The New Grief: Caring for the Caregivers

Without all the people who find themselves caring for those with terminal illnesses, our healthcare system would be overwhelmed. Yet we as a society do little to support them. There is much more we can do.
11/30/2010 08:51am ET | Updated November 17, 2011
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The subject of this posting is the silent safety net: all those people who find themselves caring for those with terminal illnesses. It is a safety net that is made up of literally millions of Americans. They bear their responsibilities steadily, quietly and without fanfare. Without them our healthcare system would quickly be overwhelmed. Yet we as a society do little to support them. There is much more we can do, and it wouldn't cost us a dollar.

In its Oct. 25 issue, Time magazine ran a special report on Alzheimer's disease. The bulk of the report focused on the symptoms and course of this insidious and frightening disease, along with some discussion of ongoing research that is aimed at unraveling its causes and developing either a cure or at least a way to arrest it. The piece also included a touching commentary by Patti Davis, daughter of late President Ronald Reagan, on what it was like to lose her father to the disease, and an equally moving comment by an Alzheimer's patient about the need to be gentle and patient with herself. What this article was notably short on, however, was any in-depth discussion of what it is actually like to suffer from this disease, or what it is like to be a caretaker for someone whose cognitive and physical decline can last a decade or more before the progressive brain damage that Alzheimer's causes eventually claims a life.

The combination of advances in medical diagnosis and treatment, along with an expected wave of millions of baby boomers entering old age, means that there will also be millions of Americans who will find themselves playing the role of caregiver. The majority -- though by no means all -- of these will be women. In her report titled "A Woman's Nation Takes on Alzheimer's," Maria Shriver points out that roughly a third of caregivers bear this responsibility around the clock. As much as they may do so willingly and lovingly, this burden is not without its costs. According to the Family Caregiver Alliance, as many as 35 percent of these individuals suffer from significant symptoms of depression. They are also at greater risk than average for physical illnesses such as hypertension, and as many as four in 10 say that their caretaking responsibilities have placed a strain on their marriages. For a vivid visual image not only of how Alzheimer's affects its victims but of how caretaking can affect the caretakers, watch the film "Away from Her," in which Julie Christie plays the patient and Gordon Pinsent plays her husband. Despite the fact that Christie is placed in a nursing home where her day-to-day care is taken over by paid staff, the impact on her husband -- of losing his wife piece by piece -- is clear and powerful.

It may be that as a society we hesitate to face up to the issue of how caretaking affects the caretaker. Perhaps that is why we also resist accepting the reality that most, if not all, of us will find ourselves in both roles -- caretaker and person in need of caretaking -- sooner or later. As understandable as this denial may be, we indulge in it at our peril.

Here is a real-life example of what it is like to be a caregiver:

Sarah, age 42, has two daughters ages eight and six. Prior to marrying and having her daughters -- and then being diagnosed with multiple sclerosis -- Sarah was a very successful corporate executive. She earned a high salary, which she invested well. Even in the face of what we've come to call the "Great Recession," Sarah's investments yield her an income that significantly supplements what her husband earns as regional manager for a national auto parts chain.

Sarah has one sibling, an older brother who lives with his family in the Southwest. Sarah and her family live in the Northeast, in a comfortable home in a desirable suburb with good schools and ample land that the Town has purchased and designated as open space. Her parents live in the house Sarah was raised in, about five miles away. Her husband's job requires regular travel, so Sarah does the bulk of the day-to-day parenting and generally manages the household. She has been asymptomatic from her MS for nearly a year. Fortunately she was diagnosed early, and treatment using immunosuppressant drugs appears to be slowing the disease.

For the past two years Sarah has also had to cope with the fact that her mother was diagnosed with Alzheimer's disease. Though Sarah herself has spoken with her mother's doctors and knows that her father has as well, neither of her parents have been willing to accept this diagnosis. Both insist there is "nothing wrong" with Sarah's mother. This is true despite the fact that Sarah's daughters are aware that their grandmother does not always get their names right, and the fact that Sarah's mother often will call her three times in an hour and not remember any of the calls, and the fact that on more than one occasion she has wandered out of the house and gotten lost in the neighborhood she's lived in for some 40 years.

Sarah's situation is far from unique. She has two children to raise, and a marriage. She has a house. Though she does not work, she has chronic illness that needs attention. On top of that her parents are aging, and her mother is slowly but inexorably being overtaken by Alzheimer's. She feels obligated to visit her parents several times a week when the girls are in school. Because her mother has lost almost all of her ability to organize and prepare meals, and because her father, despite his best efforts, has limited stamina, Sarah does double-duty in terms of housework and cooking. She prepares meals at her parents' house, and at home she's developed a habit of doubling recipes, freezing half, and bringing it to her parents. She also drives her parents to her mother's medical appointments. She finds these frustrating because of her parents' refusal to acknowledge the Alzheimer's (which the doctor simply accepts), but she has found that speaking up only creates a ruckus.

Sarah expects to be "sandwiched" this way between her children and her parents indefinitely. Her husband has been supportive, and has even volunteered to do some repairs at her parents' house, but Sarah also wants a marriage and knows tat her husband misses her when he is away on business. So far her health has been ok, but she's been told by her own doctors that excess stress could cause her MS to worsen. One has even recommended that she learn to meditate and take time to do it twice a day.

Could Sarah use some support and caregiving for herself? You bet she could. But until recently she has had no support "network" whatsoever outside of her husband (when he's at home).

In the process of writing our book, "Saying Goodbye: How Families Can Find Renewal Through Loss," Dr. Barbara Okun and I discovered an emerging online "community" of organizations devoted to caregiving and supporting caregivers like Sarah. This is a welcome development, and it appears to have emerged as a result of several factors: the fact that terminal illness, as opposed to sudden death, has become the rule rather than the exception; the fact that we live in an era of the far-flung family, where potentially supportive relatives and friends may not be close at hand; and, finally, the fact that the vast majority of families must rely on two breadwinners for financial survival, which leaves them precious little time to spare. Given these realities, the question is: Where can we turn to for support?

Not long ago it was popular to lament the Internet as a phenomenon that caused people to become isolated. Now it appears that the Internet is also a blessing, in that it has given birth to an online community that caregivers can turn to. By accessing this community caregivers can find advice and information, support and dialogue, and even concrete help that allows them to restore some balance in their lives. Sarah did just that, by logging on to I'd encourage caretakers to check this site out, and to look for similar sites whose purpose is to coordinate support for the growing network of caregivers. Please share your experiences of finding support through the Internet.