Travel with Seniors: A Little Planning Delivers a Lot of Fun

Travel with Seniors: A Little Planning Delivers a Lot of Fun

The busy summer vacation travel season is well underway, as families and friends gather for special occasions, trips of a lifetime, and everything in between. Whatever means of transportation is required, traveling with an older parent or loved one can add layers of complexity to a journey – not to mention assistive equipment such as walkers and wheelchairs – but sometimes a necessarily leisurely pace can allow everybody involved to relax and truly enjoy themselves, no matter what time of year you and your elderly companion hit the road. 

Flying With a Senior Companion

Unpredictable delays notwithstanding, flying usually gets you to a destination faster, but it requires more organization and patience than other modes of transportation. Even though TSA regulations in the United States seem to be a moving target, concessions have been made to seniors (75-plus) and their companions that expedite getting through security checkpoints. Here are a few additional tips to ensure safe and healthy travel with seniors:

  • First, confirm with your loved one’s physician that he or she is cleared to fly, and has had current flu and pneumonia vaccines. Request a doctor’s note explaining any surgical implants or paraphernalia, such as needles. If applicable, a TSA disability notification card can make it more expedient to get through security.
  • At the time of booking, request any desired assistance (wheelchair, electric cart, pre-boarding privileges), and reconfirm a day or two before departure.
  • Select seats in advance, when allowed. An aisle seat toward the front of the plane offers easier boarding and deplaning, but being near the toilets may be desirable for long-haul flights. Compression socks are recommended on flights longer than a few hours, even for travelers without risk of deep vein thrombosis (DVT).
  • Check in for the flight online 24 hours in advance, or call customer service for help choosing an optimal seat.
  • Pack light, but plan to check bags if an aircraft change is part of the itinerary.
  • Get to the airport a full hour earlier than suggested for your departure time.
  • Keep your older traveler’s prescription medications separate from other belongings for easy screening. On-board baggage limits don’t apply to medical supplies, equipment, mobility aids and assistive devices. Liquids exceeding 3.4 oz/100 ml are permitted. (Visit www.tsa.gov for further details regarding U.S. departures.)
  •  If your travel companion has dietary restrictions, order a special meal in advance, when offered, or bring his or her food on board.
  • Apply hand sanitizer liberally, and use antibacterial wipes to disinfect hard surfaces around his or her seat.

 

Tips for Traveling Abroad with Seniors

International travel with a senior may seem especially daunting, but once you dive into the planning process you may find the prospect isn’t as scary as you think. Many nations show great respect to older people, and as world populations age, it has become easier than ever for seniors to travel the globe.

Expert Valerie Grubb, author of Planes, Canes, and Automobiles: Connecting With Your Aging Parents Through Travel and the popular blog Travel With Aging Parents, has traveled extensively with her own mother. “Narrow sidewalks and ancient tourist sites can make some destinations in Europe tricky when vacationing with a parent in a wheelchair,” says Grubb, “so I strongly suggest doing a little research on accessibility before just showing up. That said, Mom and I particularly enjoy Paris and London, and have found local businesses and people to be incredibly helpful as we navigate around the city.”

Here are a few more tips to keep in mind:

  • Several weeks in advance, make sure any vaccines recommended for the destination are up to date.
  •  Ensure passports are valid for at least six months after the return date and request any necessary visa(s) well ahead of time.
  • Have a doctor provide a list of generic names for prescription drugs, as overseas pharmacists or physicians may not recognize all pharmaceutical brand names.
  • Travel insurance for seniors is costly, but it can be a lifesaver. Not only can a senior who takes ill be reimbursed for all or part of a trip, but a policy including evacuation insurance can help get him or her to appropriate medical care in case of an emergency.
  • Consider upgrading your cellular service to a roaming plan that provides full use of your phone for the duration of the trip, so you’ll be able to search the internet freely and call a hospital or ambulance immediately should the need arise. (In the European Union, call “112” for a police, fire or medical emergency.)

 

Traveling With Older People – The Basics

Destination, type of travel, and health and mobility are all mitigating factors that come into play when planning a trip, but a list of tips for traveling with seniors is a great place to start:

  • Do plenty of advance research and don’t hesitate to inquire about senior discounts – for travel, hotels, food, entertainment – both domestically and internationally.
  •  If he or she wears prescription glasses, bring a backup pair, as well as sunglasses for bright days. (Fitover and clip-on styles are great options.)
  • Hearing aids? Don’t forget spare batteries.
  • Use a smartphone to photograph all identification, medical cards and prescription bottles in case of loss or theft.
  • Keep meds in original packaging, and bring a week’s additional supply.
  • Pack a tote with favorite healthy snacks and beverages, and items such as playing cards, a book, travel pillow, and sweater or blanket.
  • Even for seniors who don’t have cognitive impairment, a wearable GPS device or ID bracelet bearing your name and contact phone number can bring peace of mind.
  • A ground-floor hotel room or one near an elevator may be best for seniors with mobility issues. Confirm that rooms identified as “ADA compliant” include grab bars and space for wheelchair maneuverability, as needed.
  • Don’t overschedule, and remain flexible to allow for naps or restroom stops. Whether due to medications, a specific condition, or simply age, older travelers are more likely to tire earlier. Symptoms of Sundowners Syndrome may be more pronounced when seniors with dementia are away from familiar surroundings.
  • To take some of the pressure off you and your family, consider hiring a professional caregiver to accompany you on your travels.

 

Overland Adventures

If time isn’t an issue, a road trip is the easiest and most straightforward way to travel with seniors. Although protracted hours on the asphalt can be exhausting, driving provides the option to stop anywhere and for as long as desired: unplanned detours to must-see sights (Wall Drug or World’s Largest Ball of Twine, anyone?) require little more than a flexible schedule.

While bus and train journeys offer less spontaneity and little or no privacy, they eliminate driving responsibilities, often provide Wi-Fi connectivity, and a restroom is always nearby.

Bon Voyage!

North American cruises are a popular vacation option for seniors because they take a lot of the preparation and trepidation out of travel: most ships and destinations are well equipped to cater to the social, medical, and mobility needs of older passengers. For people who live near one of the nearly 30 U.S. and Canada departure ports, embarking on a cruise is only slightly more onerous than navigating Costco on a Saturday afternoon.

While getting to overseas points of origination requires more time and effort, international cruises can offer senior travelers and their companions exotic experiences that don’t skimp on safety, comfort, or the convenience of English-speaking staff. 

One More Tour, With Honor

Seniors who served in the U.S. military may be eligible for an all-expenses-paid trip to Washington, D.C., to visit the National World War II Memorial and other sites that pay homage to their sacrifice during wartime. Honor Flights are made possible by generous donations from corporations, individuals, volunteers and airlines – including Southwest, the organization’s official carrier.

Since 2005, the non-profit Honor Flight Network (consisting of two groups that joined efforts in 2007) has flown tens of thousands of veterans to one of the three D.C.-metro airports, where arrivals are greeted by representatives from Heroes’ Welcome, an Honor Flight sub-group. A friend, family member or volunteer guardian typically accompanies vets.

As of May 2017, there are 131 hubs in 45 states, making it easier than ever for a veteran to get to an Honor Flight departure point. The program is primarily available to World War II and terminally ill veterans, but is also increasingly open to veterans of the Korean and Vietnam wars. To donate, apply or learn about self-funded tour participation, visit honorflight.org.

For more information

Traveling with an Elderly Parent

Caregiver Tips for Traveling with the Elderly

4 Ways to Soothe Sundowner’s Symptoms

Caregivers Traveling with Families

7 Tips for Safe and Healthy Travel with Seniors

Honor Flights Offer Veterans One More Tour with Honor

 

Tips to Deal with a Controlling Aging Loved One

Tips to Deal with a Controlling Aging Loved One

As people age, it’s not uncommon for their personalities to change and for them to become more controlling.  It’s usually the result of medication, pain, the frustrations of having difficulty doing things that were once easy and changing family dynamics.  While it can be frustrating and even unpleasant at times to deal with, there are things you can do to make the situation better and more bearable.

Kurt Kazanowski MS, RN, CHE, has more than 30 years working with seniors, first as a nurse, and now in hospice and homecare. 

His advice for dealing with a controlling aging loved one:  

1. They want to control something. 

Everyone wants to feel they can control their own lives, but there comes a point when we all lose grip of it. Our independence slips away, and we need help for the simplest things. That can be a defeating concept. It is a challenging reality with which to come to terms. Be sensitive to this in your aging loved one. Being surrounded by support and understanding only makes it easier.

2. Medications can change personalities.

Keep in mind when your loved one began their medications. Take note of any personality changes within two weeks, one month and a few months span. If you notice the personality changes coincide with the new medication and not another variable, speak with their health care provider about options.

Medications manipulate the chemical balances in our brains, and when that occurs, our moods and behaviors can shift. Offer the idea of starting one medication at a time to see how your senior changes in accordance to the new meds. This way, it is easier to pinpoint which medication causes which side effects.

3. Pain can make people act out.

When you are not feeling well and your body is in pain, it can cause you to lash out at those around you. If your senior parent is doing this, offer to find them relief in the form of therapy or medication. Occupational therapy can be a great tool to overcome painful patterns of movement and seek some relief.

4. Consider family dynamics.

Was your aging loved one always in charge of the family? Did they always dictate how things were going to be done? They might still be trying to exude this power over the other family members. If you are a child and the primary caregiver, your parent might still be trying to act out these old dynamics.

Controlling behaviors are considered abuse. Try to talk with your parent about how their actions make you feel. It is not too late to do this, and as your dynamic changes to caregiver, it can be a good time for healing past wounds. 

5. Use positive reinforcement patterns.

Reward the positive behaviors of your loved one. Do not reward, or punish, the negative behaviors. Using reinforcement patterns is one method to motivate your controlling loved one to better actions. If they are becoming upset or angry, offer them kindness and suggest to discuss it. If they don’t respond respectfully, leave and tell them you will come back when it is a better time. It may sound harsh, but it is better than scolding them or getting upset yourself.

6. Talk, if they are willing. 

Sometimes your controlling parent or loved one lashes out to get attention, like small children. They want someone to give them some more attention and care. Ask them how you can help. Genuinely speak to them. Most importantly, listen to what they are saying. They may just want to vent their frustrations to someone that cares. We can all understand that.

7. Grant them the little victories.

For them to feel they still have control, let them make decisions when possible. If you are going out to eat as a family, let them select the restaurant. Ask their opinion about important life matters to include them in situations. Help them find a creative outlet so they can focus their controlling energy into projects. Knitting, painting or sewing are some good options that require creative choices for them to control themselves.

8. Bring in the backups.

If nothing else works, you do have other opportunities. Don’t fret. You need to set your boundaries with your loved one, and if they do not respect that after a point, you can seek other help for them. There are assisted living and nursing home options. That way, there is a professional caregiver that will deal with the daily tasks for them. You can then take the personal family member role and see them whenever you see fit.


Kurt Kazanowski is an author, speaker, coach and consultant in the areas of aging, hospice and home care. He is a native of Detroit, Michigan, and has over three decades of experience in the field of healthcare. He received his bachelor’s degree in nursing from Mercy College of Detroit and practiced as a public health nurse for many years. Today, Kurt is the owner of two successful personal care home health companies – Homewatch CareGivers in Michigan where he lives and First Home Care in Moscow, Russia.

Kurt is also the author of A Son’s Journey.

Vets bill to keep veterans choice program afloat is signed

Vets bill to keep veterans choice program afloat is signed

Donald Trump signs vets bill to keep veterans choice program afloat

President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)

Cancer survivors are more likely to use opioids

Cancer survivors are more likely to use opioids

A new study found that opioid prescription use is more common in cancer survivors than in individuals without a history of cancer. This was true even among survivors who were ten or more years past their cancer diagnosis. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings come at a time of rising rates of opioid overdose and addiction that experts have categorized as an epidemic.

Little is known about prescribing opioids to relieve pain in individuals who have survived cancer. To investigate, Rinku Sutradhar, PhD, a senior scientist at the Institute for Clinical Evaluative Sciences in Toronto and an associate professor with the University of Toronto in Canada, and her colleagues analyzed information dating back to 2010 on 8601 adults at least five years past a cancer diagnosis who were matched with 8601 individuals without a prior cancer diagnosis based on sex and calendar year of birth. Follow-up was stopped at any indication of cancer recurrence, second malignancy, or new cancer diagnosis. The researchers looked for opioid prescriptions filled at a pharmacy during the observation period for each individual.

The rate of opioid prescribing was 1.22 times higher among survivors than corresponding matched controls. Over a 36-month period, the average number of opioid prescriptions filled by survivors was 7.7, compared with 6.3 for controls. This increased rate of opioid prescribing was also seen among survivors who were 10 or more years past their cancer diagnosis. Individuals with lower income, and those who were younger, from rural neighborhoods, and with more comorbidities had significantly higher prescribing rates. Sex was not associated with prescribing rates.

“Our research findings raise concerns about the diagnosis and management of chronic pain problems among survivors stemming from their cancer diagnosis or treatment,” said Dr. Sutradhar. “Physicians providing primary care to cancer survivors should consider close examination of reasons for continued opioid use to differentiate chronic pain from dependency.”


Full Citation: “Cancer survivorship and opioid prescribing rates: a population-based matched cohort study among individuals with and without a prior history of cancer.” Rinku Sutradhar, Armend Lokku, and Lisa Barbera. CANCER; Published Online: August 7, 2017 (DOI: 10.1002/cncr.30839).

 

URL Upon Publicationhttp://doi.wiley.com/10.1002/cncr.30839

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.

Jump-Starting Hard Conversations As The End Nears

Jump-Starting Hard Conversations As The End Nears

Frederick Bannon Jr. was by his mother’s side in intensive care as she fought a rare form of muscle cancer in late 2014. She was heavily sedated, but he felt confident making medical decisions for her, thanks to his family’s advance care planning.

Bannon had difficult end-of-life-care conversations with his parents, both in their mid-80s, before his mother’s diagnosis. During those  discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.

“That helped so much, because you knew at least one thing was going to be taken care of,” said Bannon, 65, of San Francisco, whose mother survived and lives with Bannon’s father in Wethersfield, Conn.

Most Americans avoid end-of-life decisions, although some people may be more likely to make them if a doctor or social worker starts the discussion. In California, the state’s attorney general’s office offers an end-of-life planning checklist on its website. In the past few years, other websites have encouraged those conversations, with their own suggestions on how to get started.

Rebecca Sudore, a geriatrician at the University of California-San Francisco, created prepareforyourcare.org, which provides step-by-step instructions and video stories to help people navigate the care they want at the end of their lives. She built the site in 2013 for families unsure how to broach sensitive questions. In a study published in JAMA Internal Medicine in May, she and other researchers found that the website — combined with the use of an “advance directive” form — prompted participants to plan ahead.

The website is free, and Sudore makes no money from it. She said she created it as a public service with the idea of studying its effectiveness.

The site guides patients in drafting a “summary of wishes” to help families and other caregivers decide whether their loved ones should undergo life-sustaining medical interventions such as feeding tubes and ventilators.

For the study, Sudore approached 414 San Francisco-area military veterans — including Bannon — who were split into two groups: One received a simplified advance directive, a legal document allowing a patient to consent to or decline specific medical procedures well before they occur. The other group was given the directive but also was pointed to prepareforyourcare.org, which is publicly available in English and Spanish.

Almost none of the participants had documented their wishes in the six months before the study. But nine months after the study began, 35 percent of those who received access to the website and the directive had updated their medical record, while 25 percent who received just the directive had done so.

Sudore sees stark contrasts between “deer-in-headlights” families who arrive at the intensive care unit with outdated directives and no specified plans, and those who have had ongoing conversations.

Bannon, a Vietnam War veteran, X-ray technician and colon cancer survivor, praised the site’s simplicity and accessibility and said it persuaded him and his parents to document their wishes before his mother’s cancer treatment.

The website appears to be a useful tool, according to Dr. VJ Periyakoil, associate professor of medicine and director of Stanford University’s Palliative Care Education and Training Program. (Periyakoil is friends with the UCSF researchers but was not involved in the study.)

“Clinicians are so hard-pressed for time, so when the patients get activated by web-based tools, I think it’s a wonderful thing,” she said.

Seventy percent of Americans lack an advance care plan, according to the U.S. Centers for Disease Control and Prevention, and lack of preparation can have undesirable effects, Periyakoil said.

Family members who have not gone through this process sometimes choose life-sustaining options for their loved ones that may cause unnecessary suffering, Periyakoil said.

Children “might be more lured by, ‘I really love Mom. I can’t allow anything bad to happen to her and I want to keep doing whatever I can to extend her life,’” she said. “And by doing so, they might end up subjecting Mom or Dad to a lot of measures that are ineffective and burdensome.”

Periyakoil, who has studied barriers to end-of-life care among eight ethnic groups, does not believe there’s a single solution to encouraging end-of-life conversations, because different groups have different approaches to discussing death. She suggested the website might be one of many strategies to consider.

Prepareforyourcare.org has logged more than 1.7 million page views and 85,000 users in 115 countries since its 2013 launch.

For Bannon, the site worked. “Now [my parents are] even more relaxed, because when they do face their final exit, everything’s in place,” he said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation, coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation, and coverage of aging and long-term care issues is supported by The SCAN Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Alzheimer’s disease now affects an estimated 5.5 million Americans, and after decades of feverish work, researchers have so far failed to find a treatment that halts or reverses the inexorable loss of memory, function and thinking ability that characterize this feared illness. But researchers have been quite successful at devising ways to diagnose Alzheimer’s earlier and… (more…)

Why Veterans Make Exceptional Caregivers

Why Veterans Make Exceptional Caregivers

A great caregiver can come from almost any background. But when you’ve spent twenty years in home care, it becomes clear that some professional backgrounds do really prepare caregivers for working with seniors.

At Visiting Angels, some of our most successful home care providers come from military backgrounds. Through their experience in the armed forces, our veteran franchise owners have developed the skills and the character that distinguish them as quality care providers.

In fact, we’ve found that veterans make such exceptional care providers that we’ve become a part of the VetFran network. Through VetFran, we help military veterans start their own home care businesses as part of the Visiting Angels family.

Here are just a few of the reasons why we’ve found that veterans make exceptional care providers, and why Visiting Angels seeks out veterans as agency owners:

“No Man Left Behind”

Military service teaches a lot to those in uniform, but perhaps the most valuable thing it teaches is loyalty to those who rely on your service. As a member of a military outfit, you and your fellow soldiers are dependent on one another. All it takes is one weak link for the chain to fall apart.

So, it’s little surprise that when veterans become caregivers, their loyalty to their clients is often second to none. Veteran care providers know that their clients depend on them — for comfort, for safety, and for companionship. They also understand the weight of that responsibility, often in a way that other care providers don’t. As a result, we’ve seen veterans go the extra mile for their clients time and time again, showing seniors the same loyalty that they once showed to other members of their unit.

Getting the Job Done

When you need a job done — and done right — there’s no one better to call on than a veteran. Veterans have trained and served under conditions few civilians will ever experience. Those experiences allow them to develop the skills and discipline they need to tackle almost any tough job once their tour of duty is complete.

In the caregiving industry, this can make all the difference. Caregiving might not always be a complicated job, but it’s one that requires patience, discipline, and a willingness to do what needs to be done. Whether that means pulling a twelve-hour overnight shift, helping clients cope with physical or memory limitations, or treating seniors with compassion and dignity — no matter their difficulties — you can count on veterans to approach care work with a committed and motivated attitude.

Veterans Helping Veterans

According to Veterans Affairs, there are currently almost 20 million veterans living in the United States. Over 9.4 million of those veterans are 65 years of age or older. That means nearly 1 in 5 American seniors is a military veteran.

In order to live comfortably and safely, many veterans require some form of personal care. Many receive care in the comfort of home, while others are cared for in an assisted living center or within a nursing facility.

No matter where they are cared for, having a veteran as their caregiver can often make a major difference in the effectiveness of their care.

This is something that Visiting Angels touched on in a conversation we had with Will Bruck. Will is the owner of the Visiting Angels office located in Monroe, MI. He is a three-tour veteran of the U.S. Army. Will has now dedicated his life to providing care for seniors, with a specialized focus on veteran care. In our conversation, Will described how his service background allows him to connect with veterans in a way that other caregivers — and even veterans’ family members — often can’t.

“I’ll go to family’s homes and I’ll talk to their mom or dad, and afterward, the children will say, ‘I’ve never heard dad say that stuff.’ It opens up a whole new door, and they realize ‘This is the company I need to go with.’”

Thanks to that personal connection and understanding, Will has been able to provide Monroe County’s veterans with a level of care they would not have been able to otherwise receive. Veterans make up nearly half of Will’s clientele, and he has since opened a second office in nearby Adrian, MI.


Will’s agency is one of several Visiting Angels locations that provides in-home senior care to veterans, both through standard care programs and as a registered caregiver with his local VA. If you are looking for a caregiver for a loved one in your area, we invite you to contact your local Visiting Angels office or call 800.665.4189 to contact the agency closest to where the care is needed.

Larry Meigs, Visiting Angels

Messages From Beyond: Using Technology To Seal Your Legacy

Messages From Beyond: Using Technology To Seal Your Legacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Featured image: Evgeny Drablenkov / Shutterstock.com

How to Manage the Never Ending Paper Trail

How to Manage the Never Ending Paper Trail

It hardly seems fair that as soon as we pay bills, review statements, manage family calendars and school cubbies for the month, all of this ironing out will inevitably become all bunched up again when next month’s paperwork requires the same attention.

When it’s our own personal finances, it is easier to put aside organizing—waiting until we have the time. This could be months down the road for busy people because let’s face it, who isn’t overextended these days?

But, when we find ourselves in the position to manage the finances and household bills for our elderly parents, this is one job that requires careful attention to detail because you will need to account to siblings, attorneys, and the IRS eventually.

Here is the approach I took to getting my mother’s financial house in order.

First, the visual of the mess I walked into. My father managed the finances for the duration of my parent’s fifty-four year marriage. My mother preferred to manage the home and these roles worked well—until he died. She upended any system he put into place and when I arrived on the scene it was mine to figure out from cascading mountains of paperwork. Literally.

For the thirteen years after his death, she would open the mail, then re-stuff the statements into shoeboxes that would line bookshelves, bureau drawers, and stay tucked beneath beds when there was no more room on tabletops.

Can you see it? The scope of what these thirteen years of statements amounted to ended up taking me a few years to unravel.

Perhaps you are wondering what could be so important from that long ago that I would even need to bother taking the time to sleuth through it all.

I can tell you the moral of this story in one line—do not throw away any paper until you understand what it means to your parent’s financial picture. It will not matter that you will need to dig through 200 empty checkbook cartons because the first one you opened had $50 cash hidden inside. It will not matter that you have amassed eighty-five bankers boxes filled with decades of statements to sift through at your leisure while you work to make sense of the portfolio and uncover where any assets might be hidden.

Do your due diligence. You will sleep better at night knowing that you unearthed every account, every safe deposit box in town, every long term CD you stumble upon just because you are willing to do the job the right way.

The wrong way would be to hire a clean sweep crew who will charge you an attractive rate and send strangers in to cart away all the mess you don’t have time to deal with. They are counting on this. It’s how they make their living because they will find cash that is hidden in places you never looked.

Believe me, your obligation is to understand the paper trail before you beginning shredding. I toiled summer after summer when school was out to piece together fractions of clues to find money that was never listed on spreadsheets or statements.

Glad I did. We were running out of cash near the end and I was at the beginning of looking into a reverse mortgage to stay afloat for however long my mother’s decline would last. It was only then that I found the bulk of her wealth in the form of stock certificates from the 1940s that had never been registered. Imagine if I had just shredded these like everything else. They were in the eighty-fifth box of papers and did not look familiar to me. Thankfully, Charles Schwab knew just what they were.

Stage 1: Sort Paperwork into Categories: Long-Term, Short-Term, Monthly

Long-Term—understand old history

Every statement I uncover from every dark corner of my mother’s house that is not dated within the past 12 months, is filed as long-term—something I can peruse later when I have the time to gain some insight about accounts that are active, or have merged, or have been cancelled in the years since my father’s death.

I never recommend bankers boxes for permanent storage, (think flooding!) but temporarily, they are an affordable way to clear clutter from the house.

Label carefully, this will save you oodles of time when you are searching later.

Bundle years for each new box: “Archive 1990-1995”, “Archive 1996-2000.”

Short-Term—monitor recent history

Every statement dated within the past 12 months is filed as short-term—these will be immediately transferred to your filing system once it is set up.

Label as current year: “Active 2017.”

I make an alarming discovery once I go through archives vs. active accounts—my mother’s home insurance has been forcibly terminated for failure to pay. Somehow it got missed and once this happens, you are dead in the water.

You cannot return to the insurer who carried your policy for 35 years, and you cannot reinstate a home policy without a new roof inspection. It will not matter if your roof does not leak—ours was still good—there will likely be some work needed when it comes to old houses. So if you do not have the financial reserves, be careful to never find yourself in this predicament.

Monthly—alpha and chrono order for filing active accounts

I still work with paper. Online banking is great for quick pay, but I am more comfortable perusing month-to-month statements when I need information.

I buy a short filing cabinet and unload the entire contents of the “Active” box—all mail pertaining to the current year—and I sort paperwork into piles in alphabetical order using yellow sticky notes to post the alphabet along the hallway wall, filing each statement accordingly.

Assign a hanging folder by labeling a Post-it note with the company’s name found on the statement. Be sure to file most recent month on top, with subsequent months behind it.

A binder can also work when you have fewer accounts to manage, following this same alpha and chrono set up. However, the girth can make this weighty.

Discarding—be careful about what you throw into the garbage

I follow the sage advice to not throw anything into the garbage that has identifying information: your name, address, social security number, credit card numbers, telephone, birth date, checking account number, any financial statements, even credit card offers you consider to be junk mail.

Be prudent. When you are certain you understand what these papers mean to your parent’s wealth, shred or burn your important papers. For the kind of bulk paperwork my mother has, I choose a shredding service which has very affordable rates and will send a truck to our house. Many times, churches, or local community centers will offer neighborhood shred days. The best part is seeing your heavy load turned into confetti within seconds.

Daily Drop Spot—keeping the household organized

When paperwork arrives before I have the time to address it, I like to use a safe drop spot where I know it will still be waiting when I look for it. Mine is a basket with a lid. I reserve a “man drawer” in the kitchen for my husband. My students tell me their busy Moms create a cubby for their backpack storage, plus a personal In/Out two-tiered box with a colored folder for each child so permission slips and homework are always in the same place.

Avoid the Financial Scavenger Hunt—

One thing that could have saved me immeasurable time was to have a list of where safe deposit boxes were held (and keys located) or CDs with their maturity dates. The more we can organize, the more of a gift it will be to those left behind.

Once you figure out what your needs are, it is so much simpler to find the system that will work best in managing the paper trail.

“How to Streamline Your Rx Collection” will be the next blog posting here.

Advice for older adults on staying safe in hot weather

Advice for older adults on staying safe in hot weather

Risk of heat-related health problems increases with age

With summer here and the temperatures rising, it is important to understand the health risks that excessive heat can bring and know the signs of heat-related illnesses. Older adults and people with chronic medical conditions are particularly susceptible to hyperthermia and other heat-related illnesses. The National Institute on Aging (NIA), part of the National Institutes of Health, offers advice to help combat the dangers of hot weather.

Heat stress, heat fatigue, heat syncope (sudden dizziness after exercising in the heat), heat cramps and heat exhaustion are all forms of hyperthermia. Hyperthermia is caused by a failure of the body’s heat-regulating mechanisms. The risk of hyperthermia can increase with the combination of higher temperatures, underlying general health, and individual lifestyle.

Lifestyle factors that can increase risk include not drinking enough fluids, living in housing without air conditioning, lack of mobility and access to transportation, overdressing, visiting overcrowded places and not understanding how to respond to hot weather conditions.

On hot and humid days, especially when an air pollution alert is in effect, older adults, particularly those with chronic medical conditions, should stay indoors in cooler places. If possible, people without air conditioners or fans should go to places that do have air conditioning, such as senior centers, shopping malls, movie theaters and libraries. Cooling centers, which may be set up by local public health agencies, religious groups and social service organizations in many communities, are another option.

There are many factors that can increase risk for hyperthermia, including:

  • Dehydration
  • Alcohol use
  • Reduced sweating caused by medications such as diuretics, sedatives, tranquilizers and certain heart and blood pressure drugs
  • High blood pressure or other health conditions that require changes in diet. People on salt-restricted diets may be at increased risk; however, salt pills should not be used without first consulting a doctor.
  • Use of multiple medications. It is important, however, to continue to take prescribed medication and discuss possible problems with a physician.
  • Age-related changes to the skin such as poor blood circulation and inefficient sweat production
  • Heart, lung and kidney diseases, as well as any illness that causes general weakness or fever
  • Being substantially overweight or underweight

Heat stroke is a life-threatening form of hyperthermia. It occurs when the body is overwhelmed by heat and unable to control its temperature. Signs and symptoms of heat stroke include a significant increase in body temperature (generally above 104 degrees Fahrenheit), changes in mental status (like confusion or combativeness), strong rapid pulse, lack of sweating, dry flushed skin, feeling faint, staggering or coma. Emergency medical attention is critical for a person with heat stroke symptoms, especially an older adult.

If you suspect that someone is suffering from a heat-related illness:

  • Call 911 if you suspect heat stroke.
  • Get the person out of the heat and into a shady, air-conditioned or other cool place. Urge them to lie down.
  • If the person can swallow safely, offer fluids such as water, fruit and vegetable juices, but not alcohol or caffeine.
  • Apply a cold, wet cloth to the wrists, neck, armpits, and groin. These are places where blood passes close to the surface of the skin, and the cold cloths can help cool the blood.
  • Encourage the individual to shower, bathe or sponge off with cool water if it is safe to do so.

States, territories, tribes, and tribal organization may be able to help eligible households pay for home cooling and heating costs. People interested in applying for assistance should contact their local or state social services agency.

The NIA’s AgePage on hyperthermia in English or in Spanish contains additional information and resources. It can be viewed online athttps://www.nia.nih.gov/health/publication/agepages. Free print copies of the AgePage are available through online ordering or by calling1-800-222-2225.


About the National Institute on Aging: The NIA leads the federal effort supporting and conducting research on aging and the medical, social, and behavioral issues of older people. The Institute’s broad scientific program seeks to understand the nature of aging and to extend the healthy, active years of life. For more information on research, health and aging, go to https://www.nia.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov/.

Want to Prevent Pressure Ulcers? Help Is Here

Want to Prevent Pressure Ulcers? Help Is Here

If you are caring for a loved one who is bed or chair-limited for most of their waking hours, this post is for you. You may be lucky enough to not have dealt with a bedsore (pressure ulcer) yet, or maybe you have. The most frustrating thing about bedsores is that their very presence is simply an accompaniment to another debilitating disease which has severely limited mobility or circulation in the first place. It’s like the double whammy you and your loved one never asked for.

Seemingly innocuous to start, bedsores can quickly spiral out of control, becoming deeper, more macerated, and infected. Proper aid and assistance from an attentive doctor, wound care specialist, and home health nurse is a must for tending to a stage 2+ bedsore. Is it possible to prevent pressure ulcers from forming in the first place, even if your loved one spends all day in bed? Absolutely. These strategies can help:

Get the right kind of mattress

If your loved one is “bed-ridden,” chances are they have a hospital bed in the home that mechanically raises up and down in which they can sleep, watch TV, eat, etc. If they are still sleeping on a regular bed and sitting up with pillows and other props, this tip is even more important.

Your average mattress is made of materials like foam, cotton batting, puffed-up polyester, and springs. Lying or sitting on the average mattress over time lets the bony points of the body add more and more pressure to internal tissues, causing breakdown and skin irritation. This is what leads to a bedsore.

Simple upgrades to your bed with memory foam toppers, gel padding, or an alternating pressure pad can completely transform blood circulation and weight distribution. A recent 2017 study looking at bedridden spinal cord surgical patients found that a whopping 82% of them developed sacral ulcers (on their bottom) when just a preventative wound dressing was used while only 36% did who were given a gel mattress to lie on. Depending on your health insurance and medical provider, an order can be written for a specialty mattress by your doctor and fulfilled by a medical equipment company; or you can look at a local bed/bedding store and online.

Use barrier cream

Did you know the start of a pressure ulcer can simply look like a reddish or dark discoloration on the skin? Recognizing the signs of the beginning of a bedsore and taking action right away can make a huge difference for the future of your loved one’s health. Barrier creams include a family of gels, creams, and ointments which can be applied to early pre-bedsore areas, healed bedsores, and closed stage 1 bedsores to treat and prevent further breakdown.

You can ask both a doctor or home health nurse about barrier creams they recommend or look online to see what other people have found successful – some popular choices include Corona Cream, EPC (Extra Protective Cream), and MediHoney. The goal is to provide a barrier between contaminants and moisture which can lead to skin irritation and breakdown – this is especially important for bed-limited folks who are incontinent.

Reposition often

While an alternating pressure pad or other specialty mattress can do some of the work of repositioning and disbursing your loved one’s weight while they spend time in bed, manual repositioning is just as important. With a couple thin to medium-width pills tucked up under your loved ones back and bottom, you can make sure their weight is shifted from side to side at least every 2 hours. This helps keep blood circulating and relieves pressure of bonier points of the body.

To some caregivers’ surprise, the heels can be a somewhat hidden place that bedsores develop, simply from feet lying and rubbing on the bed all day. Medical professionals encourage caregivers to “float the heels” of the people they care for by propping a pillow or rolled up blanket under the ankles to keep the heels from actually touching the bed. Johns Hopkins Medicine also shares that patients and caregivers should avoid using “donut” pillows to prevent pressure ulcers as they actually force more pressure from bones onto internal tissues, especially around the tailbone area.

Modify your loved one’s diet

Caregivers know what a challenge eating and diet can be when it comes to preparing food for your loved one and helping them eat. The disease or condition which impairs your loved one’s mobility may also impair their ability to eat or swallow, or cause them to take medicine that suppresses their appetite. When it comes to preventing bedsores, however, diet can be an important ingredient.

In addition to protein, vitamin C, zinc, calcium, and potassium aid the body in vascular circulation, strengthening skin, and tissue repair. Whole foods like broccoli, beets, citrus fruits, lean chicken, quinoa, nuts, and milk can help deliver some of these critical tissue-building vitamins and minerals. Supplements like Juven powder may alternatively aid the body with tissue repair as well.

Bottomline

Will doing all of these things 100% secure that your loved one never experiences a pressure ulcer ever? No, but they can make a huge difference and help you catch and seek treatment for a pressure ulcer far before it becomes health-threatening. Caregivers know knowledge is power when it comes to caring for someone – we hope this bedsore knowledge saves you and your loved one headaches (and pain) in the future.

Joe Fleming, Vive Health

I Lost the Lamb Chops

I Lost the Lamb Chops

Both my husband and I have British heritage, and we love lamb chops. Although the price of lamb has increased markedly, we were willing to pay it. So I went to the butcher shop and bought four thick chops. When I returned home, I put them in the freezer for another day.

Two weeks later, when I went to get the chops, they were gone. I looked on the top shelf, where I store fish, but didn’t see the chops. I looked on the second shelf, where I store meat, but didn’t see the chops. I looked on the third shelf, where I store vegetables, and the bottom shelf, where I store bread products. No lamb chops.

I began to doubt my memory. Did the clerk bag the chops with the rest of my order? Had I thrown them out accidentally? Was I going crazy? This is my 20th year as a family caregiver and, over the years, I learned family caregivers can forget things and lose things. You may have misplaced the car keys, for example, and wondered why this happened. Well, I think there are four key reasons.

We have so much to do. My task list keeps getting longer. In just over a month, my disabled husband was hospitalized three times, once for pneumonia, once for asthma, and once for acute asthma. Doctors prescribed medications and nebulizer treatments for him. I added these responsibilities to my task list. My list was already long, and it’s even longer now.

We’re constantly prioritizing. A lot is going in our minds, and we need to determine which tasks need to be done first. This juggling process is ongoing. You may have been so concerned about a loved one you called 911, a scary experience. While caregivers are prioritizing, we’re providing care, fixing meals, cleaning house, doing laundry, shopping for groceries, and planning ahead.

We’re short of sleep. Psychiatrist Jarrett Richardson, MD, in a Mayo Clinic website article, “Underlying Causes of Sleepless Nights are Often Treatable,” says caring for a family member can cause a reduction in sleep. Have you ever been so tired you couldn’t drift off into dreamland? Before I go to bed, I slow down, calm my mind, and set worries aside. Personal health problems—a terrible cold, aching back, or arthritic hips—can impede sleep as well.

We live with stress. Caregiving is a stressful role. A chronically ill loved one may get worse. A loved one may have become so ill you called 911, a scary, expensive experience. While insurance plans cover some bills, we have co-payments, and pay hundreds, if not thousands, of dollars out of pocket. To reduce stress, Gail Sheehy, author of Passages in Caregiving, asks caregivers to breathe calmly for at least 10 minutes.

Losing things and forgetting things are signs of caregiver overload. We can help ourselves by slowing down, consolidating tasks, getting reliable help, and improving self-care. I’ve taken these steps, but couldn’t live with the mystery of the missing lamb chops. Finally, I emptied the freezer item-by-item, and shelf-by-shelf. I found the lamb chops, and we’re having them for dinner tonight.

4 Tips About Caring for An Alzheimer’s Patient

4 Tips About Caring for An Alzheimer’s Patient

Caring for someone suffering from Alzheimer’s is one of the most taxing for caregivers. To best look after your patient, you need to obtain as much knowledge about the disease as you possibly can. Even if you read every book out there, you’ll still be shocked with the unpredictable and sensitive nature of Alzheimer’s patients. In addition to their behavior, you’ll have to bear with their inability to communicate adequately and express how they feel, which makes the job even more difficult.

Here are some tips that can help you out

Acceptance

It’s tough watching the mental decline of a loved one but at some point, you’re going to need to accept that your loved one is now being affected by an irreversible condition – there is nothing you can do to bring themselves to their normal selves. What you CAN do is slow down the process and make these years as comfortable for them as possible.

Part of accepting that your loved one has Alzheimer’s is quit asking them the question “Do you remember?” They don’t – and it isn’t their fault. By forcing them to remember something that they can’t (because they are mentally incapable of it) will only cause further frustration.

Acceptance also means accepting that this person you are now looking after, isn’t the person you once knew. Again, it’s important to remind yourself that this mental deterioration is no fault of their own – they are helpless. There’s an element of loss that arises with Alzheimer’s, it puts family caregivers in an awkward place. On one hand you have to accept that your loved one isn’t the same but you have to remember that this IS the person you love, whether they remember it or not.

Connect with the patient

It may be easier to just let the patients be on their own because of how aggravating managing them can get but don’t let their anger outbursts intimidate you. Choosing to let the patient be alone with their confused thoughts will only lead them to isolation and eventually depression – both of which will worsen their condition.

You need to find ways of connecting with patients in a way that doesn’t stress them out. Try using meaningful items in their hands. Try placing a photo from a family vacation in their hands to see if they respond. Don’t ask anything at the beginning, see if the photo captures their interest. You may need to help them out a little by providing a few hints. If you don’t see them respond then move onto the next meaningful item. Don’t pressure them and don’t let the fact that they don’t remember weigh down on you.

Try communicating with your loved one through therapy. Alzheimer’s patients are unable to express themselves with words as their language abilities are one of the first to be affected by their disease. Look into pet, music and art therapy to get them to open up to and unleash some of what goes on in their minds.

Do not upset them

Can you imagine what it must feel like to just have remnants of your life and the people in it floating around in your head? Obviously, Alzheimer’s patients experience immense confusion and have a tough time trusting those around them. No one seems to understand what they are going through and they aren’t able to explain it. On top of that, people around them are always asking them to perform tasks which they aren’t usually able to do. Of course, they are going to be frustrated.

It’s important for caregivers to try and understand what Alzheimer’s patients are going through. You don’t need to understand it completely but you need to be able to empathize with them at the least.

Don’t make the situation worse in any way. This means that you need to avoid arguing with them because it will irritate them and force them to act out. You can’t win an argument with a person that isn’t going to make logical sense – so don’t bother, they won’t understand. It will cause them to become distrusting for you and can force them to become withdrawn.

Avoid bringing up topics that can upset them. If you do end up upsetting them unintentionally then be sure to distract them with something immediately.

Alzheimer’s patients get annoyed by a variety of triggers. These triggers can be the room being too noisy or the presence of someone they don’t like in the room. Identify these triggers and make sure the patient is as comfortable as can be.

Look after yourself

When looking after someone else, we tend to forget ourselves. Keep in mind that if you aren’t keeping your health in check then you won’t be able to look after your loved one. Caregiving requires a lot of patience and you’re going to need some down time every now and then to ensure that your physical and mental needs are being addressed.

Do take some time out to refresh your mind. Try taking up yoga and meditation to be able to block out any negativity that you may have building up in your mind and to enable you to go to your ‘quiet place’ when it’s needed.


Sherley Alaba is an eagle-eyed wordsmith; a writer and translator, always interested in ways which can help individuals (especially youth and women) reach their full creative potential. Her focus has been on writing, producing and editing stories on business, finance, interesting personalities, entrepreneurs, culture, the environment, gastronomy, lifestyle, and social issues.

Featured image via Pixabay

Physicians need to openly discuss medical mistakes and near misses

Physicians need to openly discuss medical mistakes and near misses

<blockquote class=”repubhubembed”><p class=”rhexcerpt”>Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient’s losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me realize that medicine is suffering from its own largely unrecognized compartment syndrome.…<!–more–></p><style scoped>.repubhubembed{display:none;}</style></blockquote>
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Terminal Cancer Patients can be Unwilling to Face Prognosis

Terminal Cancer Patients can be Unwilling to Face Prognosis

In a recent study, published in The Oncologist, just under 10% of patients diagnosed with terminal cancer did not know their prognosis and had no interest in finding out. This unwillingness to face a poor prognosis can lead to unnecessary treatments and prevent patients from making appropriate end of life (EOL) plans, causing their remaining time to be more stressful and traumatic that it need be.

“Healthcare professionals should appropriately assess patients’ readiness for prognostic information, and respect patients’ reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness,” says Siew Tzuh Tang, professor at Chang Gung University School of Nursing in Taiwan.

Tang led a team of researchers from Chang Gung University and Soochow University in Taiwan who questioned 247 terminal cancer patients on their knowledge of their condition and prognosis. They did this several times over the last six months of the patients’ lives, allowing them to track how the patients’ prognostic understanding progressed over time.

Based on the answers, they classified the patients’ awareness of their prognosis into one of four categories: unknown and not wanting to know; unknown but wanting to know; inaccurate awareness; and accurate awareness. Using a mathematical model, they also calculated how likely patients were to move between these categories.

At the start of the study, almost 60% of patients already had an accurate awareness of their prognosis, with 15% categorized as having inaccurate awareness, 17% as unknown but wanting to know and 8% as unknown and not wanting to know. Over the course of the study, patients’ awareness of their prognosis generally didn’t change, but what change there was tended to proceed in the direction of more understanding.

More troublingly, patients categorized as unknown and not wanting to know were least likely to progress to other awareness categories. As a consequence, while 82% of patients had progressed to an accurate awareness of their prognosis just before death, this meant 18% still did not have a complete understanding, of which 3.6% were in complete denial. These patients were thus unable to make sufficient preparations for their death.

According to Tang, their findings suggest that healthcare professionals should discuss prognosis with terminal cancer patients as soon as possible, to give them the maximum amount of time to come to terms with it. “Since terminally ill cancer patients need time to develop an accurate awareness of their prognosis, clinicians should begin early in the disease trajectory to cultivate patients’ accurate prognostic awareness by specific interventions tailored to their readiness for prognostic information in each distinct state of prognostic awareness,” she says

The study only questioned cancer patients in Taiwan, where the custom is to disclose the prognosis to family members rather than the patient and then allow the family members to choose how much to reveal. Nevertheless, Tang is confident that these findings will have relevance to cancer patients in many other countries.

“Physicians around the world commonly wait to discuss prognosis with terminally ill patients until they or their family members bring up the issue or when curative treatments are no longer available. Therefore, it is applicable to healthcare professionals around the world to follow the US national guidelines that physicians discuss prognostic information closer to patients’ diagnosis of advanced cancer, when they are cognitively competent to make informed and value-consistent decisions regarding their EOL care.”

Still, Tang says that similar studies should be conducted in other countries with different approaches to relaying prognosis information. She and her team are also planning to extend this research by evaluating the timing, depth and quality of actual patient-physician communication of prognostic information on EOL care.

“The study conducted by Tang et al provides quantitative evidence of variations in willingness to receive prognostic information,” commented Eduardo Bruera at MD Anderson Cancer Center in Houston, US, who is a section editor of The Oncologist and was not involved in the research. “This study highlights the complexity and the need to personalize communication with patients and families with cancer. More research is badly needed in this area.”


Courtesy of Wiley

About The Oncologist
Now celebrating its 22nd edition, this internationally peer-reviewed journal focuses on clear and concise interpretation addressing the multimodality diagnosis, treatment and quality of life of the cancer patient. Each issue is meant to impact the practice of oncology and to facilitate significant communication in the introduction of new medical treatments and technologies. The Oncologist is the official journal of the Society for Translational Oncology (STO).

About AlphaMed Press
Established in 1983, AlphaMed Press, which has offices in Durham, NC, San Francisco, CA, and Belfast, Northern Ireland, is the publisher of three internationally renowned peer-reviewed journals. The Oncologist® (www.TheOncologist.com), which is entering its 20th year, is devoted to community and hospital-based oncologists and physicians entrusted with cancer patient care. STEM CELLS® (www.StemCells.com), celebrating its 35th year, is the world’s first journal devoted to this fast paced field of research. STEM CELLS Translational Medicine® (www.StemCellsTM.com), currently in its sixth year, is dedicated to significantly advancing the clinical utilization of stem cell molecular and cellular biology.

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.

Full citation: “Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by multi-state Markov Modeling.” Chen Hsiu Chen, Fur-Hsing Wen, Ming-Mo Hou, Chia-Hsun Hsieh, Wen-Chi Chou, Jen-Shi Chou, Wen-Cheng Chang and Siew Tzuh Tang. The Oncologist. Published Online: July 06, 2017, DOI: 10.1634/theoncologist.2017-0068.
Younger generations step up to Alzheimer’s care

Younger generations step up to Alzheimer’s care

The number of people with Alzheimer’s disease in the U.S. is expected to nearly triple over the next 30 years according to the Alzheimer’s Association. As the need for caregivers grows, younger family members are finding themselves in a role for which they often are ill-prepared to handle. So experts at UCLA Health developed the Alzheimer’s Caregiver Boot camp to prepare them for the challenges of the progressive disease.

“Alzheimer’s caregiving is a full-time job because there are always risks present at any time of the day or night. They have to be vigilant to prevent things like wandering or falling, while helping with everyday tasks like dressing a patient and preparing meals,” said Dr. Zaldy Tan, Medical Director of the UCLA Alzheimer’s and Dementia Care Program. “This responsibility can be emotionally and physically taxing, so the goal of the boot camp is to give them the best tools to manage their role.”

Dr. Tan says participants in the boot camp are becoming more diverse as more families share the burden of caregiving. One in four caregivers is now under the age of 34, and the number of male caregivers rose six percent in just six years. The boot camp can help ensure that everyone who contributes is confident in their ability to keep their loved one safe and comfortable. “We are all potential caregivers,” said Tan. “Therefore, we should all be prepared to step into that role if and when we’re called upon to do so.”

To reinforce what they’ve learned, boot camp participants finish their day working with professional actors who are trained to react as someone with advanced Alzheimer’s disease. They role-play common scenarios and use different techniques to deal with difficult situations, such as a patient becoming confused or agitated.

“A lot of caregivers are unsure about the skills that they have acquired throughout the day. But once they are able to act out these scenarios, they find that they have not only learned these techniques, but they’re actually able to apply them,” said Tan. “Interacting with an actor who behaves as a dementia patient allows them put their skills into practice before they are faced with having to use them at home.”


Featured image: Bucky Schmidt (left) and Cyndi Ramirez (right) share the task of caring for their wife and mother, who suffers with dementia. Both are more confident in their ability to care for her after attending UCLA Health’s Alzheimer’s Caregiver Boot Camp.

Text and images courtesy of UCLA Health.

How to create a CareMap

How to create a CareMap

Caregiving involves lots of moving pieces. A CareMap can help you understand how it fits all together so you can find ways to improve your daily life.

The Atlas CareMap is a hand-drawn representation of a caregiver’s network. It illustrates the caregiver’s own support system, highlights what is working well, and often reveals duplication or gaps in care and resources.

You can learn more at Atlas of Caregiving.

Millions Of Kids Fall Outside Senate Plan To Shield Disabled From Medicaid Cuts

Millions Of Kids Fall Outside Senate Plan To Shield Disabled From Medicaid Cuts

Aidan Long is a 13-year-old from Montana who has suffered multiple daily seizures since he was 4. The seizures defy medical cure, and some of them continue for weeks, requiring Aidan to be airlifted to children’s hospitals in Denver or Seattle, said his father, Ben Long. The medical bills to Medicaid and his private insurance have been enormous.

“I kept track of these until about 2 million bucks, and then I said I can’t spend any more time worrying about it,” his father said.

As Senate Republicans seek to limit the amount Medicaid will spend on poor people’s health, they recognize that one group has complex medical issues warranting protection: severe special needs. But Aidan and several million other children would not meet the Senate’s highly restrictive definition of “blind and disabled” children whose health coverage would be excluded from the vast reductions Republicans are pushing.

With federal Medicaid spending predicted to drop 35 percent by 2036 under the GOP plan, states would have to shoulder the high medical costs of children with disabilities or else reduce or rescind health services Medicaid now pays for. Those include doctors and specialists; nurses in schools and at home; prescription drugs; and occupational, speech and physical therapy.

“It’s just a fraction of kids who we consider having special health needs who would qualify for the carve-out,” said Janis Guerney, co-public policy director at Family Voices, an organization of families of children with special needs. “The caps are going to put states under so much financial pressure that they are going to do away with the things they don’t have to cover.”

At risk not only are children living in poverty but also kids from working- and middle-class families who have been allowed to enroll in Medicaid because their medical problems are so extensive that most private insurance will not cover it all.

“Absent those supports paid for by Medicaid, the only option many families will have is institutionalization,” said Meg Comeau, a researcher at the Boston University School of Public Health’s Catalyst Center, which helps states improve insurance for children with special needs. “You’ll see kids going into pediatric nursing homes, kids not being able to be discharged from hospitals.”

States Are ‘Going To Be In A Pickle’

Of the 5 million to 6 million children with special needs estimated to be enrolled in Medicaid, 1.2 million would meet the Senate’s definition of “disabled,” which relies on strict criteria to qualify for federal Supplemental Security Income, or SSI, payments. Those children must come from impoverished families who can prove they are blind or have “marked and severe functional limitations” that are fatal or will last continuously for at least a year. Under the Senate bill, the federal government would continue to pay for a portion of their medical bills without setting a financial ceiling.

That would not be the case for the majority of other children with special needs on Medicaid. They qualify because their families have low incomes, so there has been no reason for states to keep track of them separately. Under the Senate plan, the federal government would give states the same amount of Medicaid funding for those children as they would for a child without disabilities, even though that child’s health costs would likely be much higher.

“The potential consequences could be devastating,” said Sara Bachman, another researcher at the Catalyst Center. “States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle.”

A Republican Senate aide, who was authorized to speak only on condition of anonymity, said Sen. Orrin Hatch (R-Utah), the chairman of the Senate Finance Committee, and several other Republicans wanted to exempt all children with disabilities from the per capita payment limits. But bill drafters ran into a problem: Lack of information about the broad population of children with special needs on Medicaid impeded them from crafting a more expansive definition, and the Congressional Budget Office, or CBO, could not estimate the costs, the aide said.

“We were trying to get as many of them, if not all of them, exempted from the cap,” the aide said. “But the problem is the only good definition and the only good numbers we had were for SSI.”

The Senate bill would require states to begin reporting details on children with special needs so that Congress could expand the exclusion. “Hopefully in a couple of years, when we have a better idea of who they are, we can get them in there,” the aide said.

Some Middle-Class Families Would Also Be Hit

Until then, the most severe repercussions from the Senate bill would fall on a third group, roughly 400,000 severely impaired children from families who are not in poverty but whose children have high health-related expenses. Over the years, states have received permission from the federal government to let these children go on Medicaid so they could be cared for at home. Otherwise they might need to live in an institutional setting such as a hospital or pediatric nursing home or have a parent quit work to stay with them.

Some of these families, including Aidan Long’s, have private health insurance through work. But even the best policies rarely pay for as much as Medicaid does.

Christy Judd’s 8-year-old son, Ethan, has a congenital neuromuscular disease and needs a ventilator to breathe at night. Every week he gets physical therapy to improve his balance and mobility, and Medicaid picks up the hefty copays for both equipment and care. Ethan is able to attend school in Inwood, W.Va., only because Medicaid pays for nurses and aides to watch him.

“His health care would exceed what we make in a year despite the fact that we have very high-quality health care insurance,” said Judd, a high school history teacher. “He requires eyeballs on him 24/7. My husband and I are human beings. We have to sleep. Without access to Medicaid, he could die.”

Medicaid paid for nurses, a feeding tube and special food for Cara Coleman’s 11-year-old daughter, Justice, until the girl’s death in March. Coleman is an attorney from Waterford, Va., and her husband is an executive, but their private insurance provided only $500 in nursing benefits a year. Justice required 12 to 16 hours of nursing a day, which Coleman said might have exceeded $80,000 a year. Medicaid also paid for a portion of her wheelchair and all of the palliative and hospice care that eased Justice’s pain in her final year of life.

“I wish she was still here and that we didn’t have to let her go so early, but if this darn Senate bill passes, I’m almost grateful she’s gone,” she said. “If she were still alive and we had to face the per capita caps in Medicaid, I’m sure we would be in medical bankruptcy and her life would go down the tubes. I’m glad she went on her terms.”

At Aidan Long’s school in Kalispell, Mont., nurses or aides paid by Medicaid must watch him to make sure a seizure doesn’t cause him to fall and strike his head, Ben Long said. He also gets physical, occupational and speech therapy at school, also paid by Medicaid.

“He has to be relearning basic things, how to walk, how to balance himself,” Long said. Occupational therapy helps Aidan use a pencil and put on his shoes. The school district charges Medicaid for those services, but the Senate plan could jeopardize the funding, potentially forcing superintendents to choose between reductions in special-education services or general programs.

Aidan Long, 13, who is covered by Medicaid because of his serious, nearly daily seizures, enjoys fishing with his father, Ben Long, near their home in Kalispell, Mont. (Family photo)

“We’re really grateful for the local support our school district has shown, but they’re kind of stuck like sandwich meat between the rights of the kids and the capacities of the local taxpayers,” Long said.

Aidan Long’s mother, Karen Nichols, put her photography career on hold to care for him. Still, the Longs need nurses to come to their home four or five times a week to relieve Aidan’s parents. Without that support, Ben Long said he would have to leave the communications nonprofit organization where he works.

On his good days, Aidan is active, kicking a soccer ball and fishing with his dad. When the seizures do not stop, the costs can be huge: $70,000 to fly him to a children’s hospital, where the room alone costs $10,000 a night, Ben Long said. “That’s not the care, that’s just the space,” he said.

As the GOP leadership pushes for the Senate measure’s passage, Long has been trying to rally advisers of Montana’s Democratic governor to raise concern, and he has repeatedly sought to reach Montana’s Republican senator, Steve Daines. He said that after he called, wrote and tweeted the senator, Daines responded with a form letter.

“You meet these parents of other kids with these severe disabilities, these parents are fighting to keep their families together and they’re fighting for their kids’ lives,” Long said. “Everybody’s so busy keeping things together, they don’t have the luxury to hire lobbyists.”


Featured image: Ben Long of Kalispell, Mont., worries that his son Aidan’s Medicaid coverage could be withdrawn if the Senate Republicans pass their proposal to replace the health law. (Family photo)

Minority communities will be hit hardest by soaring rates of Alzheimer’s disease

Minority communities will be hit hardest by soaring rates of Alzheimer’s disease

It’s time to stop side-stepping the obvious: In addition to affecting the lives of virtually all Americans in the coming years, Alzheimer’s disease will devastate communities of color. We must act with urgency and coordinated force today to prevent that from happening. According to new data from the Centers for Disease Control and Prevention, Alzheimer’s deaths… (more…)

How to Help Parents Stay at Home Longer

How to Help Parents Stay at Home Longer

As aging parents creep past retirement age and into their 70s and 80s, adult children are faced with the same conundrum: how can they enable their mothers and fathers to stay in their homes longer, rather than send their loved one to a retirement home or similar facility?

According to the AARP, 30 million households provide care for an adult over the age of 50, and that number is expected to double by 2040. Failing to plan ahead now could cost tens or even hundreds of thousands of dollars, not to mention precious time, comfort, and dignity. Take the following tips to heart so you can create a caregiving strategy for your loved ones that will keep them living how they want for as long as possible.

Starting Out

No one wants to have the care discussion with their parents, many of whom want to maintain their independence. Nonetheless, in order to avoid costly, embarrassing, and potentially fatal consequences, this necessary conversation must begin with honesty and compassion.

Work Together

Effective caregiving plans include family members, close family friends, and other loved ones; they also designate a single “team leader” or point person who facilitates discussions and keeps communication forthcoming. Remember not to make any decision unilaterally. Apart from creating negative emotions, legal consequences may follow if the parent disputes the child’s action.

You may want to consider hiring someone to help with this planning. A geriatric care manager can assist your family with this.

Make a List, Check It Twice

Create checklists for personal information, home maintenance, health, finances, and transportation. These checklists should include all essential information, any necessary phone numbers, the location of documents or other important paperwork, and a division of labor. Allow multiple people — including your parents themselves — to divvy responsibilities where appropriate to ensure that no one person feels the full burden of caregiving.

On the topic of lists, good protocol calls for creating what’s known as a Vial of L.I.F.E. (Lifesaving Information for Emergencies) checklist. Be sure it includes hospital preferences, allergies, medical conditions, insurance information, and emergency contacts. This list can prove essential information in critical situations if the parent cannot respond or otherwise provide the necessary details.

Invaluable Resources

There are organizations available to handle questions about elder care, such as the AARP, or your local government. The Eldercare Locator can provide a variety of services in your neighborhood, and the official Medicare website will inform on free or reduced-cost healthcare offerings.

Should you choose to hire an in-home care provider, there are additional things you want to consider to make sure your loved one is best cared for.

The Power Is Yours

One of the most important and immediate tasks to complete when planning your loved one’s transition plan is designating a power of attorney and arranging for decision-making processes to occur in the event of incapacity.

The documents that must be created are the Durable Power of Attorney for Health Care — which you probably know as a “living will” — as well as a Physician’s Order for Life-Sustaining Treatment (POLST), the Durable Power of Attorney for Asset Management (or Finance), and the will itself.

  • The powers of attorney provide for a trusted person like a child to make legal and health care decisions for a loved one who is physically unable.
  • The POLST replaces a Do Not Resuscitate directive and allows individuals to decide whether or not emergency responders and other medical professionals should provide certain treatments.
  • A will establishes how one’s assets and estate will be distributed. It’s quite possible your loved one already has a will in place.

Many families will also want to create a living trust, which places the control of an estate’s assets with a legal entity. Both of these allow for assets to bypass legal probate, which can be a lengthy and stressful process.

Make Use of Technology

Technology has made it easier for families to anticipate and ameliorate concerns for elderly family members. Try utilizing these techniques to provide convenient care for your loved one.

1. Home Delivery

Amazon Prime or similar home delivery services are fantastic ways to ensure that household goods never run out. Paper products, incontinence products, hygiene items and toiletries, cleaning supplies, and even some dry goods can be delivered right to the doorstep in just a day or two. A “wish list” can be created to provide a handy source for the necessary items, and family members can order off the list and pay directly, circumventing any complicating factors.

2. A Pre-Paid and Pre-Programmed Phone

Gone are the days of leafing through books filled with chicken scratch handwriting, trying to find the right phone number. Buy an inexpensive phone and pre-program essential phone numbers with simple, easy-to-understand labels. For example, emergency services, doctors, family members, and neighbors can be programmed, saving valuable time in a critical situation. Keep it simple so you can teach your loved one how to operate the device.

3. Keep Pills on Lockdown

Many senior citizens take multiple pills a day, and forgetting dosages or mixing medicines can be a fatal hazard to the elderly. Even though most pill containers are labeled, aging parents become easily confused; these containers are also unsafe for visiting children. Buying an automatic, lockable pill dispenser means medicines are tamper-proof and only accessible when needed. Many of these also alert the parent (or caregiver) when pills are running low to make re-ordering easier.

4. Keep Information Managed and Centralized

Google Drive has an assortment of invaluable, accessible, and free tools to organize, manage, and share important materials within a family. Living wills, power of attorney documents, medication lists, pharmacy prescriptions, home security system passwords, and other important lists and information can be accessed by multiple family members. Google has downloadable apps that allow this data to be retrieved on mobile phones, convenient for trips to the pharmacy, doctor, or attorney.

Other Tips

A caregiver is essential for handling much of the mail delivered to the home of an elderly family member. The generation going through these life changes often relies on physical mail, instead of email, but may find it increasingly difficult to organize all they receive. Designate someone to sort important bills and other financially important items from the catalogs, magazines, and junk mail received on a daily basis. Another option is to have the important mail, such as information from banks and brokerage accounts, forwarded to the physical address of a trusted family member or power of attorney.

One out of three people over the age of 65 will experience a fall, which is the leading cause of serious injury among seniors. Purchase a monitoring system that has a medical alert button can be invaluable. It will alert emergency responders in the event of a major fall or other injury. Some come with buttons that can be worn on the body for easy accessibility, and others offer two-way communication to keep the fallen person on the line while medical assistance arrives. Consider also purchasing grab bars and benches in potentially hazardous areas, like bathrooms, foyers, and steps.

And finally, seniors with dementia are prone to wandering off. If this is a concern you have for your loved one, consider purchasing an inexpensive door chime to ring when the front door is opened. This will alert others in the house before he or she can get very far.

What steps can you take this week to create a caregiving plan for your parents? Let us know in the comments section.


Kathleen Webb co-founded HomeWork Solutions in 1993 to provide payroll and tax services to families employing household workers. Kathy has extensive experience preparing ‘nanny tax’ payroll taxes. She is the author of numerous articles on this topic and has been featured in the Wall Street Journal, Kiplinger’s Personal Finance, and the Congressional Quarterly. She also consulted with Senate staffers in the drafting of the 1994 Nanny Tax Law.

3 Medical Laws All Caregivers Should Know About

3 Medical Laws All Caregivers Should Know About

Medical laws change, but it is important to stay current if caregiving is a responsibility you’ve undertaken for a family member or if it is your profession. There are documents you will need to provide physicians with, as well as decisions to make regarding treatments and facilities.

Here are three of the big ones:

1. HIPAA

HIPAA, the Health Insurance Portability and Accountability Act, came into being in 1996 to help patients gain control over their private information. Only the minimum amount of patient information is available to entities, including caregivers, insurance companies and other health care facilities, unless otherwise directed by the patient.

HIPAA protects patients and holds people accountable for violating the law and patients’ privacy. A violator could spend time behind bars and/or pay a steep fine. However, if a patient requests that their adult child or caregiver accompanies them to a physician appointment or tests, then the provider can release the information. It is clear the patient wants this person to know about their private health information.

The physician has the right to choose who to give pertinent information to if something happens to the patient and they are unable to respond, such as permanent unconsciousness. Even with HIPAA laws in effect, you may want to talk with your patient about a written directive to avoid any miscommunication.

2. The Stark Law

If your patient or loved one is living in a skilled nursing home or assisted living facility, understanding The Stark Law is critical. To avoid conflict of interest and financial kickbacks, The Stark Law puts into effect the protection of Medicare and Medicaid patients. The law states physicians cannot refer patients to a clinic, laboratory or facility and order services in which the provider will receive financial gain in return. This includes a member of a provider’s family.

For example, a physician may be violating The Stark Law if they refer a Medicaid/Medicare patient to a nursing home owned by the physician’s adult child. You want to ensure your patient is receiving the best care and not receiving unnecessary treatment. The Stark Law works to protect patients from unethical practices by enforcing civil fines and penalties and excluding violators from federal health care programs.

If you suspect a physician or facility is violating The Stark Law, you can report the incident to the Office of Inspector General.

3. Legal Documentation Laws

As a caregiver, legal documents are an important part of your responsibility. Your role as a caregiver can be severely limited without proper legal documentation. The following are a few documents you should have on hand and provide copies to your patient’s service providers.

  • Power of Attorney: As power of attorney, you can make medical and financial decisions for your loved one as needed. This document allows you to pay bills on behalf of your patient and make decisions regarding treatments when they no longer can make these decisions on their own.
  • Living Will: Experts suggest creating a living will before the need arises. This document provides a written record of the patient’s wishes regarding life support and treatments and removes the emotional factor during a crisis.
  • Health Care Proxy: If the patient prefers, they can assign a power of attorney to handle their financial responsibilities and a health care proxy to make medical decisions for them regarding treatments. A health care proxy is only used when the patient is permanently unconscious or is in the latter stages of a mental illness.

An elder-law attorney can explain the details of each of the medical laws concerning seniors and caregivers, as well as oversee the legal documentation you need. Before making decisions on behalf of your patient or loved one, make sure you are up-to-date with any changes to the laws.

Image by Unsplash

Combating Compassion Fatigue with Technology

Combating Compassion Fatigue with Technology

Caregiving is a rewarding activity, but it can also be very emotionally and physically draining. Compassion fatigue among caregivers is common, which can lead to burnout, depression, and exhaustion. Not only are these symptoms draining on the caregiver, but over time, they can lead to a decrease in quality of care.  

Luckily, today we have boundless technology to assist in both trivial and specialized tasks. Below are some ways that technology can help ease the burden on caregivers and improve quality of care for seniors. 

Technology and Senior Care

Technology is mostly associated with and marketed toward young people, mostly because they are the ones who will spend the most money on new technologies throughout their lives. But technological advances can improve livelihoods of people of all ages, especially people with dementia or limited mobility. Caregivers can utilize technologies built specifically for elder care, like remote monitoring systems and wearables that monitor blood pressure and allow seniors to call for help in case of a fall. These devices not only offer concrete benefits, but they also provide a sense of security, so the caregiver knows that there are proper safety measures in place and that they’ll be alerted immediately in the case of an emergency.

Inside the home

Accidents inside the home are not uncommon for seniors. For many, home is where they spend most of their time. When we are in our homes, we tend to be relaxed, and not as careful as we might need to be. This can lead to carelessness and injury. This is why caregivers should look into home improvements like home automation that makes sure devices are off and the house is locked when no one is there. Safety devices like hearing impaired smoke alarms and other home monitoring systems are also recommended. These technologies can help prevent major incidents, while falls can be prevented with the installation of handrails and other supportive structures throughout the home. 

Preventing Abuse/Neglect

Many caregivers find that they cannot take care of their charge alone while still caring for themselves. This may lead to looking for assisted living situations or hiring medical assistance. Unfortunately, because social services are perpetually underfunded, the people in these positions are often at the same risk of burnout as family caregivers. This leads to many seniors being emotionally harmed by neglect or abuse. 

But luckily, the Internet provides caregivers the opportunity to do extensive research on service providers. It also provides methods to report abuse and neglect, preventing others from experiencing the same. Phones and computers make it easy to record infractions and hold people accountable. There are also vast online communities giving caregivers ideas and resources for providing quality care, both with and without assistance.

It’s common for caregiving to wear people out. Technology can help you implement safety measures and automate certain tasks. How have you used technology in caregiving? Share your experience in the comments!


Jeriann Watkins Ireland

Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!

Sharing caregiving tasks with your siblings

Sharing caregiving tasks with your siblings

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

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

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

1.  Siblings Who Refuse to Help

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

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

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

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

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

2.  Siblings Who Forcefully Take Control

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

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

3.  Multiple Siblings with Conflicting Interests

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

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

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

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

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

Ellie’s Story

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

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

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

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

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

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

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

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

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

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

Top 5 Tips for Shared Caregiving

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

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

 

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

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

Featured image: Joseph Sohm / Shutterstock.com


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

This advice on ALZ changed my life

This advice on ALZ changed my life

There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.

Not a lot of it works.

I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.

This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.

Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.

How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.

Something clicked for me.

I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.

And, thankfully, you can learn just about anything online.

My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).

Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”

I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).

It made the days a lot more fun and a lot less frustrating.

I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.

But it worked for me. Maybe it’lll make your day a little easier.

Saving the Caregiver System

Saving the Caregiver System

More families are relying on caregivers to care for a sick relative or friend. This could be a professional certified caregiver or simply another family member taking on the responsibility. However, the caregiver system needs an overhaul to support the growing number of seniors and those with dementia in the coming years.

With a system teetering on the brink of extinction within an industry expecting explosive growth, what can businesses and the public do to recruit and retain certified caregivers?

The Dangers Facing the Caregiver System

Qualified nursing homes, assisted living facilities and other caregiving businesses are competing with one another to find and keep new caregivers. Due to low pay and inconsistent hours, caregiving is facing a high turnover. With a profession that relies on long-term care, many certified caregivers move from one facility to the next for better quality conditions or pay.

It’s estimated that one in five people in the United States will be age 65 or over by the year 2030. This brings the issue of the caregiving crisis into focus as family members take on the unpaid responsibility of caring for sick relatives as well as caring for their own children. Aging parents unable to care for themselves may rely on their adult children for care, especially daughters.

JAMA Neurology points out that more women tend to assume the caregiver role compared to men. This can leave the female head of household having to cut back from a full time position to part time while caregiving.

If the family member suffers from dementia, which as many as 8.5 million of Americans will by 2030, the stress of giving round-the-clock care may be too much without an additional caregiver.

Many state Medicaid programs continue to offer the same flat rate to caregivers that has not changed for years, leaving caregivers looking for better-paying jobs. In some states, the unions that support caregivers are demanding dues from the Medicaid reimbursement, leaving even less in the caregiver’s pocket.

How Caregiver Employers Can Help

Although most caregiving facilities have their hands tied when it comes to raises, employers should consider offering their certified caregiving employees bonuses and/or more paid days off. Some nursing home owners provide their caregiving staff with special lunches or promise not to cut their hours due to the census.

Nursing home owners and caregiving business managers should stress the importance of long-term care with prospective caregivers. Dementia patients require the same caregiver every day as seeing a familiar face will make them feel safe and secure in their environment.

How the Community Can Help

High schools can also get involved in saving the caregiver system by promoting certified caregiving as a profession. Caregiving as a trade now involves training courses consisting of more than 100 hours of training as well as a standardized test in some states. In Arizona, students seeking certification need to train for 104 hours before testing.

The State of Washington requires 75 hours of training before a caregiver can work for a licensed agency, and those seeking the Certified Nursing Assistant (CNA) will need 85 hours. New Jersey requires 76 hours of training, and Nebraska wants 16 out of the mandatory 75 training hours supervised.

Employers of individuals faced with caring for a sick family member or friend should consider offering paid leave to the caregiver. Although it is only a temporary solution, given enough time away, the caregiver may be able to make long-term care plans. One company, Deloitte LLP, has taken this approach, offering employees 16 weeks of paid leave to care for a loved one.

In states with stagnant Medicaid reimbursement rates for caregivers, the public can speak with their Representatives about the possibility of increases.

In Illinois, a bill raising the pay wage from $12 an hour to $15 an hour for caregivers made its rounds through the Senate and the House. If more individuals bring this concern to their state’s legislation, caregivers may receive the much-needed increased pay rate and caregiving agencies may retain their best employees.

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