The Ultimate Guide to Avoiding Caregiver Burnout
More than 60 million Americans currently struggle with some level of disability according to a 2018 report from the Centers for Disease Control and Prevention. Based on a collaborative writeup from the National Alliance for Caregiving and AARP, roughly 43 million friends and loved ones provide unpaid care for those experiencing difficulties with everyday living.
On last count, the economic value of these voluntary acts of love and kindness would amount to more than $450 billion per year based on standard caregiver income, almost equaling the annual sales of Walmart. While CDPAP programs may help relieve the financial burdens of caregiving, it does not address the emotional needs of a caregiver.
Therefore, we have put this guide together to help you avoid caregiver burnout and navigate the stresses of caregiving with a greater sense of calm.
Caregiver Fatigue Timeline
Before we can give you tips for avoiding caregiver burnout, It is important that you are aware of the signs. The Northwest Regional Council put together a great timeline on caregiver fatigue. Use this timeline to recognize if you are starting to suffer from caregiver burnout:
• Recognizes (and perhaps struggles with) the differences between providing long-term care (vs. acute care)
• Anxious to provide best possible care
• Manages the house, garden, car, shopping, bill paying, and cooking
• Attends to family relations
• “Keeps up appearances”
• Helps person with dementia through social situations
• Remains optimistic, caring, supportive
• Operates as “superwoman” or “superman”
• Attends to personal care
• If working, spends “vacation” time for caregiving
At 21 Months
• Begins to take medication, usually for sleep/headaches
• It becomes harder and harder to keep on top of things. The loved-one’s personal care needs intensify, adding new duties (for example trips to the doctor, medication management, etc.)
• Some help from family still available
• Takes more time off from work
• Emotional and physical resources drained
• Less and less personal contact with own doctor, dentist, minister, friends
• Experiences feelings of powerlessness
• Caregiving consumes both day and night
• Outside help dwindles away
• If working, not able to attend training foradvancement and/or skips promotions
At 32 Months
• Stress becomes harder to conceal
• Caregiver begins taking tranquilizers
• Begins using medication for musculoskeletal pain
• Sleep is continually disturbed
• Caregiver becomes irritable
• Less and less contact with others
• If working, may scale back further on work hours or responsibilities
By 38 Months
• Caregiver feels unhealthy
• Finds it hard to get up
• Never feels rested
• May have hypertension/colitis
• Has symptoms of chronic fatigue
• Caregiver loses the will to take care of him/herself
• Is unable to manage the household
• Rarely socializes with others
• Feels helpless, guilty, a failure
After 50 Months
• Chronic state of fatigue
• Caregiver is in a state of “unwellness”
• Becomes isolated
• Is unwilling or unable to access resources for information or help
Now that you understand the general timeline of caregiver burnout, here are some tips to help you avoid it.
Understanding Both Ends of the Caregiving Spectrum
Being a caregiver for someone in need has ample benefits for everyone involved. Aging and disabled individuals receiving care are often able to remain in their own homes longer than those without assistance. They, along with their families and loved ones, have the reassurance of knowing vital and sensitive tasks aren’t being turned over to complete strangers.
For many people who need help with everyday activities, simply knowing someone cares enough to help provides a certain level of healing though it may not be evident on the surface.
For those who don’t have the type of insurance coverage necessary to foot the bill for outside care, the financial benefits of friends and loved ones stepping up to the plate are incalculable. At-home attention from trusted sources tends to reduce the risk of abuse and neglect as well.
When it comes to those providing care, informal caregivers as they’re sometimes referred to, tending to a loved one can generate a higher sense of purpose. Doing so may also help boost self-confidence. Without a doubt, it certainly builds strength, character and patience.
Having said all that, downsides do exist, and they can’t be ignored. Caregivers often experience extreme mental and physical fatigue with a wide range of resulting health issues also coming to the surface. They’re more prone to anxiety and depression because of the increased workload placed on them. Financial struggles definitely enter the mix.
Feelings of isolation often come into play for caregivers. Dividing their time among work, caring for a disabled loved one and taking care of their own homes and families leaves little room for socializing. Even taking a quick break is sometimes out of the question.
Far too many informal caregivers succumb to these issues, many without even realizing it until it reaches extreme proportions. This is detrimental on a number of levels, not the least of which are sacrificing their own health for that of their loved ones and forfeiting time and relationships with others along the way. Certain tips and advice passed down by those who’ve been there can help minimize the risks of caregiver burnout while maximizing the rewards.
Knowledge Is Power in Avoiding Caregiver Burnout
When dealing with any type of disability, it’s important to learn all you can about the condition. Conduct online research. Pick up pamphlets at local health departments or clinics. If you know others who’ve had experience with your loved one’s condition, ask questions. Free or low-cost classes may even be available in your community to provide more in-depth information.
Learning all you can about your loved one’s condition will give you a better understanding of the feelings and struggles he or she faces each day. Research can also help you determine which aspects of care are actually necessary and which ones may be a bit of an overkill. Knowing how the disability affects its victims will give you the capacity to offer a higher level of care from virtually every angle and avoid the stress of the unknown.
At the same time, it’ll help you prepare for what’s to come if the condition is progressive. Though finding out worse days and more complicated needs could be on the horizon may not be very reassuring, knowing which physical and behavioral changes might be in store and how to arrange for them in advance is immeasurably valuable. Advancing your knowledge will be beneficial for your loved one, you and anyone else involved in the caretaking process.
Keep a Journal
Regardless of the type of condition in question, keeping a medical journal of your loved one’s behaviors, health issues, setbacks, breakthroughs and other aspects is critical. Be sure to update it every time you visit your loved one: the more details you have, the better off everyone will feel. You’ll be able to pass along pertinent information to medical personnel and others involved in providing care without forgetting any vital specifics.
This may seem like yet another task you don’t have time to deal with, but it’ll be immensely helpful in the long run. From knowing when prescription changes are in order to understanding when it may be necessary to bring in additional aids, this journal will be key in every leg of your loved one’s care. It’ll also give you something to look back on along the way as a reminder of just how much you’re doing to help should your confidence falter.
Communicate with Medical Personnel About Your Loved One
Don’t be afraid to ask questions or bring up concerns when accompanying your loved one to medical appointments. Even the most trivial-seeming aspects could ultimately be imperative to the caregiving of your loved one. If doctors or nurses dismiss your thoughts or skirt around the subject, be persistent. Keep asking until you get an answer.
No detail is too small or uncomfortable to discuss. Perhaps you’re taking care of your mother who has Alzheimer’s and she suddenly begins hiding jewelry. This may appear relatively harmless, but it could be an indication of the disease’s progression.
Say you’re looking after an adult brother with Down Syndrome. You settle him into the restroom and walk away to give him some privacy only to come back a few moments later and find an undesirable substance smeared all over him, the wall and the floor. His physician may not be able to prevent this from happening in the future, but he or she may be able to direct you to someone who can help.
In both cases and countless others, the previously mentioned journal could provide valuable surrounding information as well. If kept up to date, it may help reveal any inadvertent actions potentially causing negative scenarios to take place. At the very least, it’ll give other caretakers a heads up while they’re on duty.
Keep in mind, communication applies to your own doctor visits as well. If you’re experiencing any unusual symptoms whatsoever, don’t hesitate to bring them up to your physician. Caretakers are at greater risk of communicable illnesses, depression and a wide range of other health issues, so keeping your doctors in the loop is vital.
Put on a Happy Face
You’re exhausted, frustrated and possibly experiencing financial distress because of your responsibilities as a caretaker. You’re stretched far too thin. Keeping one household going is overwhelming for most people, and you’re essentially holding down two. On top of all that, bad days to beat the worst so far are going to happen.
Some days, even rolling out of bed is a struggle much less being happy to face a draining day. Still, powering through with a smile on your face can be cathartic. Some studies show the act of smiling in itself can help improve disposition, and it might even give your loved one a much-needed emotional boost.
Caretakers past and present constantly stress the importance of a sense of humor, no matter the difficulties you’re facing. No one is making fun of any type of condition or disability, but when tending to a loved one, you can certainly expect the unexpected. Depending on the circumstances, you might walk in on your loved one using an armchair as a toilet. You may get slapped with a hardcover Bible. Waves of physical strength or strings of profanity can surface in even the mildest-mannered person.
Countless caretakers have been attacked, both physically and verbally, by loved ones. Rocky situations will develop. Smile, laugh and do your best to stay positive even on the worst of days. Despite being such a simple act, this alone can be extremely beneficial.
Remember Your Loved One’s Struggles
Whether your loved one is extremely vocal or trapped inside his or her own mind, it’s essential to remember a couple key points. First off, no one chooses to be disabled. Most people who need caretakers would gladly do everything possible to take care of themselves if they could. Some even feel that the need for assistance is degrading or humiliating. As a caregiver, show love and kindness in all you do no matter how difficult it may be at any given moment.
Secondly, not everyone who needs help actually wants it. Looking back on a time when you were strong, vital and perfectly capable of taking care of yourself and everyone else in your life is bound to bring up feelings of anger, resentment and helplessness when you find yourself at someone else’s mercy. All those negative emotions are often directed at caretakers.
If you’re in a situation like this, try to keep in mind your loved one isn’t angry at you. He or she is simply projecting frustration at the only other person available. It just happens to be you. Smile, be patient and understanding, and do your best to take it all in stride. Better days lie ahead.
Organization Is Your Friend
Organization is essential when it comes to tending to a loved one and avoiding caregiver burnout. This is true for you as a caretaker as well as the one under your care.
Those first few days, or even weeks, are going to be haphazard, chaotic and uncertain, but you’ll eventually be able to establish a working routine. It’ll make things go more smoothly and quickly while keeping stress on your loved one at a relative minimum.
In addition to the in-home caretaking routine, use lists to help keep matters more structured. Keep a running grocery list and add items to it as the need arises. Make a list of medications as well as their descriptions, dosages and times just in case something unexpected happens, like the labels getting peeled off or different pills being consolidated into a single bottle or poured out into a big pile while you’re away. These things do happen.
Create a calendar to help keep track of appointments for the loved one in your charge as well as yourself and your children. Set alarms on your phone to remind you a day or two in advance of these appointments so you can make prior arrangements. Also set up reminders an hour or so ahead of time to keep you on schedule.
Planning out grocery shopping trips and other tasks on your calendar will help simplify things as well. This may seem a bit excessive, but it goes a long way toward preventing the typical overload so many caretakers experience. Anything you can do to minimize stress and confusion is a step in the right direction. It won’t all come together immediately, but over time, everything will begin to fall into place.
Use Technology to Your Advantage
For a number of caretakers as well as those in their charge, not being able to be on site constantly is a significant concern. How can you continually help someone if you’re not within eye, ear, and arm’s reach all the time? As fate would have it, technology can bridge this gap in several ways.
Automated dispensers are available to help with the medication administration. Simply load medications into the device, program the dosage schedule and walk away with a little extra peace of mind.
These dispensers offer a wide range of features, but some are designed to deal with complex schedules requiring multiple doses at various times. Loved ones can’t tamper with the preset dispensing instructions, so overdosing isn’t a concern. They can also be programmed to notify caregivers when doses are missed.
Technology now allowing people to turn off their lights and lock their doors via a smartphone can also be used to keep a close watch over aging or disabled loved ones from afar. You can continually make sure their electricity and heat are working properly, watch for signs of problems and even know if they’ve inadvertently unplugged the fridge under the right circumstances.
Consider having cameras installed in the loved one’s home to truly keep a constant eye on them if need be. Of course, the value of an emergency alert pendant with fall detection can’t be overlooked.
Some of these devices have the capacity to notify caretakers and other family members if a loved one has requested assistance or emergency personnel have been dispatched to the scene.
Some of these elements can be a bit expensive, so in-depth surveillance and monitoring doesn’t come without a price. Still, some options are available at low or no cost to those who need them, and insurance may cover at least a portion of the price. If any of these solutions are feasible, don’t hesitate to use them to help keep your loved one safe and make life a little less stressful for you.
Keep Safety in Mind
Falls are among the leading causes of injuries for the elderly and disabled, so reducing the risks is vital to allowing loved ones to remain in their homes as long as possible. Remove area rugs, ottomans and other items known to be trip hazards. Keep drawers and lower-level cabinet doors closed and chairs pushed under tables as much as possible. Tape down torn flooring or have it repaired or replaced.
Create plenty of open space for your loved one to navigate safely around furniture. Take care to secure any furniture that could tip over if someone were to bump into it or try to use it to break a fall. Make sure walkers or wheelchairs are well within reach if they’re part of your loved one’s life.
Try to steer clear of glass tabletops and door panels. Apply padding to sharp corners. Rubber and plastic corner guards are available at virtually any store that sells hardware and home goods; in many cases, these guards can be found in the baby/toddler section of department stores. Install handrails and non-slip mats in tubs and showers, and be sure they’re affixed securely. Portable shower seats may also be a good idea. Keep tubs scrubbed to remove potentially slippery soap, shampoo and conditioner residue.
Fires are likewise common causes of injury and death among those in need of at-home care. Carbon monoxide and smoke detectors should be installed and checked regularly to help reduce this potential danger. Consider using smart versions of these devices if possible so you can connect them to your phone and receive notifications if they detect an issue.
Though your loved one may be capable of cooking his or her own meals, stoves are among the most notorious culprits for burns and full-blown housefires. Keep plenty of microwavable meals on hand and have hot meals delivered to your loved one if it’s an option in his or her area. Also avoid relying on space heaters because they’re both burn and trip hazards. Set water heaters to around 120 degrees Fahrenheit so the water will be warm but not hot enough to cause burns.
If your loved one suffers from dementia or another condition causing impaired cognitive abilities, try to keep medications tucked away safely out of reach to avoid accidental overdose. Keeping cleaning agents under lock and key may also be a good idea. For cognitive and physical impairments, removing sharp knives and the like could be helpful as well.
All those points apply to the loved one you’re caring for, but it’s important to keep your own physical safety in mind as well. First and foremost, take a deep breath and try not to get in a hurry while providing care. Rushing or feeling overwhelmed is a safety hazard all its own, making you more likely to trip and fall or cut or burn yourself during meal prep to name a few dangers.
Get plenty of rest no matter how busy your schedule may be; otherwise, you could be at high risk of falling asleep behind the wheel while traveling to your loved one’s home. You’ve probably heard the phrase, “lift with your legs”. This couldn’t be more relevant for caretakers whether hoisting heavy grocery bags and oxygen tanks or moving loved ones.
Don’t Be Afraid to Ask for Help
Caregiving is often a burden left to a single person for any number of reasons, but that isn’t always so. In many cases, friends and family members are willing to help but just aren’t sure of where to jump in. If you need help, feel free to reach out to others. Tell them what you need, and they may very well be willing and able to accommodate. If you develop caregiver burnout, no one will be better off so let others help where they can.
Remember to look for outside resources as well. Non-emergency transport is available to provide rides to and from medical appointments.
Look for meal delivery services to help cut down on the amount of cooking your loved one will need to do or the number of trips you’ll need to make to his or her home. Some stores are drifting back to the home grocery delivery option as well.
As a general rule of thumb, caretakers should take time for themselves on a regular basis. Doing so isn’t always feasible given hectic schedules and monumental workloads. Give a little thought to adult day care facilities for those much-needed days off even if only once or twice a month.
Though you may feel alone, you’re not by any means. All you have to do is ask around or conduct a little research. Make a list of all the tasks you do for your loved one, and think about which ones could be delegated. Don’t feel guilty about it, either. Once your load has been lightened, you’ll be less stressed and able to provide better care for yourself, your family and the loved one you’re looking after.
Being a caretaker offers numerous rewards, not the least of which are developing a close bond with a loved one and knowing he or she is getting a level of care only you can provide. That being said, it’s not an easy job. Plenty of hurdles crop up along the way.
Ample resources are at your disposal from online support groups and classes to meal delivery and transportation services. Use them to your fullest advantage as well as that of your loved one. Keep safety in mind for the sake of everyone concerned, and do your best to keep track of every detail no matter how trivial it may seem on the surface.
Above all else, remember you’re only human and can only do so much. Some people require very little assistance with everyday living whereas others expect more help than an entire team of caretakers working around the clock could provide. Don’t be afraid to ask for help and, if need be, just say no. Remember, never push yourself to the point where you feel like you are going to burnout.
You’re doing a good job no matter how unprepared or inept you may feel at any given time. Just remember to breathe and keep smiling. Lock yourself away and cry for a few minutes if the need arises. Rest assured, everything will fall into place.