For more information about the author, click to view their website: www.granehospice.com
Caregiver Stress Awareness in Hospice Care
By: Joelle
Jean, FNP
Caring for a loved one who is
terminally ill and on hospice is emotionally and physically taxing. In 2015, an
estimated 39.8 million caregivers provided unpaid care to an adult with a
disability or illness. The estimated value of the service supplied by caregivers
is up to $470 billion since
2013.
Caregivers may deny help from
others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers report not
being asked what they need to care for themselves. Caregivers can work up to
8.3 hours per day or 66 hours per week during
their loved ones’ last days of life. Often, this is in addition to working a
full-time job and caring for their own immediate family.
Caregivers are at risk for
depression, severe fatigue, or burnout, or even health issues such as
hypertension, stroke, obesity, or weight loss due to stress.
What is a caregiver?
A caregiver, also known as an
informal caregiver, is an unpaid individual or group of individuals who provide
care to a loved one. Caregivers can be a spouse, family members, partner,
friend, neighbor, or combination of these individuals.
A caregiver assists their
loved ones with activities of daily living which include:
Bathing
Dressing
Eating
Toileting
Shopping
Housekeeping
Transportation
Medical tasks such as giving medications, changing wound
dressings, and managing pain
A caregiver can also play a
significant role in coordinating care for their loved ones. Many are appointed
power of attorney or the primary decision maker for their loved ones, managing
finances, property, and most suitable medical care for the individual.
What causes caregiver stress or burnout?
There is no clear definition
of caregiver stress. The Merriam-Webster dictionary defines stress as “a
physical, chemical, or emotional factor that causes bodily or mental tension
and may be a factor in disease causation.” Burnout can be a response to stress,
defined as extreme emotional exhaustion. According to stress.org,
stages of burnout are:
Enthusiasm
Stagnation
Frustration
Apathy or loss of interest
A caregiver with stress or
burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained,
tiredness, detachment from the person they are caring for, and a reduced sense
of accomplishment.
Who is most affected by caregiver stress?
Caregiver stress affects the
person or people directly caring for their loved one. Stress can also affect
caregivers in different ways. For example, one caregiver may find specific
tasks stressful or overwhelming while another caregiver may find the task
relaxing and rewarding.
What are the signs and symptoms of caregiver stress?
Often, caregivers are not
aware of their stress or feeling of burnout. Signs and symptoms of caregiver
stress can be subtle or obvious. It is important to identify caregiver stress
so it can be eased.
Anxiety
Anxiety is a stress response,
activating the fight or flight response
that happens chemically in the brain. Physically, anxiety can be described as:
Increased heart rate
Feelings of doom or hopelessness
Stomach pain and or spasms
Headache
Sweating
Heavy breathing
Feeling weak or tired
Worry
Fatigue
Caregivers suffering from
stress may not realize they are fatigued. Fatigue is the body’s response to
burnout and can be physical, emotional, or psychological.
Weight changes
Stress can cause weight
changes and affect eating patterns. Weight change can occur when dealing with
caregiver stress. Rapid weight gain or unexplained weight loss is a warning
sign of caregiver stress and should be addressed appropriately.
Irritability
Caregivers may become easily
annoyed or short-tempered with loved ones, family members, or friends. Feeling
irritable may be a warning sign of caregiver stress.
Feelings of being overwhelmed
Feeling overwhelmed or
anxious is normal. Caregivers may become overwhelmed with the amount of care
needed to provide to their loved ones. Trouble concentrating, changes in sleep
patterns, and changes in eating habits may occur.
Depression
Losing interest in activities
can be a sign of depression due to the demanding responsibilities of
caregiving. Signs of depression include:
Little interest or pleasure in doing things
Feeling down or hopeless
Change in sleep patterns
Fatigue and tiredness
Thoughts of death or suicide
Potential health risks as a result of caregiver stress
Chronic stress (or stress
lasting for more than six weeks) can have lasting health problems. Caregivers
exhibiting signs and symptoms of stress and burnout have a higher chance of
developing health risks.
High blood pressure
Caregivers can suffer from
high blood pressure due to the stress of caring for a loved one in hospice. If
caregivers have already been diagnosed with high blood pressure, stress can
make the disease worse. Uncontrolled high blood pressure puts caregivers at
higher risk for:
Stroke
Atherosclerosis or disease of the arteries
Heart attack
Organ damage
Weakened immune system
The immune system is in place
to protect the body from illness and disease. Stress can cause a weakened
immune system. With a weakened immune system, caregivers can become sick or
develop chronic illnesses such as:
Inflammation throughout the body
Increase in fat in the blood and body
Chronic pain
Frequent colds and infections
Short term memory loss
Studies have shown that a
symptom of chronic stress is the shrinking of the brain. Shrinking
of the brain causes short-term memory loss. Short term memory loss affects
learning, judgement, and memory process.
Headaches and body pains
Stress can cause headaches
and body pains. On a hormonal level, the increase of cortisol causes headaches
even at rest. The physical nature of caring for a loved one on hospice-
lifting, standing, walking, and rotating- can cause severe body pain or injury.
How to relieve or prevent caregiver stress and burnout
Self-care is imperative for caregivers caring
for their loved ones in hospice. Self-care means caring for yourself, so you
can improve your health to care for others.
Exercise regularly
Finding the time and the
energy to exercise might sound difficult. However, even carving out 30 minutes
a day has positive effects on your health. Exercising whether it is running,
walking, swimming, or doing yoga will lower blood pressure, increase energy,
and improve mood.
Asking and accepting help from others
Accepting help can be
difficult for some caregivers. It is important to ask and accept help so that
you are available for your loved one mentally and physically.
Under most insurances and
Medicare, respite care is available to relieve the burden of caregiver stress.
Respite care will give short term caregiver relief to those who are in need.
Eat and sleep well
Eating and sleeping well are
fundamental in protecting your physical and mental health. A well-balanced meal
of fruits, vegetables, and plant-based foods is important for physical and
mental well-being. Adding vitamins such as a multivitamin, vitamin D, or
vitamin B-12 can also help improve your mood and energy.
Having a good night’s sleep
has many health benefits. Feeling well-rested and energized will only benefit
you, as the caregiver, and your loved one. Improved memory, mood, and overall
well-being are all benefits of quality sleep.
Seek out support groups
Support groups add immense
value to caregivers who are caring for loved ones in hospice. Joining support
groups reassures caregivers that they aren’t alone. Support groups:
Allow you to talk about your feelings
Help you realize others are going through the same situation
Reduces stress and depression
Teaches coping skills and ways to divert stress
Maintain personal relationships
Maintaining personal
relationships is as important as joining support groups. Meeting up with
friends or family members allows you to relax. It also allows you to take time
for yourself and time away from your loved one.
Awareness of caregivers’ stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.
Marita Ellers* was lucky. Her parents lived three blocks away in Greater Detroit. She enjoyed a close relationship with them and could tend to their needs as they continued to age, which was well into their 90s. They both passed away when Marita entered her 60s as she helped with their hospice care needs. But having never married, and with only a chronically ill brother and sister-in-law living in Seattle, reality set in when Marita needed major surgery which would incapacitate her for weeks or possibly months.Unlike her parents who had her to depend on, Marita had no one. Of course there was her circle of friends, but as it turned out most were married. Shed never thought about cultivating relationships with single people; it had just never occurred to her. Her married friends had busy lives of their own with spouses, adult children, and grandchildren, and the last thing Marita wanted to do was impose on them during a long recuperation.Ellers is part of a growing trend of elder orphans and solo agers: individuals ages 55-plus who live alone without a spouse, partner, children, or other family around at all, or if they are around, they cannot be relied upon sometimes due to family dynamics. In short, these individuals have no real support networkno safety net. In a survey of 500 elder orphans, nearly 70 percent hadnt identified someone to help them with health problems, while 35 percent had no friends or family to begin with who could help.Studies show the demographics numbers are on the rise and the group is so ubiquitous, it even has its own Facebook page with nearly 10,000 members to provide support through shared experiences. If you fall into this category, what are some of the steps you can take to prepare for successful aging?Planning to Live as a Solo AgerThe best kind of plan for almost anything is, naturally, to plan. If we dont do that, we may leave critical decisions to disconnected relatives, acquaintances, or ultimately overburdened, court-appointed strangers who have no idea what we need and want. Considering herself staunchly independent, Maritas lack of planning was twofold: she was in denial about her own aging process, and at the same time she figured the experience of seeing her parents through lifes end stages would enable her to apply all that knowledge to herself if the time came.While in some respects her experience puts her a step ahead of many of her contemporaries, her reasoning does not allow for what can happen when her mobility is compromised, cognitive capacity is diminished, or myriad other conditions where she may need more help than she can give to herself. Maritas upcoming surgery was a wake-up call, making her acutely aware of what steps she should have taken and scrambling to put as many as possible in place.Understand the Levels Between Senior Independence and Assisted LivingYesface things and research them, laying them out as early and comprehensively as you can. Avoidance will only get you so far. The antidote for anxiety, feeling isolated, and depressionthree issues elder orphans and solo agers have expressed are problems for themis action. Goethe said, Be bold, and mighty forces will come to your aid. Keren Brown Wilson, known as the pioneer of assisted living, says there are many steps and levels between independence and dependence. She recommends interdependence: a mutual reliance on one another on the path to better aging.Think about trained caregivers for when you may need help with activities of daily living (ADLs) and a fiduciary or senior care advisor for your financial needs including Long-Term Care insurance. Go out and cultivate friendships if you dont already have them with other elder orphans or solo agers. People in similar situations may have more time to give you if the need arises, as you can give to them.Build a Senior Support Network That WorksIf you dont know how to go about something, network with people in your community. This may include professionals and others you know at work, where you volunteer, doctors, dentists, lawyers, librarians, teachers, salon and store owners, as well as neighbors. We all age and ahead of that most of us have aging parents or had parents who got up in years. That kind of personal experience is invaluable in terms of recommending others they trust who can help you put things in order now and down the line.Communities for Successful AgingGet Involved!With the rising tide of graying Baby Boomers, city and business leaders and policymakers need to embrace the task of developing solutions for better aging. This needs to be done on a nationwide basis. Elder orphans and solo agers are affected at even deeper levels than their counterparts who are surrounded by family and friends in a position to help. In some locations, there are more resources already in place in the realm of affordable transportation, technology training, respite care, senior advocacy, nutrition oversight, and home health care. But we have a long way to go.If you are an elder orphan or solo ager looking for involvement in your own community, turning your attention to the cause can bring awareness and even expedite results from which everyone can benefit.(* Name has been changed for purposes of anonymity.)
Bring up the topic of decluttering in a conversation with older adults and youll get a variety of responses. For some, getting rid of things is easy; they may even respond with something like I love throwing things away! On the other hand, you have people who cant seem to throw anything away. You can actually see them shift into a state of panic at the thought of discarding their belongings. The majority fall somewhere in the middle of the spectrum, being able to confidently identify what is clearly trash, yet feeling certain about items theyre compelled to keep.Why Is It So Hard to Let Go?Clutter is common in the lives of so many. There is only one factor that makes the clutter of an older adult unique: time. The older you are, the longer youve had to accumulate things. As time passes, you attach meaning to those things which provoke certain emotions and these feelings may develop into a physical form of nostalgia. Many items can impact us emotionally, something renowned organizing and decluttering expert Marie Kondo calls objects that speak to the heart. These evoke a flood of memories and sentiment, something that provides even more significance and comfort as we age.Though it may be hard to discard possessions, holding onto too muchespecially as a senior with increasing needs for a safe environmentcan have dangerous results. What we accumulate can present challenges throughout the living environment. Clutter resulting from stacks of mail, paperwork, packages, books, magazines, holiday dcor, knickknacks, mementos, and more on and around surfaces and furniture can also contribute to feelings of confusion and overwhelm, increasing cortisol (the stress hormone) levels. Studies show clutter can also contribute to increasing dissatisfaction with life. Overall, these issues are something an older adultpossibly with increasing cognitive issuesneeds less, not more, of.Risks of Clutter and Life-Threatening InjuriesStatistics tell us that each year, 36 million Americans, or one in four adults over age 65, experience a fall. That number climbs every five years. The U.S. Centers for Disease Control and Prevention (CDC) reports falls are the leading cause of injury-related deaths for people over age 65.Increased risk of fallingWhile some falls are caused by physical decline, including balance and mobility issues, clutter in ones surroundings can raise the odds of an accident no matter what the seniors condition. It can present hazards to navigate, resulting in tripping and breaking a leg, arm, hip, neck, ribs, requiring stitches, sustaining head trauma, or suffering internal injuries.Confusion over medicationsCluttered medicine cabinets can be life-threatening for seniors. Decluttering your medicine cabinet is critical, especially for those with decreased vision. If a medicine cabinet is disorganized, it can be easy to confuse medicines ones life is dependent on. Throw away expired medications and keep them organized to reduce confusion.Limited mobilityExcess furniture can lead to many challenges for seniors with limited mobility. Not only can they have more trouble getting around on a daily basis, but this trouble can be serious if disaster strikes and they cant get through certain spaces.If doorways are blocked, or even partially blocked, first responders may have trouble entering the premises or getting into specific rooms. Also, if caregivers are working in the home, its especially important that they have a safe, adequate berth in which to maneuver and support the client. With challenges mounting as seniors age, the last thing a caregiver needs to worry about is steering a client around piles of personal belongings or oversized furniture too big for a space, or pieces of furniture placed too close together, or improperly stored equipment including walkers, wheelchairs, oxygen concentrators, shower chairs, and more.Health Benefits of DeclutteringThe benefits of having an organized space extend far beyond general safety conditions. Mental health experts and geriatric social workers concur that aging seniors with less clutter in their everyday lives enjoy many health benefits.Improved concentrationOne of the most noticeable differences you may experience after you declutter your living area is an improvement in your ability to concentrate. Although you may not realize it, the items in your space are constantly competing for your attention. When you are in a cluttered environment, you are essentially forcing your brain to multitask by giving it extra stimuli to filter through as you try to focus on your task at hand. As soon as you declutter your space, you will likely notice an immediate boost in your productivity.Better sleepMany older adults experience a surge in sleep disturbances as they age.Another great reason for seniors to declutter their space is that it can positively impact the quantity and quality of their sleep. You are probably familiar with the feeling you have when you get into your bed after you just cleaned your room. You feel noticeably more relaxed and ready for bed than the previous days.Interestingly enough, those with more clutter have been shown to have more difficulty not only falling asleep but also staying asleep. Those with clutter often have more sleep disturbances.Reduced stressAnother good reason to get rid of your clutter is to reduce your overall level of stress. Many studies have shown a negative correlation between those who keep their homes clutter-free and those who reside in well-organized homes. There are many reasons for this.As mentioned, having many items in your space places additional work on your brain as you force it to constantly work at filtering out irrelevant information so you can focus on whats important.There has been a study conducted that identified a relationship between homeowners and their density of household objects. They found that the higher the density of household objects, the higher their levels of cortisol tested thus indicating higher stress levels.Improved positivityWalking into a room where there is a lot of clutter can do more than add to your stress, it can also cause you to feel like you dont have your life together.If you think about it, looking at a pile of papers can easily remind you of all the things you havent completed yet, directing your attention away from everything you have accomplished. You know the phrase, out of sight out of mind. Well, that is certainly the case with a pile of papers, along with all other clutter.Using The Four Box Method for DeclutteringOne of the simplest strategies for decluttering your home is one referred to as the four box method. This method works great because it forces you to make decisions about everything you own.To use this method, you are simply going to take four boxes (trash bags can work too) and label them as one of the following.Keep/put awayDonate/sellTossStorageOne room at a time, you will use these boxes to help you categorize your belongings.For example, lets say you have made the decision to organize your home. And lets say you decided to start in your living room. You figure this is not only where you spend most of your waking hours, but it is also where you entertain your guests.When you are ready to begin, you will bring your four labeled boxes into the living room. You will then go through each item in the room and make a decision as to whether you need to keep it, donate it, throw it away, or store it.The Keep/Put Away BoxThe keep/put away box is designated for items you want to keep. Ideally, this should be the smallest box. If the item you want to keep belongs in the room you are working with, you are going immediately put it away. If the item you want to keep belongs in another room, you are going to place it in the box. This is going to help ensure you have enough space for all the items you want to keep.For example, there might be piles of magazines and miscellaneous papers on the table in your living room. In this case, you might want to sort through the pile. You may decide to keep the current magazines on the table and place the important papers in the keep box to be filed away. Any papers deemed unimportant can be placed in the trash box.The Donate/Sell BoxThe donate/sell box is going to be designated for items you want to donate or sell. These items should be in good condition. Ideally, they should be items you no longer find valuable but that may be valuable for someone else.You might have furniture in your living room taking up space. You might want to consider selling or donating it. You can even give it to someone in your family who would make better use of it.Also, take a look at unnecessary knick-knacks.The Toss BoxThe toss box is for items you decide to throw away. This should be anything you dont want any more that is unworthy of selling or donating. Think about damaged items or broken items you intended to fix but never got around to.The Storage BoxRefrain from thinking of storage as a place for items you dont know what to do with, but think of it as items you dont currently need.Seasonal items are a great example. Think about seasonal decor or holiday-specific decorations. These are items you dont need out at all times, only during the particular season or holiday time. Place the out of season items in the storage box.Clothing may be another item you may want to store. If you live in a seasonal area, you will have little to no use for a winter coat in the summer. This would be something you want to keep for the cooler months, but you dont need to have it handy in the summer. Place it in your seasonal box.Its Okay to Ask for HelpAt the end of the day, decluttering should be about letting go of the things you have weighing you down for the benefit of your quality of life. Mental health experts confirm, explaining that the process can result in feelings of accomplishment and control for seniors who are aging at home. In short, decluttering has a positive impact on so many levels.Frequently, the most difficult step is simply to start and that being the case, its okay to ask for help. Check with your county aging services department or community senior resource center on the availability of decluttering services. If youd like to learn more about how a trained caregiver can support a senior loved one to live safely at home, feel free to contact one of our friendly and resourceful Amada Senior Care advisors. Click here to find an Amada Senior Care location near you.
Until 100 years ago, many people never traveled more than 10 miles from the home in which they were born or lived in when they got married, which was usually down the street or the next farm over. Families remained grouped together for many reasons, including having emigrated from a foreign country and starting a new life together. There was strength in numbers: both economic advantages and in perpetuating long-held traditions that would tie loved ones together in the face of new challenges. Where seniors were concerned, the expectation that younger family members would always care for them was impliedand something not all that difficult if people were living within steps of one another.Clearly things have changed, and adult children can be hundreds and thousands of miles away from aging parents. This can make it challenging to determine changes in physical, mental and emotional health, often leading to stress and guilt. While long-distance caregiving isnt always the answer, there are things families can do to help ensure their senior loved ones needs are monitored and met.1 Hold a Family Meeting to Plan In-Home Care for a Senior Loved OneFirst, organizationally, if there are multiple adult children and other family members that can provide long-distance care, have a family meetingin person or video chatto decide what everyones strengths and skillsets are and what their availability is. Tantamount to that, realistically evaluate how much each can do, knowing that a trusted neighbor or someone else outside the family and local to the senior may need to be hired to fill in any gaps.If a family member is better at managing finances, for example, s/he should assume that responsibility when the time comes, always with written permission. A Merrill Lynch study revealed about 92 percent of family caregivers are managing their loved ones finances, including monitoring and paying bills from bank accounts, handling insurance claims, filing taxes, and overseeing investments.2 Communicate with Your Aging Loved One Every DayIts important to check in with an aging parent every day, even several times a day depending on the state of health, particularly if that individual lives alone. If the senior is adept at technology, FaceTime or other forms of video chat are always preferable as visuals are a useful tool in gauging changes. Today there are a variety of simpler forms of senior-friendly video call apps and devices available. These include but are not limited to the Jitterbug Smart3, GrandPad, and CallGenie (British-based product now available in the U.S.).3 Connect Regularly with Your Beloved Seniors Healthcare ProvidersSchedule regular calls with physicians, visiting nurses, and/or others for up-to-date information about you loved ones health and evolving needs. If an in-home senior care agency is involved, consistent updates should be part of the protocol.4 Set Up a Personal Emergency Response System to Maintain a Seniors IndependenceSometimes dubbed high-tech guardian angels, personal emergency response systems (PERS) support safe and independent living. At the touch of a button (or in some cases by voice activation) an immediate notification is sent to first responders when a fall or other medical emergency is detected. PERS devices can be worn by the senior as a pendant, or a unit can be set up strategically inside the home to provide 24/7 monitoring services.5 Obtain a Smart Pill Dispenser for Medication ManagementAs people age, memory can be affected with issues that include failure to take medication or not recalling if a dose was taken or not. Multiple medications are also a byproduct of aging and facing an array of bottles every day can be confusing and disorienting for seniors. A user-friendly solution lies in medication management with automatic pill dispensers, as these smart devices for healthcare can do so much more than hold apportioned pills in a little plastic box. Smart pill devices organize medications and ensure the correct dose is dispensed at the right time, and some can also notify the caregiver if a dose is missed.6 Explore Alternative Senior Living ArrangementsIs an aging parent amenable to moving closer to adult children? Independent living and assisted living fall under the broad banner of senior living communities and can make the stress that accompanies long-distance caregiving a thing of the past. Many seniors and their families are unsure where to start their search for assisted living and other senior housing options.7 Plan More Frequent Visits to Keep Tabs on Your Elderly Loved Ones WelfareWork, raising families, community responsibilities, and everything else can make life overwhelming today. But if a parent or grandparent is aging, theres no better way to monitor needs than to visit as often as possibleeven for a long weekend now and then. If there are multiple adult siblings or young adult grandchildren, spreading the visits out among family members can ease the burden of constant traveling and help ensure changes in health and mobility do not go undetected.Besides, the opportunity to spend time with mom or dad in their sunset years is precious, and something you will never have again. In your effort to monitor things and provide support, which no one argues can be time consuming and stressful, make sure to slow down and listen. As the saying goes, When a senior dies, a library closes.8 Ask for Information and Guidance from a Trusted Senior ResourceKnow that an Amada Senior Care advisor has the expertise and knowledge to assist without obligation as families with aging loves ones navigate their senior care journey. Click HERE to find an Amada office near you or call (866) 752-1961.