You and your loved ones need to recognize and accept these feelings.

Here's "the stats" for the Ladies 

• Most older persons with long-term care needs...65%...rely exclusively on family and friends to provide assistance.¹

• An additional 30% will supplement family care with assistance from paid providers.²

• Care provided by family and friends can determine whether older persons can remain at home. In fact, 50% of the elderly who have a long-term care need but no family available to care for them are in nursing homes...while only 7% who have a family caregiver recipient in an institutional setting.³

Regarding long-term care, women’s caregiving is essential in providing a backbone of support. In fact, with within America's complex system of long-term care, the value of the “informal caregiving” that women provide ranges from $148 BILLION to $188 BILLION...and that's each year.⁴

• By "informal care" we're referring to the millions of UNPAID women who are daughters, in-laws, aunts, mothers, grandmothers, friends, neighbors, nieces, etc...that provide the majority of caregiving to other spouses, parents, parents-in-law, other relatives, friends, and neighbors, and they play many roles while caregiving..."hands-on" health provider, care manager, maid, chef, friend, companion, "surrogate decision-maker", and even advocate.⁵
  
  Many studies have looked at the role of women and family caregiving. You know, although not all have addressed gender issues and caregiving specifically...the results are still generalizable to women because they are indeed the majority of informal care providers in this country. Perhaps it'd be good to consider:

• Estimates of the percentage of family or “informal” caregivers who are women range from 64% to 75%^{6, 7}

This less-than-exact figure prompts us here at United States Christian Nursing Home & Caregiver Association to make a somewhat  brief comment regarding statistics and data. Unlike sports statistics, data from caregiving research is much more "subjective".  

• Forecasts of the exact number of aging/elderly women who will need caregiving or long-term care are uncertain basically because of differing conclusions about the effect of better health care and lifestyle practices of the "baby-boomer" population.

Predicting the magnitude and composition of the growth in the elderly needing long-term care services is quite a daunting task, and it's complicated by several factors.

• Some researchers argue that medical advances have increased life expectancy but have not changed the onset of illness.

• They also predict that declining death rates may actually increase the need for caregiving and long-term care if more people live to develop "age-related" disabling conditions or live longer with existing disabilities.

• Others argue that disability is becoming increasingly compressed into a shorter portion of the life span...decreasing the number of years caregiving and/or long-term care that will be needed. (Wasn't that way for me

• The average caregiver is age 46, female, married plus working outside the home earning an annual income of  $35,000.⁸ Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.  I believe as a 'male' caregiver, that I was very attentive.  Although I did it, "most" males prefer to drive the caregiving recipient to & from the doctor and pay bills, get groceries, and take care of any legal/medical concerns.  When I just mentioned that "I did it", I mean besides these duties ...what I'm talking about is dressing, feeding, bathing (That kinda "creeped me out" with them being my parents), and "porta-potty" duties that included anal wiping and suppository insertions.  I would often vomit into their trays of feces.  They were indeed uncomfortable and unpleasant services to provide...but they needed help, so I did it...for years.  It was the "right thing to do".⁹

Women’s Long-Term Care Needs

Women are the major providers of long-term care in this country, but they also have long-term care needs of their own.

• Women live longer than men, have a tendency to outlive their spouses or guys like me, and have even less access to retirement savings such as pensions.

• In 2000, almost seven percent of all women were age 75 or older.¹⁰ A common scenario is an older woman who cares for her husband and who discovers that there are few resources...financial or otherwise...to meet her own needs for assistance. Come on Ladies!  This is important  information that needs to be addressed..or at least passed on!! You have the power to propose and enact legislation.  For example:

• Women who were 65 in the year 2000 can expect to live another 19 years to age 84.¹¹

• In 2000, almost 40% of women age 65+ were living alone and 51% of women age 80 were living alone.¹²

• In 1997, 70% of older persons ages 75+ who needed assistance with activities of daily living (ADLs) were women.¹³

Women, Work and Caregiving

• The number of working women age 55 and older is projected to increase by 52% between 2000 and 2010, from 6.4 million to 10.1 million.¹⁴ As workforce participation increases...caregiving could pose even greater financial challenges for many women workers, due mostly to lost wages from reduced work hours, time out of the workforce, family leave or early retirement. This time out of the workforce for caregiving may compound the impact of earlier leave taken to care for a child. Further, caregiving is expensive in and of itself...don't you think? Whether it’s paying for prescription medications, installing a ramp for a wheelchair-bound carerecipient, or purchasing consumable supplies, caregiving has a significant economic impact on a family. A 1998 study found that 49% of “Babyboomer” women caregivers suffered “financial hardship” as a result of their caregiving^.15 While the costs of providing care are high...the demands on caregivers’ time are also huge.  Estimates indicate that 25% of the entire American workforce provided “informal” care during the late 90's.¹⁶ 

•   But women don’t abandon their caregiving responsibilities because of employment.  Instead, they cope ...to the best of their abilities...with the combined pressures of caring for a loved one, their need for income, reliance on often disappointing & inadequate public programs and fewer "employment-related" benefits.¹⁷ Unmarried women caregivers may have even fewer options for balancing work and caregiving.¹⁸ One national study on women and caregiving highlighted a bunch of conflicting demands of work and Eldercare. This study found that:19 ("Here it comes") 33% of working women decreased work hours. 29% passed up a job promotion, training or assignment. 22% took a leave of absence. 20% switched from full-time to part-time employment. 16% quit their jobs. 13% retired early...and additional research paints a similar picture.

For example: Results from a 1994–1995 study indicate that the odds of female spousal caregivers retiring are more than five times that of non-caregivers.²⁰

More physical or "mentally-stressful" caregiver responsibilities have a tendency to have a greater impact on a woman's odds of retiring. Women who provide assistance to multiple family members or friends have 50% higher odds of retiring than noncaregiving women^.₂₁

Caregiving places an even worse strain on the dubious and clouded nature of many women’s retirement income,  particularly since time out of the workforce doesn't only have short-term financial consequences. Ordinarily it'll ALSO mean long-term financial consequences, and I'll tell you why!

• Unfortunately for most women, the result of reduced hours on the job or fewer years in the workforce obviously results in less contributions to pensions, Social Security, and other retirement savings "vehicles" which, when you factor in a woman's longer lifespan...will often mean some miserable “twilight” years. Women caregivers are also:²²
• Significantly less likely to receive a pension and, when they do, the pension is only about half as much as those that men receive.

• Likely to spend an average of 12 years out of the workforce raising children and caring for an older relative or friend.²³ Complicating the picture, researchers have found that women who reduced their work hours while caregiving did not increase work hours once caregiving had stopped.²⁴

• Additionally, caregivers who return to full-time employment after caregiving are more likely to:

• Earn lower wages²⁵

• Have a "benefit-poor” job & receive reduced retirement benefits. Caregiving also has a substantial impact on business. Absenteeism, replacing employees who quit in order to provide care and other "caregivingrelated" activities can have serious financial consequences to employers too.

• For instance:²⁶ ("Here comes more")

• The cost to businesses to replace women caregivers who quit their jobs because of their caregiving responsibilities has been estimated at $3.3 billion.

•  Absenteeism among women caregivers due to caregiving responsibilities costs businesses almost $270 million. The cost to businesses because of partial absenteeism (i.e. extended lunch breaks, leaving work early or arriving late) due to women’s caregiving has been estimated at $327 million. "Caregiving-related" workday interruptions add another $3.8 billion to the burden businesses must deal with. Health Consequences of Women’s Caregiving The total toll that caregiving takes just isn't financial. Higher levels of anxiety, depression, and other  mental health problems are common among women who care for an older relative or friend. Studies have shown that men respond to caregiving responsibilities in a fundamentally different way. Women tend to stay home to provide time-consuming care to one or more ill or disabled friends or family members, while men respond to loved one’s needs for support by delaying retirement, in part to shoulder the financial burden associated with long-term care.²⁷ The impact of the women’s intensive caregiving can be substantial. One four-year study found that middle-aged and older women who provided care for an ill or disabled spouse were almost six times as likely to suffer depressive or anxious symptoms as were those who had no caregiving responsibilities.²⁸ It’s not only care for a spouse that can affect mental health, however. The same study found that women who cared for ill parents were twice as likely to suffer from depressive or anxious symptoms as non-caregivers.²⁹ A particularly strong factor in determining the mental health impact of providing care is the total amount of care per week that a woman provides. One study found a marked increase in risk among women who provided ³⁶ or more hours per week of care to a spouse. Researchers concluded that there may be a threshold of time involvement beyond which the likelihood of mental health consequences rapidly escalates.³⁰ In other words, if you're caregiving 24/7 or most of your time is consumed with caregiving, it'll take an emotional toll on you. And hey, the incidence of symptoms or experiences are not just limited to depression. Various studies have identified other common telltale signs of the "Women’s Caregiving Experience:" A higher level of hostility and a greater decline in happiness for caregivers of a family member.³¹ Greater increases in symptoms of depression, less “personal mastery” and less self-acceptance.³² High “caregiving-related” stress.³³ Compounding this picture, physical ailments are not uncommon. We found this particularly interesting: Researchers found that more than one-third of caregivers provide intense and continuing care to others while suffering from poor health themselves.³⁴ Additionally, a 1999 study indicated that as compared to non-caregivers, women caregivers were twice as likely not to fill a prescription because of the cost (26% vs. 13%).³⁵ This one is sad too... Elderly women caring for a loved one who has dementia may be particularly susceptible to the negative health effects of caregiving because they receive significantly less help from family members for their own disabilities.³⁶ The physical impact of providing care can lead to long-term care needs for the caregiver. For example:
  
  As many as two out of three older women do not take advantage of preventive health services due to lack of information and high out-of-pocket costs³⁷

•  25% of women caregivers have health problems as a result of their caregiving activities³⁸ Coronary heart disease (CHD) is one physical risk factor of caregiving. Women who spend nine or more hours a week caring for an ill or disabled spouse increase their CHD risk twofold.³⁹ Check this out too...Other health effects include elevated blood pressure and increased risk of developing hypertension; lower perceived health status; poorer immune function; slower wound healing; and an increased risk of mortality.⁴⁰ Despite the physical and emotional tolls of caregiving and risk factors for disease, women caregivers are less likely to have their own health needs met. One study found that women providing care to an ill/disabled spouse were more likely to report a personal history of hypertension, diabetes and hypercholesterolemia. These same caregivers were also slightly more likely to smoke and consume more saturated fat.⁴¹ Additionally, compared to noncaregiving women: ⁴² 25% (vs. 17%)  rated their own health as fair or poor 54% (vs. 41%) had one or more chronic health conditions 51% (vs. 38%) exhibited depressive symptoms 16% (vs 8%) were twice as likely in this past year NOT to get needed medical attention.43 25% (vs 16%) had difficulty even getting medical care. It is clear that caregiving can have negative health effects. It's important to note, however, that although caregiving can exact physical, emotional, and financial tolls...it can also be emotionally & spiritually rewarding! Hey...some women caregivers reported beneficial effects including more autonomy, more personal growth, more purpose of life, and more “self-acceptance” when caring for family or friends than non-caregivers.⁴⁴ Minority and Low-Income Caregivers There are additional struggles that minority and low-income caregiver may face . Forty-one percent of single African-American women ages 65+ are poor...for elderly Hispanic  women the poverty rate is 49%.⁴⁵ And Hey...for these caregivers, accessing paid sources of care may be especially difficult. In fact, lower-income caregivers are half as likely as "higher-income" caregivers to have paid home health care or assistance available to provide support for and relief from their caregiving functions.⁴⁶ One study concluded that the caregiving time burden falls most heavily on lower-income women: 52% of women caregivers with incomes at or  elow the national median of $35,000 spend 20+ hours each week providing care.⁴⁷ Support Systems for Women Caregivers Because of the multi-faceted role that family and informal caregivers play, they need a range of support services to remain healthy, improve their caregiving skills...while still remaining in their caregiving role.  Caregiver support services include.counseling, information, assistance, respite, home modifications or assistive devices, support  roups and family counseling. Despite the fact many services are available through local government agencies, service organizations, or "faith-based" organizations, a few employers are beginning to implement workplace support programs is one way to relieve & mitigate the impact that caregiving can have on workers. Frequently, support services can make a real difference in the "day-to-day" lives of caregivers. Some women are caregivers 24/7..Research has shown, for example, that counseling and support groups...in combination with respite and other services, have positive direct effects on health behavior practices⁴⁸ and also help caregivers remain in their caregiving role longer, with less stress and greater satisfaction. In fact, women are more than twice as likely as men to say that they would benefit from talking to someone about their caregiving experience.⁴⁹ Further, some studies have shown that actual linkages to services in lieu of "information-only" programs are more beneficial to caregivers.⁵⁰ Because women’s labor force participation continues to grow, "employer-sponsored" programs will become an increasingly vital resource for women who  both work and provide care to a loved one. In Summary If you're a woman, the odds are even GREATER that you'll have to spend an extended amount of your time and your life caring for a loved one. Do at least a little homework in advance...especially if a loved one of yours has a chronic illness, getting feeble or having balance problems...even being overly forgetful. You should also recognize the fact that a loved one could have a life-altering stroke tomorrow!
  
  

  1) Investigate availability of services and how to access them.

  2) Determine how you're going to pay for services.

  3) Investigate care managers...they can really help you at what often is an awkward time.

  4) Develop a plan to prioritize needs.

  5) Learn how to ask for help.

  6) Investigate alternative housing.

  7) Learn what changes make a home "disabled-friendly".

  8) Organize your care-recipient's personal and emergency information including a "living will".

  9) Recognize your own personal limitations.

  In other words...preparation, knowledge, having a plan, and setting limits lead to effective caregiving.

•  A Whole Bunch of References

• 1, D., & Aaker, J. (2002, April1 U.S. Administration on Aging. (2000, Fall). America’s families care: A report on the needs of America’s family caregivers. Retrieved (March 26, 2003) from www.aoa.gov 2 Ibid. 3 Ibid. 4 Calculation based on estimates of women caregivers as a percentage of all caregivers ranging from 59% to 75% and findings from: Arno, P. S. (2002, February). The Economic Value of Informal Caregiving, U.S., 2000. The paper was presented at the annual meeting of the American Association for Geriatric Psychiatry in Florida. 5 Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C. L., Kuerbis A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413.6 Arno, P. S. (2002, February). The Economic Value of Informal Caregiving, U.S., 2000. The paper was presented at the annual meeting of the American Association for Geriatric Psychiatry in Florida. 7 Ibid. 8 National Alliance for Caregiving, & AARP (1997). Family caregiving in the U.S.: Findings from a national survey. Washington, DC: Author. 9 Family Caregiver Alliance. (2001). Selected Caregiver Statistics (Fact Sheet). San Francisco, CA: Author. 10 U.S. Census Bureau. (2000, March). Population by age, sex, race and Hispanic origin. Retrieved (April 7, 2003) from http://www.census.gov/population 11 The Commonwealth Fund. (2000). Living longer, staying well: Promoting good health for older women (Issue Brief). New York: Collins, K. S. & Strumpf, E. 12 AARP Public Policy Institute. (2002). Women and long-term care (Fact Sheet). Washington, DC: Gregory, S. R., & Pandya, S. M. 13 Ibid. 14 Francese, P. (2003, March). Trend ticker: Investing in demographics. American Demographics. 15 National Alliance for Caregiving. (1998). The caregiving boom: Baby boomer women giving care. Washington, DC: Author. 16 Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879. 17 Pavalko, E. K., & Artis, J. E. (1997). Women’s caregiving and paid work: Causal relationships in late midlife. Journal of Gerontology: Social Sciences, 52B(4), 170–179. 18 Ibid. 19 MetLife Mature Market Institute, National Alliance for Caregiving, & The National Center on Women and Aging. (1999, November). The Metlife juggling act study: Balancing caregiving with work and the costs involved. 20 Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879. 21 Ibid. 22 Older Women’s League. Women and long-term care. Retrieved (April 7, 2003) from http://www.owl-national.org 23 Social Security Administration. (2002, February). Women and Social Security (Fact Sheet). Washington, DC: Author. 24 Pavalko, E. K., & Artis, J. E. (1997). Women’s caregiving and paid work: Causal relationships in late midlife. Journal of Gerontology: Social Sciences, 52B(4), 170–179. 25 Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879. 26 Metropolitan Life Insurance Company, & National Alliance for Caregiving. (1997, June). The Metlife study of employer costs for working caregivers. Connecticut: Metropolitan Life Insurance Company. 27 Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879. 28 Press Release (2002, August). Reverberations of family illness: A longitudinal assessment of

  informal caregiving and mental health status in the nurses’ health study. American Journal of Public Health. 29 Ibid. 30 Ibid. 31 Marks, N. Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667. 32 Ibid. 33 Gallant, M. P., & Connell, C. M. (1998). The stress process among dementia spouse caregivers: Are caregivers at risk for negative health behavior change? Research on Aging, 20(3), 267–297. 34 Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C. L., Kuerbis A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413. 35 The Commonwealth Fund. (1999, May). Informal caregiving (Fact Sheet). New York: Author. 36 Langa, K. M., Chernew, M. E., Kabeto, M. U., Herzog, A. R., Ofstedal, M. B., Willis, R. J., et al. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16(11), 770–778. 37 U.S. Administration on Aging. (2000). Older Women (Fact Sheet). Retrieved (April 3, 2003) from www.aoa.gov 38 Older Women’s League. Women and long-term care. Retrieved (April 3, 2003) from http://www.owl-national.org (a wonderful website) 39 Lee, S. L., Colditz, G. A., Berkman, L. F., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119. 40 Ibid. 41 Ibid. 42 The

  Commonwealth Fund. (1999, May). Informal caregiving (Fact Sheet). New York: Author.43 Marks, N. Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667. 44 Ibid. 45 Women’s Institute for a Secure Retirement. (2002, November). Minority women and retirement income: Your future paycheck, pay, Social Security, pensions, savings and investments. Washington, DC: C. Hounsell. 46 The Commonwealth Fund. (1999, May). Informal Caregiving (Fact Sheet). New York: Author. 47 Ibid. 48 Gallant, M. P., & Connell, C. M. (1998). Research on Aging, 20(3), 267–297.49 National Alliance for Caregiving, & AARP. (1997). Family Caregiving in the US: Findings from a National survey. Washington, DC: National Alliance for Caregiving & AARP. 50 Whittier, S., Coon).

• An "Article-related" letter you should see

Gentle Tips for the Aging Journey By: Rebecca “Beck” Schubert

Lately I have encountered in others some of the same anxieties about aging that I have experienced in my own life. Aging is not for sissies. It takes a strong spirit to move through the natural aging process with grace and a sense of personal peace with oneself and oI ne’s surroundings. So I went looking for a book, as I often do, that might give me some soul food for this journey that my body has planned for me. My search led me to a small and gentle book by Doris Jones titled “And Not One Bird Stopped Singing.” This book is a deeply spiritual reflection of Jones’ feelings as she and her mother do the very human dance of changing places. As Jones points out, it is impossible to move through this emotionally challenging time without reflecting on our own aging process. Jones’ book shares her mother’s decline The stress process among dementia spouinto Alzheimer’s disease and the resulting change as she shifts from the role of daughter to that of “mother.” Jones surrounds this journey with reflections of her caregivers: Are caregivers at risk for negative health behavior change?  Fears and anxieties regarding her own eventual loss of control due to the natural process of aging. Her vulnerability is striking as she shares the loss of her husband and her feeling of loneliness. Jones holds nothing back, sharing her heartaches as her life experiences present yet another loss. The author’s once dainty and fastidious mother moves from her role of mother to that of “daughter’s child.” The woman once called Mother has now been betrayed by her body and appears to be alone in a world in which her daughter feels the only way to connect is to join her in stories of 40 and 50 years ago. The description of the decline is very real as Jones shares the pain of the role reversal. As I read, I became aware of something I had been mulling over in my mind but had never verbalized. Just as no one gave anyone my age a class on parenting, neither do I remember being offered a class on this sort of role reversal. As the author moves through the book, she reflects her feelings with vulnerability, humor, and anger, and she allows us to share her spiritual walk. Yes, I said anger. Many of us don’t want to admit it, but anger and resentment are some of the feelings we can identify as we move through the aging process. Although many of us move through aging with great grace, most of us have some irritation and even anger as we reflect on our parents’ aging. A few years ago, one evening while manicuring my fingernails, I made an amazing discovery. I remember saying out loud to my husband, “Honey, how did my mother’s hands get on my body?” The following summer, when I was trying on some summer shorts, I turned to check the fit in the mirror, and to my amazement found that Mom’s legs had also moved to my body. Youth was gone, and I had never said it was OK for it to leave. Middle age had me strongly in its grasp and I had missed the move from one life phase to another. The feeling and experience of loss of control over my body were tremendous. Don’t get me wrong; I have no problem with aging. I just don’t want to lose control! During years of experience as a chaplain to the aging and dying, I have found very few people who want to give up control. This is our greatest fear. So, how do we prepare? The spirit has great possibilities as a partner for the aging journey. The depth of support found in our spirit can help us move through almost anything. Just as daily exercise, vitamins, and healthful eating provide the best chance for our body to stay healthy longer, so too, does our spirit need exercise. However, the spirit is not accessible if it has not been exercised and developed over the life journey. + Aging is a time when intellectual knowledge takes second chair to the knowledge of spiritual wisdom developed over a lifetime. Spiritual health comes with daily meditation, time alone in the garden to commune with nature, and yoga or Pilates. All of these programs support a spiritual focus as a path to a healthy spirit. But I would like to share another path to healthy aging—one proven to be fruitful over thousands of years. That is sharing your story with the next generation. If we take time to share our story with those who are younger, it is just possible that we may help them with their future anxieties about the aging process. Allowing youths into the vulnerable world of aging, and making them partners with us, will go a long way toward turning the fears of the aging process (and of loss of control) into a gentle movement toward a more acceptable, natural stage of the process of life. Beck Schubert, MA, BCC, is chaplain at Grace Hospice.