6.3. Caregiver Stress: Remembering To Take Care Of Yourself
Caregivers are those that care for others because they either can't care for themselves or need assistance to carry out everyday tasks. Caregivers are often related to the people they are caring for, and the person being cared for is frequently a cherished loved one.
The job of caregiving, while a worthwhile and rewarding endeavor, is fraught with stress and requires an incredible amount of patience and understanding.
Sometimes loved ones suffer from memory loss or have lost some physical ability. Sometimes they have medical issues that need to be tended to daily. They can require help with daily essentials such as cooking, cleaning, bathing, or using the toilet, while others may require the administration of medicine and transportation to and from the doctor. Some require round-the-clock care, giving little rest to their caretakers.
Unfortunately, stress among caregivers is extremely common. Caregivers often try to do everything by themselves, which eventually leaves them worn out and unable to fully attend to everything they are expected to do. Furthermore, ignoring the symptoms of stress can affect physical and mental health and lead to burnout, and make it impossible for the caregiver to continue caring for their loved one.
Caregivers are likely to be related to the person needing care. Over 65% of older people with long-term care needs, for example, rely exclusively on family and friends to provide that care. Women provide the majority of the care. There are many that work on an informal basis so accurate numbers are hard to come by, but caregivers are thought to be anywhere from 59 to 75% female. The average caregiver is about 46 years old, married, and works outside the home.
The reasons caregivers experience stress are as different as the caregivers themselves. Most experience several different stressors at the same time. However, some of the most common complaints are:
No "Off" Time
Caregivers often get little time to themselves and few breaks. Every moment of their day is occupied in some kind of work. Some work full or part time in addition to their caregiving duties, and even their sleep time may be interrupted with the needs of the elderly or disabled person. While respite care is available, it is often economically out of reach for most caregivers, as well as far from where they live. Friends and family may help occasionally, but respite care is not regular or all that dependable.
Caregivers often have to divide their attention between the loved one, a spouse, children, children and friends. This is rarely accomplished without someone feeling left out and resentful. Married caregivers may find it difficult to find "alone time" with their partner, especially if the person being cared for lives with the couple. A simple movie night might be fraught with difficulty because no one wants to leave mom home alone, for example. All couples need that time they dedicate exclusively to their relationship. Furthermore, caregivers seldom have the time it takes to nurture friendships. Single people rarely find the time to date, and even if they could, few would understand the demands placed on the caregiver's shoulders.
When caring for a parent or older person, caregivers often relate that it's difficult to reverse the child/parent dynamic. Adult children are reluctant to become their parent's parent, and find it difficult to know where the line is between the safety and well-being of an aging parent and that parent's right to make decisions for themselves. Furthermore, it may be difficult for the one being cared for to accept that someone has to help them go to the bathroom or assist them while bathing, a job they may have helped the caregiver do at one time.
Sometimes the person being cared for bears little resemblance to the person the caregiver may have known in the past. It's hard to reconcile that mom was once a gentle soul and is now demanding and harsh, or that a husband who was once quiet makes his dissatisfaction known often after a stroke. People who are growing old, who have dementia, who have had a stroke or have been involved in an accident may have a different personality than they once did.
There's usually very little economic support for caregivers, and many are forced to provide their own money toward the caregiving efforts, particularly if the loved on is living in the same home as the caregiver. A recent study by AgingCare.com showed that 34% of caregivers are contributing $300 or more each month out of their own pocket for expenses related to care for their loved one. Furthermore, there is lost time from work, diminished earning ability, and reduced Social Security benefits when the caregiver retires. Seniors who get Social Security may experience reduced benefits due to free room and board. However, caregivers may be able to claim the loved one as a dependent if they provide more than 50% of their expenses for things such as food, housing, and medical supplies. Other startling statistics: 33% of women who are caregivers will decrease their work hours as a result of their caregiving activities, 29% pass up job promotions or training opportunities, 22% take a leave of absence, 20% switch from full time to part time employment, 16% quit their jobs entirely, and 13% retire early.
No one enjoys making some of the terrible, unthinkable decisions thrust upon caregivers from time to time. Sometimes the person being cared for has medical needs beyond the caregiver's abilities, they may become unmanageable because they have become violent or abusive, or they may need end-of-life care. None of these situations are easy, and all require a great deal of thought and often a good measure of tears.
Caregivers experience higher levels of mental and physical health problems than most people. While men and women tend to take on different roles in the caregiving process, both men and women suffer from much the same symptoms of stress.
Stress can bring on anything from a general feeling of temporary unhappiness at life, all the way to clinically diagnosable depression that requires treatment. It is one of the most common complaints among caregivers. Depression breaks the spirit and leaves caregivers unable to fulfill their responsibilities. The mental health impact is largely determined by the number of hours people are engaged in caregiving activities. One study, for example, found that middle-aged women who were engaged for 36 hours or more a week in the care of their spouse were 6 times more likely to suffer mental health consequences, and those engaged in caring for parents were twice as likely to suffer mental health consequences as a result of caregiving.
Anxiety could arguably be a part of depression. It encompasses different emotions, however, which include feelings of worry, unease, nervousness and angst about what the future holds for both the caregiver and the one being cared for. It may even manifest itself as an inability to sleep. Caregivers may worry about their ability to adequately care for their loved ones. They may also worry about their own health, because they are likely to neglect their own needs. Taking care of someone else, especially those at the end of their lives, may cause caregivers to reflect on their own mortality. All of these symptoms are normal, yet caregivers should seek professional help, since constant anxiety can cause deeper and more serious problems if left untreated.
When caregivers are overworked and exhausted, or feeling unappreciated, frustrated or powerless they may become moody, irritable, hostile or short-tempered, or just want to be left alone. However, it's unlikely that the caregiver has the luxury of being left alone to regain their emotional strength. Constant irritability can be bad for the caregiver and the person being cared for, since caregiving requires a Herculean amount of patience. The caregiver may begin to experience physical problems such as headaches and poor digestion, and may begin to snap at others, including the loved one, other members of the family, doctors, or service providers.
Denial, an element in the process of grief, is also a sign of caregiver stress. The caregiver may deny how ill the individual being cared for actually is, or may believe they will get better. They may deny that more professional help is needed when they can no longer care for the loved one adequately.
Social withdrawal is also a sign of depression, but is a little easier to recognize than some of the other symptoms. Caregivers who once enjoyed social interaction may begin to avoid it. Invitations to family dinners or neighborhood barbeques may be left unanswered or refused, and even posts on social media like Facebook may diminish as the caregiver pulls more and more inside themselves. A number of factors may contribute to this: social interactions require effort, and the caregiver may simply be too exhausted; friends and family may stop visiting; and the person being cared for may behave unpredictably and make social interactions awkward.
Researchers have found that 1 in 3 caregivers provide care for others while being in poor health themselves. 25% of female caregivers suffer health problems as a direct result of their caregiving, and they are twice as likely to suffer from coronary heart disease as their non-caregiving counterparts.
One of the biggest sources of stress is the inability to escape caregiving responsibilities. Although many caregivers attempt to go it alone, they can be better caregivers if they utilize all available support services. There are several resources available that may offer help, and caregivers should not feel reluctant to ask for it even if it seems uncomfortable at first.
If anyone, such as friends and family, has mentioned they will help the caregiver when needed, those names should be put on a list and utilized from time to time. Needs should be stated very specifically. "I need you to watch mom for 2 hours on Tuesday, what time slot is convenient for you?" is much more likely to get a positive response than "I need someone to come watch mom next week," because the need and the time commitment is clearly defined.
Calling on fellow church members may yield results, but don't discount people of other denominations. Call first on people of the church or group to which the loved one belongs, but certain church groups look for ways to show support to people of their community in general, believing it to be a reflection on God. Services can range from mowing the lawn to doing grocery shopping.
Home health care is another option. People will come into the home and provide whatever services the caregiver needs, such as cooking, light housekeeping, and even respite care. Although this kind of care usually costs money, costs may vary according to the services needed. There are even some free programs out there. Military personnel can sometimes enroll in programs such as the Exceptional Family Member Program, which offers free respite care for a special-needs family member. Some caregiver support groups provide services on a sliding fee scale.
Adult day care is also an option. Nationally, adult day care ranges from $40 to $100 per day, averaging about $61, according to the National Adult Day Services Association. Some Medicare or private insurance plans cover adult day care under certain circumstances. The one being cared for may also get a great benefit from this as well, since many day care centers provide social activities, meals, and health-related services.
For caregivers who are married and/or have children, stress develops when there doesn't seem to be enough time or attention to give to everyone who seems to need it. The most effective way to get family buy-in is to seek some consensus. When everyone feels like they are being listened to, the caregiver will likely find more cooperation. Husbands and wives who cooperate form a much more effective support team for an aging parent or special-needs child. Also, remember that not every request from the person being cared for needs to be made the number one priority.
It may seem counter intuitive to say that caregivers need to engage in exercise when they are taxed to the limit as it is and may suffer from exhaustion. However exercise releases endorphins that can help make caregivers feel better. This doesn't mean joining a gym caregivers have precious little time to engage in traveling back and forth but they may be able to fit in a brisk 10-minute walk while the one being cared for is napping. Even when providing care, caregivers can sneak in a little exercise by gardening or following along with a short exercise video. Equipment such as treadmills or weights may allow the caregivers to get in some exercise, and maybe even encourage the ones being cared for to get some exercise too if they are physically able.
Along with getting a little exercise, caregivers should be sure they eat well, because this helps boost endurance and energy. They should try to avoid large, calorie-rich meals that leave them feeling sluggish and sleepy. Instead, eating many small meals of high protein foods along with fruits and vegetables is a better way to sustain energy throughout the day. Drinking plenty of water not only keeps the caregiver hydrated but can flush out toxins, helping the caregiver avoid illness.
If the caregiving job is a 24-hour, 7-days-a-week occupation, sleep may be difficult to come by, yet it is essential for the stamina and thinking ability needed when facing with the challenges of caregiving. Because someone being cared for may still need assistance during the night, such as help going to the bathroom or the administration of medication, a caregiver's sleep may be interrupted. There are things caregivers can do to help them go to sleep quickly and feel more relaxed upon awakening.
The first key to a good night's sleep is creating at least a half hour of downtime before bed. The primary caregiver may be able to enlist other family members to take over then so the caregiver can unwind. Developing a sleep routine helps; going to bed and getting up at the same time everyday keeps everything on schedule. Be sure bedrooms are conducive to sleep the room should be dark, cool, and quiet. Avoiding alcohol and caffeine encourages more restful sleep. Caregivers should not discount the power nap if the one being cared for is napping, caregivers should consider napping at the same time.
It's essential that caregivers care for their emotional, spiritual selves as well, since caring for a loved one requires a great deal of inner strength and can be emotionally taxing. Caregivers tend to ignore their own emotions (or worse, let them build up), which only adds to their feelings of frustration and stress. Some caregivers find relief by talking to a trusted friend, a counselor or a spiritual advisor. Others find peace by participating in religious activities and prayer. Those who aren't religious may still find calm in meditation or breathing exercises designed to sooth the mind and spirit. Visualizing a calm, peaceful place is helpful to some caregivers.
Connecting with other people is extremely important. Most caregivers feel socially isolated and disconnected with the world as their tasks become all-consuming. If possible, the caregiver should arrange to get out for a day or even just an evening with friends. If that kind of connection isn't possible, joining a support group may help because caregivers can connect with people who are in similar situations. Support groups don't have to meet in person. There are online support groups where fellow caregivers can exchange information and offer positive and encouraging words. Social media sites may be helpful to caregivers who want to keep up with friends but don't have the luxury of getting out very often.
Humor has an amazing ability to alleviate stress. Watching a funny movie, telling funny stories or reminiscing about happy times, reading the comics, or just finding humor in everyday ridiculousness actually changes brain chemistry. Many caregivers operate in "stress response," a state where high levels of stress hormones enter the bloodstream. Laughter subdues the stress response, allowing for a more relaxed feeling. Long term benefits include increased immunity to illness, pain relief, and better ability to cope with the demands at hand.
While stressful, the job of caregiving has many rewards. Studies show that because of caregivers, many elderly or special-needs people would require institutionalization, either in a nursing home or special care facility. Because the person being cared for is usually home when there is a caregiver present, families have the opportunity to enjoy the loved one, to share family history, to renew bonds and to gain from their wisdom.
Rewards aside, caregiving is still a stressful and demanding job. Learning to mitigate the stress helps caregivers maintain the vigor, attitude and stamina required to take on this role. The demands of the job are unlikely to change, so utilizing stress-reduction techniques keeps the stress from becoming overwhelming and unmanageable.
Caregivers must learn that taking care of themselves allows them to take care of others, and by doing so they can continue to care for, love, learn from and enjoy the people in their charge.