You do everything you can in taking care of a chronically ill dependent to the point where you neglect your own emotional and physical health. You find yourself exhausted, angry, filled with rage or guilt -- this is known as caregiver syndrome (caregiver stress). It is a condition of exhaustion, anger, rage or guilt that results from unrelieved caring for a chronically ill dependent. This oftentimes creates a degree of what is referred to as "caregiver stress" which includes social isolation, possible loss of income, lack of sleep, mental exhaustion and general fatigue. The risk of getting this syndrome is highest when caring for an individual with behavioral difficulties such as faecal incontinence, memory issues, sleep problems, wandering, and aggressive behavior by the person receiving care.
Caregiver syndrome (stress) is real, and caused by the overwhelming duty of caring for a disabled or chronically ill person, according to Family Medicine Specialist Dr. Patrick Whitfield.
"The stress on the caretaker is caused by an increased stress hormone level for an extended period of time. This results in increased blood pressure, heart rate and lack of sleep, eventually resulting in generalized fatigue, and in some cases depression," said Dr. Whitfield.
The person in declining health isn't the only one suffering. Caregivers also suffer the grief of a declining loved one, which attributes to a depressive-exhaustive state development, and a deteriorating emotional and mental health, says Dr. Whitfield.
"Double-duty caregivers are those already working in the healthcare field who feel obligated to also care for their loved ones at home," he said. "This over-exhaustion and constant caregiving role can cause an increase in physical and mental health deterioration. It is actually being thought that a part of the stress of being a caregiver is from how they feel about the job. In other words if a caregiver does not like or want to be a caregiver, they will inflict more stress on themselves by accepting the role."
The doctor said that daily, hundreds of older people -- 65 years of age or older -- are managing basic health and functioning needs with the help of family caregivers, and that it is becoming increasingly common that many younger Bahamians are requiring the same level of assistance as a result of trauma and strokes.
The result of care given to elders varies across the socioeconomic spectrum that subsequently impacts a person's quality of life in their end stage. In the absence of the financial capacity to employ the necessary caregivers, Dr. Whitfield said care for a loved one has to be assumed by family members. He said it commonly results in one relative assuming the role, with little, if any, assistance rendered by other relatives.
Family caregivers he said are typically close family members, partners, friends or neighbors who tend to provide help because of a personal relationship rather than financial compensation. Oftentimes, he said this leads to loss of income and social isolation of primary family caregivers.
Tasks caregivers may engage in could extend beyond just looking after a person, and include arranging and attending medical appointments, participation in routine and high-stakes treatment decisions, coordination of care and services, help with daily tasks such as dressing and bathing, managing medicines, obtaining and overseeing the use of medical equipment such as oxygen tanks, handling bills, and banking.
The doctor said that older caregivers are not the only ones who put their health and well-being at risk. And that Baby Boomers who have assumed the caregiver role for their parents while simultaneously juggling work and raising adolescent children, face an increased risk for depression, chronic illness and a possible decline in quality of life.
"Challenges are exacerbated when caregivers are in poor health themselves, and don't have a choice about assuming the caregiving role because no one else is available and willing."
He said many family caregivers most often are also employed, and work in low-wage jobs with limited flexibility in their work schedules. They too then develop medical issues due to their unhealthy lifestyle -- sleep deprivation, poor eating habits, failure to exercise, failure to stay in bed when ill, and failure to make medical appointments for themselves.
"As our rates of cancer, strokes, heart disease, high blood pressure, dementia and diabetes continues to escalate, we can expect that many persons currently in their 60s can expect to have substantial care needs, which are defined as having dementia or needing assistance with two or more self-care activities -- eating, bathing, dressing, toileting, or getting in or out of bed," said the family medicine specialist.
Greater rates of childlessness, smaller and more geographically dispersed families, income levels and increasing participation of older women in the labor force pose threats to the availability of family caregivers to meet the needs of the growing number of older Bahamians, according to the doctor.
With advances in medicine having extended life expectancy, that in turn he said has resulted in the duration, complexity and technical difficulty of care required by older adults and delivered by family caregivers.
He also said healthcare professionals also do not typically assess family caregivers' knowledge, understanding, or proficiency in the tasks they are expected to perform at home.
"Family caregivers describe learning how to provide care by trial and error, and being fearful of making a mistake that will cause harm."
In an effort to minimize caregiver stress, the doctor's prescription includes the caregiver taking time for themselves, recognizing and knowing their limit, sticking to a routine, asking for help, getting enough sleep, learning about sundowning and how to cope with it, and ensuring that caring for a loved one is a team effort.
Tips to minimize caregiver stress
Take time for you: It's easy to get burned out when you're caring for a loved one -- whether it's a special-needs child, a spouse with chronic illness, or a frail older person. Taking time for yourself everyday -- even just a few minutes if you can get relief, is one way to help you recharge. Slip out for a 20-minute walk, go to the movies, or pursue any hobby you love. Reducing your stress will make you a better caregiver.
Know your limits: You can't provide good care if you feel overwhelmed and stressed out. Make a list of all the tasks you need to do in a week, including dressing and bathing a loved one, rides, cooking and household chores. Brainstorm which ones someone else might be able to do. Learn when to say no, and set boundaries so you can take charge of your family and yourself.
Stick to a routine: A daily routine can be a lifesaver. It can help you feel in control rather than stressed. It lets your loved one know what to expect. That's good for people with dementia. It provides a sense of security and helps them maintain their abilities.
Ask for help: Even a few hours "off duty" can help you recharge. Make a list of family, friends, or neighbors you can call when you need a break. If finances allow, hire a home health aide.
Get enough sleep: Most caregivers who say their own health has gotten worse, blame loss of sleep. If your loved one sleeps during the day, but is awake much of the night, try to take a nap during the day. You may need to hire someone, or ask a friend or relative to stay with your relative overnight so you can get a good night's sleep.
Cope with sundowning: People with dementia can become confused or agitated in the evening. Planning for it can help them and lower your stress. Set up activities early in the day, and serve an early dinner. Turn the lights up in the evening. Check with a doctor about any physical or sleep problems that may be making the problem worse.
Make it a team effort: Hold regular family meetings to discuss the latest medical news, daily caregiving tasks, financial concerns, and your need for support. Include everyone who cares for your loved one, including paid helpers. Include distant family members in the meeting with a telephone conversation on speaker, or online video chat. Follow up with a written agreement and a calendar of tasks.
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