If you ask today’s aging seniors where they want to spend the later stages of their lives, 90% of them likely to tell you, “There’s no place like home.” According to research by AARP, 82% of seniors prefer to continue living in their family homes, even if they need assistance. [i] About 4% said that they’d consider moving to a relative’s home, and less than 10% said they’d move somewhere where someone could provide care for them. The trend towards aging in place creates a higher demand for senior caregiving, which is leading to a new problem—caregiver stress.
The senior caregivers of today are more likely to come from within families. Family caregivers face many challenges in caring for aging seniors. [ii] Many of them are taking care of their own families, working full time, or taking care of their own health concerns.
Balancing so many responsibilities while meeting the care and safety demands of an aging senior creates a level of caregiver stress and burnout that can rise to a level of being chronic and toxic.
As with any illness or medical concern, knowing the signs and symptoms of caregiver stress can help you seek help early on before the stress becomes debilitating. Caregiver stress is a known job-related concern. Fortunately, caregivers have created resources for help and support.
Researchers have performed studies on family caregivers and professional caregivers to better understand the impact of stress on caregivers. The results clearly show that caregiving takes a physical and emotional toll on all caregivers.
A report called “Caregiving in the U.S.” by AARP’s Public Policy Institute, in 2015, makes it clear that our society is trending towards aging in place with family members becoming primary caregivers. [iii] The report showed caregiver stress statistics of about 43.5 million adults in the United States cared for an adult or other family member in the preceding year. Caregiver stress statistics show that about half of them are caring for a parent.
Spouses are increasingly stepping up to care for their spouse or partner. About 1 for every 10 spouse caregivers provides care at the age of 75 or older. Older spouse caregivers not only manage finances for the household, but also for the spouse, while living on a fixed income. The caregiver stress statistics in the AARP report state that spousal caregivers provide about 44.6 hours of care per week—more than what most people work at a full-time job. The stress of managing a household, caring for an ill spouse, and stretching the budget create stressful demands on older caregivers.
About 85% of caregivers care for a relative over the age of 18 and 42% of them are taking care of elderly parents or in-laws. Of the caregivers who responded, about 93% of them said they provide care for 21 hours or more during the week. Many family members who give care for their elders work full time jobs. About 56% of caregivers worked full time at least 34.7 hours a week in addition to their normal caregiving duties. About half of the survey respondents in caregiver stress statistics said they felt they had no choice but to serve as caregiver.
Caregivers reported that long-term caregiving of more than four years affected their health and jobs. Long-term caregiving affected the caregiver’s emotional health much more with 40% of caregivers stating that they found caregiving to be highly stressful.
Other studies have shown that depression is common among family caregivers, especially women caregivers who work.
A 2006 Assessment of Family Caregivers: A Research Perspective report proved that family caregivers experience symptoms of depression at a rate of 40%-70%. [iv] Within those percentages about 25%-50% of family caregivers received a diagnosis of major depression. MetLife studied working caregivers and found that 20% of employed female caregivers who were age 50 or older had a 16% higher rate of depression as compared with similar-aged non-caregiving peers.
You might be thinking that professional caregivers may be less affected by caregiver stress and burnout. Professional caregivers have a less intimate and personal relationship with the seniors they care for. Unless they work as a live-in caregiver, they get to go home after a shift to refresh and recharge themselves. A 2011 research study entitled, “Burnout in Healthcare Workers Managing Chronic Patients with Disorder of Consciousness” demonstrates that professional caregivers are also strongly susceptible to high levels of caregiver stress and burnout.[v] Among professional caregivers, 18% said they felt the effects of burnout and 33% of respondents said that they were emotionally exhausted. Of the caregivers surveyed, 36% said that they were so stressed, they had a depersonalization.
According to Dr. Elizabeth J. Clark, grief over seriously ill and dying patients takes a heavy toll on professional caregivers because they must experience their grief privately, away from family members. Dr. Clark describes professional caregivers as distant mourners. While nurses and other caregivers hide their grief, multiple losses take an emotional toll on them over time. Unresolved grief in professional caregivers may heighten existing emotions like anger, anxiety, blame, helplessness, and guilt.
Dr. Clark points to a study called, “How Well Are We Caring for Caregivers?” which appears in the September 2005, Journal of Pain and Symptom Management, about professional caregiver grief. [vi] The study notes that 72% of caregivers experienced job and patient-related grief. Caregivers stated that they experienced multiple symptoms during times when their caseload had several deaths close together and when they’d formed close and long-term relationships with certain patients.
Do you feel like you are in a state of physical, emotional, and mental exhaustion? Do you often have a negative attitude? Do you feel disassociated from life and things you formerly enjoyed? If you answered yes to those questions, you are likely suffering from caregiver stress and burnout. [vii]
Many caregivers feel pressure to do it all and do it all alone. Burnout can lead to depression and other health-related symptoms. Chronic depression can lead to poor decision-making and escapist behaviors like promiscuous sex, impulsivity, or addictions. [viii]
If you’ve ever been so busy with a task that you forgot to eat a regular meal, you can certainly understand how caregivers spend so much time and energy caring for others that they neglect to care for themselves. The demands of caregiving tax virtually every bodily system, which leads to intense fatigue, hopelessness, and eventually to complete burnout.
Specific factors negatively affect family caregivers, leading to burnout. Family members often rise to the charge to provide care for seniors after a crisis like an unexpected hospitalization. At first, caregiving seems easy and natural. Over time, family members start to become affected by role confusion. [ix] Are they a spouse or child or are they an unpaid caregiver? In trying to manage their own lives while providing care, they have no time to sort out their feelings.
After a sudden illness, there is often precious little time to make a comprehensive, long-term plan for senior care. Family caregivers begin to worry about the financial drain of the cost of caregiving. Initially, they may not be award that they can enlist professional or volunteer help. They have not yet found resources of people and agencies who can help them plan and manage their loved one’s care.
In their quest to provide quality care, family caregivers and professional caregivers are guilty of placing unreasonable demands on themselves. Family members may feel pressure from siblings or the senior to cave in to demands that they simply can’t meet. Professional caregivers sometimes feel pressure from their employers to do more than they can feasibly do during their shift.
It’s common for caregivers to start out their duties with a positive attitude and a cheerful outlook. Aging is often noticeably progressive. Certain diseases like Parkinson’s disease or Alzheimer’s disease get progressively worse. While the progression of disease and aging are normal and expected, many caregivers want to believe that their diligent caregiving skills will improve symptoms with time. Even though it’s unrealistic to expect such patients to make progress, caregivers can’t help but feel disappointed that their involvement isn’t making a difference. Many caregivers find it hard to fully comprehend that tending to their caregiving duties is enough and is highly valued.
Long shifts, overtime hours, and fast-paced duties all lead to eventual burnout. As a result of exhaustion, caregivers often develop weakened immune systems, creating ripe conditions for illness. To make matters worse, caregivers don’t always realize they are getting burned out because they don’t recognize the signs and symptoms within themselves.
Caregiver burnout burdens every part of your body including your muscular system, circulatory system, nervous systems, digestive system, and endocrine system. Essentially, being burned out wipes out a caregiver’s ability to function in any sense. Since burnout affects so many bodily systems at once, senior caregivers will have many symptoms.
Some of the symptoms of caregiver stress and burnout mirror symptoms of grief and depression. [x] Burned out caregivers may withdraw from friends, family, and activities that they formerly enjoyed. It’s common for caregivers experiencing burnout to feel sad or hopeless. They feel that there is no “out” and that the stress they feel is never going to end.
Burnout has a huge effect on the emotions of caregivers, placing them high on the caregiver stress scale. They may seem that their emotions have no filter. Irritability, anger, and sadness can go from zero to a hundred in seconds flat, without warning. In extreme cases, a caregiver may have fleeting moments of wanting to harm themselves or the person they are caring for.
As tired as a caregiver with burnout may be, they may have trouble sleeping at night. If they sleep at all, it may not be a restful, refreshing sleep, and yet they may feel sleepy at various times during the day when they need to be providing care.
Caregivers who suffer from burnout may have inconsistent eating habits, either eating too much or too little. This can cause a drastic and unhealthy weight loss or gain, which can lead to other health problems.
The overarching symptom of burnout is exhaustion. Caregivers are simply too tired to do much of anything, even when they are off-duty. Being overly and chronically exhausted causes them to not care about much of anything. Burnout can lead to negligent caregiving which could be dangerous to a senior’s health and well-being.
Caregivers can become so focused on their duties and managing other areas of their lives that they can’t see signs and symptoms of severe stress in themselves. Others who are close to caregivers may notice the signs first. Let’s take a look at a couple of caregiver stress tests that caregivers can use as a means for self-assessment. They will gauge their level of stress and the impact that it may be having on their ability to continue providing quality care.
Family caregivers and community companion caregivers may want to do a self-assessment using the Kingston Caregiver Stress Scale. [xi] This test is also known by the acronym KCSS. Caregivers answer a set of ten questions grouped by caregiving, family, and financial issues. Test takers answer questions about their stress levels and get an answer key at the end for self-evaluation. Caregivers can take this test periodically to notice if their stress levels are changing or escalating over time. The benefit of this test is that it not only indicates if stress exists, but also what may be causing it. This test is not intended for use by professional caregivers.
The Alzheimer’s Association also offers a caregiver stress test for specifically for caregivers of people with Alzheimer’s disease or dementia. [xii] The Alzheimer’s Stress Check is more comprehensive than the KCSS. This test has a series of eight questions that show care providers where they are on the caregiver stress scale. After answering each question, Alzheimer’s Association responds with articles on ways to help you relieve the stressor and ways of how to implement specific stress-reducing strategies.
Another caregiver stress test that helps to assess your personal stress test is shown on the AARP website. [xiii] Caregivers can perform this self-assessment in minutes. The AARP caregiver stress assessment lists 15 areas of stress. Test takers give each area a rating on their caregiver stress scale. The program scores the test automatically and lets you know if you are currently experiencing burnout or whether your answers indicate that you are at risk for burnout in the near future.
If you are a caregiver that feels stressed and worn out, hopefully the results of one of these caregiver stress tests has given you some new information about yourself. Perhaps it gave you an indication of whether you need to make some changes in your caregiving plan so that you can take better of yourself.
If your test results indicate that you are on the verge of burnout or well on your way to being burned out, it’s a good time to schedule an appointment with your family physician for a physical examination. Getting an examination at this stage can head of more serious health problems later on.
If you’ve determined that you are experiencing caregiver burnout, all is not hopeless. Try to remember that many caregivers have taken this long and winding road before you. Along the way, they have discovered many helpful ways to relieve stress and prevent burnout. Taking care of the caregiver is essential.
Simply put—join a caregiver support group. [xiv] You may find yourself coming up with a myriad of excuses for not attending one. Support groups work for taking care of the caregiver because the attendees find strength in sharing experiences. Chances are that many of the people in your circle of family and friends will not understand the hardships that you are facing. Often, they get tired of hearing how difficult your life has become. Members of a support group will be happy to see you each week. In addition to gaining support from understanding fellow caregivers, other members will also help you locate other resources in your community. Perhaps you can all attend a workshop on senior caregiving as a group. You may find a support group is so helpful that you it refreshes you enough that you can find the time to go and get support. Caregivers that are under extreme duress find it helpful to attend more than one group.
Do you like writing? Buy a journal or start a personal journal on your tablet or computer. [xv] You don’t even have to share it with anyone. Consider your journal your very own personal space to vent and cry out loud, to think through your feelings, and to serve as a record for how far you’ve come along in your caregiving journey. Seeing your feelings on paper or on a screen validates what you are feeling and they don’t have to make sense. Just allow yourself to feel your feelings in a safe, personal space.
Schedule an appointment with a counselor. You may find someone in your community or at your place of worship that specializes in taking care of the caregiver. A professional therapist, social worker or clergy member can help you sort through your feelings of anger, sadness, anxiety, frustration, and helplessness. It’s not necessary to see a therapist for the entire time of your caregiving experience, but it can be extremely helpful during the most trying times.
Seek a resource for respite services. Respite is another type of caregiver that provides a temporary break to provide an outlet for taking care of the caregiver. Respite care can range from an hour or two at the senior’s home or for several days.[xvi] Many assisted living programs and nursing centers offer a daily rate for adult day care. Senior home health agencies and non-profit agencies are usually good resources to find respite care. Many community senior programs have adult day programs. An adult day care program provides quality respite care for seniors for one or more days of the week. Adult day care programs provide meals and activities for seniors. Sometimes they even provide transportation. If you’re not sure where to find a respite provider, think twice about attending a caregiver support group. Chances are pretty good that another member of the group can lead you in the right direction.
Check into hiring a home health care service. Think about the most stressful part of your day. Do you find performing activities of daily living the most exhausting? Perhaps you can hire a personal caregiver independently or through an agency to manage some of the most difficult tasks. That will leave you with more time to do the tasks that you enjoy. You will feel less stressed and the person you care for will be the beneficiary of your refreshed attitude and good care. Hiring a part-time caregiver may not cost as much as you expect and you will find that being relieved of some of your burden is well worth the cost.
Carve time into your schedule to do something that you especially enjoy. Making your emotional health a priority is just as important as the care you daily give to others. [xvii] Take a walk and get some fresh air. Read a chapter from a book. Get a pedicure or a massage. Take your frustrations out by playing your favorite sport. Learn how to crochet or learn a new craft. Organize a closet or go visit a friend. There are many things that you can do to relax if you put your mind to it. Whatever you choose, write it down in your journal and how it made you feel. You’ll find it helpful to reread your notes on the most difficult days.
Have an honest discussion with your doctor about the level of stress that you feel. Perhaps a short-term medication can help relieve your stress or aid your sleep. Eat healthy meals at regular intervals. You’ll be surprised how taking this small step will fuel your energy. Avoid sodas, caffeine, and sugary snacks. Pack a power bar when you’re running short on time. Order some meals in occasionally and give yourself a break from cooking and cleaning up. Avoid alcohol, which will make you even more tired, and it could become habit forming as a stress reliever. Taking care of the caregiver means being willing to accept help.
Get out and get some exercise. Run it out at the gym or shoot some hoops. Take a walk at the beach, visit a park, or pay a visit to a botanical garden. Find a place to do some swimming all year long. Do you know that some forms of exercise can help you relax? Tai Chi is a martial art with fluid movements that puts your mind into a relaxed state by virtue of the dance-like movements. Many yoga centers are offering laughing yoga, which is sure to laugh your stress away.
Many caregivers are frightened when they begin to see erratic or unusual behavior. Having a better understanding of normal changes during aging and common diseases like Alzheimer’s disease, Parkinson’s disease, and other medical matters will help you prepare if you need to make a change in the caregiving plan. [xviii] For people with progressive diseases, at some point you will most likely to enlist additional help.
Are you aware of any mobile services in your community? If your senior has a pet, you may be able to find a mobile pet grooming service that will come right to the house. Some salons offer in-home hair cutting and washing services for elderly people. The post office will let you print stamps at home for a small monthly fee which saves a trip to the post office. Set up paying bills online and you’ll rarely have to make a trip to the bank.
Stores have made it easier than ever to shop online. Many grocery stores let you place an order online and pick it up at the curb. You may also be able to find a service that shops and delivers groceries right to your door. When friends or family members ask what they can do for you, ask if they mind making a weekly run to the grocery store for you. It’s a task most people won’t mind taking off your plate and it will free you up to tend to other tasks.
Mobile services can help caregivers as well. Therapists are finding that their services are just as helpful via phone and video chat as they are in person. Caregivers may be able to have their own therapy session when the senior is napping.
Eating a healthy diet and getting daily exercise will help you to sleep at night. Don’t forget to keep yourself hydrated by drinking plenty of water.
If it’s possible, try to coordinate your own sleep cycle with the person that you are caring for. You might also consider hiring outside help during the senior’s sleeping times so that you can get some sleep in your own bed.
Many caregivers get frustrated by seniors who need to use the bathroom several times at night. It may help to install some grab bars and raise the toilet so they can manage on their own. Doing something as minor as adding a nightlight can make a world of difference. Don’t count out the possibility of a medical problem like diabetes, that is causing frequent bathroom trips.
Music is beneficial for caregivers at many times. Listen to some music with headphones if the person you are caring for is sleeping. Play some soft music before retiring at night to help relax you. If you play an instrument, spend a little time practicing some of your favorite pieces.
Hopefully, you have found something in this list that will help take the stress out of your days and prevent burnout.
Nearly every community has some form of senior care services. You may not have noticed them before if you never needed them. Check with your city or village government to see what advice for caregivers they offer. They may be able to direct you to senior centers or private senior activity groups.
Local senior groups will also be able to give advice for caregivers and you locate services for caregiver support including support groups and respite care.
Check out the website for the National Association of Area Agencies on Aging. [xix] This is a federal organization that will direct you to the state or local associations for advice for caregivers in your area. Your local affiliate will be able to help you find adult day care programs, support groups, and other senior services. Your local AARP office is another valuable resource that will connect you with helpful services.
Look for non-profit organizations that support specific illnesses like cancer, Alzheimer’s disease, depression, mental illness, Parkinson’s disease or cardiac issues.
Do an internet search to find home health agencies or private caregiver services. They can help you find services that fit within your budget and acquaint you with available options for helping you make your duties manageable.
If you’re looking for short-term or temporary help, ask for advice for caregivers at the nearest assisted living facility or nursing home. They may be able to fill in for some of your duties on an as-needed basis.
Perhaps one of the best things that you can do for yourself to prevent caregiver stress and burnout is to make an effort to keep the mood light. Humor is a valuable coping mechanism for you and the person that you provide care for. [xx] A lot of funny things naturally happen throughout the day, but they may be harder to recognize when you feel overburdened. Develop other ways to cope while you are on the job. Have you tried singing through your tasks?
Providing care for a special senior isn’t all chores and difficulty. As often as you can, take a few moments here and there to offer a warm touch of the hand. Greet the senior’s eyes with a kind look and a gentle smile. Those connections will mean more to an elderly person than any task that you perform for them. These small gestures will soothe caregiver stress and those they care for.