonstrates adverse patient safety and nurses’ health, the ANA recommends that nurses not exceed 40 hours in a seven-day work week.

Responsibilities of registered nurses

As advocates for our patients, we must also be advocates for ourselves. Nurses need to be responsible for practicing healthy behaviors that assist them in providing optimal patient care. Some recommended evidence-based fatigue countermeasures to reduce fatigue include:

  • According to the National Sleep Foundation, get at least 7-9 hours of sleep with in a 24-hour period. Make sure your sleep environment is conducive to sleep (dark, quiet, cool) and remove distractions such as the TV, cellphone and computer.
  • Be cautious and aware of side effects of any medication you are taking that may impair alertness while on the job.
  • Improve your overall health with appropriate stress management, diet and exercise.
  • Ensure you are taking meal and rest breaks during your shift.
  • Be aware of drowsy driving to ensure safe driving. Stop when feeling drowsy and find other modes of transportation home or, if necessary, sleep at an alternative site closer to work. Remember, most techniques such as putting the windows down or the radio volume up do not work.
  • Take into consideration the length of your commute when seeking employment.

Responsibilities of employers

A healthy work environment includes a culture of safety. Employers should strive to adopt policies that are evidenced-based and respect the registered nurse’s right to accept or reject a work assignment based on the risk of fatigue.

In other words, nurses should not be mandated to overtime shifts or pressured to work scheduled overtime to meet the needs of the facility. They should be allowed to decline extra shifts without being penalized. A 40-hour work week should be the norm in their culture of safety.

Some recommended strategies suggested by the ANA include:

  • Eliminating mandatory overtime as a staffing solution.
  • Adopt official policies that nurses have a right to accept or reject work assignments on the basis of preventing fatigue.
  • Develop anonymous reporting systems for employees for accidents, errors and near misses.
  • Incorporate the nursing staff in the work schedule design. Use regular and predictable schedules so nurses can plan accordingly.
  • Coordinate the number of on-call shifts in a seven-day period.
  • Establish protected time off to ensure adequate sleep can be obtained in between shifts.
  • Assist in the prevention of drowsy drivers by providing transportation home when a nurse feels unable or by providing sleep rooms.

Prevent fatigue seems like such a fundamental issue in our complex medical environment. However, as we provide more complex care, we have not kept up with caring for the caregiver.

Take steps this holiday season — especially as we make our New Year’s resolutions — to evaluate what measures you have in place to prevent nurse fatigue. Our patients are relying on us.

Fear of Silence: From Silence: The Power of Quiet in a World Full of Noise by Thich Nhat Hanh.

Fear of Silence

While we can connect to others more readily than ever before, Zen Master Thich Nhat Hanh worries that we’re losing our connection to body and mind. He offers a nourishing conscious breathing practice as a remedy. Thich Nhat Hanh

I have the impression that many of us are afraid of silence. We’re always taking in something—text, music, radio, television, or thoughts—to occupy the space. If quiet and space are so important for our happiness, why don’t we make more room for them in our lives?One of my longtime students has a partner who is very kind, a good listener, and not overly talkative; but at home her partner always needs to have the radio or TV on, and he likes a newspaper in front of him while he sits and eats his breakfast.

I know a woman whose daughter loved to go to sitting meditation at the local Zen temple and encouraged her to give it a try. The daughter told her, “It’s really easy, Mom. You don’t have to sit on the floor; there are chairs available. You don’t have to do anything at all. We just sit quietly.” Very truthfully the woman replied, “I think I’m afraid to do that.”

We can feel lonely even when we’re surrounded by many people. We are lonely together. There is a vacuum inside us. We don’t feel comfortable with that vacuum, so we try to fill it up or make it go away. Technology supplies us with many devices that allow us to “stay connected.” These days, we are always “connected,” but we continue to feel lonely. We check incoming e-mail and social media sites multiple times a day. We e-mail or post one message after another. We want to share; we want to receive. We busy ourselves all day long in an effort to connect.

What are we so afraid of? We may feel an inner void, a sense of isolation, of sorrow, of restlessness. We may feel desolate and unloved. We may feel that we lack something important. Some of these feelings are very old and have been with us always, underneath all our doing and our thinking. Having plenty of stimuli makes it easy for us to distract ourselves from what we’re feeling. But when there is silence, all these things present themselves clearly.
Practice: Nourishing

When feeling lonely or anxious, most of us have the habit of looking for distractions, which often leads to some form of unwholesome consumption—whether eating a snack in the absence of hunger, mindlessly surfing the Internet, going on a drive, or reading. Conscious breathing is a good way to nourish body and mind with mindfulness. After a mindful breath or two, you may have less desire to fill yourself up or distract yourself. Your body and mind come back together and both are nourished by your mindfulness of breathing. Your breath will naturally grow more relaxed and help the tension in your body to be released.

Coming back to conscious breathing will give you a nourishing break. It will also make your mindfulness stronger, so when you want to look into your anxiety or other emotions you’ll have the calm and concentration to be able to do so.

Guided meditation has been practiced since the time of the Buddha. You can practice the following exercise when you sit or walk. In sitting meditation, it’s important for you to be comfortable and for your spine to be straight and relaxed. You can sit on a cushion with your legs crossed or on a chair with your feet flat on the floor. With the first in-breath, say the first line of the meditation below silently to yourself, and with the out-breath say the second line. With the following in-and out-breaths, you can use just the key words.

Breathing in, I know I’m breathing in.
Breathing out, I know I’m breathing out.
(In. Out.)Breathing in, my breath grows deep.
Breathing out, my breath grows slow.
(Deep. Slow.)

Breathing in, I’m aware of my body.
Breathing out, I calm my body.
(Aware of body. Calming.)

Breathing in, I smile.
Breathing out, I release.
(Smile. Release.)

Breathing in, I dwell in the present moment.
Breathing out, I enjoy the present moment.
(Present moment. Enjoy.)

Thich Nhat Hanh is a Vietnamese Buddhist monk, teacher, author, and peace activist. He lives at Plum Village, a meditation center in the Dordogne region of southern France.From Silence: The Power of Quiet in a World Full of Noise by Thich Nhat Hanh. Copyright © 2015 by Unified Buddhist Church, Inc. Reprinted with permission by HarperOne, an imprint of HarperCollinsPublishers. The book will be released in January, 2015.

Images: Paul Davis/Flickr

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