THE WOMEN'S ISSUE OF LONG TERM CARE--THE NUMBER ONE WOMEN'S ISSUE !!!

Part 3: INFORMAL CAREGIVING AND HOLDING DOWN A JOB    

Ask a woman and she'll tell you.  Ask the women who provide care in their homes (or men who do the same) for a loved one, other than their children, and they'll really tell you!  Caregiving for an older person will change your life!  The assumption is that caregiving is a normal fact of life, and to a certain extent, that is true.  In the continuum of life, logic tells us that parents take care of their children, then those children will have children of their own, whom they in turn, take care of, and so on.  That's to be expected, and yes, that's a matter of nature and common sense.  Generational caring for children has been the norm since day one. 

As a matter of fact, caring for older generations, within the family home, was a common practice for centuries, and is still "the way" in some cultures and societies.

No longer were we an agrarian society, wherein people pretty much stayed within the same house, same farm, or even the same community, in which they were born.  People followed jobs, and some people followed their spouse to wherever those jobs were.  Others moved to large cities, as the industrial revolution created a less rural society and a far larger urban society.  Soon a movement to "sun belt" states became the goal of a large number of people; young, middle-aged, and retired.  Then, towards the last quarter of the 20th century, immigration numbers began to swell, and even more people contributed to changing the "old customs" and "way of life" of the previous century.  That's what happened, in a nutshell.
 
But, one other thing happened along the way.  People who considered age 65 as a "ripe old age," began to see "real elderly" people living into their 70', 80's, even their 90's.  Actually, many of us have had time to see the change occur, and have been able to watch this "aging" take place from afar.  But, for those who have seen these aging processes take place in their own families, the story is quite personal. Suddenly, the question became, "Who's going to take care of my father, or mother, or grandfather, or grandmother, or in-laws?"  Or, probably the more accurate question became "Who's going to take care of me?"      

Well, that's been decided.  Absent a Long Term Care insurance policy, the "children" do the caregiving, and in about 75-80% of the cases, women, both young and old, are the care providers.  Sorry, but that's the case.  Women do most of the caregiving.  End of story.  We've suspected such, and now that we know about it, will soon present the statistics which bear this out.  We simply cannot ignore the issue of informal caregiving in the home, and of the caregiver perhaps trying to hold down a job at the same time. 

Keep in mind that middle-age "children," or even those in their sixties and seventies, seem to accept the conditions of caring for their older loved ones, and very likely, some of them would have it no other way.  But, for many women, especially working mothers with children of their own, the care-giving situation is indeed a heavy burden.

For starters, let's hear what a few of the nation's respected political leaders have to say on the issue of caregiving.  Not surprisingly, I would like to quote two women United States Senators who delivered their message to the U.S. Senate Special Committee on Aging in February of 2002.  First, from Senator Barbara Mikulski (D-MD) who offered: 

"Women are more often the ones who provide care to loved ones and who eventually need care themselves.  Three quarters of caregivers are women.   Women live longer than men and are more than twice as likely to live in a nursing home.  Caregivers and their families face mental, emotional, physical, and financial stresses and strains.  Some caregivers work three shifts--caring for children, working a full-time job, and caring for an elderly parent at home."

Pretty well said, as the overall picture, but let's hear what Senator Debbie Stabenow (D-MI) had to say about the effect of caregiving on the economic conditions of the working female caregiver:

"You have all heard the statistics and what they tell you is that wives are caring for husbands, mothers are caring for children, and grandmothers are caring for entire extended families.  Our economy is reliant upon this uncompensated care provided by loving family members, most of who are women.  Many of these women face difficult choices between family and work and because of time away from the workforce may jeopardize their retirement savings, as well."

So Senator Stabenow introduces the economic factors involved for working caregivers.  We shall discuss that in a moment, as several corporate studies have been conducted which verify both the economic and physical ramifications for  job-holding caregivers.  But for this moment, consider these numbers, as laid out by the U.S. General Accounting Office, and found in the Family Caregiver Alliance Clearinghouse.

     "An estimated 12.8 million Americans of all ages need assistance from others to carry out everyday activities.  Most, but not all, persons in need of long term care are elderly.  Approximately 57% are persons aged 65 and older (7.3 million); 40% are working-age adults 18 to 64 (5.1 million); and 3 percent are children under age 18 (400,000). 

     "Most people who need long term care live at home or in community settings, not in institutions.  Of the 12.8 million Americans estimated to need long term care assistance, only about 2.4 million live in institutions, such as nursing homes."   "...It is estimated that the number of older persons needing long term care may as much as double over the next 25 years; 7 million in 1994; 14 million by 2020; and 24 million by 2060."

Let's talk about this.  If 12.8 million Americans are receiving long term care assistance, and "only" 2.4 million are receiving such in institutions, then that would mean that 10.4 million are receiving care at home-the home of a relative, friend, or another arrangement.  So, who's giving the care?  We'll find out in a minute.  But take a look at the statement of 14 million needing care by 2020.  That is less than a generation away!  Who's going to be giving care (at home, or in an institution) to this large number?  I think by now, we know!  Again, we needn't deceive ourselves about the fact that big-time long term care needs are well on their way. 

Not only should we be concerned about informal caregiving in the home, but we need to realize that we have valid concerns with caregiving in institutions, currently, due to a shortage of nurses and caregivers of all types.  In February of 2002, a report from the Department of Health and Human Services concluded that "the vast majority of the nation's nursing homes-about 90 percent-are staffed too thinly to properly provide basic services..."  The report further assessed a cost of $7.6 billion of today's dollars, per year, to achieve proper staffing. 

In August, 2002, the Joint Commission on Accreditation of Healthcare Organizations reported that the nation's nursing shortage has had "significant consequences during the past five years, even contributing to patient injuries and deaths."  The report says there are 126,000 nursing positions unfilled in hospitals nationwide, but in addition, to the nursing home shortages addressed in the paragraph above, some home health care agencies are being forced to refuse new patients!  It was also estimated that unless something changes, as the nation's baby boomers start to require serious care by 2020, "there will be at least 400,000 fewer nurses available to provide care than will be needed."  The obvious is already here; we are short of caregivers now, whether in institutions as professionals, or at home as personal and informal family members.

Let's look at some startling statistics developed by the state of California.  California is home to the largest number of age 65 and over people in the United States (3.6 million,) and has the governmental resources to track informal (home) caregiving, so we find great value in their work. California has published a booklet, "Quickfacts The Elderly," and an article from the Family Caregiver Alliance entitled, "Who's Taking Care?"  To develop information of this sort on a national scale, would take the efforts of each state, then a compilation of those efforts. Therefore, we have the state with the largest (nearly 10 percent) population of the nation's age 65+ residents to thank for their significant contribution to this important body of knowledge.  The findings, as astonishing as they are, would seem to bear out what happens on a national scale, and even though they are state specific, I find no reason they would not be representative of our nation as a whole.

1) Families in California provide 80 percent of all long term care at home.
2) Nearly 57 percent of caregivers are age 65 and over; 40 percent are 18-64.
3) One in four households in California is involved in care giving.
4) Twenty to forty percent of caregivers also have children under 18.
5) The average woman spends 17 years caring for children and 18 years caring for an elderly relative.
6) In California, 53 percent of caregivers under 65 are juggling work and care giving.

The above statistics are certainly discouraging to people who have been involved in informal home caregiving, and "echo" similar statements compiled from serious and severe real life situations.  We might call it a sanitized view of very important information.  Look again at the above six items, and visualize where you might see yourself currently or in the future, and determine if Comprehensive LTC insurance policies, which pay for home care of the sort described above would allow you to avoid similar situations for yourself and your family.  

In addition, let's take a hard look at the following four enlightening statistical statements from the article "Who's Taking Care?" developed by the Family Caregiver Alliance, Statewide Resources Consultant to the California Department of Mental Health, which not only discuss the caregivers, but the physical, mental and economic results of their efforts.

1) Caregivers are predominantly female (76 percent), and over half are either wives (34 percent) or daughters/daughters-in-law (32 percent)...An average age of 60.5 years.  More than one in five (21 percent) is 75 years of age or older.  On average, caregivers have been providing care for nearly 5 years.

2) 29 percent of caregivers under the age of 65 say they quit their jobs to give care, and another 25 percent reduced their work hours.  Caregivers report providing an average of 87 hours of care a week, yet they only receive an average of 11 hours of help a week in care giving from their own family and friends.
   
3) Research has shown that prolonged care giving has negative effects on the emotional and physical health of caregivers.  The caregivers served by California's CRCs are at risk for experiencing serious emotional and physical health problems of their own.    

4) Two-thirds (66 percent) of the family caregivers report significant health problems and 41 percent say their health is now worse than five years ago.  Well over half (59 percent) of California caregivers seeking help and support from a CRC, show clinical symptoms of depression.  The most common self-reported health problem of family caregivers is depression.  Mental health concerns remain a serious and pervasive problem.

If you haven't gotten the full impact of these four statements, read them again, until you do get the full impact.  Imagine.  There is enough material embodied in these four paragraphs to do an entire book on caregiver's problems in general, and women caregivers in particular.  For instance, check out that first paragraph which verifies the "75% lady caregiver" statement.  Then tie in the facts that one in five of the caregivers is over age 75 themselves, and that on the average, they have been providing care for nearly 5 years!  These are overwhelming facts.

Not only that, but anyone who has experienced caregiving can testify that it is not easy work.  Paragraphs 3 and 4 above explain the effect that this effort has on the health of the caregiver.  As a consequence of this difficult task, the caregivers find themselves "experiencing serious emotional and physical health problems of their own!"   I wonder!  Forty one percent say that their health is worse now than five years ago, to the extent that nearly 60 percent of them show clinical symptoms of depression, which seems to be the most common self-reported health problem of caregivers.  I think we've made the point, but I have to wonder how much of this grief could be avoided with a Comprehensive Long Term Care policy, which would allow professional help to come into the home for even as little as five or six hours a day, to offer some relief for what in reality, may be a twenty-four-hour-a-day job. 

I am reminded of a male friend of mine who described the ordeal of taking care of his brother for twelve years.  His simple statement was, "It will change your life, not just for a few hours a day, but for several hours... every day of your life."  He told of getting up half and hour earlier each day, coming home at noon, and going to bed half an hour later each evening, seven days a week-for twelve years!  I think I understand.

In Part 4 of "The Silent Crisis" we will address the issues of salaries, finances, and Social Security, as they relate to the economic conditions forced on many of the nation's women, and discuss how unfairness developed in these issues impact women much more than their male counterparts.   

 The Silent Crisis--The Women's Issue of Long Term Care 

(Editor's note:  This content is adapted from the book, "Guarding Your Gold II," by Ronald J. Iverson, Copyright, 2004.  Even though some of the statistical content is dated--1996 to 2000--the basic premise of the chapter, that of women's issues regarding Long Term Care, remains the same.)