Women As Caregivers: The Impact on Life and Retirement

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The Caring Generation® – Episode 131 March 30, 2022. Pamela D Wilson discusses the challenges faced by women as caregivers that affect health, well-being, and financial security through life and in retirement. Dr. Katherine Ornstein from Mt. Sinai discusses a recent research article, Kinlessness at End of Life and why more women than men have no one to care for them. Have a question?

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Today, the topic is women as caregivers. Fair warning, this topic may have you feeling a little uncomfortable because I will be posing questions about your job and career, the ability to be financially independent, and the effect on family life. These are all topics to be considered in the broader term of planning your life.

Women As Caregivers

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Statistics About Women As Caregivers

There are a lot of statistics about women as caregivers. For those interested in the research, there are article links here to read the entire story. I communicate with female and male caregivers in my caregiver support groups and individual consultations. Women, by far, feel more stressed and financially constrained than men. This discomfort may be because women—due to time out of the workplace—feel that they have less control over their financial matters.

So today, we will talk about women as caregivers and look at how family caregiving responsibilities financially affect the ability of women to be self-sufficient. To elaborate on the topic of needing care for women who never marry or have children, Dr. Katherine Ornstein will be sharing her research article A National Profile of Kinlessness At the End of Life Among Older Adults.

You can read the article if you navigate to The Caring Generation podcast page on my website pameladwilson.com. Go to the top bar, look for the word Media, scroll down to The Caring Generation podcast and look for episode 131.

About Dr. Katherine Ornstein

Dr. Katherine Ornstein is an Associate Professor in the Department of Geriatrics and Palliative Medicine and the Institute for Translational Epidemiology at the Icahn School of Medicine at Mount Sinai. In addition, she is the research director for the Institute for Care Innovations at Home at Mount Sinai. Dr. Ornstein is currently leading several N.I.H. and C.D.C.-funded research projects on caregiving.

She received her B.A. cum laude from Duke University, her M.P.H. from UNC-Chapel Hill, and a Ph.D. in epidemiology from Columbia University.  Dr. Ornstein has two children and is a caregiver for her father, who lives in New York City. Dr. Ornstein is a returning guest to the program. If you’d like to listen to our prior conversation, search for The Caring Generation podcast episode 58, called How to Get Elderly Parents to Accept Help.

Family Expectations for Women vs. Men

So let’s set the stage for the discussion of women as caregivers. I am pro-women in all aspects of life while, at the same time, I recognize the role of men. Life is a different journey for everyone with different experiences based on where you live, family life, education, income, etc.

Men are expected to work hard to support their families. Women are expected to be family caregivers through their ability to have children, plus the past history of women caring for aging parents and other family members.

What Women Caregivers Can Expect

Research from two studies is shared throughout this program: the first Women and Caregiving Facts and Figures.

The second: What Comes After Caring? The Impact of Family Care on Women’s Employment by Ulrike Ehrlich.

Both are excellent sources of information for women who want to consider the potential effects of caregiving on their lives. So let’s start with some statistics from the Women and Caregiving Facts and Figures report.

  • Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (S.S.I.)

I think it’s shocking and regrettable that women who care for other people all of their lives are more likely to live in poverty due to giving up the ability to earn and save income for their retirement years. While there may be a belief that the government takes care of older people, this is not always true to the degree you might think.

Why Women Live at the Poverty Level

This conversation about women as caregivers may have you thinking more seriously about the financial value of remaining in the workforce. Let’s begin with the statement that women are five times more likely to receive S.S.I. Why is this?

S.S.I. is not social security retirement income. S.S.I. means Supplemental Security Income Program. To learn more, download the Social Security S.S.I. Annual Statistical Report for 2020. So S.S.I. is an income payment from the government for disabled, blind, mentally ill, and other adults who are unable to work or who can work a limited amount. However, if you work, your S.S.I. benefits are reduced.

Now you might be thinking, woohoo. Money from the government for being unable to work. Don’t get too excited. First, you have to qualify, and second, the average monthly payment according to Social Security in December 2020 was $576 per month. So not a lot of money.

Here are a few other statistics from the S.S.I. Annual report:

  • The majority of S.S.I. recipients in 2020 were female at 52%
  • 14% were under the age of 18
  • 57% were aged 18 to 64
  • 29% 65 or older
  • 60% of recipients under age 65 were diagnosed with a mental disorder
  • 57% of S.S.I. recipients had no income other than their S.S.I. payment
  • 33% received social security benefits

Why is this important? A health issue can result in anyone of any age being unable to work or if you were working to perform a similar job. As a result, if you qualify, you can receive income from the government but at a low amount.

Can Family Caregivers Be Paid?

Some family caregivers are interested in becoming paid caregivers for elderly parents. While this is a good option for some family caregivers who may not be working, long-term financial trade-offs exist.

In some states, the Medicaid program offers options for family caregivers of the elderly who are on Medicaid to be paid as a caregiver. One state is Illinois, where the website reads:

  • If the work of these family caregivers had to be replaced by paid home care staff, the estimated cost would be $45 to 94 billion per year.
  • Eighty-five percent of all long-term care services are provided by unpaid caregivers – which means family caregivers.

Why is this important or relevant? Is paying family members to be caregivers a financial incentive saving the government billions of dollars on more expensive Medicaid programs? Do these programs intend to shift the care burden from the healthcare system to the family?

The Effect of Government Programs on Women as Caregivers

women as caregivers

One example of a state Medicaid family caregiver program is in Colorado. The program is called CDASS (cash and counseling), and family caregivers are paid around the minimum wage or more in some cases. Elderly parents must qualify for the state Medicaid program.

The benefit of these programs is peace of mind for some families who want to care for their loved ones at home.

European countries have begun studying the effects of these programs. The research article linked to this podcast transcript investigates the likelihood of women re-entering the workforce or increasing working hours after ending the responsibility of being family caregivers.

  • According to the report, 12 European countries confirmed that women do not increase hours worked after caregiving responsibilities end.
  • Many women never re-enter the workforce due to a lack of skills that make them re-employable.
  • Additionally, women’s post caregiving employment depends on health quality, which for many caregivers is worse than before becoming a caregiver.

Where is the Bright Spot for Female Caregivers?

These statistics can paint a bleak picture for women who might spend most of their lives in unpaid family caregiving roles versus in a formal paid work environment. So, where is the bright spot for women?

The bright spot is knowledge. Learning all you can about the financial effects of caregiving allows you to decide whether to become a caregiver. So you choose your life path instead of assuming that becoming an unpaid family caregiver is your only role.

Education and knowledge offer choice. Be the person with facts and research who initiates discussions in your family about caregiving.

Becoming a Caregiver is a Financial Decision With Long Term Impacts

Let’s look at a point of comparison. Would you buy a car without listing out the associated costs? For example, the car’s purchase price, sales tax, car insurance, gas, oil changes, and maintenance.

According to A.A.A., the American Automobile Association, the average cost of owning a new vehicle is $9292. This cost includes depreciation and interest on car loans.

Buying a car is a significant financial decision, like buying a house. Likewise, becoming a caregiver is a financial decision. Having children or caring for aging parents are life-changing decisions.

I know that most families don’t like to relate caring for aging parents as a financial decision, but caregiving responsibilities instead of paid employment has a cost. Choosing to be self-sufficient by remaining employed and taking care of your health so that you won’t need as much care later in life is a financial decision.

What Does Living in Poverty Look Like in the U.S.

We may hear the term poverty and not know what it means. You can learn more through the link to the 2021 Report: Poverty Among the Population Age 65 and Older.

  • For example, people aged 80 and older have a poverty rate of 11.1%, with women representing 13.6 of this number.
  • For one person in 2021 in the Washington DC area, the poverty rate was $12,880 for two-persons
  • For two people, the poverty rate is $17,420.
  • The annual poverty income translates to $1073 and $1451 per month.

Comparing Poverty to Social Security Income

Let’s look at poverty levels in comparison to social security. An AARP Article, How Much Will I Get From Social Security, estimates that in 2022 the average social security retirement benefit is $1657 per month.

This rate depends on the number of years you have worked, your annual income, and your contributions. To qualify for social security and Medicare, you need at least 40 quarters of paid employment at a minimum of $1470 per quarter in 2021.

So, if you are a woman who has been out of the workforce most of your life, your monthly social security payment could place you at the poverty level. If you receive income through a state Medicaid program, that income may not generate enough income to raise you above the poverty level in retirement.

The Importance of Becoming Financially Independent

Giving great thought to education supporting career advancement is essential for everyone, especially women. Remaining consistently employed helps women to be financially independent in retirement.

I talk to many women and men who struggle when they become caregivers and cannot work because of time devoted to the care of aging parents. Some spouses rely on a sick spouse’s income.

This is a challenging place to find yourself. You may want to end caregiving responsibilities, but you have no income and no skills to re-enter the workplace, so you’re stuck.

Solutions for Women as Caregivers

How can women talk about and decide whether to become family caregivers?

  • Recognize the impact of post-high school education on your ability to get a better-paying job that transfers into a long-term career, generating income you can save for retirement.
  • Talk to a financial planner about saving for retirement.
  • Understand the availability of long-term care insurance, life insurance, disability, and catastrophic health insurance plans.
  • Learn about health and the benefits of health prevention activities.
  • If you have health insurance, be proactive in getting annual checkups, vaccinations, and preventative screenings like mammograms.
  • Ask your parents if they have a plan for when they need care. For example, how much money have they saved?
  • Know what Medicare pays for and doesn’t pay for when older.
  • Understand the time you must work to be eligible for Medicare and social security.
  • Understand how legal planning links to health care and money later in life.
  • If you plan to be out of the workforce to be a family caregiver, create a plan to re-enter the workforce and what this might take. For example, will you need to go back to school to learn new skills? If so, how will you pay for that education?

Education and being consistently employed throughout life reduce the likelihood of living in poverty in old age. Waiting until years down the road to investigate and understand the impact of family caregiving results in fewer years to plan ahead. Time is money when considering retirement planning.

Being Without Family at the End of Life

This interview with Dr. Katherine Ornstein gives insights into what life is like for individuals who have no spouses or children at the end of life to care for them. These individuals are defined as kinless.

Pamela D Wilson: Dr. Ornstein, thank you so much for joining me.

Dr. Katherine Ornstein: Thank you for having me.

Pamela D Wilson: Your research study was about caregiving needs at the end of life. And it explicitly addressed older adults who are kinless. How is kinless defined for your research, and what percentage of people in the United States are kinless?

Dr. Katherine Ornstein: Great question to start with, and that’s because kinless is actually a tricky term. It’s not one that I love. What it means is individuals who lack traditional family relationships. In gerontology, we use this term and others like it. So, unbefriended or elder orphans sometimes really try to get at individuals who are aging without family available to help. So the reason we look at this population is because family is so integrally involved in caregiving.

And the population of kinless are growing. So in this study, we specifically used the term kinless. We define it specifically as those who have no spouse or partner or any children. And that’s because those are the most common family members. According to our study, we found that at the end of life, more than 7% of adults in America were kinless.

Study Participants

Pamela D Wilson: Can you talk about the background of the people who participated in the study, so, for example, where they lived. Were they male or female etc.?

Dr. Katherine Ornstein: This was actually a nationally representative sample in the U.S., so it sampled individuals who are adults over 50 throughout the U.S., And we’re looking at all deaths that occurred between 2002 and 2015. So it’s really looking at throughout the U.S. what is the experience of individuals who die relative to their family.

And, you know, unsurprisingly, the kinless differed from those with kin with respect to gender, race, finances, Medicaid, and living arrangements. So, for example, we found that women tended to experience Kinlessness at higher rates than men, more like 8%, and again not surprisingly, the majority of women, when they died, did not have a spouse.

Almost three-quarters of women did not have a spouse or a partner when they died, whereas, for men, only 41.9% of men did not have a spouse. And again, we also saw differences related to race. The kinless are more likely to be from racial and ethnic minority groups. They were poorer. They were also more likely to live alone and to live in nursing homes.


Pamela D Wilson: And do you think, and this is like a separate question but is the is the higher population of women who are older and kinless, does that kind of relate to the fact that women tend to live longer than men.

Dr. Katherine Ornstein: Yes, there are many demographic patterns that are factoring in. It’s also because we tend to see women marrying older men as well, in addition to women outliving men and then more likely to remarry after losing a spouse or divorcing. So all of that factors in. And we also do see that women are more likely to have children when they die than men are.

How Are the Kinless Different?

Pamela D Wilson: Talk about the commonalities you found in the kinless group specific to health conditions like dementia and their ability to participate in daily activities.

Dr. Katherine Ornstein: So what was really interesting is what we found is that the kinless in some way were healthier. They had a fewer number, if you just counted the number of comorbidities they had, they were less. They also, we didn’t actually find differences in self-reported health, which is actually a very important marker of people’s health. Whether they say, it’s poor or otherwise. We did not see differences relative to dementia status or limitations in functions related to activities of daily living.

Pamela D Wilson: Was there anything, any indicator, about why they were healthier? To me, that sounds kind of contradictory, I guess.

Dr. Katherine Ornstein: Yes, well, right. I think it speaks to a lot of things. In some ways, there’s potentially a survivor bias of the people that might survive to an older age. They are somewhat stronger and healthier as they have not died despite not having a family. So that’s potentially part of it, and I think it also gets at the problem with looking at kinless—traditionally kinless. Because that suggests that only spouses and children are caregivers.

And while spouses and children do the majority of caregiving, they don’t do all of it. So we really need to think of other family as well as other friends. You know really looking at non-traditional care and sort of seeing how those social networks are extended.

And not surprisingly, we did see that the kinless seem to be more social. So suggesting that they may not have children or be married, but they have other social resources. So I think that that really speaks to an important lesson of this study is that maybe we should not be only measuring kin as spouses and children.

Pamela D Wilson: Well, and that’s a great point, because people who would live without spouses and children would kind of, in a sense, do more, be more social, so that does make more sense.

End of Life Care for the Kinless

Pamela D Wilson: So let’s talk about end-of-life care and hospice which is becoming more common for people. Were there differences in places of death for kinless adults versus people who had family that were on hospice?

Dr. Katherine Ornstein: So we actually did not find a difference in hospice enrollment, and we thought there would be. We thought that individuals who had family would benefit and be more likely to have hospice, but we did not find these differences. However, we did find that those traditionally kinless were twice as likely to die in nursing homes.

Even when we looked at people who had not been living in a nursing home for a year before their death. And there was also more likely for the kinless to die in a hospital setting versus their home. And then importantly, we find that kinless seemed to be receiving total fewer hours of care. So they are getting less care, family or unpaid caregiving.

Is Kinlessness Likely to Increase in the Future?

Pamela D Wilson: And so I know that there are a lot of solo agers today. Are we seeing any demographic trends that kinlessness will increase in the future?

Dr. Katherine Ornstein: I think that seems to be the suggestion. And importantly, this isn’t just a U.S. issue. This is something that we’ve been thinking about globally. Other researchers have estimated rates of Kinlessness to be higher than in the U.S., more like 11% in Canada, Ireland.

Kinlessness rates are projected to increase, and it makes sense relative to changing family structures. So different preferences about family formations. We see people not having children, not being partnered. We also see declining rates of marriage and fertility as well as increasing rates of divorce among older adults.

So the divorce rate has actually been declining in the U.S. since the ’80s, but for older adults, it’s actually been increasing. And we’re also seeing increases in childlessness in the U.S. So as demographers have actually estimated that there will be more of traditionally kinless older adults in the U.S. And so I think that’s really an important point, it’s not just what’s happening now, but in twenty to thirty years, what will this mean for end of life care and hospice care and our support systems.

Hospital vs. At Home Deaths

Pamela D Wilson: There was a sentence in your research article. It said many patients may have wanted and indeed benefitted from in-hospital deaths. Can you explain that?

Dr. Katherine Ornstein: Yes, so we focused on where people died as an outcome. And that’s because in the U.S., as well as everywhere, people say that they want to die at home. That’s what people say. And it’s still not the majority of the case. And hospital deaths are considered more treatment intense, and so we often think of that as not high quality. But I think that’s not necessarily true.

While most people say that they don’t want hospital death that may not actually mean that it’s not appropriate or beneficial for the patient. It also does not mean. We don’t know in this study what a patient wanted. So their preference may have been to have a hospital death. It may have been the family’s preference as well.

So we’re sort of making some assumptions here about what people want, and I think it’s just an important thing to think about. Relative to considering who wants hospice, who wants to die at home. Who wants to not be in a nursing home. There are differences and preferences for care.

Pamela D. Wilson: And so the term in-hospital death could that mean in hospice in a hospice facility death or is it just hospitals only, period.

Dr. Katherine Ornstein: We look at hospice sort of as admission to hospice, whether it’s in a hospice facility or in a person’s home. So most hospice is within the home.

Pamela D Wilson: Okay, thanks for clarifying that.

Dr. Katherine Ornstein: Yes, sure.

How Can Everyone Prepare for Aging and End of Life?

women as caregiversPamela D Wilson: You were talking about 20 or 30 years from now, what is all of this going to look like. So separate of the healthcare policies and the healthcare system, what can people do today, especially if they are kinless to become more knowledgeable and prepared for the care they might need at the end of life.

Dr. Katherine Ornstein: That’s a really important point, and I think yes, there is a lot that the policy and healthcare systems can do. We really, as individuals, have to try to advocate for ourselves and really think ahead. I think discussing preferences for care earlier with families of loved ones and friends is really important. In really thinking about that, engaging early. Talking to friends and caregivers about what we want to do and what we do not want to do is helpful.

And making our arrangements earlier is important. We do need to recognize that wishes can change over time. But really thinking things through and part of thinking things through for those who can is thinking through financially, what will happen? What the needs are? What we want? And I think this is true for those who have children and spouses and those who don’t. We really need to think about it.

Dr. Katherine Ornstein: Because just because somebody has three children, that doesn’t mean any of them live close by. Any of them want to or are able to be caregivers, necessarily. So I think it’s really for everyone to think of. But I think in general earlier engagement is hospice is likely beneficial for all to sort of get the support systems in place that people need. As well as more upstream earlier palliative care.

Research Recommendations for Family Caregivers

Pamela D Wilson: Is there anything else from your research that you’d like to share that I haven’t asked you about?

Dr. Katherine Ornstein: Yes, I think really the bottom line from my research is that we have to think about providing really high-quality end-of-life care regardless of what family individuals have. We really need to think about it. It can’t be that you’re just lucky enough to have several daughters who are readily available to support you. We really need to think about it.

But I do want to point out that there is this concern about the kinless as very vulnerable. And I think we need to think that through a little more. These findings suggest that kinless may be more socially engaged. I think terms, really negative terms like elder orphans are not helpful to anyone.

I think we really need to think about what people want. And to really start looking into the non-kin or the non-traditional social networks and how that can support older adults so that people have those around them that they want that can benefit them. Especially at the end of life.

Pamela D Wilson:: Thank you so much for your time. I really appreciate it.

Dr. Katherine Ornstein: Thank you.

Creating Your Bright Spot

 If you are a family caregiver, you may find yourself in one or more of these situations. For example, you may be early in the stages of being a caregiver deciding that this role is no longer for you.

Or you may have been a caregiver for years deciding that you have put in your time and it’s time to move on with your life minus caregiving responsibilities. Maybe you have to regain job skills and look for a job.

On the other hand, you may be the person who needs care and has become dependent on a family caregiver who now wants to end the caregiving relationship. As a result, you may need to plan for other care options, including end-of-life care.

These life situations can be stressful and scary because of the unknown and unpredictable. But you will never know how your life might change for the better if you don’t create necessary changes.

The best way to move forward is to be realistic about your situation, even though facing reality may be unpleasant. If necessary, work with a life coach, a counselor, or a caregiving expert who can give you insights to help you create a plan that you can implement.

Take it one day at a time. Maintain a positive attitude. Do your best, to create a bright spot in your life and a path forward.

family caregiver support programsIf you are interested in more podcasts about women as caregivers, check out these episodes of the Caring Generation: What to Do When Work and Caregiving Collide, and How to Keep a Job and Care for Elderly Parents. 





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About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.

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