Navigating the ins and outs of the world of insurance can be a difficult task no matter how old you are. The laws are constantly in flux, and talking to an insurance agent can leave you wanting to toss your phone in the trash. When you’re caring for a family member, it can get even more complicated. To help make the navigation easier, here are a few of the most important things you need to understand about your parents’ or family member’s Medicare coverage.
Medicare Comes in Parts
You’ve probably heard commercials talking about Medicare Part D. What does that mean, and what happened to parts A, B and C?
Part A covers hospital visits and any care related to those visits. Most retirees qualify for this automatically.
You have to sign up for Part B, which covers physician’s visits. The premium for this is automatically deducted from Social Security payments.
Part D, the one you’ve probably heard the most about, covers prescription drug costs.
Part C, though it isn’t officially called Part C, is designed to cover the gaps between the other three parts of Medicare. It’s most commonly called Medicare Advantage, but you can’t always sign up for Advantage while you’re signed up for the other three parts of Medicare.
Confusing, isn’t it?
Thankfully, the federal government has set up an online plan chooser to help you pick the best plan for yourself or your loved one. If you’re still confused, you’re not alone and you’re in luck — each state has set up a state health insurance program (SHIP), which puts you in touch with a live person to help you navigate all the various parts of Medicare.
Ask for Itemized Bills
Even with all the coverage Medicare provides, you will likely find yourself looking at bills from hospitals, doctors’ offices or labs that weren’t covered by Medicare. While this is to be expected, it’s important to go over each of these bills with a fine-toothed comb.
Make sure each bill you receive, whether it is one that needs to be paid by you or one that was paid by Medicare, is actually for a service you received. Most of the time it will be correct, but transcription errors can lead to you receiving incorrect bills.
If you think something is wrong, or you’ve received a bill for a service that was never rendered, ask for an itemized bill. This will make the hospital go back over their records. If a mistake was made, chances are you’ll never hear anything about the bill again.
Keep Your Paperwork Organized
Most of the time you spend when dealing with Medicare will be keeping track of appointments and paperwork. Not only will it help you find errors that require the request of an itemized bill, it will also help if you’re dealing with multiple doctors.
It can be hard, if not impossible, to get some doctors to read a patient’s chart. You might find yourself paying for repeats of tests or procedures that may or may not be necessary. If you think a test has already been done or a procedure has already proven ineffective, speak up. Bring the paperwork to back you up.
Asking questions is your very best friend when it comes to Medicare. Whether you’re talking to a SHIP representative while you’re picking your parent’s plan, or a doctor or nurse, ask questions and take notes. A few questions you should always have in your arsenal include:
Is this procedure covered by my parents’ insurance? If not, is there a similar alternative that is covered?
What are the options available for psychological treatment covered by Medicare? This is an essential question if you receive an Alzheimer’s or dementia diagnosis. While there are a number of resources available, they are not all covered by Medicare.
Have you read the patient’s chart? It’s not a rude question, even if it might sound that way. A chart is a wealth of information that is far too often overlooked.
What is covered when it comes to preventive care? Preventive care can be a great way to, as its name suggests, prevent problems in the future. Knowing what is covered can save you a lot of money in the long run.
Keep your questions in a notebook or a memo file on your phone and if you think of new ones, add them in as well!
Even people who have spent their entire life studying the ins and outs of Medicare often find themselves puzzled when a new law or piece of legislation hits the books. If you’re taking your first steps into the world of insurance, be prepared to be confused. Just know you’re doing the best you can and there are tools and people out there to help you through the most confusing parts.
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, ahome 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.
Caregivers can be tough to shop for! When you’re busy taking care of everyone else, there’s hardly any time left for hobbies.
The best way to brighten a caregiver’s day is always going to be taking something off of our to-do list for us. Having an afternoon off from running errands or a little time to ourselves is always appreciated.
It’s hard to wrap “stopping by the pharmacy” or “an afternoon with grandma,” so here are a few ideas you can hand over…
For when you’re not there to say it in person…
For someone who needs a boost…
For someone you really care about…
For the caregiver who doesn’t ask for help…
For when you wish you were there to help in-person…
For the impeccably organized caregiver…
For the caregiver who doesn’t have the time for a break…
For someone who doesn’t want to hear they should take care of themselves…
One of the hardest jobs in the world is being a caregiver to a terminally ill loved one. You want to take away their pain and bring joy back into their bodies, but many times are unable to do so.
When modern medicine can no longer treat patients with late stage diseases — such as Lou Gehrig’s disease, cachexia, AIDS, cancer and multiple sclerosis to name a few — professionals often suggest hospice to the family.
Though somewhat controversial, there is a homeopathic medicine that can help your loved one by reducing their anxiety, increasing their appetite, lessening nausea and vomiting and lowering their pain levels: medical cannabis.
The cannabinoid chemicals found in the human body help to regulate your appetite, pain, memory, thinking, concentration, body movement and the five senses. Marijuana’s main ingredient is delta-9-tetrahydrocannabinol (THC). The plant also consists of more than 100 other cannabinoid chemicals.
Cannabidiol, also known as CBD, is another cannabinoid chemical researchers are growing and testing to treat specific conditions, such as childhood epilepsy. The CBD oil does not promote an intoxicating effect, which decreases the likelihood of abuse.
Of course, you should check your state’s laws before seeking medicinal marijuana as an alternative medication. It may be the option that helps to prolong your loved one’s life while managing symptoms, but if your state doesn’t allow it, using cannabis as treatment would be illegal. However, states like Florida, where medical marijuana is legal, often have online eligibility surveys that you can fill out to determine if your loved one’s condition qualifies.
As many as 28 states have legalized medicinal marijuana with possession limits. Even CNN’s chief medical correspondent Sanjay Gupta now advocates for the usage of medicinal marijuana, citing that the treatment does not increase likelihood for addiction and abuse. The incidence of developing dependence can happen in up to 10 percent of patients, which is a lower percentage compared to cocaine (20 percent) and heroin (25 percent).
There are also FDA-approved THC medications that reduce pain and inflammation as well as manage muscle control issues. CBD oil does not affect the mind and helps to decrease pain and inflammation. CBD may help patients with mental illnesses and addictions.
How Can It Help?
One of the studies conducted on cannabis extracts shows a positive outlook for the homeopathic treatment to kill certain cancer cells in animals while reducing the size of other cancer cells. There are ongoing preclinical and clinical studies to test marijuana’s extracts for its ability to treat diseases and conditions.
Currently, there are two marijuana medications approved by the FDA: dronabinol and nabilone. Both medications help to increase appetite and treat nausea. If you caring for a loved one who cannot hold down food due to their condition or its treatment, dronabinol and nabilone may help.
Sometimes the medication typically prescribed to boost appetite in terminally ill patients causes dangerous side effects, complicating treatment further. If your loved one is suffering from malnutrition and unable to take prescribed medication due to side effects like blood clots, medicinal marijuana may be the only humane option available.
Using Medicinal Marijuana to Manage a Condition
As a caregiver, you may feel helpless watching your loved one’s pain increasing while you’re unable to increase their pain medication. Increasing narcotics to control the pain can also be dangerous and result in overdosing. Medicinal marijuana is safer in this aspect.
If you live in a state where access to medical cannabis is legal, why not see if it helps?
Have you cared for someone who used medical cannabis to treat an ailment? What was the experience like? Tell us in the comments section below.
Caregivers of the world: help is closer and more affordable than you might think. Despite daily technological innovations, it’s still easy to picture technology as a pricy luxury that only top hospitals or millionaires can afford to employ. Thankfully, that isn’t the case. There are countless technological aids readily available to help you help your charge.
Ready for a crash course? Here are 7 simple ways technology can help you with caregiving:
1. Provide Connections
While social media certainly has its pitfalls, no one can deny that it’s a useful way to keep in touch with loved ones. You name a photo-sharing, video-sharing or communication enabling media, and it has likely helped someone, somewhere, gain positive social interaction with distant loved ones.
Understandably, not everyone may want or need their own social media accounts, social media makes it easier for caretakers to share videos and photo albums to help their charge feel and stay connected. When it comes to video chatting, Skype remains a perennial favorite. It’s simple to use and isn’t android or iPhone specific.
2. Promote Mental Exercise
There really is an app for everything, including apps specifically designed to help improve memory and other cognitive skills. Some apps are broad in their mental fitness goals, while others are tailored to specific needs, like apps that help autistic children and adults learn to read facial cues. You can also simply install apps for favorites like Sudoku, crossword puzzles or Scrabble equivalents for more familiar mental fun.
3. Promote Physical Exercise
Many factors can limit physical exercise or provide motivational setbacks. Anything from transportation setbacks to anxiety over new situations can make going to the gym or joining a rec team a seemingly impossible task.
Assisted living facilities and in-home caregivers alike can use a variety of emerging technology to encourage and facilitate exercise. For example, nursing homes have experimented — with positive results — by combining virtual reality with stationary equipment as a way to make stationary exercise more exciting and engaging.
On a far more accessible level, a simple and mainstream device like a Wii can provide safe, fun exercise through Wii Fit programs.
4. Manage Medical Information
Whether you’re a concerned child, parent or a professional facility, it’s important to store and track a patient’s information in one central location. Professional facilities, in keeping with the times, utilize electronic medical records and scheduling systems to keep all employees up-to-date on patient care.
For example, caregivers who work at long-term care facilities might have access to information dashboards that streamline everything from appointments to billing to prescription tracking.
Personal caregivers, like friends and family members, can use a variety of apps and tools designed to help track information related to a dependent’s medical care. These tools can range from providing reminders to take or refill medicine to acting as a one-stop hub for all important medical information.
5. Navigate Impairments
Whether it’s hearing, visual, speech or other impairments, there’s a good chance some innovative techie is working hard to come up with an app or tool to help make life a little easier. There are already plenty of apps designed to help people with physical or mental disabilities better navigate the world. Some of these innovations include speech-to-text apps to help the hearing impaired enjoy phone calls or help the less dexterous send emails without typing. There are apps to magnify text for visually impaired or amplify conversations for the hearing impaired.
6. Ensure Safety
It can be difficult to balance safety with independence. Take elder care, for example. You want an aging relative to enjoy the emotional benefits of staying in their home as long as possible, but you don’t want to worry about them falling and injuring themselves or leaving home and getting lost.
Plenty of emerging tech helps caregivers navigate that tricky relationship between safety and independence. Solutions range from:
GPS tracking accessories for Alzheimer’s patients
Apps that alert caregivers if there hasn’t been movement for a significant period
PERS (Personal Emergency Response Systems) that lets users call for help with the push of a button
7. Provide Support
Being a caregiver is never easy. Even on the best days, there are worries and setbacks, fears and questions. But thanks to the wonders of the Internet, support is only a click away. It can be difficult to find a local support group for your specific situation, but the Internet is home to thousands of blogs, message board and support sites that connect people with shared life situations, no matter the physical distance. Not only do these sites provide emotional support, they also enable users to share research helpful information.
Keep an eye out on the app store, run a Google search or talk with a doctor to learn more about the technology available to help serve your loved one’s specific needs.
In the United States, there are at least 1.4 million children and 5.5 million young adults who provide unpaid care to family members with disabilities, mental illnesses, injuries sustained through military service, and substance abuse issues. Here’s what you need to know about their lives during the holiday season:
Cold weather may exacerbate the physical health conditions of their loved ones, meaning both the worries and caring duties of caregiving youth multiply. As caregiving youth are home for longer periods of time with no school to attend, caring duties may increase and intensify. Young adult children may come home from college and find themselves expected to take on more care provision. When children and parents share in providing care for a sibling or grandparent, parents may be tempted to delegate more caregiving responsibilities to the children so that they may have some respite. Remember that children will want a chance to unwind after a busy school term. Give them space to read a book, watch television, and spend time with their friends.
In addition, keep in mind that the notion of a “normal” holiday season is always relative for caregiving youth—things can change instantly. This can be a time of instability, particularly for those youth caring for loved ones with mental illnesses or substances abuse issues. If the holiday season triggers a depressive episode or heavy substance use,
Money, Money, Money. It is important to understand that there is an intersectionality issue at play between poverty, disability, and caregiving. Caregivers, young and old, as well as those with disabilities, are more likely to be living under financial strain or affected by poverty. It can be financially difficult for parents to keep up with all of the holiday parties and the gift giving that lasts all through December. For many caregiving kids, a parent’s money woes can trickle down to being their money woes. The stress barometer of the family household may rise immensely when parents are worried about the additional pressure of providing gifts for the family, along with making ends meet. Kids can easily pick up on the added tension in the home. If you’re a parent, give yourself some grace this holiday season and don’t feel like you need to do it all. If you’re a teacher, sports coach, or club leader, be mindful of finding ways to celebrate that are cost-effective and inclusive.
They experience a diverse range of emotions. Sometimes frustrations can mount when they realize their holidays at home are not the same in comparison to their non-caregiving peers. The visits of extended family members during the holidays may also serve as an unexpected source of frustration. In a recent interview with a teenage caregiver, I was told of the annoyance felt during her aunts’ holiday visits. Her aunts would pester her about cleaning her room. Knowing she provided around-the-clock care for her grandparents every day of the year, she found their questioning condescending. It’s critical to be aware that in many instances, caregiving youth are not only the “experts” in their family members’ care, they also serve as managers of their households. Be sensitive to the shifts in family dynamics that may occur when out of town family members come to visit.
Like adults, caregiving youth are also susceptible to the dark days of winter. Be watchful for signs of depression, particularly for those under high stress or grieving. Finally, remember that
Spending extra time with their families can be reassuring and comforting for them. For caregiving youth who have experienced loss, this is the perfect time to either honor old traditions or create new ones.
It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:
We’re hoping you’ll call and say:
You’re free this weekend and would love to keep an eye on mom.
You can take her to the doctor’s the next few appointments.
You’re running to the store and would be happy to pick up whatever I need.
You’re going to come mow the lawn this week, so what time works for me?
Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.
From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained
There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.
Inspiration and affirmations
We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.
Time for introspection
Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.
A great companion gift is the promise to help out for an hour or two every week to give them time to write.
Peace of mind
Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.
Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.
A good rest
It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.
We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.
I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.
If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.
Looking into future care options for an elderly loved one is often approached from a negative perspective. However, planning for future care needs can be a surprisingly reassuring process. It’s something to be taken positively, as a safety net that you can put in place in the event that something was to happen. The key is to educate yourself and your loved one before that time comes.
While it might be a just-in-case scenario, finding a caregiver or caregiving community for your loved one shouldn’t be brushed aside. All too often, family members or older adults themselves hang back from exploring options in senior care, but this process is better investigated sooner rather than later.
Plan Just Like You’ve Planned for Other Life Events
Most people plan ahead for major life events, and the reason is simple: these events require planning to go well!
Oliver Hazan, Vice President of Sales and Marketing at the continuing care retirement community Cross Keys Village, points out that arranging care for loved ones before something alarming happens has benefits that go beyond even peace of mind:
“The services and the lifestyle that are available in a good retirement community can actually slow down the effects of aging on most residents. Proper nutrition, regular and enjoyable physical exercise, and stimulating social interaction will – so to speak – turn back the average senior’s odometer.”
Furthermore, Hazan says that families who wait until care is needed may unfortunately have fewer options:
“Many communities have a one-year or longer waiting period before the perfect apartment or cottage becomes available, and most villages also have a medical qualification process, requiring your doctor to sign off and vouch for a degree of wellbeing before you are approved to move into an apartment or a cottage. (This is for your protection, as no reputable village would knowingly set residents up to fail in their new surroundings due to mobility or memory impairment).”
Senior care, and the care for any loved one, is too important to be left to the last minute. No matter what form of care you’re looking at, be sure to ask questions and find out the parameters thoroughly before you need them.
Explore Options at Your Leisure
Because of the multiple options available in seeking care for your loved one, the more time one has to read about them and think through them, the better. Are you thinking of hiring an at-home caregiver several times a week? Full-time? Considering a CCRC?
Call around to find out which caregiving style or organizations meet the criteria. Then, it’s a good idea to meet with caregivers or their agencies, visit CCRCs and other care options and ask questions. Ask for brochures on their services and activities.
“Gathering information about senior living should a joyous occasion, full of anticipation,” says Hazan. “It ought to be done leisurely, over months if not years. Doing it in a rush, while stressed and possibly sleep-deprived after ‘something happens’ is not something I would wish on my parents or anyone else’s.”
Move From Worry to Enjoyment
Seeing the benefits of planned future care can make all the difference in your loved one’s life. The pleasures of an improved or new environment, combined with freedom from worry, can itself make an older adult feel more relaxed and able to focus on life’s small enjoyments.
Why wait for something bad to happen when you actionably plan for a better future?
As you age, you want know that your health needs will be taken care of. There are a number of unique costs associated with aging, particularly when you progress to a point that you can no longer care for yourself in your home. What can you rely on Medicaid to pay for you, and what will you need to plan to pay for yourself?
Nursing Home Care
Most states have a Medicaid plan in place that will help pay for nursing home care. While you will have to meet income and asset requirements as well as require these long-term care services in order to qualify for Institutional Medicaid, Medicaid coverage is the ideal way to pay for a nursing home for many aging individuals. In some states, like New York, there is an asset limit and no income cap, but since Medicaid is a joint federal and state program and hence the rules vary considerably from state to state, be sure to check the regulations in your state. Once these state requirements have been met, you’ll be able to choose from a list of Medicaid-approved nursing home facilities.
In some states, Medicaid will also cover a stay in an assisted living center, as part of Community Medicaid. The first requirement is that you need the level of care offered there—that is, that you are no longer able to care for yourself in your own home. Assisted living facilities are often less invasive and provide fewer medical services than a nursing home, so for many aging adults, this is an ideal solution.
Retirement communities are designed with areas for elderly individuals who are still able to live independently alongside those who have the need for a higher level of care. Unfortunately, Medicaid does not cover the cost of living in a retirement community for those who do not have a medical need for services rendered.
If you’re still able to remain in your home with a reasonable level of care, home care might be a viable option for you. By working with Medicaid, you can receive a variety of home-care services, including meal delivery, help with daily tasks, and other necessary services. Each state requires that those who are eligible for Medicaid make less than a predetermined amount per month and any income above this cap will render the individual ineligible for Medicaid assistance. In some states—like New York, for example—income above the state limit do not automatically render the applicant ineligible and excess funds can be placed in a pooled income trust to be used for specific expenditures. The rules and regulations can get complex and it is often advisable to reach out to a Medicaid professional in your state or to educate yourself fully.
Adult Day Care
In some cases, you might find that you’re able to remain home due to the care of an adult child or spouse, but that you’re not able to be at home alone during the hours when they’re at work. That’s when adult day care is highly beneficial. You’ll receive the services that you need during the day while interacting with other individuals in your age group, and at the end of the day you’ll return to your own home. In New York and New Jersey, if you meet the requirements for Medicaid, you are eligible to have it pay for this service.
There are a wide variety of programs available to care for your needs as you age. While it may at first be difficult to navigate, over time you’ll discover what works best for your unique situation.
Benny Lamm is a communication specialist and blogger. He enjoys playing the guitar, spending time with family and social networking.
When an individual is unable to manage their finances alone due to age or disability, it’s necessary for someone else to step in and help. All too often, unfortunately, financial abuse results from those interactions. In 55% of cases of financial exploitation, family members and caregivers with high trust levels are the culprits. In cases of investment fraud, losses can be even higher. While you can’t guarantee that your loved one won’t be the victim of financial abuse, understanding how it occurs and how to prevent it can help keep your loved one safe.
There is a wide pool of individuals who have been responsible for elder abuse. Anyone can be guilty: family members, friends and acquaintances, neighbors, and caretakers are high on the list, but professionals, attorneys, bank employees, doctors or nurses, and even pastors can be responsible for financial abuse of elderly individuals. In other cases, predatory individuals and con artists come after the senior without their loved ones’ knowledge.
The Most Common Scams
The most common scams are divided according to the individual responsible. By being aware of them, you can increase the odds that you’ll be able to prevent your loved one from being impacted.
Family Members often use power of attorney or joint bank accounts to allocate funds as they feel appropriate, rather than in an elderly loved one’s best interests. They may create a deed or title transfer in order to shift assets to themselves or to someone that they control. In other cases, living trusts and wills allow them to use money they want. They may deny services to conserve funds for their own purposes or threaten to abandon or harm the victim if they don’t use the money the way they want. More simply, family members and other close acquaintances may take the senior’s money, property, or valuables. They may take ATM cards, steal checks, or borrow money and not pay it back. Cashing social security checks or giving away the elder’s money or possessions without their consent are often common among family members.
Unscrupulous Professionals frequently use predatory lending, annuity sales, or investment or securities schemes to take money from unsuspecting seniors. They may use internet phishing or identity theft to steal from the senior. Medicare scams and in-home care scams are also particularly common.
Predatory Individuals use lottery and sweepstakes scams, grandparent scams, charity scams, and telemarketing scams to target elderly individuals who aren’t prepared to protect themselves. They may attempt a home repair scam in which repairs are sold, but never completed or aren’t completed well. Traveling con men also frequently target seniors. Another common ploy criminals use to defraud unsuspecting seniors, is by gaining access to a blank or canceled check and then proceeding to syphon funds out of the seniors account—especially if checks do not incorporate security features that help combat alteration and counterfeiting.
One of the first signs of abuse is unpaid bills that should have been taken care of by the individual in charge of a senior’s finances. This also includes seniors who are suddenly unable to pay bills that they should be able to cover on their usual income. Termination of utilities, appearance of property liens or foreclosure notices, collection letters, eviction notices, and other notices of discontinuation of services should all be red flags. A quick look at the kitchen cabinets is also a great way to identify abuse: when a senior has no food in the house, it’s a sign that something is going wrong.
Next, examine your loved one’s accounts. If there are large withdrawals that they can’t explain or transfers between accounts that don’t make sense, it’s a strong indication that financial abuse is occurring. If bank statements and canceled checks no longer arrive at the senior’s house, it’s important to find out and understand where they’re going, locate them, and keep an eye on the accounts. Unexplained withdrawals, especially large ones, are a red flag. Frequent transfers or unusual account activity are all indicators that financial abuse may be occurring.
Make sure your loved one fully understood legal documents at the time they were signed. Power of attorney documents that weren’t understood at the time of signing can be a sign of financial abuse. If oversight of their finances has been transferred to someone else without an explanation to the senior or their consent, their wills or estate documents have been changed, or there’s an absence of documentation about financial arrangements, you need to look deeper into their finances. Keep an eye on any sudden addition of a name to an account or joint accounts that have been opened unexpectedly.
Keep an eye on the actual expenses your loved one has versus the amount they are spending. If the cost of their care doesn’t appear appropriate for the size of their estate—for example, there are large withdrawals for in-home care or nursing home care that aren’t appropriate to their current finances—it might be time for a closer look. Listen to the explanations given by the individual in charge of their finances. If they seem implausible, you need to dig deeper into their story.
Watch your loved one for any signs of abuse. If they show sudden changes in their mood or demeanor or signs of fear of their caregiver, it’s a sign that something is wrong. Make sure the senior shows an understanding of financial arrangements that have been made for them, and make sure they aren’t evasive concerning those arrangements.
Other telltale signs of financial abuse may include suspicious signatures on checks and documents, the sudden appearance of new “best friends” who are suddenly members of the trusted circle, or missing belongings or property. Keep an eye out for excessive use of credit cards, especially use that isn’t normal for the individual. If a caregiver suddenly expresses excessive interest in the amount of money being spent on the senior, it warrants notice.
Keep in contact with the individual in charge of your loved one’s finances and anyone who has access to them. Hold regular money meetings so that everyone understands where the money is going. Encourage the senior to spend more time with elderly neighbors and relatives to reduce their isolation and ensure that they don’t feel alone. This is particularly necessary if financial abuse has already occurred.
Once financial abuse has occurred, close any joint accounts. Revoke power of attorney. Find a responsible person or agency to put in charge of handling financial transactions for your loved one. It’s also necessary to report issues to law enforcement and work with them and the bank in order to reduce the odds of financial abuse.
If these scenarios seem familiar, it’s time to speak up! Seniors should be protected, and they should never have to tolerate being financially abused by anyone—especially those closest to them. You can’t guarantee that your loved ones will never experience financial abuse, but awareness is the key to prevention.
Someone you know has recently taken on caregiving responsibilities. You want to show your support, but you aren’t sure what to say? Here are some tips on what not to say and suggestions on how to be supportive.
I hear a lot of these comments from people who probably should know better; I attribute it to them wanting to help, but not having the correct vocabulary, similar to when someone passes away. They want to commiserate, show empathy and affection, but don’t understand what to say or do. It’s okay. I’m far from perfect, too, and have said dumber things in my life. We live and learn and do the best we can. – Dean P.
What not to say
“The worst things I heard while care giving were, ‘Everything happens for a reason and God doesn’t give us more than we can handle’…also, ‘It won’t last forever’, no, it won’t but, that means my mom will have died and that’s not really a comfort.” – Odilia S.
I hate it when people say “I don’t know how you do it.” I suppose that’s meant to be some kind of compliment, but what I hear is “I sure wouldn’t want to deal with what you have to.” – DeDee M.
Don’t tell a caregiver with a sibling that will not lift a finger to help, visit or call his mother that the sibling should be let off the hook because “he had a difficult upbringing.” Don’t these people realize you grew up in the same house with the same screwed up parents? – Debra H.S.
Any comment the begins with “just be glad…” – Tammy H.H.
“You’re just a caregiver, you don’t have a real job?” – Debra R.
I hate it when people ask me what I do all day. I am a caregiver and it isn’t easy! – Kim P.
People ask some very personal questions. I don’t know when it became okay to talk about my husband’s hygiene and sex life, just because you’re curious. I just roll my eyes when people inquire. – Mandy L.
Don’t tell them not to worry because their loved one won’t be around forever. – Elizabeth M.F.
My pet peeve is when people comment, “I know just how you feel!” Reality is you can’t possibly know how I feel unless you live the EXACT same life I have. Even if you are an only child caring for your mom with TBI/Dementia and you pulled up stakes to take care of things…you really don’t know just how I feel. – Cameron G.
“You’re not working outside the home, so you have PLENTY of time! I’m just too busy ’cause I’m single and have to do everything for myself.” – Jeannette B.L.
“[People said] my mom was selfish for continuing to live on so I can continue to take care of her. That was the most hurtful thing I had ever heard. I cry and my heart breaks every day. My mom passed from breast cancer this past Feb. I took care of her until her last breath. I would do it over and over.” – Helene B.
So, what should you say?
Words are cheap…go over and help…drop by with a treat…vacuum the living room…or sit with loved one..so caregiver can get out…the thing I prefer to hear…is from someone in same position..saying…I know it’s hard…because…it validates it somehow…the most helpful thing said to me at the beginning of this journey came from my best friend..who also cares for her mom with dementia…I was bawling from the range of emotions I was feeling…and feeling lost…she said…so you don’t recognize yourself…eh?…I was so relieved…that she had those feelings as well…I so needed that emotional support…no I didn’t recognize myself…and neither did she…and it was okay… – Beth S.
There’s a saying in Spanish (Quieres se murió. Toma lo mató.) that, translated, basically says: ‘Don’t ask, just do.’ Don’t ask me to call you if I need a break. Ask me which day this week you can relieve me. – Maya S.
Tembi has other suggestions for how to make a caregiver’s day over at The Kitchen Widow.
Each year, I have the rare privilege of having a front row seat to one of the few respected rituals in contemporary life: college graduation. It’s beyond unfortunate, however, that we don’t ritualize life’s other markers beyond graduation.
In honor of life’s often overlooked but life-altering transitions, here’s what a ceremony for caregivers might look like . . .
What Are We Honoring?
Our ceremony will honor our willingness to respond to life roles that we were drafted into—unexpectedly. That’s right, the roles that called us to care that didn’t occur within our expected time frames and didn’t conform to our plans. These care roles weren’t the roles that we spent our lives sculpting our resumes to attain. Explaining care doesn’t go over well at parties—trust me, I’ve tried—because people don’t know how to respond. Care isn’t a position. It’s not a company. There are no promotions. It’s not a bucket list item. These life roles came at us, whether we were ready or not.
Honoring care authentically means none of us would individually walk across a stage for a handshake and picture. For our ceremony, that would be deceptive and impossible—we’d never fit everyone in the camera frame. Invisible life transitions like caregiving are always social—our responsibilities and connections highlight how we are rooted in and grounded with others. Our ceremony will call attention to the fact that our lives aren’t defined by other people’s beliefs about ambition. No, our ambition isn’t neatly packaged. It’s private and public, familial and stigmatizing, life-altering and life-affirming. This ceremony will honor our willingness to walk not simply toward our goals, but also our willingness to open doors into people’s lives when few others would.
Commencement speakers are the celebrities of college graduations. Carefully chosen and vetted, a person speaks for the graduating class. An inspiring figure. A public celebrity we’ve seen on television. A politician or sports figure that comes from afar to tell us about the art of living, armed with sweeping answers and clichés to rid of us of our uncertainty and tell us there is nothing really to fear because the world beyond is for the taking.
For our ceremony, we’d do things much differently. Importing a national figure to talk about our everyday, lived experiences wouldn’t make sense to us. When someone tells us they have the “answers”, we tune out. We don’t have the energy or patience for such speeches. We’re not even looking for answers and we’re not keen on listening to others who charismatically clean up and organize our lives in fifteen minutes or less before heading out of town. We’re used to messy—clean clichés wouldn’t work.
Instead, perhaps all of us in attendance would write out a line or two about our experiences and challenges, or draw a picture or create a tune, integrating our creations into a babble of voices and representations. It would be noisy no doubt, but whatever is created would be connected to others’ creations. We would be both creators and audience—our words and creations and images and sounds and presence would be our rousing anthem. Not a Katy Perry kind of anthem though. Unlike college graduates, we’re not waiting to be inspired. We know too well the expiration date of inspiration. Our experiences tell us that inspiration without love and care and a commitment to others rings hollow. I’m talking about an anthem of our own making that allows us to pause time long enough to mark our care transitions—however confusing—while surrounded by others.
This is so very complicated because we know graduation speeches always include a brief shout out to the past and an unending preoccupation with what is coming, where people are going, and who they hope to become.
Our ceremony couldn’t help but be drastically different. We don’t think like most college graduates—we don’t see ourselves as unbounded, floating in the wind of life. Our roles connect us to those we love and care for. Sometimes we feel our connections constrain us but we also know they are the life fulfilling necessities we wouldn’t want to live without. We aren’t free agents. We are social agents. That’s what will be said. And shared. And felt. And celebrated.
Most people dream of where they will visit and what sights they might see and experience after graduation. Grief. Loss. Anger. Loneliness. Silence. These experiences are typically not invited to graduation speeches. But these are the places we have visited and these are the places that have visited us. They have compelled us to expose parts of ourselves we didn’t want others to notice. They’ve made us vulnerable, inspiring us to endless self-questioning and doubt. They aren’t glamorous destinations but they are necessary parts of our journey that shouldn’t be omitted because leaving them out would mean erasing vital parts of our experiences. Let others edit their words of wisdom to only include inauthentic half-truths. Not for our ceremony though.
Today, during our celebration, we don’t need to mark our care transition with the ritual placement of our tassels because we are already marked. We don’t have to tell people we are important by reminding them of the awesomeness of our yet-to-be-lived future. We don’t have to strategically self-present like college graduates and tell the world what we think they want to hear. Today, we are as we are. We are what it looks like in the midst of disorientation and resilience. We are college students’ future selves. The only difference is that for the first time, we can see and appreciate who is around us. We are no longer consumed with looking through people to find a glimpse of the future. We can appreciate those around us—that’s right, you—for who we are now. Yes, this is where we need to be, here—complicated. Tangled. Connected. Grounded. Not out there beyond—but right here. Yes, right here. Not valuable for who we are going to be. Valuable for who we are and what we are doing now.
Excuse me, but I think I’m going to stay here a bit longer. Unlike a college graduation, I don’t have a party to attend. Nothing to run to. Not anymore. Do you notice what’s going on? People are still arriving at our ceremony. The seats around us are constantly being filled because there are no onlookers—no spectators or visitors—just participants engaged in this thing called living. Stay with me here a bit longer, would you? I want to close my eyes and feel the presence of acknowledgment and shared struggle. Grab a seat, there’s one right next to me.
Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?
By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.
My husband’s aorta dissected and he had three emergencyoperations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.
Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.
Waiting for the results of medical tests can be nerve-wracking.Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.
Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.
Referral and aftercare
After being hospitalized for eight months my husband wasreleased to my care. He was home a year and then referred to physical therapy. Whentherapists had done all they could, he wasreferred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.
“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages inCaregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.
We’re always being told we should take better care of ourselves, but we rarely get the help we need to actually do that. Here’s how caregivers feel when they’re told they should put their oxygen mask on first:
Sometimes it feels like another criticism thrown at us. Yes, self-care. How dreamy that vision is. How easy that is for others to tell us that is what we need when we are already acutely aware of it. What I really think I would love to have and what I really think would be the most “self care” mindset…is having or knowing that someone ELSE is going to take care of me for a few minutes, even maybe take care of a task, or take one of my responsibilities off my hands for a little while. – Cathy S.F.
We all know we need to take care of ourselves. This is not news to us as caregivers yet everyone who offers this advice to us can’t seem to offer how to do that when the choice we have is “take care of me or take care of our loved one”. I’m going to choose my loved one every time. I think most of us are in the position that if it isn’t ME providing the necessary care, it’s NO ONE providing it and that is just not an option for our loved ones who require total care etc. We do our best to care for ourselves but it’s literally impossible to take time away from our loved one to do so…It’s not noble or martyrdom, it’s just reality, a fact of our lives. So we do our best each day, listen to the unhelpful “advice” from people who will never “get it” until they are in the same position, and continue to find moments in our busy days for our little and glorious bits of self care (while still taking the best care possible of our loved ones 24/7). – Kelly D.
Taking care of myself is looking for the best options and making sure my loved one is safe so I can sleep at night. Trusting others to help and care while looking for what other options are out there to help. The closest family is 10 hours away, so no family meetings or help. I don’t have the answers but I will continue to fight and learn. I am not trying to be noble, I just want what is best so I can sleep. – Julie D.
The suggestions are simply not doable for a lot of us – especially when you ARE the only living family member left, when you are already suffering from a debilitating illness yourself, when you can’t even take a walk around the block because there is no one to sit with your bedridden family member who cannot help themself and constantly has emergencies, etc. Way to put more unrealistic pressure on us that we must be doing it all wrong. It is what it is! – Lemia L.
Bridget Park is a high school senior from Reno, Nevada. Inspired by the tragic loss of her brother, Bridget wrote her debut memoir at the age of 15 in the hopes that her story would encourage others to find healthy ways of grieving. In this talk, Bridget shares her insight on how to comfort a grieving teen.
It’s more than simply a case of mind over matter: a senior citizen who is active and happy tends to have innumerable health advantages over one who is reclusive and idle. A healthy senior is one who feels well-loved. “Studies show that older adults who have consistent social interaction and strong interpersonal relationships are likely to live longer with fewer illnesses than those who feel isolated and lonely,” said Janet Alonzo of Continuity Care Home Health Agency.
Any day is a perfect opportunity for families to show the senior adults in their lives just how much they care about them. It’s also a chance to nurture a lasting bond between grandparents and grandchildren — while giving their primary caregiver a much needed break.
Alonzo suggested six ways, big and small, to help seniors connect with their families:
Share a Meal.
Not just any old meal. Serve some of Grandma’s own well-loved recipes, or, better yet, have her supervise the cooking process. Teaching grandchildren how to make a family favorite casserole or pie is a priceless memory, said Alonzo.
Extra points: Create a set of placemats in advance for the occasion using construction paper and copies of family photos, both old and new. Slip them inside clear plastic sleeves, available at an office supply store, for easy cleanup.
Help Gramps Go High-Tech.
Some seniors are intimidated by technology, said Alonzo, but often all it takes is a short one-on-one tutorial from their tech-savvy grandchildren to make them feel comfortable. Grandkids can help them set up instant messaging, a Facebook or Instagram account, or practice basic texting so that grandparents can keep in touch.
Extra points: Show grandparents how to use Google Hangouts so they can “meet” with all the grandkids at one time and chat online. Or sign them up for one of the growing number of family-centric online services, such as Panasonic’s HomeTeam, where, for a membership fee, grandparents and grandkids can play online games, read online books and message together.
Take a Drive Down Memory Lane.
Alonzo said that one of the keys to preventing depression in the elderly is getting them out of the house and their same old routine. She suggests taking grandparents on a field trip to the home where they grew up, a school they attended or other memorable spots from their youth. The stories generated from such a trip could be priceless.
Get to the Root of Things.
Break out the old family photo albums and enlist Grandma’s help in labeling them on the back with informational notes so that grandkids can put names with faces. Create a family tree by filling in the blanks on a printed template, or use a genealogy website such as Ancestry.com. Grandkids can conduct “interviews” with grandparents about their lives and record them on video or audio.
Sometimes Simple is Best.
Even if Grandpa is not into technology, families who are separated geographically can still make the day special. “Sometimes a good old-fashioned phone call or a handwritten letter is a precious lifeline.” Alonzo said special packages containing a hand-drawn poster or homemade book from the grandkids are especially prized, because of the love and care that went into making them. Grandparents can post them in prominent places and refer to them again and again.
Above All, Make the First Move.
Alonzo stressed that, even if people are not especially close to their parents, there is no better day to take the first meaningful steps toward a stronger relationship. “When you open the door a little wider, you are also making it possible for grandparents to share more special moments with their grandkids. And that could be the best health boost you could ever give them.”
Continuity Care Home Health Agency, LLC is a family owned and operated, fully licensed agency that is Medicare certified and JCAHO accredited, providing skilled in-home nursing care and rehabilitation as a result of an injury, stroke or other condition and serving Kingwood, Humble, Spring, The Woodlands and Houston area populations with compassion, dignity and respect. For more information on the agency or its services, please visitwww.CCareHomeHealth.com or call 281-348-2328.
I’d like to discuss the needs of the cancer patient and the provider of their needs as a “team.” In other words, how do you really work together on this project we can call CANCER or “The Big C”?
First and foremost, let’s declare you are in this together — the patient, well, it isn’t choice — he/she has cancer. But, the caretaker “chooses” to be there and to help and to care for the other. Perhaps it’s obligation because of marriage vows or parental or child responsibilities. However, they choose to stay and help as they can. So, how can we turn this into a team effort?
Second, let’s not think of it as a team, but let’s actually BE a team.
I work with corporations, coaching their managers and their employees to work together to make a better corporate culture or environment. I help all the pieces of the pie figure out what it takes to be a better team. I want to use that knowledge to help you here.
Here’s a question to pose to yourself:
What does it take to be part of a team or to BE a team?
Stop reading this and write down some responses.
Now, that you’re back to the article, let me describe some of my answers:
A cooperative unit
People involved in some joint action
For a sports team to work, people DO have to join together, cooperate, go after a common goal.
The same can be said for a family team, and thus for a personal team working towards their common goal. For our purposes, we are using dealing with the Big “C” together for the well-being of you all.
You might not be punting, or running for the goal or might not have a ball or a stick in your hands, but you are moving forward, hoping for an outcome that is favorable and that you can all agree to and put energy towards.
With that definition, ask yourselves, what are our goals?
Do you want the cancer to be gone?
Are we willing to face the scary parts together for the ultimate goal that it will “knock off” the cancer?
Can we keep each other on track?
Here’s an example of excellent teamwork from a husband and wife team I know well. She had brain cancer, which then spread to the need for stem cell treatment. Whether earlier in chemo OR during the time she was in modified isolation, he was always there. He slept in the chair in her room every night, so when she awakened, he would be a familiar face for her. When she was in isolation, he had a full couch in her “suite” and would sleep there with his mask, gown and gloves. Now, in order for that to happen, he had to get team support from his grown kids. They had to take care of the pets at home, bring things as needed. He also needed to get support and “buy in” from his workplace. They allowed him to set up his computer and work remotely from the hospital.
She is now, home, still in semi-isolation. He is able to go physically to work now sometimes and they are advancing in positive ways.
I invite you to discuss with each other what your purposes are for your team, where you want to go with it, what you want your outcomes to be.
Remember, that alone we can do only so much… but together, we can do so much more!
We all have a friend or two who’s constantly bailing on plans at the last minute. Or showing up late. Eventually, we give up and stop bothering to invite them.
But what if that friend isn’t just flaky. What if they’re staying home to watch their little brother who requires 24/7 care? Or a grandmother with dementia? Or a parent going through chemo? If you’re not sure what’s going on with your friend, here’s where to start. So often people are afraid to ask their friends for help or burden them with their problems. Reach out to the people you care about when they start to pull away.
Serving as a caregiver, at least sporadically, seems to be a nearly universal task, yet so many people don’t seem to understand what it’s like. Being a long-term caregiver to someone with significant needs is very different from a parent caring for an ill child for a week or two, but it’s more socially acceptable to cancel plans for a kid with a cold than a chronically ill spouse.
We asked people who help regularly how they felt about canceling plans. Nearly universally, caregivers wish they could get out and see their friends more. Even if they can’t, they appreciate being invited.
Helping to make it easier for them to attend — by choosing plans they could bring their loved one to or helping to find someone to provide care — is very much appreciated. There are lots of simple ways to lend a hand and help them free up some time.
It’s not because I don’t want to go out; it’s due to me being exhausted from being a caregiver. – Lorne S.
I’m scared to make plans because I’ve had to cancel or back out of so much! – Sue A.
Even if you do go, you feel guilty, afraid “something” will go wrong if your not there. – Paula H.
I always say it’s easier to get baby sitters for a toddler than it is for a disabled elderly adult. – Delyth E.
My husband’s condition means not making it to all sorts of things. It’s just how it is. Given the choice between being able to go to all those events or having the life I have with my hubby, I’d choose him every time. – Helen C.
I actually can make it to lots of things but just have been dropped due to everyone thinking I can’t with my mom on hospice. – Doris S.
It’s hard to make plans anymore or go places because I’m tired all time and can’t get any of my so called family to help. They always have excuses after excuses. – Karen J.
It’s frustrating to not be able to go and I’m sorry that I can’t. But it’s good to know that people are thinking about me enough to invite me. – Ryan E.
I’m so accustomed to an emergency trumping any plans that I rely on buying opera/theater tickets from a season ticket holder at the door, I never want to carpool with other people, and pre/post event dinners are like my vacation: something I haven’t done since 2002. – Yenelli A.
My friends haven’t had to help anyone. Sometimes they think I’m just blowing them off. – Tim H.
I often feel like I’m letting people down, that they will in fact cease inviting me because I seem uninterested or at worst unreliable. I want so badly to attend and mean to go, but if my husband needs me I must decline. I fell bad, but I can’t leave him when he needs me. – Karen B.
People get upset with you when you can’t attend an event, even though that event is exactly where you would love to be. – Marlene M.
Even though my husband can stay alone, I feel guilty if I’m gone too long…it’s always something. I love him very much! – Susan L.
I respond with “I presently can” as my calendar is a moving target. – Julie D.
Both my husband and I are caregivers at work and at home and there is never enough time to just be by ourselves. – Barbara M.
Somehow, some way one MUST find a way to take care of themselves…to take a break; to restore some semblance of balance and space. Consider yourself equally important to the one who needs your care. Ask for help. – Marlene A.
I get so lonely at times. I see my pals out having fun and wish i was with them or just able to leave but not enough money or time. – Adriana E.
As a professional caregiver, my plans often pushed back due to staff absenteeism. I need to provide coverage on short notice. – Lotomai T.
I can’t remember the last time my husband and I did anything just the two of us. – Joy Z.
We miss out on a lot of things but family comes first. Please don’t give up on me. – Marcie K.
Are you eager to support the caregiver in your life, but aren’t sure what to do?
Here are 5 of the best ways to help:
If you live in the area, offer to pick up some groceries for him or her when you’re doing your shop. This kind gesture can be an enormous help and it won’t make the caregiver feel like you’re going too much out of your way if you say you are going to the grocery store regardless.
Call a couple of times a week to let the caregiver know that you’re thinking of him/her. This phone call will allow the caregiver to vent about the frustrations and difficulties of the day that s/he may be holding inside. Don’t worry about saying something to make it all better. Just lend an ear! Express your sympathy by acknowledging the stressors of daily caregiving and remind them of your support.
Offer to make dinner for your friend/family member one night. This will be a great way to spend time catching up and relieve the caregiver of one less thing to worry about. Alternately, invite the caregiver to go out to dinner at a nearby restaurant. Dining out can be a mini-vacation for a caregiver! When in doubt, always ask what the caregiver prefers to do and voice that you would be happy with either plan. Or you can have a healthy and delicious meal delivered right to the caregiver’s doorstep!
Spend the day learning the basic care the caregiver provides for his/her loved one and help in anyway possible. Not many people understand a caregiver’s role in a sick or aging loved one’s daily life and it will mean a lot to both the caregiver and the cared-for that you took the time to learn. When the caregiver needs a weekend to rest or even an hour to spend some time alone, you can look after the cared-for loved one.
Find out what the caregiver needs. Maybe it is something that will make caregiving a little easier, like a bath bench or a subscription to a delivery service. It might be something thoughtful for the caregiver, like a massage or spa service. Ask other family and friends to give! Anything that you give him/her will be appreciated. Start looking with a curated selection of gifts just for the caregiver.
“I can see that your life will have changed dramatically.”
When serving as a co-caregiver for both of my aging parents, I heard these, and many other similar statements routinely from others in my social and professional circles. While I was confident (and remain so) that these individuals were sincere and meant well, I have to question how much they truly understood the entire scope of what I was experiencing.
Caregiving can be a physically, mentally and emotionally draining job. Caregivers can be easily run ragged with new responsibilities. During a single day, a caregiver may meet with medical professionals, advocate on a senior’s behalf, provide transportation for an aging parent, cook meals, clean a senior’s home and/or arrange for homecare support.
At night, a caregiver’s mind does not shut off.
He or she may toss and turn in bed and be unable to sleep soundly due to worrying about a loved one’s condition. Insomnia becomes a caregiver’s worst enemy. With remembering my own caregiving experience, there were many days when I was continually on the go and trying my best to manage.
I believe the only people who truly understand what caregivers endure are the people that watch and hear of the work of caregivers (ex. healthcare workers; professional psychologists; counsellors) and, most especially, other caregivers.
If you have never walked in a caregiver’s shoes, how can you honestly say, “I understand”?
Don’t get me wrong – caregivers want and need support. I, for one, certainly appreciated all the help that came my way when Mom and Dad were alive. Even years after both my parent’s passing, I continue to believe that caregiving is not an individual endeavor but best achieved with many hands. Please, however, resist making broad generalizations with caregivers. Instead, consider how you can help – even on a smaller scale. A woman I know visits a blind woman on a weekly basis and reads her mail. This act may sound small, but the gesture goes a long ways as, without sight, the blind woman will have no idea of required payment amounts on her monthly bills. Perhaps you could offer to pick up groceries for a caregiver or shovel his/her sidewalks clear of snow? Or perhaps you could give a caregiver your undivided attention over a cup of coffee where you turn off your own cell phone and simply listen?
Considering our country’s demographics and rapidly-aging population, chances are high that you will become a caregiver yourself at some time in the future. It is likely then that you will best realize what a caregiver actually goes through. A sympathetic shoulder can be a great thing; however, saying “I understand” when you don’t will be only empty words.
Resist talking the talk until you have walked the walk.
Replace “I understand” and ask “How can I help you?” instead. It will be far more appreciated.
Quarterlife comes with a ton of obligations – from our day jobs, to work events, engagement parties, weddings, and family occasions that fill up our calendars. If you have a friend who’s overwhelmed with these responsibilities, and has been too busy to set a time to meet up, here are five things you can do to get your friendship back on track — courtesy of our friendship expert, Nicole Zangara.
1) Take action!
Call up your friend and get out your planners, open your google calendar, get a post-it note — whatever you use to manage your schedule, set a date and time to make this happen. Go as far as to schedule what you will be doing, and block out enough time for that event, whether it’s a movie night in or dinner and drinks. When you both can agree on a date (even if it’s far, far in the future) you’re both committing to that day and time. Rather than giving or getting the excuses, you have something planned, and have given your word to each other that you’ll try your best to keep it. Hey, our parents scheduled playdates for us, so jump on the bandwagon!
2) Check in with your friend to see if everything is okay.
Is there something going on in his or her personal life? A recent breakup or family issue could be to blame for your friend’s absence. Maybe she’s overwhelmed, and doesn’t even realize how unavailable she’s been. Ask how your friend is doing, and see if they need some time to talk about all the stress that they’ve been dealing with. As hard as it may seem, don’t take this absence personally. We all get busy and unfortunately, our social life usually gets hit first, since it may not be the highest priority at that time (versus job and family responsibilities).
3. If your friend is always busy, and this friendship means a great deal to you, then it’s time to have a talk.
Not over text or over email, but an actual face-to-face, one-on-one conversation, sans technology, to talk about your friendship. Tell your friend that you miss spending time together, and that you’re feeling hurt and sad that they are always busy. Let your friend know that you value the friendship, and you want to be a part of his or her life, and vice versa. Ask how that could be possible, discuss ways and agree on how to better keep in touch.
4. If the friendship isn’t worth your time, take a step back and evaluate whether this is worth getting upset over.
Do you keep trying to make plans with this friend, and get nowhere? You shouldn’t be working harder than your friend, so if you’ve attempted numerous times to talk to her and to check in, move on and find some friends who value your time as well. Chances are, if she’s doing this to you, she’s doing this to everyone, and that says a lot about her character.
5. Something to note is that this situation is somewhat normal in terms of getting older.
Maybe you and your friend work opposite work schedules (the night shift versus the normal 9 to 5), or you have to do more traveling on the weekends when your friend has weekends free. Or your friend is working while attending graduate school, so her time is limited. As we get older, we have more responsibilities and more on our plates, but it’s important to establish a balance. We need to make time for our friends, even if it’s a check in, or a text that sends the message that you’re thinking about your friend, with an apology for being so busy. You may not be able to change your schedule or how busy you are, but you can at least let your friend know you’re thinking about her, and that you’re looking forward to your next scheduled get together, whenever that may be.
It can be difficult to show your support, especially when you’re far away. Here are ways you can help your friends and family who are providing hands-on care and remind them how much you appreciate what they do.
Of course, I encourage you to ask the caregiver what they want. However, sometimes it’s difficult to articulate what you need. Many caregivers have been let down before and are hesitant to ask for help again. Show them that you’re serious about helping by starting off with these ideas.
Provide respite care
Coming over for a few hours yourself or providing a gift certificate for a few hours of respite care is a wonderful way to show them you understand how hard they work.
Take care of the paperwork
Taking care of bills, managing insurance claims, and other paperwork can be incredibly stressful and time-consuming. If you’re a long-distance caregiver, taking responsibility for financial and legal tasks is something you can do from afar that will be greatly appreciated.
Can you help provide rides to appointments or by running errands? If you aren’t able to do this personally, you can still provide gift certificates for transportation services or arrange for things like groceries and supplies to be delivered at their convenience.
Craft supplies and activities
It can be hard to keep carees entertained. Finding an activity that’s a good fit for someone’s abilities and interests can mean peace and quiet for their caregiver.
Can you arrange to have someone take care of the cleaning and laundry for them? This is a great way to give a caregiver an extra hour for themselves.
Cooking can be a rewarding hobby and an act of love – or it can be time-consuming drudgery. If dietary restrictions aren’t an issue, a gift certificate to their favorite local cafe or a service like Seamless is fantastic. Some organizations, like Meals to Heal, provide prepared meals tailored to the specific nutritional needs of people with illnesses.
Something just for them
Before caregiving took over their life, what were they interested in? Pick out something they’ll really enjoy and do what you can to make sure they’ll get the time they need to enjoy it.
The best support a caregiver can get is your understanding and appreciation. Call just to say hi and make sure they know you mean it when you ask how they’re doing.
A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic and terminal illnesses. Many believed that not only did they have to deal with the effects of their illness, but also the unskillful acts of friends and loved ones who didn’t understand what they were experiencing. And that’s the purpose of this article: to explain it.
There’s a constant interaction of elements that contributes to mood unpredictability in people with chronic and terminal illnesses. From my experience, the most critical ones appear to be a lack of control, loss, physical effects of the illness or medication, and uncertainty.
Lack of control
Imagine for a moment that your attitude about living is heavily shaped by people, objects, and activities. It could be an abusive boss, a landlord intent on evicting you, or a car that constantly breaks down. While oppressive, you could act. You could move on to another job, find a new apartment, or use public transportation.
But what if none of these choices resulted in acceptable consequences? If you quit work, you might not find another job in this economy. If you gave up your apartment, you might become homeless. If you couldn’t afford to repair or replace your car and there was no public transportation available, you’d be stuck in your neighborhood. A lack of control would, at the very least, make you disagreeable.
People who live with chronic or terminal illnesses constantly experience a lack of control. If I have an advanced case of CPOD (chronic pulmonary obstructive disease), I know that without proper medication and the constant use of oxygen I’ll die. On one side of the scale is death. On the other, the side effects of the medication, minimal movement, and oxygen. No contest. I’ll choose the medical protocol—not because it’s something I desire—but rather because it’s something more acceptable than the alternative.
The feeling of losing something that gave your life meaning is profoundly upsetting. And it happens often with chronic and terminal illnesses. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is devastating. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit may disappear, but its memory is constantly present.
We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.
Most of us want predictability in our lives. If I buy an apple tomorrow I expect that it will taste similar to the one I ate yesterday. When the traffic light turns green for me, I expect cars to my left and right to stop so I can go through the intersection without being hit. But what if that apple I had yesterday tastes like an onion today or it became optional for anyone facing a red light to wait until it turned green? I could stop eating apples and wait until no cars were present before going through a green light. But what if the unpredictability spread into other areas of my life? My anxiety would become palpable. We may want some uncertainty and a bit of spontaneity to spice up our lives, but it’s predictability that allows us to function sanely on a daily basis.
For many people with chronic or terminal illnesses, predictability may be an illusive state of being. One day, the illness is controlled either by medication or who knows what, the next day it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Wondering if the pain will ever stop might make it difficult for someone to be supportive when a friend complains how his wife never lets him choose the movie they’re going to.
For someone with a terminal illness, there is certainty, but it’s not desirable: there’s the knowledge that the illness will continually progress. The uncertainty involves the course it will take. People with terminal illnesses often wonder how much pain they will have to endure or the extent of reduced abilities until the body just gives up.
It is difficult to prevent the effects of any one of the above elements from having a negative impact on relationships. Living with all of the elements, and quite often having to deal with them simultaneously, is mind-boggling. Experiencing chronic and terminal illnesses is not a static event. It’s constantly changing as each of the elements takes its turn effecting one’s mind and personality.
Some very wise people maintain that illness doesn’t necessarily have to control the mind. By understanding that pain and suffering aren’t internal, but rather our reaction to events, the effects of chronic and terminal illnesses can be reduced or eliminated. As a Buddhist for most of my adult life, I would like to believe that. But as someone who has been involved in the lives of people who have chronic and terminal illnesses, I know the difficulty in believing in a concept when all you can think about is the loss of something that was critical to your happiness, unrelenting pain, or a future envisioned, but unobtainable.
What I have found that’s comforting to people I serve, is the expression of acceptance and compassion for what they are experiencing. The anger and sarcasm vented in my presence is rarely about something I have done (I certainly hope not!). But rather, it’s the effects of trying to balance that board on top of the ball. As a monk once said to me, “We do the best we can, given the circumstances of our lives.” So when someone you know who has a chronic or terminal illness appears to be cranky, unappreciative, aggressive, or distant, it’s not about you. The balance is probably out-of-wack.
Each of us responds to loss and sadness differently, but here are a few Body Aware Grieving tips to consider while supporting a person who is in mourning.
1. It can be difficult to concentrate when emotions are very strong; small decisions and easy tasks take much more energy and focus to accomplish. Encourage them to avoid scheduling too many challenging activities.
2. Their mood may change quickly and repeatedly. Bursts of cheerful behavior may come through during a generally stressful or sorrowful time. Pay attention to shifts in their attitude and try to allow them to ‘lead’ the tone of your visit.
3. Physical senses can become either shut down or overstimulated. Many environments can seem too loud, crowded, bright or fast moving, and it can be easy to become overwhelmed. Stay in locations where you can influence as many factors as possible.
4. A person in grief or shock may not know what type of help to request; their current situation may be very unfamiliar to them. Try to offer examples of specific ways you are willing to contribute (bringing food, driving, babysitting, making phone calls).
5. For a recent death supporters should take over as many responsibilities being “host” as possible (organizing details for transportation, greeting guests, food, facility rental or preparation etc.); this is especially true for funerals and memorials.
6. Be aware of “chatting” too much, because a person in deep grief will have a hard time listening. Even if they have asked about your day or recent news, try to keep your response simple.
7. Silence can be golden; even a few minutes of shared quiet can be very bonding and consoling, especially while in a group. Suggest a period of silence and see if they are attracted to that idea.
8. Not sure what to say? Maybe just put your hand on their shoulder for a few minutes.
10. Trying to “cheer someone up” may not be welcome. If they are allowed to experience their natural sadness for a while, they will likely become ready to smile, laugh and be “upbeat” at their own pace. Many people just need some friends with whom they do not feel pressured to mask their true feelings.
This blog is republished with permission from Bodyawaregrieving.com
It’s supposedly getting easier for innovative drugs for rare diseases like Duchenne muscular dystrophy to reach the market. So why, asks Andy Extance, is hesitancy still proving devastating to desperate families?
Had it begun five years earlier, Leo Le Gal’s story would have followed a depressingly familiar pattern. Aged somewhere between 8 and 11, Leo would lose the ability to walk and go into a wheelchair. In his teens, he’d progressively lose the use of his arms and with them, his independence. And eventually, some time between the ages of 21 and 30, his heart and lungs would give out, causing him to suffocate. But today there is a tantalising hope.
Leo’s parents, Ruth and Damien, got him onto a clinical trial for a drug that promises a reprieve. It’s one of three drugs that are trying a totally new approach: directly treating the genetic problem that causes his disease, Duchenne muscular dystrophy (DMD), rather than simply treating its symptoms. Trials like Leo’s have sent parents scrambling to get their sons on them and have brought the drugs to the threshold of widespread availability. Yet if he weren’t already involved, the drug would probably remain out of reach for him, as it is for most of the 250,000 boys with DMD worldwide.
Leo’s condition occurs because he’s a boy. As a woman, his mother has two X chromosomes, but one has a flaw in the gene carrying instructions for making a protein called dystrophin. Dystrophin sits inside muscle fibre cells and normally helps to hold them together, but the gene for its creation is one of the longest we have and is therefore susceptible to random mutations.
As a boy, Leo inherits one of Ruth’s X chromosomes and pairs it with his father Damien’s Y chromosome. Ruth – with her two X chromosomes – is unaffected by her faulty dystrophin gene because she has a spare; Leo, who has inherited the flawed gene, has no backup. This pattern means that usually only boys have DMD.
The long dystrophin gene makes a large, complex protein that would be unable to get into muscle fibre cells from the outside, meaning the protein itself can’t be a treatment. Instead, steroids have long been the main therapy, boosting what muscle remains and providing better breathing and a healthier heart. But steroids come with a long list of side-effects, making them despised by the Le Gals and other DMD families.
The most obvious side-effect is a round-shaped face, caused by a build-up of the hormone cortisol that encourages fat deposits there and elsewhere throughout the body. The other side-effects include osteoporosis, which gives boys extremely weak bones, and cataracts. In addition, steroid treatment only slows the progressive muscle wasting. When their breathing muscles get too weak, boys with DMD go on ventilation machines, which can add at least ten years to their lives.
By the time Leo’s DMD was confirmed in 2011, the New Jersey-based company PTC Therapeutics had already been testing a drug treatment in boys for nearly six years. When testing whether DMD drugs work, the most important measurement is currently how far recipients can walk in six minutes. In one trial, conducted between February 2008 and December 2009, boys given one dosage for 48 weeks could walk 31 metres further on average than others who’d been on an inactive placebo for the same time. “In the patients who were walking less than 350 m, we saw a greater than 68 m difference in change in distance walked versus placebo,” says the CEO of PTC, Stuart Peltz. “That is one of the largest changes ever seen in the six-minute walk test in a clinical trial.” A quick guide to clinical trials for rare diseases
Yet these results were at first considered a failure. They hadn’t passed the ‘statistical significance’ test used to ensure apparent drug effects aren’t chance improvements. Government regulators like the European Medical Agency (EMA) and US Food and Drug Administration (FDA) normally demand statistically significant results before they allow drugs to be sold. Consequently, the boys on the trial had to stop treatment, sending shockwaves through the patient community via the internet. “It was a desperate situation for parents because their children had seen a benefit, and then it had been stopped,” Ruth recalls. PTC also paid a price soon after, losing its DMD partnership with a larger drug firm, Genzyme, in September 2011.
But PTC didn’t give up. In June 2012, it once again began giving its drug to people who had been on the 2008/09 trial. The boys got continued access to the therapy, while the company would get long-term data to help clear up previous safety concerns. Keenly watching PTC’s progress, Ruth and Damien heard that the company had another, larger, trial planned, but to get on it Leo – then aged seven – had to be able to walk 150 m.
Given that they live in southwest England, they might have enrolled Leo onto the arm that was due to start in London in December 2013. However, they knew that if they waited until December he’d never make it. Instead they pushed to get Leo onto an arm conducted in Boston, Massachusetts, starting in August.
In Boston, Ruth and Damien sat outside the room in which Leo was being tested. “That was very nerve-wracking,” Ruth tells me, with Leo sat behind her, brandishing a raygun made from old plastic milk bottles. “We said to Leo, very clearly, ‘Just do as much as you can, and if you can’t do it, don’t worry – mummy and daddy will find a different way to get you the medicine.’ Then we sat in the corridor, just praying that he was going to do it.”
Thankfully, Leo was just able to walk his 150 m and got accepted onto the trial. Since then he’s been taking his medicine as vanilla-flavoured powder mixed with milk and water three times a day, flying to Boston every eight weeks so the scientists can check his progress.
To make proteins like dystrophin, our bodies rely on machinery that assembles them from amino acid building blocks. That machinery carefully follows a set of genetic instructions, adding block after block until the protein is complete. DMD mutations are therefore like a misprint in the middle of the instructions. Leo’s nonsense mutation, which he shares with around one in eight DMD boys, switches an instruction to add another block for one that simply says ‘stop’. That leaves him with an incomplete and ineffective protein that quickly breaks down.
PTC’s drug is designed to tell the protein-building machinery to carry on past the nonsense stop message to make a full-length, functional protein. “Dystrophin restoration on its own does not increase muscle strength or mass,” says Peltz. “You have to increase muscle fibres to do that. When kids are five or six years old, they still have a significant amount of stem cells, a lot of capability to regenerate muscle. Add dystrophin and that’s how at that early age you’re probably capable of seeing some increase in strength.”
Despite its earlier setback, PTC persuaded the EMA to consider granting approval based on data from the same ‘failed’ trial. At first, the outcome was also disappointing: in January 2014 the EMA turned PTC’s application down. But, after PTC asked it to reconsider, just four months later it recommended conditional approval (a one-year, renewable licence allowing a company to market a new drug while further studies continue), on the grounds that “the benefits…outweigh its risks”. Boys in Europe are beginning to get the drugs through normal routes, on the condition that the results of the trial that Leo is now on make the case for it stronger.
There are further constraints: it’s only for boys above the age of five, and only those who can still walk. If that becomes the only group in the UK able to get it, it will mean more agonising delays for the Le Gals, because Leo is unlikely to be eligible – he’s now nine years old and has reached the point where he can only take a few steps, with help.
“We’ve seen quite a lot of deterioration in his walking, so we believe he’s getting a placebo,” says Ruth. “For us it’s very hard because this medication has been sitting on the shelf since the day he was diagnosed. And that just makes us want to scream.”
Three long biopsy scars on his bicep, a coin-sized infusion port implanted beneath the skin in his chest, and more air miles than most 12-year-olds: this is part of the price Max Leclaire has paid for halting and seemingly reversing the deadly creep of DMD through his body.
“After about 16 weeks he started getting better, and that made everything that we were doing completely worth it,” says Max’s mother, Jenn McNary. Moon-faced and shy, Max walks in on our Skype call, politely says a few words, and walks off again. “He is no longer using a wheelchair at all. He’s just started learning how to pedal a bicycle, although I’m very careful about him getting hurt.”
Max is missing a chunk of DNA, known as an exon, containing some of the instructions for dystrophin. Our protein-building machinery can just carry on if whole steps are missing; this makes the short but partly functional dystrophin seen in Becker’s muscular dystrophy, a milder form than DMD. But the deletions in boys with DMD leave behind part of a step, which confuses the process and halts it altogether. There are 79 exons on the dystrophin gene, and Max’s deletion is in number 52. One in five of all DMD boys have a deletion in this area, near exon 51.
Mutations near exon 51 are therefore the obvious first target for Sarepta Therapeutics in Cambridge, Massachusetts, the company making the drug Max is taking. Instead of targeting the protein manufacturing machinery, they paste a molecular patch onto the instructions being fed into it, ensuring that no confusing partial steps remain uncovered. The troublesome exon is simply skipped. Part of the protein is missed out, but a mostly normal chain is still made.
It may sound simple, but to do this Sarepta must painstakingly build DNA-like chains that can stick to the flawed genetic instructions. Every molecule of its drug has 30 segments, each containing just over 1.5 times as many atoms as PTC’s drug. “This could be one of the more expensive drugs to produce in the history of our industry,” says Chris Garabedian, Sarepta’s CEO. Its size and composition also mean the drug can’t be swallowed and has to be injected – in Max’s case, via the chest port that feeds directly into his bloodstream.
That expense meant that when planning the trial Max started on in August 2011, Sarepta only had enough drug for a 12-person trial, with four getting placebo. “We knew it had to be the smartest designed small study in the history of Duchenne,” Garabedian recalls. “We needed to select patients very carefully in order to show a potential drug effect.”
“It was like trying out for a play,” McNary remembers, but luckily for Max he fitted the bill of being neither too healthy nor too weak. A stay-at-home mum at the time, McNary flew with him and her baby daughter from their home in Vermont to Columbus, Ohio, every Tuesday, returning every Thursday. Meanwhile, her then-husband took care of the four other children who stayed at home – including Max’s older brother Austin, who also suffers from DMD.
Where Max is the quiet video game player, Austin would confidently talk to me on his own, were he not exhausted and bed-ridden after summer camp. “Austin knows all the different things he wants to be,” McNary says. “He needs to be about ten different professions, but he’s talking about college, zoology, mechanical engineering. He’s such a little entrepreneur already. He’s talking about all the different things he wants to do. He wants to be rich, to make money.”
Austin also desperately wants to be off steroids. “The biggest problem is osteoporosis – it’s very severe,” McNary says. “I broke his back just setting him in his wheelchair. They have back breaks on a regular basis. There isn’t anything they can do; their bones are sort of powdery. It’s a compression fracture, so there’s no casting or anything as such. Austin often talks about how steroids are some of the worst drugs in the world, and they’re OK for his use, but we can’t get Max’s drug, which has no side-effects. It’s really frustrating.”
Three years older than Max and therefore weaker, Austin wasn’t eligible for the Sarepta trial, although he once had a rival drug injected into the skin of his belly. That drug originated from Prosensa in Leiden, the Netherlands, who are pursuing the same approach as Sarepta, albeit with a different molecule. But Austin was given it by the British pharmaceutical giant GlaxoSmithKline (GSK), who signed a deal with Prosensa in 2009 to take it into one of the largest DMD trial programmes ever.
GSK’s resources could smash through any problems of supply and run trials in places exon-skipping drugs had never reached before. But – despite earlier promising, positive and statistically significant results – it couldn’t translate that to the larger-scale trial outcome normally needed to get drugs to patients. In September 2013, on what Prosensa CEO Hans Schikan says DMD families call ‘Black Friday’, the companies had to announce that another trial had failed.
“When we had our Prosensa town hall meeting here and announced the result, some people started crying because they’d put years of energy and effort into it, and everything seemed to be on a roll,” Schikan reveals. He adds that there were downsides in reaching for a larger trial, like bringing in countries with different standards of care, or with less experience in the tests used. “In one site, the six-minute walk test was done in a church because they didn’t have a long enough corridor correct to the standards,” he says. “If you have a 10,000-patient trial, all over the world, that’s robust. To run a 186-patient trial in a rare disease in nearly 50 sites in almost 20 countries on five continents, in hindsight, I would say that’s almost destined for failure.”
As well as leading to the termination of the deal between GSK and Prosensa, the results also spoiled things for Sarepta, whose trials are delivering statistically significant outcomes. “In October 2012 we had what we believed was unprecedented data,” Garabedian says. “We were getting pressure from the DMD community at that time, to do everything possible to get the FDA to approve the drug. We said we’re not sure if the FDA would consider this for approval, so we’re going to talk to them and ask the question.”
“In 2013, the first time we asked the question, they said they were open to a New Drug Application (NDA) and we began to prepare our submission,” he says. “In November [after the GSK/Prosensa announcement] they changed their mind and indicated it was premature to submit an NDA, citing reasons related to our competitor’s failed study, among others, not based on any new data from our drug.”
“It’s maddening, it really is,” McNary fumes. “It was frustrating at 16 weeks, when I saw it start to work, and it was even more frustrating at 48 weeks when they had data to back that up. I really expected the FDA to just bend over backwards, reach out to this company and say ‘Apply now, we want to approve your drug,’ because this is an untreated illness.
“Austin is set to lose the ability to feed himself – his arms just aren’t reaching up high enough. Every time he’s starting to lose a skill, I wonder: if he had been on drug six months ago, would he have kept that? I think it’s devastating for him too, to see how well Max is doing and wonder why it’s our government [the FDA] standing in the way. It isn’t research, it isn’t money; it’s simply the government being too cautious.”
These struggles come at a time when it’s supposed to be getting easier to bring drugs for rare diseases to patients. Each of these three leading drugs has been given the label ‘orphan’ by the FDA and EMA, thanks to their focus on a rare disease. That label gets their cases processed speedily, reduces the costs involved and gives drugmakers longer before other companies can bring generic versions of the same drug to market. The EMA also offers conditional authorisation – which PTC’s drug is benefiting from – through which 1 in 20 drugs is now being approved by the regulator.
Conditional authorisation is used “where there is a great medical need,” explains Spiros Vamvakas, head of the scientific advice office at the EMA. “Orphan products qualify for it as part of their designation.” But drugs proceeding down this route must still provide convincing data to confirm that they’re actually having a positive effect on their target disease to stay on the market: “The fact that the exon-skipping approach is a pharmacological Rolls-Royce has to be translated into clinical efficacy,” says Vamvakas.
The EMA has also held ‘open discussions’ with DMD experts and families and brought charities and patient groups onto its scientific advisory groups for clinical trials. Perhaps inspired by these meetings, Vamvakas, an archetypal bespectacled, greying civil servant, makes the surprising admission that faced with a disease like DMD, he’d “try any drug for myself or family members I love”. But, with a hint of regret, he stresses that the EMA’s job is ensuring that all new drugs have a “scientific basis of proof” – and that inevitably takes time.
While the FDA doesn’t have an exact equivalent to the conditional route, Sarepta’s Garabedian calls the involvement the authority is giving their trials “incredible at all levels”.
“[The FDA’s] attention to this is significant,” he says. But given that no one has ever tried to run trials like this before, he’s not surprised the going hasn’t been smooth. “This is a new genetic technology, being developed for a disease in which there are no current drugs like this approved. When you have that much uncertainty and newness, I think we often see a natural conservatism from regulators.”
The close attention to DMD may now be set to pay off. The FDA has set out ‘accelerated approval’ pathways for both Sarepta and Prosensa’s exon-skipping drugs. Prosensa has now started filing its updated evidence. Sarepta’s plans to do similarly, however, has been put back to ‘mid-year 2015’ after the FDA asked for extra data. Will new laws speed-up access to life-saving new drugs?
The FDA pathway invites applications based on their existing data and also calls for further trials, which is good news for the so-far neglected majority of DMD sufferers. It’s also a boost for boys with deletions on exons other than number 51, as the FDA says it will consider results from trials of drugs modified to skip them. Sarepta’s efforts to collect more information include giving its exon 51 drug to boys previously excluded from the trials because they were too young or can’t walk.
That move has meant that, after years of watching his brother Max benefit, Austin Leclaire now hopes to enrol in a study for the same drug. Likewise, Prosensa has committed to re-dose boys on its previous trials – including non-walkers given its drug just once, like Austin – and plans to extend this to many more.
People with DMD and their families who have suffered for so long would be justified in claiming part of this small victory for themselves. Organisation has emerged from frustration, and patient charities are now a powerful driving force, not only for regulatory change but also for drug research and development.
Rare diseases are a largely alien world for big pharmaceutical companies, so the science behind new treatments must be plucked from university labs and developed. Sarepta’s drug emerged from the University of Western Australia, Prosensa’s is from the University of Leiden, and PTC’s came from CEO Stuart Peltz’s time as a professor at Rutgers University. In developing these discoveries, the companies bank on strong financial support from charities – an asset that makes them better able to face the challenges they have than conventional small drugmakers. “We see a lot of support from patient organisations, which is unique to the rare disease world,” Prosensa’s Schikan underlines.
Charities are increasingly taking an even more direct role. For example, McNary is now the director of outreach and advocacy at the Jett Foundation, which raises awareness and funds for DMD within the Duchenne Alliance. The role gives her the flexibility needed to care for her family, while the money the Foundation raises goes towards the research grants that the Alliance makes through its ‘Duchenne Dashboard’ platform. “You have a researcher that has this really great idea and needs $50,000 or $100,000,” McNary says. “We can fund that seed money, and eventually they’ll get to a place where they get other funding for the development or a pharmaceutical company will pick it up. But often there just isn’t enough money to start that basic, beginning research on something that looks particularly good.” Why families are paying and paving the way for new drugs
This approach is also helping push a prospect that’s exciting the entire DMD community, because it could treat every single boy. In the 1990s, Kay Davies at the University of Oxford discovered we have a backup genetic sequence for dystrophin. The slightly shorter protein it encodes, known as utrophin, goes into unborn babies’ muscles, but we stop making it and start producing dystrophin when we’re born. Davies co-founded a company called Summit that has already run early trials on a drug designed to restart utrophin production, aided by funds from Australian charity Save our Sons, among others. Davies is also getting money from the UK’s Muscular Dystrophy Campaign to look for even more powerful alternatives.
Davies hopes that if this approach is successful it can be used together with the drugs nearing approval, each drug enhancing the other’s effect. And regardless of the success of any individual treatment, she points out that the progress currently being made is unprecedented in her 30 years working on DMD.
“Even five years ago I used to stand up and say ‘I still think a therapy’s a long way off’. Now, I would say therapy for a certain group of patients is almost here,” says Davies. “It may not be a huge improvement, but it will be some improvement. I think progress will continue to be reasonably quick – not quick enough for some of the patients, but the accelerated progress that we’ve seen over the past five years is likely to continue.”
That progress is embodied by PTC’s drug, which doctors can already give to patients outside of trial settings in countries like Turkey, France and Spain. In the UK, where Leo Le Gal lives, the government is set to decide whether to cover the costs by the end of December 2014, which would mean it might reach eligible boys by summer 2015. PTC is yet to negotiate a price in the UK, but Peltz told me to look at prices for other drugs for rare diseases, which are typically $200,000–$400,000 per year. For diseases like cystic fibrosis health systems have been unsure that level is affordable, but Peltz believes it will be for DMD. “We’re not doing our job if we can’t convince payers of the benefit to patients,” he says.
Since I visited the Le Gals, Leo has finished the first 48-week trial of the PTC drug and has gone onto a two-year extension study where he definitely gets the real drug. “As soon as Leo tried it, he said ‘Ooh, that tastes different’,” says Ruth. “We’ve definitely seen a change; he seems to have stabilised. But what’s going to happen in two years, we don’t know.”
Despite his young age, Leo is a great example of the steely determination and optimism that has delivered fragile hope. As we chat in his living room, he uses his arms to haul himself over to the sofa and up onto it to sit next to me. He tells me that compared to walking, his wheelchair is “more fun, in a way”.
“He loves his powered wheelchair,” Ruth laughs. “It’s brilliant– he ties a rope on the back and ties it to his friends’ scooters and tows them around. He tries to charge them 10p a ride. He has a fantastic time, whizzing around the green, getting up to all sorts of shenanigans.
“I do get upset at sports day, when I see all the other children running. And he says ‘Mum, man up, for goodness’ sake’. I get upset and he says ‘stop moaning’. So we’d better stop moaning.”
PTC Therapeutics has previously received funding from the Wellcome Trust, which publishes Mosaic. Kay Davies sits on Mosaic’s Editorial Advisory Group and is Deputy Chair of the Wellcome Trust.
Young Caregivers make up 12-18% of the caregiving population yet are not often talked about in the media. Although many people don’t think of teens and millennials as caregivers, they are and have their own unique set of problems they face in addition to the enormous amount of challenges caregivers in general face. Here are some below:
1)Delayed Planning for the Future
Taking care of another person, whether ill, elderly, or disabled, is emotionally and physically taxing. It easily becomes a 24/7 job- one that is often not recognizable by a Fortune 500 company. This is a catch-22 because your early twenties is the best time period to cement a stable career path, and to start choosing romantic partners, as well as whether or not to have children. However, young caregivers regularly find themselves putting off these crucial milestones due to lack of time, and demanding caregiving duties. This often leads to young caregivers having a delayed start for their own lives. They engage in a delicate balancing act between their role as a caregiver, and finding their role in society.
2) Keeping Up with Schoolwork
Many young caregivers are in high school, and college (some- even in lower grade-levels) and have to deal arduous tests, papers, reports, projects and homework, in addition to their caregiving duties. It is often hard to carve in time to study. Many miss assignments, and take off days to school to take loved ones to doctor appointments. Some teachers/professors can be understanding of the situations, offering extended time for assignments with doctor notes. Others, might not be. The pressure and intensity can take a toll on young caregivers, pushing them back in their academics, and in severe cases lead to young caregivers to drop out.
3) Loss of Friends/Social Life
Being a young caregiver can sometimes mean choosing between going to the late night movie screening with your friends, and making sure you are home on time to give your loved one his/her medication. Friends might not often understand, and the terms “flaky, and “missing out” might become part of their vocabulary. Because of this, young caregivers often miss out on the carefree nature associated with youth.
4) Adapting to a New Way of Life
Young caregivers are more often than not navigating two worlds. They have to grow up faster than some would like and quickly learn new skills such as medical terminology, managing complex finances, and finding legal representation for both themselves and their loved one. Sometimes they do this with little to no guidance, and can get lost in the shuffle of their new role.
5) Finding Time for Self-Care
For some, taking a break after long hours caring for another can be anxiety inducing. It means straying away from a set plan which may be jammed packed with chores including- managing medications, washing a bed pan, preparing weekly meals, etc. It can be difficult to choose and it can even cause the young caregiver to feel guilt. Self-care frequently becomes an afterthought or a young caregiver juggling too many activities at once. However, not taking time out for oneself can also cause a young caregiver to withdraw from his/her support system and isolate his or herself.
Caregiving is difficult at ALL ages, yet noting and being aware of these challenges can aid in the young caregiver’s struggle. It can help prevent burnout at an early age, and lead to a more balanced lifestyle for each member of our community.
Do you know a young caregiver who could use support? They can connect with other young caregivers in our young caregiver support groups (we have one group for high school students and one group for young adults) and find support on our community forums.
How do you tell someone that they’re seriously ill, or even dying? Chrissie Giles explores how doctors learn and how they deal with the stress and trauma, for both their patients and themselves.
I was 14 when I was told that Dad was dying.
I was sitting on the floor of our lounge. Mum said that she had some news. Sensing the worst, I fixated on the newspaper open in front of me, staring at an advert for German cut glass. It was cancer, in his pancreas, and he might only live a few more months.
They were going to try an operation, she told me and my sister, to reduce the pain. As a nurse, she must have known that this was unlikely to work, but she knew her audience and didn’t want to overload us with information. She must also have known that pancreatic cancer has one of the bleakest outlooks, due in part to a lack of symptoms in the early stages. By the time you start to notice the nausea, jaundice or weight loss, it’s too late to hope that it’s something less serious.
That night, as I wrote my diary, I could think only about how I felt. Reading it back now I wonder what it was like for my mum, still reeling from the news herself and having to tell the rest of us.
As a doctor, Kate Granger often deals with discussions of bad news and end-of-life issues. But there’s another reason the subject interests her. Three years ago, at age 29, she was diagnosed with a very rare and terminal form of cancer that affects soft tissue. She’s spoken and written widely about her experiences living with a terminal disease. She spearheaded the #hellomynameis campaign, to get people working in the NHS to introduce themselves to every patient they meet. She’s planning to live-tweet her own death.
Granger was diagnosed with cancer while on holiday in the USA. “I came up against some tough episodes of breaking bad news when I got back to the UK,” she says. “When I got my MRI results, I was told when I was by myself by a junior doctor who didn’t know what the plan was going to be.”
In pain and alone, she was told “without a warning shot” that her MRI scan showed that the cancer had spread. “He was basically giving me a death sentence. He sort of couldn’t wait to leave the room and I never saw him again.”
Her experiences have shaped her as a doctor. “I think I was a fairly compassionate, empathetic doctor, but having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs Smith that she’s got lung cancer’ as a task.”
I ask several doctors to share their experiences and the patients that stick in their mind. One remembers a woman who came in soon after Christmas. She’d been in and out of the doctor’s over the last nine months or so, with general symptoms that are all too easy to ignore: feeling tired, swelling. Then she had suddenly become jaundiced and short of breath, so a relative brought her into A&E.
It was one of those situations, the doctor says, where you pull the curtain back and immediately think, “This is not good”. “On very few occasions do you touch something and say, ‘This is cancer’.” When she examined the patient’s abdomen it felt “rock hard”.
“She kept saying to me, ‘It’s going to be fine, isn’t it?’ And I’m saying, ‘We’ll do everything we can, let’s just do a few tests and figure out what’s going on.’ At that stage in my mind, I knew it was bad, but I still had to figure out exactly what flavour of bad it was.”
The woman was anxious to be home on New Year’s Eve to make a call to family overseas. But blood tests confirmed that she’d need to stay.
“She said to me, ‘Tell me the worst-case scenario.’ I looked at her. She looked at me. And in my mind I was thinking, ‘She’s not ready for this diagnosis.’ Then her relative stepped in and she said, ‘No, no, she means what’s the worst-case scenario in terms of how long does she have to stay in hospital?’
“At that moment, you realise that we all know exactly what we’re talking about, but we’re all accepting it to different degrees.”
Compartmentalisation seems to be important in coping – she mentions several times that bad news, death, is part of the job. “You have to be strong for the family. I can easily go back into the staffroom and cry my eyes out, but in that moment I have to be there, I have to be the hand to hold, or the shoulder for the patient to cry on.”
The doctor speaks of the first patient she cared for, a man with metastatic prostate cancer. She was called into his room by his wife, and as she arrived, the man took his last breath. His wife broke down onto the floor in front of her. “In that moment, you have to say, ‘I’m sorry, he’s gone.’ And you kind of just have to suck it up and be there for them in that moment because that moment is everlasting for them.”
It’s an office that could be anywhere, except for the clinical examination bed in the corner, complete with curtained cubicle. The A4 sign blu-tacked to the door reads: “Room booked for breaking bad news all day”.
Six medical students sit listening. “They’re real. They cry, they shout,” the facilitator, a doctor, tells the circle in front of her. Nerves crackle in the air, a few people let out self-conscious laughs. The facilitator is referring to the two actors who have come to rehearse scenarios with the students, who are one year from being qualified doctors.
Understandably, they have a lot of concerns: about getting emotional, whether or not they should touch patients, saying the wrong thing, not saying the right thing, not saying anything at all.
The scenarios are given out. The students’ eyes hurriedly scan down their sheets of paper. Cringes. Sharp intakes of breath. One scenario is based around telling a parent that their son has suspected schizophrenia. Another, that a person’s relative has unexpectedly died in hospital. One peers over his neighbour’s shoulder. “You got the short straw,” he says, shaking his head.
When the time comes, his neighbour heads for the door. “You might want to take in some tissues for this one,” the facilitator tells him. “Yeah, for me,” the young man replies.
The rest of the group watch on a live video link, seated in plastic chairs in a half-moon in front of the screen. They touch their faces self-consciously, arms crossed protectively across their bodies. The speaker hisses.
In the room sit a couple. The woman fiddles with her handbag, refusing to accept the news. The man stares silently at his hands, fists clenched around his mobile phone. “Is that true, or just something you say?” he says aggressively to the young doctor. He’s just been told that his baby, born at just 26 weeks, has severe brain damage and is unlikely to survive.
The students’ eyes dart to each other across the room. A shake of the head, a smile, a wince, sensing their colleague’s pain – pain they are all going to feel for themselves sooner or later.
Telling the truth takes its toll.
Researchers at Aristotle University in Greece have found, perhaps unsurprisingly, that telling a (pretend) patient that they had cancer was more stressful for a doctor than concealing the diagnosis. Doctors who don’t tell the truth, they suggest, may be doing so to keep control of the situation and avoid their and their patients’ emotional reactions.
The stress of having ‘bad news’ conversations can lead some doctors to put them off, or to deliver news in a less-than-optimal way, says Dr Laura-Jane Smith, a respiratory registrar in training who works in London.
Finding the right time and place to have conversations about things such as progression of disease can be challenging, and patients react in all sorts of ways. “Some people will want to have that conversation when they realise that they’re unwell. Some people will strongly say, ‘I’ve been in hospital before, there’s no way you’re sending me to [intensive care],” says Smith. Some just don’t want to know.
There’s also the danger of shooting the messenger. Katherine Sleeman, medical doctor and lecturer at King’s College London’s Cicely Saunders Institute, quotes froma study that found that patients perceived doctors as better communicators when they gave a more optimistic view of palliative (non-curative) chemotherapy. “It seemed as though you can inform patients that a disease is incurable but at the expense of the relationship with them, which is fascinating,” she says.
The demands that patients and families put on doctors – to find a balance between honesty, truth and hope, to be human, yet not too human, to know everything, even the unknowable – add to the stress.
“I think we find it difficult to admit that we don’t know,” says Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care at the University of Cambridge, “because patients come to us, and we look to ourselves to be people who investigate, make decisions, make a diagnosis and have an action plan.”
He thinks that doctors find it quite emotionally difficult to acknowledge uncertainty – something born of not the doctor’s incompetence but more the unpredictability and uncertainty of so much of medicine, particularly the later stages of many diseases. “It is frightening. No one ever enjoys having these sort of conversations,” he says.
It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…”
For my sister, a doctor for eight years, it isn’t so much telling the bad news that stays with her, but the small, seemingly insignificant things that went along with it: noticing a pristine newspaper, unread, on the bedside locker of a patient who had just died, despite attempts at cardiopulmonary resuscitation. Finding a cheque waiting to be paid in in the wallet of a man who’d had a fatal accident.
These things – the physical manifestations of the nearly-done, not-done, never-to-be-done – seem to resonate. Unopened birthday presents, cancelled holidays, unworn clothes: all symbols of a life ending prematurely, of potential diminishing, of a future fading. They’re what remain after the practicalities of dealing with a patient and their relatives are long forgotten.
You do what you can to process it, one doctor says. Review what has happened from a medical management point of view: analyse, rationalise, conclude. Did we do everything we could? Would we do anything differently next time? Have a cup of tea, splash your face with cold water, have a cigarette, get on with the next patient.
Then your shift ends.
Self-medication takes a variety of forms. For some doctors, it’s straight to the pub. One (teetotal) doctor’s prescription: “Go home, order a pizza, eat lots of ice cream, sit in front of the TV and watch trash.” Another has a friend who’s also a doctor, and they’ve agreed that either of them can call the other at any time and vent.
Annabel Price, Consultant in Liaison Psychiatry at Addenbrooke’s Hospital, Cambridge, says that some doctors are more vulnerable to being affected emotionally by breaking bad news than others. This may be because they are struggling with bereavement or mental health issues in their own lives. Or it may happen if there’s a patient or medical case that they relate to particularly closely.
Doctors need to be resilient, but so do the organisations that they work in. “You would hope that if a situation is very difficult for an individual… the team then would help them to manage it, either by allowing them to step back or by providing them with extra support to be able to do that,” says Price.
“I would be very optimistic if I said that that works 100 per cent well every time and that all teams function in that way, but that’s the ideal that I think we should be working to: recognising that doctors are people, just as much people as our patients are, fallible humans who have our strengths and weaknesses, and weak points and struggles, just like anybody else.”
Dedicated services do exist for doctors to get help with their mental health, for example, but are those in need willing or able to find and use them?
One paper, advising junior doctors on how to look after their mental health, identifies three challenges for doctors seeking medical help. The first is stigma, including the fear that seeking help will lead to their fitness to practice medicine being challenged. The second is the idea that doctors can feel that they are somehow “letting the side down” if they need time off. The last is barriers to care. “Doctors do not make good patients,” the authors write. “Typically they do not follow their own health care advice, they self diagnose and self medicate, and they present late after ‘corridor consultations’. Once unwell, doctors are often reluctant to consult a general practitioner (even if registered) or to take time off work.”
Moreover, healthcare systems are far from perfect. Resources – including the time, space and supportive colleagues conducive to productive, healthy working lives – are often limited.
I asked Twitter if doctors need, and can get, support when breaking bad news. An Australian doctor summed it up: “Can’t even get time at work to go to the toilet while working in [the emergency department], let alone support when breaking bad news”.
When you are giving bad news about a life-limiting illness, many patients and their families want to know all they can about the condition: treatments, cures and how long patients survive. But the data aren’t always available. Studies are often small, or dated, or in populations of patients so different that findings are hard to extrapolate to the patient sitting in front of you. Everybody and every body is different – so certainty can be in short supply, at the very time when people want it most.
“How long have I got?” is an especially dreaded question. No clinician I speak to says that they give patients actual numbers, often preferring to talk about whether it is a matter of years, months, weeks or days. This is because prognostication – judging the course of a disease or condition – is notoriously hard. While there are ways to assess imminent death in, for example, a patient with terminal cancer, it can be extremely difficult to estimate how long a patient with frailty, dementia or a chronic lung condition will live.
Research shows that doctors tend to overestimate the survival of terminally ill patients, predicting them to survive more than five times as long as they end up doing.
Stephen Barclay never gives numbers to patients asking about survival. He reinforces this practice to his medical students: “I teach the students very firmly not to give numbers because often the information isn’t there,” he says. “And if the information is there, it’s average survival and by definition of an average, 50 per cent of patients live longer and 50 per cent live shorter.”
Giving people a ‘sell-by’ date is not only virtually impossible but can be harmful. “I’ve certainly had a number of patients who have been told, ‘you’ve got six months’, and when six months comes they assume they’re going to die today and that can be really difficult if they’re clearly living longer,” Barclay says. Conversely, if things are clearly moving on a lot more quickly then having a particular date in mind can encourage people to have unrealistic hope.
Laura-Jane Smith agrees that you have to choose your words carefully. “What I have realised from having spoken to patients is that they never forget that conversation, and actually quite often they don’t forget the specific words that you use,” she says.
“You fall into the trap of wanting to dress it up, and wanting not to use words like ‘cancer’ and ‘incurable’ and ‘life-threatening’,” she says. “The more that I do it, the more I try and find ways to say things as clearly as possible without being blunt and I think that’s much more effective.”
Individual words matter. Professor Elena Semino and colleagues at Lancaster University have been conducting a study of how certain kinds of language are used in communication about the end of life. They’ve created a set of over 1.5 million words, collected from interviews and online forums, where patients, carers or healthcare professionals meet to talk with their peers.
Violence or war metaphors (“battling my disease”, “keep up the fight!”) can be disempowering or disheartening for people with cancer, potentially demanding constant effort or implying that a turn for the worse is a personal failure. But in other contexts, they can empower people, helping someone express determination or solidarity, or bringing a sense of meaning, pride and identity.
“You don’t need to be a linguist to realise what metaphors a patient’s using,” says Semino. Doctors should ask: are those metaphors working for the patient at that point? Are they helpful, giving them a sense of meaning, identity, purpose? Or are they increasing anxiety?
While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.
Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.
“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”
While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.
Barclay cautions that the urge for so-called “professional tidiness” – getting these end-of-life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.
For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.
But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.
Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.
“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”
Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.
Though my Dad’s terminal diagnosis came nearly 21 years ago, my mum remembers his reaction clearly. “Dad turned to me and said, ‘Well, I’ve had a good life, a very happy life’.” He was reluctant to have the operation that might prolong – but not save – his life.
I remember him coming home from the hospital soon after, to rest before the operation. We’d bought him an apple turnover, his favourite cake, but it remained uneaten. Dad was propped up in bed, writing a list of things to do. He phoned a neighbour and invited him to take the tools he wanted from our garage. He read a letter an old friend posted through the door, triggering the only tears my mum remembers.
A couple of days later, earlier than planned, he was taken back to hospital. He didn’t come home again. But the short time that he lived knowing he was terminally ill gave him the chance to say goodbye. And us the same.
In a poll of 600 caregivers, 87% of respondents said their top concerns were Medicare and Medicaid, health care reform, and the economy. This comes as no surprise, since caregivers are one of the largest underfunded, under-supported, and unrecognized groups in America. Even with a population of 65 million, family caregivers are barely addressed in the political arena. According to Margo E. Schreiber, former director of the Illinois Department on Aging, this is because caregivers most likely aren’t active advocates– they are so immersed in their day-to-day responsibilities that they forget they can have enormous political clout. Suzanne Mintz, co-founder of the National Family Caregivers Association, believes many family caregivers don’t connect their circumstances to a larger societal issue.
However, that doesn’t mean the family caregiver isn’t a force to be reckoned with, politically speaking. The hardest-working and successful caregiver advocates were formally caregivers themselves. In addition, nearly half of Americans who vote at election time are over the age of 50, many of them already involved in caring for another and aware of the issues the population faces. Often legislators and politicians are witnesses or participants in care for a loved one.
Eighty percent of long-term care in this country is provided by a family member, saving the country billions of dollars in healthcare costs. Our country would collapse financially without family caregivers.
Since family caregivers are serving the community, that community should ensure that caregivers have jobs when they are ready to return to work, health and disability insurance throughout their time of service, the ability to save money for retirement, and approval and collegiality from their community. – Joanne Lynn, Sick to Death and Not Going to Take it Anymore!
Imagine if 65 million caregivers created their own political platform, like they did in Australia? The needs of family caregivers aren’t specific to that demographic– most of our nation faces severe economic insecurity and lacks the resources to provide for the future generation. Medicare is facing insolvency. Caregivers, as a unified force, have a tremendous influence– it’s time we leverage it.