Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.
Don’t worry, there’s an easy solution.
Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.
By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.
In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”
Now a shortcut for the group appears on the left side of your Facebook account.
When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!
A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?
Her comment really piqued my interest — what programs are available to family caregivers in Belgium?
Belgium’s time credit system
In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.
The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.
Encouraging work/life balance
Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.
The history of time credits
The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.
In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.
The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.
In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.
Luckily, Belgium provides other support for the 12% of the population providing family caregiving. Of the elderly in Belgium, 82% have an informal caregiver.
Paid family caregiving
Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.
Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.
In addition to sabbaticals, family caregivers have access to:
- Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
- Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
- Emergency leave (10-45 days/year)
Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.
Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.
Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.
Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.
Social Entitlement credits
Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.
Thankfully, even self-employed persons in Belgium are entitled to caregiver support and sabbaticals.
Belgians are legally obligated to provide for their elders and the average nursing home cost exceeds the average pension payment.
Family caregivers in Belgium suffer from fragmented information sources and a lack of continuity in care. One survey of family caregivers in Belgium of people with mental health issues found that 1 in 4 were dissatisfied with the support they received from their workspace.
Would you like to see these programs extended to the US or Canada? Do you think they would work in another country? Have you provided care for a loved one in another country?
[Editor’s note] While it seems a little inappropriate to share, this article raises some good points. Many people think of death as black and white — you’re alive or you’re not — those of us who’ve been around death know it’s not quite so simple.
Sometimes the dying process can be a difficult and lengthy one. Just how do you determine when someone is no longer alive?
Before a body slides into a morgue or is lowered into a grave, how can we know if someone is really dead? As medical science advances, the guidelines to determine death have changed, too. Miracle Max from “The Princess Bride” once assured us that “there’s a big difference between mostly dead and all dead.” It was… (more…)
One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.
It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:
- They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
- Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
- They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
- Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.
Now you have an understanding of what the potential reasons for enhanced memory or
behavior problems are. It is important to note there are concrete steps you can take to help
manage these problems or at least try to reduce the severity and longevity:
Work With Hospital Staff at time of Admission
The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.
Have a Familiar Family Member Spend as much time as possible with the patient
Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.
Discuss Hospital Policy on Management of Patient with Aggressive Behaviors
Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient. Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.
Consistency of Staff and Routine
Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.
Placement of Patient
If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.
Visual and Verbal Reminders
Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”
Use Calming Techniques
Using a smile or gentle touch can go a long way to calming an agitated person.
Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why.
Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.
Bring Familiar Items from Home
If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible.
Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.
Family caregivers have to go through a lot – giving care to a loved one can be frustrating, difficult, and heartbreaking. And that’s just normal, day-to-day life – things can become harder when a catastrophe happens, like a sudden fall or other critical, life-threatening injury.
Because of this, even family caregivers who live with their loved ones should be taking steps to help the one they’re caring for stay safe and avoid injury – especially in the bathroom.
The bathroom is the #1 place where elderly people fall – clocking in at 35.6% of all nonfatal falls in the elderly. Because of this, it should be one of your first priorities when it comes to the safety and security of the loved one you’re caring for.
We’ve put together a list of 5 of the easiest ways you can help secure the bathroom for your loved one, and help mitigate the risk of a disastrous fall. Check them out below.
1. Install Grab Bars
Grab bars are one of the simplest and least invasive precautionary measures you can install in your bathroom – and they’re quite inexpensive. These bars allow your loved one to have a solid surface to hold and grab, whether they’re just looking to keep their balance, or attempting to prevent a nasty fall.
Typically made of stainless steel or another high quality, sturdy material with a grippable synthetic or rubberized surface, grab bars are absolutely essential – and not just in the shower.
A greater majority of falls in the bathroom occur on the toilet – not the shower. Because of this, grab bars should be installed both in the shower, and near the toilet, where they can offer aid to your loved one when they’re attempting to sit down on the toilet, or stabilize themselves when getting up.
2. Prevent Slips – And Remove Trippable Rugs
Slipping is another huge cause of falls in the bathroom – a tiled surface with water or a shower without some kind of rubberized mat can be a huge risk to an elderly person who lacks balance or strength. Any surface that’s a risk should have a rubberized mat installed, with proper steps taken to ensure that the mat will not slip itself, and can drain water and other fluids away easily while maintaining a grippable surface.
Making sure that all rugs, mats, and non-slip surfaces are secured is incredibly important, as unsecured rugs and mats are another huge cause of falls. Think about it – your loved one will never assume that these items are out of place, so even the slightest movement or upturned corner could be enough to trip them up.
Remove dangerous rugs and mats, then replace them with secured rubberized mats that are non-slip, and won’t move around or turn up at the corners.
3. Pay Attention To The Toilet
As mentioned above, toilets pose an even greater risk than showers when it comes to accidental falls – this is due to the fact that they are used more often, and usually not perceived as risky – whereas most elderly people know that showers are slippery and could pose problems, and thus are alert, the toilet is viewed as an everyday necessity that’s not as dangerous, which can put them off their guard and cause accidents.
Besides grab bars, consider other safety equipment for toilets – items like raised toilet seats can be very helpful, as they integrate side-grip bars with a high-profile design that minimizes the time that the elderly spend trying to balance and sit on the seat.
Toilet safety rails can also be considered if the design of a bathroom precludes grab bars – these devices consist of two large, sturdy safety rails anchored to the side of the toilet, and allow for increased stability when attempting to stand up from a seated position.
4. Take A Second Look At The Shower
Once you’ve put in grab bars and non-slip mats, you may think the shower is totally safe, but you’re not quite there yet.
Exertion can be a problem when it comes to showering – the elderly are more likely to tire out physically, which can be an issue when combined with hot temperatures that their bodies are less suited to mitigate. Because of this, it’s recommended that further safety precautions be taken, beyond mats and bars.
Reorganizing the shower can be important – everything that your loved one needs during a shower should be accessible without moving or reaching – this can lead to catastrophe, even with grab bars and mats.
A shower stool may also be a good investment – combined with grab bars, it is rather simple to sit down and get up on these non-slip stools as necessary, adding safety and autonomy to the shower experience.
Another problem can be getting in and out of the shower – the steps necessary and the awkward balance required to swing a leg out of a bathtub or high shower can be extremely dangerous. To help mitigate this risk, shower steps can be used – these non-slip devices allow a higher step profile, and allow the user to descend more gradually.
If even that is too much of a risk, you may consider a walk-in tub or shower – while expensive, these specialized designs are very friendly to the elderly, allowing easy entrance and exits.
5. Improve Visibility
This is often overlooked – but the elderly tend to use the bathroom more, and tend to wake up multiple times at night to urinate.
This can be extremely dangerous, depending on the lighting conditions in your specific home, but these risks can be mitigated somewhat by night lighting running from the bedroom to the bathroom, or even motion-sensitive lighting in the bathroom.
Even the most alert elderly person may trip or fall if they can’t see what they’re walking on, so it’s essential that this risk is mitigated, especially in the already-dangerous bathroom.
Mitigate Risks, Maximize Safety and Autonomy
It may be embarrassing to discuss the details of bathroom safety needs with your loved ones, or the ones who you’re giving care to, but it’s absolutely essential. Even just one fall can lead to poor health outcomes and long recovery times, so catching these problem areas before an accident is absolutely essential.
Don’t delay. Take a deep look at the bathroom, figure out what steps need to be taken, and ensure the safety of your loved one, and help them regain more control and autonomy.
You might not be familiar with cost-sharing health care ministries, in which Christians voluntarily share each other’s medical expenses. But with health care such a hot topic across the nation right now, it’s time to look at this alternative health care option. “Health care sharing — inspired by the biblical call to ‘bear one another’s burdens’… (more…)
The number of California seniors who land in emergency rooms after falling has risen sharply in recent years, as their population grows and they live longer with more chronic illnesses often requiring an array of medications.
The number of visits to California emergency rooms by people over 65 who fell surged 38 percent from 167,785 in 2010 to 232,146 in 2015, according to data from the state’s Office of Statewide Health Planning and Development.
Some of the rise appears to be explained by the estimated 21 percent growth in the state’s senior population, from about 4.28 million in 2010 to 5.19 million in 2015, according to the California Department of Finance.
The ranks of people 85 and older, who account for one-third of all fall-related ER visits, are also swelling: That population grew by 19 percent in the same five-year period, according to the department’s data.
In addition to their growing numbers, older adults nationwide have multiple chronic diseases and are taking numerous medications, both of which can contribute to falling, according to the CDC. And elderly adults may have cognitive decline, poor balance, physical weakness, and deteriorated vision.
“These kinds of things really affect the oldest of the old,” said Jon Pynoos, professor of gerontology, policy and planning at the USC Leonard Davis School of Gerontology. “They are more prone to have complicated medical conditions.”
Nationwide, about 2.8 million older adults are treated in emergency departments each year for injuries caused by falling, and more than 800,000 are hospitalized because of them, according to the U.S. Centers for Disease Control and Prevention.
Medical costs associated with falls are more than $31 billion each year, with hospital care accounting for about two-thirds of those expenses, according to the CDC. About one-fifth of falls cause serious injuries.
Fall-related injuries are particularly worrisome because they can lead to other problems, including immobility and even premature death, said Ted Chan, chairman of the Department of Emergency Medicine at UC San Diego and a professor at the medical school there. Hip fractures, in particular, can lead to severe health problems, including blood clots in the legs and lungs, pneumonia and loss of muscle mass, which can increase the risk of falling again.
“It is often when the real decline really starts to happen,” Chan said. “They may never quite fully recover.”
He said elderly patients who have serious falls need to be seen in the emergency room because they may have significant injuries requiring immediate medical attention. Doctors also need to determine why they fell.
“It may not be that they just tripped over something,” Chan said. “It could be related to their heart or blood pressure.”
The number of visits to California emergency rooms by people over 65 who fell surged 38 percent from 167,785 in 2010 to 232,146 in 2015, according to data from the state’s Office of Statewide Health Planning and Development.
Certain groups are more likely to end up in the emergency room after a fall, including homeless people, nursing home residents, people who live alone, and those of very advanced age, said Pynoos, the USC gerontology professor.
Joanne Lynch, 86, fell about two years ago while she was outside at night watering the garden at her Sacramento home. She was living alone at the time.
“I went face first into the flower bed,” said Lynch, a retired hospital clerk.
A neighbor heard her yell and called 911. At the emergency room, doctors told her she had broken her wrist. Going to the emergency room assured her she didn’t have an even more serious injury, she said.
“You can have a lot of things wrong with you internally that you don’t even know,” she said. “Peace of mind to an older person is worth more than anything else.”
Some counties saw sharper increases than others in the number of fall-related emergency room visits by seniors. From 2010 to 2015, the number rose 54 percent in San Bernardino County, 47 percent in San Diego County and 31 percent in Los Angeles County.
The problem could worsen, as 10,000 baby boomers turn 65 every day in the United States.
The CDC urges older adults to talk to their doctors about whether their medications could make them dizzy or sleepy. The agency also recommends seniors build up their strength through exercise or physical therapy, get their eyes checked regularly and ensure their homes are free of hazards that could trip them. The agency also encourages medical providers to screen patients for the risk of falling.
There are several programs that have been proven to reduce fall rates or the fear of falling, according to the National Falls Prevention Resource Center, part of the National Council on Aging. Among them are Stepping On, which helps build seniors’ self-confidence by teaching them about such topics as medication and home safety, and the Otago Exercise Program, in which physical therapists work on strength and balance with frail older adults over several months.
“The one good thing is there is more awareness,” Pynoos said. “But people have to practice what they learn.”
KHN’s coverage in California is funded in part by Blue Shield of California Foundation.
By Anna Gorman
Since we posted the video last week asking you to call your government representatives, many of you wanted to know how to contact them and what to say. We can give you the how and just an outline of what, but the message must be from your heart about what you really need. We don’t want to put words in your mouths.
The easiest thing is to call their offices directly, but if you have no idea how to go about that, dial 202-224-3121, which will direct you to the Capitol switchboard. When you call, ask to be connected to your senator or representative. That part is easy enough.
When you call, ask for a Legislative Assistant or LA, who are the people responsible for supplying senators with information on issues and briefing them before upcoming votes. Each LA covers a subset of issues (e.g. health care, veterans’ affairs, education, etc.).
If you call repeatedly and keep asking for the LA (and get their name from the front office), let them know you are a constituent. Leave your name and address—then they know you’re serious. They should eventually talk to you—persistence is rewarded—but expect to have to call multiple times.
If you can’t get to an LA or congressional aide, leave a message with the receptionist regarding what prompted your call. Again, leave your name and address. Call again.
Know your facts.
Things to remember when calling your representative
- Be sure you have basic information about what prompted your call in front of you, being as specific as possible about your topic.
- State your opinion on what your legislator should do, if you know how you want him/her to vote.
- Mention your experience on the issue you’re calling about. It will help establish your credibility and may prompt the aide to ask more questions for guidance.
- Be brief. Especially right now, aides receive a large number of calls every day. Be respectful of their time.
- Be timely when you call. If the vote on your issue is imminent, they’re more likely to pay attention to what you have to say.
Hello. My name is______________ and I’m one of your constituents. I am calling to advise (Senator_______ or Representative_________) that family caregivers in this country are in crisis . With the ACA bill coming up for a vote, I feel my senator/representative needs to be aware that there are an estimated 65.7 million American adult family caregivers who are not receiving any assistance under the present healthcare system and feel this issue needs immediate attention so it can be included in the bill. The estimated value of family care on an annual basis to the government is $450 billion. We can’t afford to be neglected any longer. Thank you.
Of course you can add your personal circumstances, but be as brief as possible. If you feel the need to provide more information than a brief call allows, you can always write a letter. There are guides on how to do this effectively online.
Hope this brief guide helps. Make your voice heard!
Featured image: WASHINGTON DC – FEBRUARY 3, 2015: Senator and Presidential candidate Ted Cruz speaks to constituents at a meeting at the United States Capitol. Editorial credit: stock_photo_world / Shutterstock.com
When Dan Bawden teaches contractors and builders about aging-in-place, he has them get into a wheelchair. See what it’s like to try to do things from this perspective, he tells them.
That’s when previously unappreciated obstacles snap into focus.
Bathroom doorways are too narrow to get through. Hallways don’t allow enough room to turn around. Light switches are too high and electrical outlets too low to reach easily. Cabinets beneath a kitchen sink prevent someone from rolling up close and doing the dishes.
It’s an “aha moment” for most of his students, who’ve never actually experienced these kinds of limitations or realized so keenly how home design can interfere with — or promote — an individual’s functioning.
About 2 million older adults in the U.S. use wheelchairs, according to the U.S. Census Bureau; another 7 million use canes, crutches or walkers.
That number is set to swell with the aging population: Twenty years from now, 17 million U.S. households will include at least one mobility-challenged older adult, according to a December report from Harvard University’s Joint Center for Housing Studies.
How well has the housing industry accommodated this population?
“Very poorly,” said Bawden, chair of the remodelers division at the National Association of Home Builders and president of Legal Eagle Contractors in Bellaire, Texas. “I give them a D.”
Researchers at the Harvard center found that fewer than 10 percent of seniors live in homes or apartments outfitted with basic features that enhance accessibility — notably, entrances without steps, extra-wide hallways or doors needed for people with wheelchairs or walkers.
Even less common are features that promote “usability” — carrying out the activities of daily life with a measure of ease and independence.
Laws that guarantee accessibility for people with disabilities go only so far. The Americans with Disability Act applies only to public buildings. And while the Fair Housing Act covers apartments and condominiums built after March 1991, its requirements aren’t comprehensive and enforcement is spotty.
We asked several experts to describe some common issues mobility-challenged seniors encounter at home, and how they can be addressed. The list below is what they suggested may need attention and has suggested alterations, but is not comprehensive.
Getting inside. A ramp will be needed for homes with steps leading up to the front or back door when someone uses a wheelchair, either permanently or temporarily. The estimated price for a five-to-six foot portable nonslip version: $500 to $600.
You’ll want to take out the weather strip at the bottom of the front door and replace it with an automatic door bottom. “You want the threshold to be as flat as the floor is,” Bawden said. Consider installing an electronic lock that prevents the need to lean in and insert a key.
Doors. Getting through doorways easily is a problem for people who use walkers or wheelchairs. They should be 34 to 36 inches wide to allow easy access, but almost never are.
Widening a doorway structurally is expensive, with an estimated cost of about $2,500. A reasonable alternative: swing-free hinges, which wrap around the door trim and add about 2 inches of clearance to a door.
Clearance. Ideally, people using wheelchairs need a five-foot-wide path in which to move and turn around, Bawden said. Often that requires getting rid of furniture in the living room, dining room and bedroom.
Another rule of thumb: People in wheelchairs have a reach of 24 to 48 inches. That means they won’t be able to reach items in cabinets above kitchen counters or bathroom sinks.
Also, light switches on walls will need to be placed no more than 48 inches from the floor and electrical outlets raised to 18 inches from their usual 14 inch height.
Older eyes need more light and distinct contrasts to see well. A single light fixture hanging from the center of the dining room or kitchen probably won’t offer enough illumination.
You’ll want to distribute lighting throughout each room and consider repainting walls so their colors contrast sharply with your floor materials.
“If someone can afford it, I put in recessed LED lights in all four corners of the bedroom and the living room and install closet rods with LED lights on them,” Bawden said. LED lights don’t need to be changed as often as regular bulbs.
Kitchen. Mark Lichter, director of the architecture program for Paralyzed Veterans of America, recommends that seniors who use walkers or wheelchairs take time in the kitchen of a unit they’re thinking of moving into and imagine preparing a meal.
Typically, cabinets need to be taken out from under the sink, to allow someone with a wheelchair to get up close, Lichter said. The same is true for the stovetop: The area underneath needs to be opened and control panels need to be in front.
Refrigerators with side-by-side doors are preferable to those with freezer areas on the bottom or on top. Slide out full-extension drawers maximize storage space, as can lazy Susans in the corner of bottom cabinets.
Laundry. Get a side-by-side front-loading washer and drier to allow for easy access, instead of machines that are stacked on top of each other.
Bathroom. When Jon Pynoos’ frail father-in-law, Harry, who was in his 80s, came to live in a small cottage in back of his house, Pynoos put in a curbless shower with grab bars and a shower seat and a handheld shower head that slid up and down on a pole.
Even a relatively small lip at the edge of the shower can be a fall risk for someone whose balance or movement is compromised.
Also, Pynoos, a professor of gerontology, public policy and urban planning at the University of Southern California, installed nonslip floor tile and grab bars around a “comfort height” toilet.
Cabinets under the sink will need to be removed, and storage space for toiletries moved lower. A moveable toilet paper holder will be better than a wall-based unit for someone with arthritis who has trouble extending an arm sideways.
“It really wouldn’t take much effort or expense to design homes and apartments appropriately in the first place, to make aging-in-place possible,” Pynoos said. Although “this still doesn’t happen very often,” he noted that awareness of what’s required is growing and well-designed, affordable products are becoming more widely available.
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
By Judith Graham
Our lives are so busy these days; we’re cooking, cleaning, taking care of the kids, planning parties, and working. Not to mention all the time we are spending at the gym. With our fast pace lives, this leaves little time for family.
How many times have we seen someone that we haven’t seen in awhile? We want to keep in touch with everyone, but work and life get in the way of quality time, especially if you’re busy taking care of others or being taken care of. I personally have a mother who I care for and though we see a lot of each other, it’s still hard for us to get out and see the rest of our family.
While this is a struggle for us, there are some ways we keep in touch that I wanted to share with you.
One of the biggest ways we stay connected is through technology. Between messaging, video chatting, email, social media, etc, we don’t miss a thing. With so many types of devices these days, we have a wide selection to choose from. Devices and apps such as Skype, Google Hangouts, Facetime, and of course our Nucleus, a home intercom system that makes it easy for us to stay on the same page. A lot of my siblings have Nucleus units in their homes as well and we love to connect that way. All they have to do is tap on mom’s picture and they can check in on her even though she’s miles away. This means she can chat with them without asking me, “how do I work this thing?”
Since video chatting can often be a lot for my mom, so she likes to stick to phone calls instead. To help her out, I’ve put all the numbers she needs on speed dial so she is able to call our family on her own whenever she wants. To help your family in care to have something to look forward to, I think setting up weekly phone dates with a loved one is a great idea! That way it gives them something to look forward to and it helps keep constant communication.
Bring Back Family Dinner
Don’t you miss the days where your family sat down every day at 6:30 to a homemade meal? Since it’s hard to get family in town all together, we’re able to get together with one another thanks to technology. Every month or so we like to video chat everyone in for dinnertime. We all actually have a Nucleus intercom system in our kitchens so we’ll video chat once in awhile. That way we can enjoy a meal and each other’s company just like the old days. Our family can be together no matter where we are, sharing successes, telling stories, and laughing. To make it feel like we’re all really together, sometimes we even make the same meals!
Planning Scheduled Visits
While I know finding time in our busy days can be tough, in person visits are always the best way to stay connected with a loved one in care. I know that when my family comes to visit in person is when my mom feels most connected. While we don’t get to do this often, in person visits are always uplifting.
These are just a few examples of how to stay connected to family. While it may take a little extra effort to stay connected, we all are so happy to resort to these small changes. What ways do you keep in touch?
Nucleus is a wireless home intercom system is up and coming in the smart home community. With two or more devices you can see into any room or a family member’s home with just a click of a button. Alexa enabled, this private and secure device helps families stay connected. To learn more, check out nucleuslife.com.
March is National Nutrition Month. First established by Eat Right, by the Academy of Nutrition And Dietetics, National Nutrition Month is a time to reflect upon our eating habits, and whether we’ve been fuelling our bodies with the right stuff – or cramming a couple Pop Tarts in our mouths before our shifts each morning. If… (more…)
Now we can treat it without making other symptoms worse
Half of people with Parkinson’s disease experience hallucinations, paranoia and delusions. Mary O’Hara reports on a new hope.
One night without warning, Jay Sagen leapt from his bed and grabbed the quilt, then ran downstairs and threw it out onto the street. He was certain there was a large black snake in it. His startled wife Diane hurried after him and tried to explain that nothing was there. “But he wasn’t listening to me trying to talk sense into him.”
Then Jay began seeing black cats everywhere in the house. He believed there were groups of people on the property at night too, and that a creature called Big Boy was in their bed with them. Sometimes, he believed he’d whiled away whole afternoons talking to his brother in the living room of their cosy California home south of Los Angeles.
He simply didn’t understand when Diane told him his brother was never there.
Jay, a 77-year-old artist, taught for decades at local community colleges. He was diagnosed with Parkinson’s disease in 2009 after a neurologist observed his tremors and other physical symptoms, including stiffness. Diane, a therapist now aged 73, was not scared: “We’ll deal with it, if that’s what it is,” she thought.
Preparing for the tough adjustment to life as the primary caregiver to a person with a neurodegenerative illness, Diane knew the disease was associated with health problems ranging from difficulty sleeping to tremors and slowing of movement. She also expected that it would take a toll on her time and energy as she assisted Jay with his physical impairments.
What she didn’t know – and what few people even within the medical and caring professions realise – is that over the course of their illness at least half of all people diagnosed with Parkinson’s disease will develop another set of symptoms known as Parkinson’s disease psychosis (PDP). The impact on the patient and their family – often because they don’t know what is happening – can be devastating.
Jay’s PDP symptoms began as frustrating, annoying behaviours. He would insist Diane was stealing from the family finances, for example, or accuse her of being unfaithful after 50-odd years of marriage. Eventually, the manifestations became more serious. He was increasingly seeing things and people that weren’t there. He was frightened. On one occasion Diane returned from work to learn Jay was in hospital. He’d fallen badly while charging out of the house because he had become convinced he was late for a party. “When I think back, that was disturbing,” she says. “I would think: ‘How bad is this going to get?’”
There was no answer to her question. PDP brings with it a number of serious related issues, such as a higher risk of premature death. To make matters worse, drugs for treating psychosis can heighten the physical symptoms of Parkinson’s disease. In recent months, however, a new drug has become available. It is the first of its kind and specifically treats psychosis without affecting other symptoms – but for people like Jay and Diane, questions about who the drug might help, who can get access to it, and how much it costs now loom large.
“Parkinson’s is pretty easily recognised. People are slowed down, they’re bent over, they have a tremor and we think of it as a motor disorder – which it is,” explains Dr Jeffrey Cummings, Director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and a leading authority on Parkinson’s and PDP. “But people aren’t often familiar with the non-motor components of Parkinson’s disease, including depression [and] psychosis.”
Between 7 and 10 million people are estimated to have Parkinson’s disease worldwide – 1m in the USA and more than 100,000 in the UK. This means several million people will also develop PDP and experience sometimes debilitating delusions and hallucinations. Yet while experts acknowledge that general awareness of the motor symptoms of Parkinson’s is high (certainly in the USA, where the launch of a foundation by actor Michael J Fox after his diagnosis propelled it into the limelight), PDP remains largely hidden, misunderstood and undertreated.
Dr Rachel Dolhun, Vice-president of Medical Communications at the Michael J Fox Foundation, points out that it can be difficult for people to make the connection between PDP symptoms and Parkinson’s, and to talk openly about it. “I think the difficulty is that PDP has symptoms that people don’t recognise, that they don’t bring up to their doctors and to their caregivers because they don’t realise it’s a problem… they’re afraid they’re going crazy or they think there’s not a treatment for it. Even the fact that it is defined as psychosis is a scary thing.”
Reassuring people that it is part of the disease is a big issue, she adds. “It can happen and there are things that we can do – but we can’t do anything if you don’t tell us about it.”
It isn’t clear exactly what causes it, but the psychosis can stem from either the underlying Parkinson’s disease (mostly among those who have lived with it for a long time) or the medication used to treat it. Drugs prescribed to alleviate the motor symptoms of Parkinson’s work by replenishing dopamine, the brain chemical that is diminished in people with the disease. The problem is that while this can reduce motor symptoms, increasing dopamine can overstimulate other parts of the brain and cause psychosis.
Meanwhile the medications used to date to treat psychosis symptoms – drugs such as clozapine – act by blocking the dopamine system, which tends to worsen motor problems as well as run the risk of serious side-effects.
Cummings sums it up this way: “The great paradox is that the drugs that improve psychosis make Parkinson’s worse. And so we just have not had a good alternative for our patients in terms of controlling psychosis.”
Diane Sagen perches on the sofa in the living room of her house in a tranquil cul-de-sac near Newport Beach. She has a stack of notes in her hands – pages from a diary she’s kept to chronicle the progression of Jay’s illness. By her side, propped up on a cushion, is a screen with live video streaming from the bedroom so she can keep an eye on her husband while he rests.
“[I’m] always being vigilant in case he falls, which he does a lot,” she says. “I’m very hypervigilant. Every now and again you can’t take it any more and you’ll turn [the vigilance] off and then something will happen.”
Diane has had intermittent support for Jay, such as care assistants, without which she says she would struggle to cope. While we are talking, she takes an unexpected call from a healthcare worker who confirms the couple have qualified for some new respite care through Medicare, the federal health insurance programme for retired people. Putting down the phone she takes a long, deep breath and says to herself: “Oh that’s great.”
Without this kind of help what would she do? “I don’t know. Go out of my mind. I would just be totally worn out.”
Diane says online groups have helped her to support others in similar circumstances – especially on the worst days – and to receive support in return. She is active in carers’ groups and puts herself forward for interviews like this one to raise people’s awareness. But even with her resolve to make the most of things, and given that from time to time there are glimpses of the Jay she fell in love with, she confesses it has been getting tougher as time has gone on. Physical exhaustion is one repercussion of assisting Jay day in, day out with his mobility.
But in the absence of unlimited funds to pay for help full-time, she says, it’s a mounting effort. Loneliness is a particularly challenging aspect of the caregiving role too. “You just want to escape, basically. It really is 24 hours a day of caring. And if you don’t get away occasionally, you know, you suddenly wake up and realise you are under water.
“That’s the big thing with this. It’s that feeling of isolation you get,” she says. “Nobody understands. They don’t know how hard it is. If you’ve had enough sleep you can separate yourself and say, ‘OK, it’s the disease.’ If you’re not feeling rested, you’re like, ‘Oh my god, I’m gonna kill this man.’”
Coming back downstairs at one point after checking on Jay, Diane explains why she has been speaking out about PDP. “This is what was handed to me. I guess I feel a responsibility. I’m glad to have that voice.”
Pressure on marriages and other relationships are recurring characteristics of living with PDP, not least because paranoia about infidelity features so highly. Dr Jim Beck, Vice-president of Scientific Affairs at the Parkinson’s Disease Foundation in the USA, says the “ripple effect” on the wider family and loved ones is significant. “The psychosis, as it gets more severe, can be really disruptive for relationships and for caregivers. That’s the number one reason people with Parkinson’s enter nursing homes. It’s because of psychosis.”
And because the symptoms are so complex and challenging to manage, once someone experiencing psychosis is placed in a nursing home, they are highly likely to remain there permanently. A drug that treats the symptoms of psychosis without making the physical symptoms of Parkinson’s worse is something that medical professionals and those affected by PDP have long hoped for. They know it would have a massive impact on the quality of life of people with Parkinson’s and their carers.
Elaine Casavant is a longstanding advocate on behalf of people with PDP and their families. A former nurse, she is a member of the People with Parkinson’s Advisory Council, which guides the work of the Parkinson’s Disease Foundation and speaks all across the USA on the subject. She says the difficulties of living with and treating PDP should be much more visible and a higher priority for policymakers, researchers and medics.
Elaine’s husband Len was diagnosed with Parkinson’s in the early 1990s when he was in his mid-40s. His psychosis symptoms, initially wrongly diagnosed as dementia, have waned at times as some medications and interventions, such as deep brain stimulation, have produced temporary relief. But on the whole, she says, the accusations of infidelity and the delusions and hallucinations have taken their toll. “They’re odd, they’re hurtful, they’re frightening,” she says.
One night, Len got up thinking children were playing in his room. Elaine heard him shouting in the night and ran into the room. But Len had strung an extension cord across the doorway. As she tripped and fell, he started yelling: “Elaine, Elaine, I’ve got one!”
Watching her husband suffer has at times felt relentless. “Sometimes I feel like I’m a prisoner in my own household. No matter how many times you correct or fix or clean up, tomorrow is going to be the same if not worse.”
Over the years Elaine has heard the same frustrations from people in similar circumstances, and that the strain is often unbearable. She has also been highlighting through her personal experience and activism the glaring absence of any effective treatment to target PDP. But that absence may soon be over.
On 29 April 2016, the US Food and Drug Administration (FDA) approved the first ever drug to specifically treat delusions and hallucinations associated with PDP. Trials showed the medication – brand name Nuplazid and from the compound pimavanserin – eased the symptoms of the condition without the same negative effects on motor symptoms as other antipsychotic drugs. This is because the new drug, from the San Diego-based pharmaceutical firm Acadia, doesn’t act on dopamine in the brain.
In fact, it is the first example of a class of drugs called selective serotonin inverse agonists, and is being touted by Acadia as a “breakthrough therapy”. “It does not work on the dopamine receptors. It works on the serotonin pathways,” explains Rachel Dolhun. “So it has this new mechanism of action.”
Jeffrey Cummings, a lead researcher on the trial, says that after a long time spent searching for a compound that would relieve symptoms of hallucinations and delusions in people with Parkinson’s, the new drug is a game changer. “It’s a breakthrough compound because not only have we not had any treatment for psychosis in Parkinson’s disease, we haven’t had treatment for psychosis in any neurological disease.”
The arrival of Nuplazid is “a big deal” for people with PDP as well as for their loved ones if the burden of care can be reduced, says Jim Beck: “Having a drug which doesn’t interfere with motor symptoms or other aspects of Parkinson’s yet has the potential to really address the psychosis – it’s really important.”
Ruth Ketcham was one of the people who took part in the trial. Her hallucinations had begun one year after her diagnosis with Parkinson’s. At first, her daughter Jody Wade explains, it was a belief that animals were in the house at night. “I believed her. I said, ‘What kind of animals?’” An exterminator confirmed there were none.
The alarm bells began ringing louder when Ruth started repeating a “kind of entertaining” story about the neighbours doing T’ai Chi in the garden every morning at daybreak. “Again, I believed it,” says Jody. “She described people in amazing detail and the detail never changed.” Only after Jody stayed overnight at the house did she realise it was an elaborate hallucination.
After being made aware by her specialist of the phase III trial of pimavanserin, Ruth agreed to take part. “I have to say – and I didn’t say this to my mother – I really wasn’t that hopeful,” Jody admits. “She had a 50/50 shot of getting the placebo. But you know what? It was worth a shot. There was nothing else that was going to help her.”
More than five years later, and now 93, Ruth is still taking the drug and the outcome has been dramatic for the whole family. “I remember going back to the doctor with my mother and just being absolutely elated,” says Jody, welling up. She told the doctor that her mother had obviously got the real drug. “The doctor said: ‘You don’t know that.’ But I said: ‘Yeah. But I do know that.’” Within weeks, the hallucinations had drastically reduced, and while there are some mild symptoms now and again, they are nothing like before.
“I ask my mother: ‘What does this mean to you? What do you take away from this?’ And she says: ‘It gave me a normal life back.’ Five years later I still cry talking about it. It gave us years with my mother that we wouldn’t have had.”
Like any drug, Nuplazid has various possible side-effects. Adverse reactions recorded in the trials included a small number of participants experiencing nausea, constipation and confusion – luckily, Ruth has experienced none of them.
Elaine Casavant cautions that drugs don’t work in the same way for everyone, but also that people aren’t always able to access medication when it has been approved, for example if health insurance doesn’t cover it, or if they are poor. Drugs don’t come cheap in the USA, especially branded ones.
“Most people dealing with this are exactly like me, living on a fixed income and already paying for medications,” she says. “I’m in the process of negotiating the insurance [for a Nuplazid prescription]. It’s a matter of negotiating a rate we can afford. But again, I’d be willing to pay out of pocket to get this drug as soon as I can get it.”
In early September, a few weeks into Jay Sagen’s first prescription of Nuplazid, Diane noted some positive signs in her diary. “It’s sort of sporadic,” she confirmed. “He’ll have a couple of days with no delusions, then a day with lots of them. I notice a difference though. He’ll point to what he thinks is a man (usually in the mirror) and say something about him. All it takes is for me to say, ‘There’s no man,’ and he’ll say, ‘Oh,’ and drop it. So he’s easier to bring around to reality than he was.”
A month later, in a further update, she explained that things were continuing to improve: “The Nuplazid is working really well now. He only sees the occasional phantom person now.”
For now, Nuplazid is only available in the USA. While Acadia pushes for wider distribution and informs medical professionals on developments, plus makes moves to have it approved in other markets such as Europe, millions of people with PDP will have to wait to see if this potentially transformative compound will work for them.
So what’s next? That a new therapy has been approved is understandably welcome, but it is far from the end of the suffering, not least because the causes of Parkinson’s disease are still not well understood and a cure is nowhere on the horizon.
However, Rachel Dolhun says that for the first time a variety of “really exciting” therapies could be on course to offer relief for people with Parkinson’s in general, and also for those with PDP. Some might even be available in less than two years. Most of these potential new therapies are in the early stages of trials but, she says, the possibilities are nonetheless significant: “Knowing that there’s research going on into understanding Parkinson’s better, developing better and newer treatments, and finding a cure is certainly reason for optimism.”
Jeffrey Cummings too is hopeful. He thinks the step forward with pimavanserin could blaze a trail for others like it and says he’s already being approached by drug companies interested in further research following the trials that brought Nuplazid to market.
“This is a paradigm shift in terms of opening up the field. To say: ‘Yes, we are beginning to know enough about the underlying biology of these symptoms that we can intervene more effectively.’ And it won’t be just Parkinson’s. This is a gateway to more effective neuropsychiatric interventions.”
In the meantime, caregivers like Jody Wade, Elaine Casavant and Diane Sagen understand what it’s like to be on the frontline of PDP. They would all like a cure for their loved ones, of course, but in its absence they say better support, such as more respite for patients and caregivers to help navigate the condition’s unique challenges, is vital. Raising awareness is crucial too, not only so that people are diagnosed and treated, but also because research funding may follow.
According to Jim Beck, educating the wider population about PDP is paramount. “I think this really speaks to the heart of the matter – that this is something that is just not spoken about.”
“You would not believe the people living in isolation with this,” concludes Elaine. “They have no backup, they have no support.” Jody agrees: “Too many people suffer in silence.”
On 20 October 2016, Jay Sagen died suddenly after having a heart attack. Diane requested that their experiences with PDP continue to be published.
In the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.
Shavelson, director of a Berkeley, Calif. consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers refused to participate in the state’s End of Life Options Act.
“Those are the ones who could find me,” said Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”
Across California — and in the five other states where medical aid-in-dying is now allowed — access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.
Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.
In Colorado, where the nation’s latest aid-in-dying law took effect last month, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.
Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers willing or able to dispense the lethal drugs for 100 miles, said officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.
In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.“That’s why we still have active access campaigns in Oregon, even after 20 years,” said Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”
“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”
The stance was also devastating for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.
“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”
Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.Kevin Fitzgerald, Schiller’s son-in-law, described the obstacles she faced in a local news story.
“I thought it was going to be very simple and they would help us,” said Linda Fitzgerald. “Everything came up empty down here.”
Opponents of aid-in-dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.
“People consider it a breaking of professional integrity,” said Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.
But the decisions can effectively isolate entire regions from access to laws overwhelmingly approved by voters, advocates said.
In California’s Coachella Valley, an area that includes Palm Springs, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid-in-dying, officials said.
“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.
Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.
“All we have done is say it can’t be done in our facility,” he added.
In practice, however, the decision has had a chilling effect, said Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.
Patients eligible for aid-in-dying laws include terminally-ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify they meet the qualifications.“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”
Many individual doctors in California remain reluctant to participate because of misunderstandings about what the law requires, said Dr. Jay W. Lee, past president of the California Academy of Family Physicians.
“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee said, adding that doctors have a moral obligation to address end-of-life concerns.
There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.
“They don’t want to be known as the ‘death docs,’” said Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.
Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.
At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.
Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.
Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs and on Aug. 17, ate a half-cup of applesauce mixed with Seconal, a powerful sedative.
“Within 20 seconds, she fell asleep,” Fitzgerald recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
By JoNel Aleccia
We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.
Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.
In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.
We can’t support each other if we’re busy tearing each other down.
The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.
Millions of caregivers means millions of opinions
We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.
There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.
That’s a lot of different people, in different situations, with different hopes and dreams and ideals.
No matter how different we all are, there’s one thing that binds us together: caregiving.
Because there are some things only another caregiver can understand.
Are politics on your mind?
The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.
If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.
If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.
The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.
It doesn’t matter how you voted, or if you voted. At The Caregiver Space we believe all caregivers deserve support.
Caregiving requires a lot from a person and takes its toll on everything, including family relationships. No one knows this more than the siblings tasked with the care of Mom and Dad. From sibling rivalries to dividing tasks, caring for one’s parents with one’s siblings can be the perfect setting for tension, conflicts, and disagreements.
So how can we deal with these instances? During a time when siblings ought to working together, how can we avoid conflicts from arising? Or better yet, how can we deal with the hostility and differences?
Long Term Care in America
We hear the struggles that many individuals go through when faced with long term care needs. We read about debt-ridden, older individuals outliving their savings. We watch reports of elderly individuals silently suffering abuse in one-star nursing homes.
Yes, we are vehemently against these instances, but we have always had a somewhat detached view of these occurrences. This all changes when our parents end up needing the care.
The reality is that long term care in the country is dismal. Without a solid plan, individuals and their families are left to face the sky-high costs. While some families are more than capable of shouldering the prices, many are left to look for other means.
This is why industry experts urge families, especially aging parents, to secure long term care insurance. As highlighted in Long Term Care Planning Series: Wives and Mothers Need It Most, many individuals have found solace in long term care insurance because it removes the burden of caregiving from the shoulders of adult children. It reduces the conflicts among siblings.
Common Issues Among Siblings
Friction among siblings can be normal, but it can also be disruptive, especially if not handled right. In order to address these issues, we must be able to identify them first:
Caregiving costs money—a lot of it. According to the study conducted by AARP, family caregivers spend an average of $6,954 annually—nearly 20% of their income— on out of pocket expenses. Ideally, siblings equally split the bill that comes with caring for Mom and Dad. But at times, our siblings just cannot pitch in to cover the costs, and it can be frustrating.
Being catapulted into caregiving can easily cause discord and disarray among siblings. Different people have different schedules, and sometimes schedules will clash. We all know that caregiving demands time and a great deal of effort, and we might feel as though the bulk of the task falls on our laps.
Willingness to See Mom and Dad in “that State”
Although the situation may call for all hands on deck, some siblings are just not emotionally prepared for the task. Seeing a parent’s health deteriorating will take its toll on all children, but some are just not capable of handling and coping with the situation. This may then cause resentment from his or her siblings.
Finding Common Ground for Better Caregiving
Issues are common among siblings, but we must not let it get in the way of our parents’ care. It is easy to feel slighted when the situation appears to be unfair. However, bear in mind that this is the time to work together and rely on each other for support.
Honesty and objectivity will help immensely during tense situations. Be direct with requests for help and discuss issues with an open mind. We must always remember that caregiving for our parents requires teamwork. We work together to resolve issues. We do not tear each other down and use stress as an excuse.
WASHINGTON — House Speaker Paul Ryan says the Affordable Care Act is in a “death spiral,” but his party’s repeal legislation could be the spark that causes insurance markets to unravel in certain areas of the country, according to a new analysis. In the insurance industry, a “death spiral” happens when people begin to drop individual… (more…)
It’s now 3 AM and your elderly one wakes you up for the third or fourth time that night asking for help getting to the bathroom. With no desire or patience left, you tiredly wake up and assist him or her. Since this has occurred every single night of the week, you start to question if this is something you can deal with any longer.
Health conditions are the main causes why seniors frequently get up during the night. This scenario is very common; and often times it’s the weary spouse, adult son or daughter who has accepted the caregiving burden.
Caregiving is not thought to be an easy task, in fact it’s a very challenging responsibility, and requires a lot of patience and tolerance.
But don’t you worry; there are several ways for family caregivers to make overnight caregiving easier, how? Here are 7 tips to making overnight caregiving easier:
Consider Overnight Adult Pull-Ups or Diapers
So you’re not getting any sleep each night because your elderly keeps you up all night, solution? Overnight diapers. They will make you and your senior’s life a whole lot easier.
Because of its absorbency, overnight diapers are meant for extended time use. Typically (depending on the brand) the diaper has a top layer that absorbs the urine from the skin, leaving a dry feel on the diaper surface, which prevents any skin infections and rashes.
Don’t Forego Sleep
If you’re sleep continuously is interrupted each night because of your elderly, figure out other ways to get a good sleep. Some examples include napping when the person you’re caring does, or ask another family member or friend to come over for just a few hours while you nap. We all need to sleep in order to function throughout the day, so don’t neglect it!
This is a hard one, clearly. It takes a lot of patience when it comes to caregiving. There may be plenty of times where you get frustrated or annoyed and want to just give up. But through the frustration, take a deep breath and address the situation once you calm down.
Some ways to stay relaxed is taking some time to yourself, while you’re not caring for your elderly. Try a yoga class or join a support group. Support groups can really help hash out your frustrations as you can connect and relate to others in the caregiving communities who have similar experiences. They can also give you guidance, tips and support.
Don’t Suffer in Silence
Most caregivers also have full time positions in addition to caretaking their loved ones. If you ever feel like you’re taking on more than you can manage, let your other family members or even close friends know. Asking for help is never a bad thing; if you ask them nicely and calmly, they might lend you a helping hand.
Always speak up because no one has the capabilities to read your mind or even realize you’re feeling overwhelmed.
Always Make Time for Yourself
Caregiving can be very time-consuming, but it shouldn’t take over your life, as you need time for yourself too! Make time to see your friends or do an activity that you enjoy. Giving time to yourself will not only be good for you but will keep your insanity in check.
Talk to the Doctor
If you’re elderly ones are constantly waking up in the middle of night due to conditions such as insomnia or chronic pain, have a chat with their doctor. A medical professional may be able to pinpoint the causes of these conditions and prescribe medication or make specific suggestions for the problems.
Create a Safe Environment
With serious conditions such as Alzheimer’s disease, seniors may have a number of triggers that could occur any time during the night.
To avoid any bad situation from happening, you should consider removing all dangerous objects like scissors or knives out of site. To prevent any falls, try placing night lights or low-level lighting around the room to create safe walking paths. Or if you really want to keep them in check, consider getting a baby monitor in order to hear a senior moving around at night.
Don’t let the obstacles and challenges of overnight caregiving take over your life. Take these tips into consideration and you will conquer the overnight caregiving duties like a champ. Just always remember to breathe in and out and relax.
The House GOP plan to replace Obamacare survived its first week on Capitol Hill, but everyone from the AARP to the American Lung Association is lining up against the plan, suggesting the tough road Republicans have ahead of them. The AARP says the bill increases the “age tax” on older Americans by allowing insurers to charge… (more…)
End-of-life counseling sessions, once decried by some conservative Republicans as “death panels,” gained steam among Medicare patients in 2016, the first year doctors could charge the federal program for the service.
Nearly 14,000 providers billed almost $35 million — including nearly $16 million paid by Medicare — for advance care planning conversations for about 223,000 patients from January through June, according to data released this week by the Centers for Medicare & Medicaid Services. Full-year figures won’t be available until July, but use appears to be higher than anticipated.
Controversy is threatening to reemerge in Congress over the funding, which pays doctors to counsel some 57 million Medicare patients on end-of-life treatment preferences. Rep. Steve King (R-Iowa) introduced a bill last month, the Protecting Life Until Natural Death Act, which would revoke Medicare reimbursement for the sessions, which he called a “yet another life-devaluing policy.”
“Allowing the federal government to marry its need to save dollars with the promotion of end-of-life counseling is not in the interest of millions of Americans who were promised life-sustaining care in their older years,” King said on Jan. 11.
While the fate of King’s bill is highly uncertain — the recently proposed measure hasn’t seen congressional action — it underscores deep feelings among conservatives who have long opposed such counseling and may seek to remove it from Medicare should Republicans attempt to make other changes to the entitlement program.
Proponents of advance care planning, however, cheered evidence of the program’s early use as a sign of growing interest in late-stage life planning.
“It’s great to hear that almost a quarter-million people had an advance care planning conversation in the first six months of 2016,” said Paul Malley, president of Aging With Dignity, a Florida nonprofit. “I do think the billing makes a difference. I think it puts it on the radar of more physicians.”
Use of the counseling sessions is on track to outpace an estimate by the American Medical Association, which projected that about 300,000 patients would receive the service in the first year, according to the group, which backed the rule.
Providers in California, New York and Florida led use of the policy that pays about $86 a session for the first 30-minute office-based visit and about $75 per visit for any additional sessions.
The rule requires no specific diagnosis and sets no guidelines for the end-of-life discussions. Conversations center on medical directives and treatment preferences, including hospice enrollment and the desire for care if patients lose the ability to make their own decisions.
The new reimbursement led Dr. Peter Sutherland, a family medicine physician in Morristown, Tenn., to schedule more end-of-life conversations with patients last year.
“They were very few and far between before,” he said. “They were usually hospice-specific.”
Now, he said, he has time to have thorough discussions with patients, including a 60-year-old woman whose recent complaints of back and shoulder pain turned out to be cancer that had metastasized to her lungs. In early January, he talked with an 84-year-old woman with Stage IV breast cancer.
“She didn’t understand what a living will was,” Sutherland said. “We went through all that. I had her daughter with her and we went through it all.”
The conversations may occur during annual wellness exams, in separate office visits or in hospitals. Nurse practitioners and physicians’ assistants may also seek payment for end-of-life talks.
The idea of letting Medicare reimburse such conversations was first introduced in 2009 during debate on the Affordable Care Act. The issue quickly fueled allegations by some conservative politicians, such as former Republican vice presidential candidate Sarah Palin and presidential candidate John McCain, that they would lead to “death panels” that could disrupt care for elderly and disabled patients.
The idea was dropped “as a direct result of public outcry,” King said in a statement.
“The worldview behind the policy has not changed since then, and government control over this intimate choice is still intolerable to those who respect the dignity of human life,” he said.
But in 2015, CMS officials quietly issued the new rule allowing Medicare reimbursement as a way to improve patients’ ability to make decisions about their care.
End-of-life conversations have occurred in the past but not as often as they should, Malley said. Many doctors aren’t trained to have such discussions and find them difficult to initiate.
“For a lot of health providers, we hear the concern that this is not why patients come to us,” Malley said. “They come to us looking to be cured, for hope. And it’s sensitive to talk about what happens if we can’t cure you.”
A 2014 report by the Institute of Medicine, a panel of medical experts, concluded that Americans need more help navigating end-of-life decisions. A 2015 Kaiser Family Foundation poll found that 89 percent of people surveyed said health care providers should discuss such issues with patients, but only 17 percent had had those talks themselves. (KHN is an editorially independent program of the foundation.)
Use of the new rule was limited in the first six months of 2016. In California, which recorded the highest Medicare payments, about 1,300 providers provided nearly 29,000 services to about 24,000 patients at an overall cost of about $4.4 million — including about $1.9 million paid by Medicare.
The data likely reflect early adopters who were already having the talks and quickly integrated the new billing codes into their practices, said Dr. Ravi Parikh, an internal medicine resident at Brigham and Women’s Hospital in Boston, who has written about advance care planning. Many others still aren’t aware, he said.
Data from Athenahealth, a medical billing management service, found that only about 17 percent of 34,000 primary care providers at 2,000 practices billed for advance care planning in all of 2016.
The numbers will likely grow, said Malley, who noted that requests from doctors for advance care planning information tripled during the past year.
To counter objections, providers need to ensure that informed choice is at the heart of the newly reimbursed discussions.
“If advance care planning is only about saying no to care, then it should be revoked,” Malley said. “If it truly is about finding out patient preferences on their own turf, it’s a good thing.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
Juicing has become one of the most popular modern health trends, boasting an ability to detox the body while boosting immunity and aiding digestion. But is juicing really better for you than eating whole fruits and vegetables? According to science, it’s probably worse. The American College of Cardiology’s Prevention of Cardiovascular Disease Council analyzed a number… (more…)
Introducing Vital Signs, from ProPublica
ProPublica has accumulated a wealth of data about how medicine is really practiced in the U.S. We’ve got millions of data points on things we believe everyone should know about his or her providers, like whether they’ve been barred from federal health care programs, their prescribing and treatment patterns, and how much money pharmaceutical companies pay… (more…)
As Our Loved Ones Age
All things considered, aging is a natural process that affects our daily living and self-care. We recognize that with old age, many problems and disease condition set in, making it difficult for loved ones to carry out their basic activities of daily living, also referred to as ADL.
Some of ADL that become challenging with aging and illness are:
- Personal grooming
- Moving in and out of bed or chair
- Climbing stairs
- Maintaining a safe environment
Instrumental Activities of Daily Living
Health experts have categorized another group called IADL—these complex activities require some expertise and decision-making skills:
- Using public transportation
- Handling medical emergencies
- Taking and preparing medications
- Finance management
- Social activities
Knowing When We Need Help
Regrettably, as our loved ones are affected by various illnesses, they often find it difficult to carry out their daily routine tasks.
Seeking some form of help from family caregivers or a professional in-home service, can provide much needed relief and support. Let your loved ones manage their lives as long as they can.
The idea is for your loved one to live an active, productive, healthy lifestyle as long as possible. There are tools and exercises to maintain and increase their independence and support both ADL and IADL:
- Occupational therapy
- Strength training
- Balance exercises
- Brain games
- Ergonomic equipment and devices
In occupational therapy, our loved ones learn to exercise on a regular basis in order to maintain their functional independence. This refers to one’s capacity and capability to carry out their daily activities with minimum help from caregivers.
Furthermore, the lifelong benefits of exercise, strength training and balance exercises on a regular basis can ensure our loved ones enjoy lifelong benefits, and continue to independently handle their daily activities with ease.
4 Basic Necessities
Our loved ones should develop the habit of exercising regularly and continue with the practice. As well as helping them carry out their ADL, it will enable them to stay active. Exercise and occupational therapy are more of a necessity if our loved ones are frail. OT can significantly reduce their dependence on help from others.
Prospective memory is a form of memory that involved remembering to perform a planned action or recall a planned intention at a future point in time and successfully carry our these instrumental activities. I’ve found, in my practice, that brain games significantly improve prospective memory and IADL.
Some Brain Games to Try
- Memory Card Games
- Computer Applications
- Board Games
In general, the more enjoyable the activity, the easier it will be to get your loved one to try it. Sensorial stimulation can increase their ability to remain mentally independent. Each activity should be tailored to their abilities and interests. Keep their hands exercised, strong and limber. It will make it easier for them to do so many of the activities listed above.
Equipment and Devices
- Canes and Walkers
- Grab Bars
- Raised Toilet Seats
- Special Eating Utensils
- Ergonomic Writing Pens
- Magnifying Glass
- Hearing Aids
In conclusion, figuring out your loved ones difficulties before there is a problem can make independence a lot easier for them and for their loved ones.
- Practice ambulation. Use a cane of walker to maintain their balance when needed.
- Install grab bars throughout the house—in hallways, the kitchen and bath for stability.
- Purchase special eating utensils for proper control
- For loved ones with arthritis, there’s a special pen that will ease difficulty writing.
- Purchase a magnifying glass to help them see more clearly.
- See a doctor to be fitted for a hearing aid.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do it.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
- What will you do if you need help every day?
- How much can your family help you?
- What would you do if you couldn’t stay in your own home?
- How can you adapt your home to make it safer?
- How can we pay for medical care?
- How can we pay for home health care?
- How can we pay for nursing care?
- What’s most important to you if you become very ill?
- Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
Imagine seniors walking around with stylish ear devices that amplify and clarify sound and connect wirelessly to smart phones, tablets, televisions and digital assistants such as Amazon’s Alexa or Apple’s Siri.
That day is coming, sooner than you may think.
Technology is already moving in this direction, and consumer marketers such as Samsung, Bose Corp., and Panasonic Corp. are reportedly readying new products of this kind.
They’ll be sold over the counter, to customers who will test their own hearing with cell phone apps or online programs and adjust sound parameters themselves.
The devices “will be widely used by older people,” just as earbuds are used by younger people today, predicted Richard Einhorn, a well-known composer who serves on the board of the Hearing Loss Association of America, a consumer group.
Recognizing market forces, the Food and Drug Administration is mobilizing. In December, Dr. Robert Califf, the FDA’s commissioner, said the agency planned to take “steps necessary to propose to modify our regulations to create a category of [over-the-counter] hearing aids.”
Last week, the Federal Trade Commission announced plans for a major meeting on hearing health care in April. That agency played an important role in ensuring that consumers get copies of eyeglass prescriptions so they could shop around for good deals. For the most part, that doesn’t happen with hearing aids today.
Whether agency priorities will change under the new Trump administration isn’t certain. But technology is developing rapidly under any circumstances.
Older adults with mild to moderate hearing loss, including aging baby boomers, are expected to be a prime market for a new generation of products marrying hearing aid and consumer electronics hearable technologies.
More than 40 percent of people over the age of 60 have some degree of hearing loss, mostly mild to moderate; that rises to 80 percent of people older than 80.
Yet only 20 percent of those with some degree of impairment use hearing aids because of their high cost (an average $4,700 per pair), the lack of insurance coverage (traditional Medicare doesn’t pay for hearing aids), stigma, denial and difficulty navigating the hearing health system.
Hoping to expand access, the President’s Council of Advisors on Science and Technologycame out in favor of low cost, over-the-counter hearing devices in October 2015. The National Academies of Sciences, Engineering, and Medicine seconded that recommendation in a major report on hearing health care published in June.
Both organizations cite a growing body of research linked hearing loss to cognitive decline, depression, the onset of dementia, falls, poor physical functioning and social isolation. The longer people delay seeking help, research suggests, the more at risk they become.
Several recent developments are of note as consumer electronics companies, hearing aid manufacturers, audiologists, physicians, consumer advocates and regulators prepare for a surge of new hearing devices and changes in the hearing health care system:
For 40 years, the FDA has required that adults be examined by a doctor before purchasing a hearing aid or sign a waiver noting that they didn’t want to take this step. Last month, the agency eliminated that requirement for people over the age of 18.
The National Academies of Sciences’ expert panel on hearing health had noted that the rule “provides no clinically meaningful benefit” and could discourage people from seeking care. Instead of seeing a physician, adults signed the waiver 60 to 95 percent of the time.
Still, limits on access to hearing aids exist: All states restrict distribution of these devices to certified audiologists, physicians and device specialists. And some states still require medical evaluations.
Sens. Charles Grassley, R-Iowa, and Elizabeth Warren, D-Mass., said last month that they would soon introduce new legislation endorsing over-the-counter hearing aids, sold without those restrictions.
The goal is to increase competition, lower costs and expand access to devices for people with mild to moderate hearing loss, Grassley said in a prepared statement.
Currently, six companies control nearly 98 percent of the hearing aid market in the U.S., contributing to high prices. Nearly two-thirds of people with severe hearing loss — many of them elderly — report being unable to afford the devices. The cost is generally “bundled” with professional fees for evaluation, fitting and follow-up care.
Organizations representing hearing professionals are deeply divided.
The American Speech-Language-Hearing Association, an organization representing audiologists and speech-language pathologists, doesn’t believe consumers can adequately self-diagnose hearing problems and opposes over-the-counter devices.
The American Academy of Audiology, which represents more than 12,000 audiologists, believes professionals should evaluate hearing loss but is taking a “wait and see stance” until the FDA proposes a regulatory framework, its president, Ian Windmill, said.
Another audiologist group, the Academy of Doctors of Audiology, believes the benefits of expanded access to hearing devices outweigh the risks and supports over-the-counter products.
The senators plan to introduce their legislation, which asks the FDA to issue regulations ensuring the safety and effectiveness of these devices, in this new congressional session.
“Administrations shift and legal challenges occur,” Grassley said in a statement, adding that getting the law on the books would ensure needed “certainty going forward.”
One area of considerable confusion is the distinction between hearing aids and personal sound amplification products, known as PSAPs.
This is a wide category of products, ranging from cheap devices that help amplify sound to sophisticated devices that resemble hearing aids in all but their name. In some cases, companies are marketing the exact same device as a hearing aid and a PSAP, sold at different prices.
In 2009, the FDA drew a distinction between PSAPs and hearing aids based on their “intended use.” PSAPs were considered unregulated consumer electronics products for people with normal hearing who wanted to hear more sharply — for instance, during bird watching. Hearing aids were regulated and considered medical devices meant for people with hearing impairment.
But technological advances have brought the two categories closer. And it’s well understood that people with hearing loss are using PSAPs as a cheaper alternative to hearing aids.
Going forward, Stephanie Czuhajewski, executive director of the Academy of Doctors of Audiology, believes higher-end PSAPs will become over-the-counter hearing aids.
In the meantime, the Consumer Technology Association has prepared standards for PSAPs meant to make it easier for consumers to understand what they’re buying. The standards, which address issues such as maximum output, peak output and sound distortion, and are under review at the American National Standards Institute and could be published as early as next month.
“The intent is to provide a ‘Good Housekeeping Seal of Approval’ for PSAPs,” said Mead Killion, an audiologist who founded Etymotic Research, Inc., an Illinois company that manufactures hearing devices. Currently, there is no easy, standardized way to compare these devices.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
I’ve once found my mother-in-law reaching for a slice of cake from our garbage can, as she was leaving the yard to go for a walk. Luckily, I was there to stop her from actually eating it and helped her get back inside. When I asked her why she would take that cake, she looked at me with a heavenly smile on her face, a smile much like those honest, angelic faces our kids make, and said “I was in the mood for something sweet, and you always make the best cake”. She didn’t know better and my heart tore right there and then.
A year and a half prior, she was diagnosed with progressive Alzheimer’s.
The street we live on is a cozy little space with no more than twenty houses; we’ve been there for our weddings and funerals, our kids crying for the first time and starting school. We’ve been holding each other’s hands in divorce, affairs, family tragedies and happy endings. In essence, life on our street is filled with love, laughter, secrets, gossips and friendship – everything about living here is colorful, perplexed and lifelike – just as we all are. And, after all these years, we are no longer just neighbors – we are family, with each other in sickness and in health. In a situation like mine, that helps a lot.
What is Alzheimer’s?
Alzheimer’s is the most common form of dementia, causing problems with memory, thinking and behavior. Alzheimer’s causes a memory loss so severe that it disrupts most people’s intellectual abilities, interfering with their daily life. The disease accounts for 60 to 80 percent of dementia cases. Alzheimer’s isn’t a normal consequence of aging, although it is most commonly linked with the elderly. Symptoms usually develop slowly and get worse over time, and currently – there’s no cure, even though research is ongoing.
A caregiver’s responsibility
With hospital stays getting shorter, more care is needed at home. While medication may help a little, every other form of caregiving boils down to having a lot of patience, love, understanding (of both the disease and the person having it), rationalizing the problem and being straightforward about it.
In our community, women are the traditional caregivers for both children and the elderly, so it’s important for women who take up this role to rationally approach it in order to find balance.
A year and a half ago, my mother-in-law came to live with us due to her diagnosis; at first, her state wasn’t as difficult to bear, but, in time, it started getting worse and we had to regroup. She joined our family, consisting of her son and me (we’re both employed full-time) and our two kids, her grandkids.
A novelty to all of us at the house, ALZ wasn’t really something we had ever dealt with. At first, it was all a game of guess-and-score but we’ve gradually managed to find a system that works, fortunately.
If you have an ALZ situation at home, here are a few things that may help you get more organized and lead a quality, undisrupted life (as much as possible):
Know your “enemy”
The first step to knowing what to do, how to act, and what measures of help to rely on is to gather as much information as possible about the affected person’s diagnosis, and make sure you are an integral part of their care and education team. If you are doing research online, be cautious; limit your online research to truly reputable websites and don’t trust everything you read. Ask the MD for recommended sites and reading material, and talk to them about the severity of, in my case, the in-law’s state. Apart from general reading, your MD is the best person to talk to about this condition.
Understand that it’s draining
Since you cannot change the circumstance you are in, change your attitude towards the problem; at first, it’ll seem like your whole world has crumbled and that you’ll never get back up. Stretched between my mother-in-law, the kids and their needs, my husband and myself, every new day at the house felt like dying. However, I didn’t – the situation has only made me stronger and had me think harder of ways to make things easier for myself.
To live through this – please understand everything about caring for a person with ALZ is very emotionally draining, as it is physically and mentally. You’ll be triggered often and on the verge of breaking, but accepting the situation is challenging will make things easier.
Build a support system
One of the unwritten rules of suburbia is to be there for the neighbors when you need them (and vice versa) – whether it’s in the middle of the day or night. You can call in a state of an emergency, and they’ll rush to your house with their uncombed hair and their unmade faces, in their pajamas and slippers. They’ll come and help, and that’s what matters.
Tell a few people from your neighborhood (or everyone, depending how tight you are) of your situation and ask them to help when they can. They can sometimes help sit in when you are at work, help the ALZ person find their way home if they get lost, or just be around the person with dementia so there are always familiar faces around. A person who has a dementia problem may start panicking and get scared when they are surrounded by faces they don’t recognize, so relying on people you can trust is (almost) crucial.
Talk to your children
Even without being told the facts, children will often be aware of difficult atmospheres and tensions. To avoid confusion and to make things slightly easier for everyone, talk to your children about the situation and explain what’s going on.
While you don’t have to use medical terms or get into intense elaborations, it can be reassuring for them to understand what the problem is. That way, they’ll not only be able to help, but they’ll also get an education on the disease. Further, the more they understand the situation, the more love, patience and effort they’ll invest into the relationship with the affected person. Additionally, with the kids realizing their grandparent’s behavior is a part of an illness, they’ll feel a relief knowing it’s not directed at them.
Talk to your boss
With a problematic situation at home, it won’t be a surprise if your focus and commitment at work decrease. Before you get into trouble, talk to your superiors about the position you are in. See if there is a possibility of cutting hours or an extra day off. Also, if your job entails changing shifts often, ask your boss to fix one shift you’ll be working in. That way you’ll be able to set a schedule that will be beneficial for further organizing all the chores at home.
My personal advice is not to ask to work from home, because you’ll go nuts; focusing all of your energy on the problem and having it in front of you 24/7 will additionally drain you. Going to work will be a stress relief (as much as possible), as it a change of scenery and circumstance.
Ask your spouse to help, regardless of whose parent is affected. It is not up to you to have the entire burden on your back. If your kids are grown up and responsible enough, ask them to help, too – they can go for a walk with their grandparent, read to them, watch their favorite shows together, take them to their friends’ house – anything that will instill the diseased with pleasant emotions.
Mind the tone
It is very important for everyone at the house to understand that ALZ isn’t a form of planned behavior, but a sickness. To a healthy person, repeating one and the same sentence or question may be very frustrating, leading to stress and rude behavior.
Everyone in your family should agree not to raise their voice at the affected person or harm their dignity in any way; telling them they are stupid, crazy and annoying, mocking them or refusing to answer their questions (even if they’ve asked it a millionth time that day), you’ll be hurting them more than the disease does. Watch your tone and behavior, please.
If it gets impossible to be the primary caregiver, hire help. Even, if your budget allows it from the get go, see to hire trained help that will aid in this situation. A person can come two or three times a week and provide any assistance your affected ALZ person needs. With amazing home care in San Francisco, my family has managed to work things out (as much as it can).
Consider a tracking device
There is a very arguable morality behind even suggesting something like this, but it’s very effective. If your affected person’s dementia is getting out of control and they are losing focus, leaving the house in the middle of the night, wandering around the neighborhood or hiding around the house or elsewhere, putting a tracking device on them (much like those you’d put on a pet), is very helpful.
Take care of yourself
Whenever you can, try to take care of yourself as much as possible.
Sleep, try physical activity or yoga for de-stressing, look not to miss pampering sessions or any type of soul food you’ve enjoyed – movies, galleries, theatre. Seek to see your friends often outside the house and talk of things other than ALZ. Eat your favorite food and enjoy it. Hug and kiss your kids as much as possible, they are the best therapy. Find solace in your husband, too. Join a support centre for people with ALZ (you can do this online or find one in your community) and share experiences with people going through the same. It is painful and unfair, the whole thing – but don’t forget to love yourself.
You didn’t ask for what’s happening, but you can deal with it, no doubt. Have faith in your strength and resilience, and be smart and organized with your game plan. You’ll get through it just as I have, I promise.
As family caregivers, it can feel as though there are more losses than gains in our lives. Our loved one loses their health and independence, and we can lose our time, identity, patience, and even careers. Change and loss become dependable constants in our caregiving life.
One of the most common complaints of change amongst caregivers is the feeling of isolation. With time as our most valued commodity and stress as our new and uninvited best friend, making room for the support we need is very often one of the first things we let fall by the wayside. We are simply too busy, and if we aren’t too busy, we are simply too tired to engage in the things that once made us excited.
Adding to that can be our friends who sometimes call less frequently, or make assumptions that we are probably too busy to attend the party and so the invite never gets sent, or we just can’t muster the energy to go to book club because it’d mean having to do one more thing that day. And sometimes it’s us who pull away from the friend that continues to perkily say of our terminally ill partner or parent, “They’re going to get better, I just know they will!” because that kind of fantasy doesn’t help us at all.
All of this is reason enough to say, “Good riddance!” to people for a while. Why bother with making plans you may have to cancel, attend parties that you could need to leave mid-champagne toast, or worse yet, need to get off the couch and fix your hair to attend? I give you full permission to say, “See ya!” to all that. But in saying goodbye I am going to ask you to say hello. Say, “Hello” to someone new, someone like you, someone who is also a caregiver. Why?
Sharing your experience with someone else that speaks your language with no need for translation is a powerful way to be supported by someone who understands where you are coming from. If there is only one thing that you do for yourself this month, I urge you to make finding a new friend in caregiving be that thing.
Where might you find your new BFF? How about daring yourself to attend a local caregiver support group meeting? Or, there may be people who are members of caregiving websites you visit (like this one!) that you could send an email to and introduce yourself. Or you could do what I did in one of the most uncharacteristic moves of my introverted life…
When my dad was living in the memory care unit of an assisted living, I knew no one who had a parent in the same environment. I felt like an explorer without a map. The pain of watching his decline was on certain days unbearable. Visiting with him daily, I began to notice one or two other daughters passing me in the halls with frequency yet we never gave more than polite nods of hello to one another. Until the one day my caregiving experience changed forever and for the better.
Dad was one of two men living in the unit. The other man’s daughter was one of the women I saw just about every time I was visiting my father. She and I had done a lot of hello nodding to each other.
One fall afternoon as I was leaving for the day, this daughter was walking out the door about 40-steps ahead of me. Giving no thought to what I was about to do, I sprinted up ahead to catch her. Winded and catching my breath (because caregiver’s true confession: I wasn’t exercising regularly) I introduced myself and quickly realized that I was talking to one of the sweetest people I would ever meet. She blurted out her latest issues; I nodded and responded with lots of, “Yes! Me too” statements and before we left the parking lot, we had exchanged emails and scheduled a lunch with another daughter whose mom was also living in the unit.
That lunch with two strangers had happened one year before my dad died. To this day, five years later, the three of us, now former family caregivers, are still friends. What is unique is that we each were born in different decades, yet the experience of caregiving let us transcend our ages. We spent hours sneaking out to the diner for lunch after visiting our parents to share our stories and latest caregiving conundrums with each other. We looked in on one another’s parents and reported back with anything worthy of concern. We would fill our email inboxes with funny stories and updates. We took proactive trips to visit the nursing homes that we would eventually need to admit our parents into after inevitable declines in their health. We combined our families and shared a Christmas celebration in the unit the year our parents were not well enough to travel. We were there at the funerals with lots of chocolate, flowers and emotional support. And, we were there and are still here to offer listening ears to the unique feelings that appear post-caregiving.
When I think of my caregiving friends, I’ve never felt to be truer the expression, “I don’t know what I would have done without you.”
Caregiving and the people you will meet change your life in the most new and unexpected ways. Why not go out and meet one of these people today? All you need is the word, “Hello!”
Want someone to talk to? Sign up for our caregiver buddy program, join our private Facebook group, or join the conversation on our caregiving forums.
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
By Adinah East, VP Quality Improvement, Caring People Inc
Resilience isn’t being impervious to hard times, it’s the ability to recover from difficulties.
When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.
Assess the situation
Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?
Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.
Reframe the situation
People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.
Peoples actions aren’t always a reflection of how they really care about you or value your help.
We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.
Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.
Accept your own abilities
No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.
When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.
Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.
There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.
You deserve support, encouragement, and understanding.
Remember why you’re here
Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?
Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.
Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask
Edited by Linda Burhans
198 pages, Skylar Thomas Publishing (June 1, 2016)
Connecting Caregivers is a collection of writings by experts in the fields of aging, dementia, home care and other related fields, offering hard found wisdom and practical resources for caregivers. Ms. Linda Burhans, a caregiver advocate who has facilitated over 1,200 support groups and workshops for caregivers, contributes personal stories from her work and edited the book. She describes herself as the gal who cares for the caregivers.
A Book By Many Authors
Each chapter is organized under one of the three parts: “Learning to Navigate,” “Learning to Cope,” and “Learning to Accept.” Some provide detailed information about practical matters, such as finding the right home care service, while others offer perspectives on changing cultural attitudes towards aging. The topics do vary and each could be published as separate articles on their own. The information from one chapter does not necessarily relate to the following one. Readers may find the book most useful as a reference on specific topics, such as dementia care and the help a geriatric care manager or aging care specialist can provide to families in navigating the “healthcare maze.”
The chapters do not seem to be focused on specific perspectives or angles. Christine Varner’s chapter on signs and symptoms of dementia begins with her acknowledgement that she had trouble finding the flow of the chapter as she began to write, and follows with details about her dad’s diagnosis of Lewy Body disease. Some chapters seem like short notes. The chapter, “The Caregiver “AAA” Dilemma,” was two pages long and urged the reader to ask for and accept help.
Sprinkles of Inspiration and Pockets of Advice
Most of the chapters take on a conversational tone, as if a counselor is sharing advice with you. Ms. Burhans’ touching stories from her work with caregivers are scattered between chapters. Her story about Mike, who dyed his hair and dressed in clothes from his younger days to ignite his wife’s memories of him, is heartrending, while demonstrating how a bit of creativity can help connect with those suffering from dementia. Another memorable story is the one of a bedridden, former teacher who found purpose again in helping a child discover the love of reading.
The chapter, “Power of Story” by Paula Stahel reminds the reader that sickness does not remove a person’s lived past and that many have incredible stories to share. She suggests recording their stories by asking open ended questions and recording the conversations or hiring a professional historian.
Along with the inspirational stories, there is also advice on functional matters such as understanding home care options and legal preparation for incapacity. The chapters discuss the different kinds of dementia, meaningful engagement with those who suffer from it, and transitions to memory care communities. Authors also promotes journal writing and support groups as caregiver self-care tools. One author, Ms. Mary Jane Cronin, offers writing prompts for those new to journal writing.
A couple of chapters (“What Are the Signs and Symptoms of Dementia and What Should I Do?” and “Is a Memory Care Community the Right Choice for My Loved One?”) emphasize that there is “no heroism in doing it alone.” It is not only okay, but imperative, to ask for and accept help from family members in caring for sick loved ones, and to use resources such as adult day care, home care, respite care, and residential programs.
Don’t Forget to Connect With Your Loved Ones
An important message I got from “Connecting Caregivers” is that family caregivers must acknowledge their own feelings (for instance, of guilt, resentment, loneliness, confusion). With acknowledgement, a caregiver may begin to learn to accept what they cannot change and even to “just be” with their sick loved ones.
Ms. Carole Ware-McKenzie’s chapter has a great reminder for caregivers – see your loved ones as people. That’s often forgotten by caregivers as we juggle medical appointments, bills, and chores and sometimes treat them as responsibilities to bear. Ms. Ware-McKenzie writes, “[j]ust realize, when you are looking at the lady in her wheelchair, that is the sum of who she is. She had dreams, goals, and adventures that are still playing in her head.”
“Connecting Caregivers” affirms to readers the struggles of caregiving and offers possible ways to manage stress and challenges, and perhaps to even have fun while doing it.
Having a child with cancer led to income reductions for parents and job discontinuation among mothers in a recent study, even after adjusting for pre-diagnosis sociodemographic factors. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings indicate that childhood cancer affects parents’ income and employment for years after the child’s diagnosis, and that these effects are not equally distributed among mothers and fathers.
To investigate the short- and long-term effects of childhood cancer on mothers’ and fathers’ income and employment status, a team led by Emma Hovén, PhD, of the Karolinska Institutet in Sweden, studied 3626 parents of 1899 children diagnosed with cancer from 2004 to 2009 in Sweden. They were compared with a matched control group of 34,874 parents from the general population.
The researchers found that parents’ income from employment decreased significantly following a child’s cancer diagnosis, with an overall 21 percent reduction in mothers’ earnings and a 10 percent reduction in fathers’ earnings for the year of diagnosis when compared with control parents. The relative reduction in income of mothers was evident up to six years post-diagnosis, whereas fathers’ income was reduced for two years post-diagnosis. Also, mothers were less likely to remain employed following a child’s cancer when compared with control mothers, and this was evident at the year of diagnosis and up to five years later. Having a child with cancer did not affect fathers’ employment status.
“In addition to differences between mothers and fathers, we found that a younger age of parents; lower level education; and, among mothers, being born outside Sweden were associated with more adverse effects on income,” said Dr. Hovén. “Also, mothers with a higher income before the child’s cancer were found to have an equivalent income level to control mothers at four years after diagnosis, whereas more adverse effects were found for mothers with a lower baseline income.”
The findings indicate that healthcare providers and policy makers should take steps to facilitate successful merging of work and parenting responsibilities for parents of children diagnosed with cancer. “This could include providing extended support from social work teams at the hospitals to help parents navigate the practical and emotional challenges following a child’s cancer diagnosis,” said Dr. Hovén. “In particular, our findings show that more support and financial assistance should be advocated for young parents, mothers with a lower education, and mothers who were born in another country.”
Dr. Hovén also pointed out that in countries with less generous social security systems and less rigorous national regulations regarding work, parents of children with cancer may need to continue working to avoid financial hardship. In such societies, the reductions in income from employment may not be as pronounced if the parents are forced to continue working. On the other hand, in countries where parents do not have the legal right to reduce working hours, leaving work may be the only option for parents with an increased care burden.
Full Citation: “Short-Term and Long-Term Effects of Childhood Cancer on Parents’ Income From Employment and Employment Status: A National Cohort Study in Sweden.” Annika Lindahl Norberg, Scott Montgomery, Matteo Bottai, Mats Heyman, and Emma Hovén.CANCER; Published Online: November 21, 2016 (DOI: 10.1002/cncr.30436): http://doi.wiley.com/10.1002/cncr.30436
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.
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