Despite 2,000,000 residents in 18,000 nursing homes, most caregiving for the frail, confused, elderly is given by family members--people who are trying to lead their own lives, pursue their own careers, and care for their own children. I, like millions of other baby boomers, am a card-carrying member of the sandwich generation. My mother lived a life of independence until the day she suddenly died, but my father descended into a deeper and deeper dementia during the last few years of his 89-year life. And this was happening while I was raising my own children. I became, like so many others, a parent to both my parent and to my children. I would likely not have been counted among those who was the primary caregiver to my father, but even though he was at first in senior housing attending a day program and later in a nursing home, his care required constant attention on my part--close to daily visits, attending care planning meetings, going to doctor appointments, making medical decisions, and being a loving son.
Fortunately, I had the support and help of my wife and my brother, but many caregivers toil on their own, and I am not surprised when I read of a physically frail husband caring for a wife with dementia committing a murder suicide.
Some time ago, a pediatrician friend of mine told me he received a call from the mother of an autistic child--in the midst of a huge tantrum--begging for a drug. The best he could offer, "Mix yourself a martini and call me in the morning."
For several years I was on the board of an agency that cared for clients with extremely profound disabilities. This agency set up a respite program whose purpose it was to allow the family caregivers to get away from their child or sibling--literally a holiday from caregiving where you could kick back, enjoy life, and know that someone else, at least for a while, was sharing the load.
But in all too many cases the work of family caregiving resembles the life of the proverbial mom and pop grocery store--open seven day a week--whose owners have never had a vacation.
The Office on Women's Health in the Department of Health and Human Services--most caregivers are female--has compiled the following guidelines and resources about caregiver stress.
What is a caregiver?
A caregiver is anyone who provides help to another person in need. Usually, the person receiving care has a condition such as dementia, cancer, or brain injury and needs help with basic daily tasks.
People who are not paid to provide care are known as informal caregivers or family caregivers. The most common type of informal caregiving relationship is an adult child caring for an elderly parent.
Who are our nation's caregivers?
Most Americans will be informal caregivers at some point during their lives. During any given year, there are more than 44 million Americans (21% of the adult population) who provide unpaid care to an elderly or disabled person 18 years or older. Altogether, informal caregivers provide 80 percent of the long-term care in the United States.
• Sixty-one percent of caregivers are women.
• Most caregivers are middle-aged.
• Thirteen percent of caregivers are aged 65 years and older.
• Fifty-nine percent of informal caregivers have jobs in addition to caring for another person. Because of time spent caregiving, more than half of employed women caregivers have made changes at work, such as going in late, leaving early, or working fewer hours.
What is caregiver stress?
Caregiver stress is the emotional and physical strain of caregiving. It can take many forms. For instance, you may feel:
• frustrated and angry taking care of someone with dementia who often wanders away or becomes easily upset
• guilty because you think that you should be able to provide better care, despite all the other things that you have to do
• lonely because all the time you spend caregiving has hurt your social life
• exhausted when you go to bed at night
Caregiver stress appears to affect women more than men. About 75 percent of caregivers who report feeling very strained emotionally, physically, or financially are women.
Although caregiving can be challenging, it is important to note that it can also have its rewards. It can give you a feeling of giving back to a loved one. It can also make you feel needed and can lead to a stronger relationship with the person receiving care. About half of caregivers report that:
• they appreciate life more as a result of their caregiving experience
• caregiving has made them feel good about themselves
Can caregiver stress affect my health?
Although most caregivers are in good health, it is not uncommon for caregivers to have serious health problems. Research shows that caregivers:
• are more likely to be have symptoms of depression or anxiety
• are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
• have higher levels of stress hormones
• spend more days sick with an infectious disease
• have a weaker immune response to the influenza, or flu, vaccine
• have slower wound healing
• have higher levels of obesity
• may be at higher risk for mental decline, including problems with memory and paying attention
One research study found that elderly people who felt stressed while taking care of their disabled spouses were 63 percent more likely to die within 4 years than caregivers who were not feeling stressed.
Part of the reason that caregivers often have health problems is that they are less likely to take good care of themselves. For instance, women caregivers, compared with women who are not caregivers, are less likely to:
• get needed medical care
• fill a prescription because of the cost
• get a mammogram
Also, caregivers report that, compared with the time before they became caregivers, they are less likely to:
• get enough sleep
• cook healthy meals
• get enough physical activity
How can I tell if caregiving is putting too much stress on me?
Caregiving may be putting too much stress on you if you have any of the following symptoms:
• feeling overwhelmed
• sleeping too much or too little
• gaining or losing a lot of weight
• feeling tired most of the time
• loss of interest in activities you used to enjoy
• becoming easily irritated or angered
• feeling constantly worried
• often feeling sad
• frequent headaches, bodily pain, or other physical problems
• abuse of alcohol or drugs, including prescription drugs
Talk to a counselor, psychologist, or other mental health professional right away if your stress leads you to physically or emotionally harm the person you are caring for.
What can I do to prevent or relieve stress?
To begin with, never dismiss your feelings as "just stress." Caregiver stress can lead to serious health problems and you should take steps to reduce it as much as you can.
Research shows that people who take an active, problem-solving approach to caregiving issues are less likely to feel stressed than those who react by worrying or feeling helpless. For instance, someone with dementia may ask the same question over and over again, such as, "Where is Mary?" A positive way of dealing with this would be to say, "Mary is not here right now," and then distract the person. You could say, "Let's start getting lunch ready," or involve the person in simple tasks, such as folding laundry.
Some hospitals offer classes that can teach you how to care for someone with the disease that your loved one is facing. To find these classes, ask your doctor, contact an organization that focuses on this disease, or call your local Area Agency on Aging (see below). Other good sources of caregiving information include:
• doctors and nurses
• library books
• web sites of disease-specific organizations
Here are some more tips for reducing stress:
