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Fighting Caregiver Fatigue

Calvin’s day begins before 5 A.M. He knows another exhausting day lies ahead. He allows himself only enough time to have a cup of coffee and read the paper before lying back down by his wife’s side until 6 A.M. when the daily routine begins again; toileting, showering, dressing, wheelchair transfers, laundry, meal preparation, housekeeping, correspondence, paperwork, yard work, personal care. Soon its time for a doctor appointment; more wheelchair transfers, a trip to the pharmacy, grocery shopping, and then, finally, a return home to continue the care routine. No time to rest during the day. Bedtime planning takes an hour so he begins by 9 P.M. Calvin is physically and emotionally exhausted by 10 P.M. and falls asleep quickly. But he is awakened and out of bed at least three times during the night, tending to his wife’s needs, taking her to the toilet, or changing wet sheets. He attempts to return to bed and finds he cannot fall asleep. His mind is active, he feels anxious and has relentless thoughts that swirl in his mind. Daybreak seems to come too quickly and the schedule begins once again. Caregiving consumes 24 hours of the day and sleep deprivation and fatigue are the common denominators.

Caregiver fatigue cannot be understated. According to Webster’s dictionary, fatigue means “physical or mental exhaustion; weariness.”  Spouses, adult children and family members alike are susceptible to caregiver fatigue whether they are providing care twenty-four hours a day or caregiving from a distance. The sandwich generation faces particular challenges as they attempt to provide care to elderly parents while juggling the demands of young families and fulltime careers. Whether caregivers are losing actual sleep or simply wearing down from the constant worry and obligations, help is needed before feelings of resentment and guilt set in or the caregivers’ health is compromised.

Sleep is absolutely necessary to live; however, it is often a low priority in the whole caregiver scenario. As an adult, our bodies need six to nine hours of sleep and after age 65, we need six to eight hours per night. The American Association of Retired Persons (AARP) likens the need for caregivers to take care of themselves to performing regular maintenance on a car. Without regular attention, even the finest cars and caregivers will soon deteriorate. Rest must be a priority. The brain’s frontal lobe especially relies on sleep to effectively function. Without adequate rest, the brain’s ability to access memory, control speech and resolve problems, is greatly hampered.

Family caregivers truly are at risk of physical and emotional problems of their own while they are providing care to a loved one.  Fatigue contributes to an increased vulnerability to illness and it is prevalent in nearly all caregivers, yet unseen by most. The results of fatigue creep in over time, robbing the energy and focus of a caregiver. They often become so immersed in their role that they are unable to see their own health decline ‘right before their eyes’. According to one home care director, by the time many care providers realize they have become caregivers, they are already suffering from the symptoms of caregiver fatigue and are headed for burnout!

Lack of sleep can affect emotional as well as physical health. It can produce anxiety, anger, irritability, affect concentration and task performance, impair judgment to the point of danger (driving, using machinery and administering medications), and impact job performance. Sleep deprivation can lead to mental distress, memory loss, and depression. One male caregiver reported that the emotional fatigue was greater for him than the physical exhaustion. He explained that his wife’s behaviors (for example, false accusations, memory loss, hallucinations, and repetitive statements) often lead to daily arguments and disrupted routines that drained his emotions. He finally learned, over time, that he had to train himself to ‘pick his battles’ in order to avoid arguing as well as ignore some of his wife’s peculiar responses and redirect their daily conversations.

The physical consequences of sleep deprivation can include changes in appetite (weight gain or loss), frequent infections, addictions to alcohol or prescription drugs, problems with focusing, droopy eyelids and increased sensitivity to pain. In addition, lack of sleep can interfere with the body’s ability to regulate insulin production and the metabolism of sugar, putting caregivers at a higher risk of developing diabetes.

There are several ways that caregivers can take steps to fight fatigue and improve their physical and mental health.

1. Recognize that fatigue is present and that it is negatively affecting daily life.

2. Seek solutions to alleviate fatigue and sleep loss.

3. Carry out these solutions with the help of family, friends or hired services.

One caregiver in a support group shared that she actually used respite care in her home to get a much-needed nap three times a week. Another woman asked family members to stay overnight once or twice a week to allow her a full night of rest. An important consideration is for caregivers to step back, set personal limits and encourage the care receiver to perform some of their own self-care activities. As time goes on, it can be easy to over-help and invite greater dependence by the care receiver. Others found, when they finally accepted outside help, they experienced a strong sense of relief. Most caregivers wished they had taken the help much sooner. In some cases, when 24-hour care is no longer achievable, moving a loved one to an assisted living facility or to a nursing home is the best solution.

Caregivers, as well as care receivers, need a well-balanced diet and adequate hydration during the day to stave off fatigue and vulnerability to illness. Try to avoid large meals, high fat foods and the drinking of fluids before bedtime. Taking vitamins, eating proteins, grains and fresh produce and decreasing sugar, caffeine, and alcohol can also promote wellness. Caffeine is a mild stimulant and consuming it before bedtime can affect sleep. It is also a diuretic and will result in an increased need to urinate during the night. Alcohol is a depressant by classification; however, it does cause a person to sleep lighter and awaken more frequently.

Fortunately, there are many things that can help to decrease weariness and promote a good night’s sleep:

• Regular exercise can have a positive effect on improving sleeping habits as well as decreasing stress, depression and anxiety.

• Try to maintain a daily routine for naps and sleep so that the body can adjust to a rhythmic pattern.

• Listen to positive sounds to promote relaxation before sleep. Music or nature sounds, such as waves, can be soothing to the soul. Avoid watching stimulating television shows right before bed as this may bring alarming news that unsettles our mood and disrupts our ability to rest

• Meditation, prayer, and deep breathing exercises are also options to use for calming our minds and bodies so that we can sleep. These can also be done if one awakens during the night.

• Try drinking warm milk, taking a relaxing bath, reading something pleasant and perhaps journal some thoughts prior to bedtime.

• If insomnia is prevalent, discuss medication options with a physician.

Caregivers must take time for themselves and focus on their own needs (both physical and emotional) to avoid depleting their strength and energy. Keeping a daily log of sleeping habits can be a “wake up call” to caregivers and a helpful tool for the doctor to determine recommended solutions. Record the quality of sleep as well as the frequency. Record also the foods eaten and the use of medication, caffeine and alcohol. Note the activities engaged in during the day as well as the emotions. After several weeks, trends may appear that offer great insight into the toll of caregiving and the decisions that need to be made to decrease fatigue and increase energy.

After years of sleep deprivation, fatigue can become a chronic state. The body’s biological clocks are disrupted and symptoms of aging seem to accelerate.  One adult daughter, who cared for her mother daily for three years, felt she herself had aged ten years and gained over 50 pounds. Three months after her mother was able to move to an assisted living facility, the daughter appeared physically transformed and actually looked younger than before she became a caregiver. She attributed it to finally being able to sleep normally and to focus on her own daily care needs now that her mother’s needs were being met by a caring staff.

It can clearly be seen that fatigue and sleep deprivation strongly impact the caregiver’s ability to provide the best possible care to their loved one. Family caregivers are at risk and must open their eyes to their own needs and solutions that may be available to them. Asking for help is a sign of strength, not weakness! When someone else takes over the caregiving responsibilities, even for a short time, caregivers can step back, focus on themselves, rest and get recharged.