Are Family Caregivers Invisible?

04.09.2013, 12:23 PM

Sheri Snelling writes an insightful piece on the current face of elder caregiving in the work place:

“Here is what we know today: 7 out of 10 caregivers work full or part-time and represent more than 15 percent of our entire U.S. labor force. We also know over the coming years our society faces a longevity silver tsunami where we are all living longer and more baby boomers are holding onto their jobs, putting off retirement while simultaneously caring for aging parents and spouses. And it isn’t just a boomer issue — Pew Researchrecently reported 42 percent of the younger Gen Xers are Sandwich Generation caregivers than their baby boomer counterparts (33%). All this has created an evolution at work — one where workers are more concerned about elder care than child care.

A challenging aspect for working caregivers and their employers is that caring for an older parent or ill spouse is not a joyful event; you don’t come to work with smiles and stories like you would if you were pregnant or just became a grandparent for the first time. In addition, in an era where the economy remains on life support, many employees are concerned about identifying themselves as caregivers, fearful for their job security. A report by the National Alliance for caregiving found 50 percent of working caregivers are reluctant to tell their supervisor about their caregiving responsibilities. In addition, the Shriver Report: A Woman’s Nation Takes on Alzheimer’s found 46 percent of female employees asked for time off for caregiving and could not get it forcing them to make a choice between elder care and employment.

There are two problems with this situation: 1) Caregiving employees are forced into the closet — mirroring the gay rights issues over the last few decades where lifestyle remained a secret out of fear of reprisal; 2) Employers who don’t hear or understand the personal lifestyle challenges facing their employees cannot be called upon to institute programs and work environments where these employees can get support to stay on the job, be productive and remain healthy, thus continuing to positively impact the company’s bottom line.” Read more…

She goes on to point out that the average elder caregiver is 50 years old, a population that will soon comprise one in four people in the workplace in the next seven years.  She also fails to mention that the sandwich generation, soon to be defined by 50-year-old Gen Xers will also be caring for an unprecedented number of divorced and/or remarried elders–thus TWO plus households to manage, TWO plus financial outlooks to tend, TWO plus people to shepherd through doctor’s visits etc.  Snelling points out that there are good awareness-raising initiatives happening but the prescriptive arm to that awareness is lagging.  It will be interesting to see who becomes the employers of choice in the age of long-term elder care.


26 Responses to “Are Family Caregivers Invisible?”

  1. Diane M says:

    I am very concerned about the problem of caring for divorced elderly parents, but I want to point out that one caregiver won’t be the only adult responsible for the two-plus elders.

    1. Most couples had more than one child.

    2. Step-parents often have children of their own.

    3. This is just anecdotal, but it seems to me that people who divorce and remarry often go on to have another child or children.

    There are huge issues involved about who is responsible and how to work with people you may not like, but there should be more than one person to shoulder the burden most of the time.

  2. Diane M says:

    Basically, the current situation is unworkable.

    We need to either start paying people to stay home and care for seriously ill and disabled parents or

    we need to pay for long-term care for the elderly.

    We’ve moved from a generation where women cared for their parents to one where women are wage earners. Women tend to take time off or cut back on paid work in order to raise children, but very, very few women can afford to do that permanently.

    For generations, the care of our elderly was subsidized by women working for free. We have to figure out a way to replace that care.

  3. Matthew Kaal says:

    Diane,

    It may be true that for some step-families there are many children to take responsibility for aging parents and step-parents; but I know in some families, like my Dad’s, my grandfather’s second marriage occurred late in life to my step-grandmother who had no children of her own coming into the relationship. It is now an open question as to what our family’s relationship is to my step-grandmother because my grandfather passed away several years ago and we never got close to her in the way we were to him. (Complicating this further, my immediate family lives 6,000 miles away from the rest of the family, so my Dad is less able to engage one way or another.)

    I think ultimately this becomes a question of what obligations step children and children from fractured families have towards parents they were separated from (in the case of estranged divorced families) or who came into their lives later on (step-parents). And how does society encourage the fulfillment of those obligations in ways that give life to all involved.

  4. Amy Z says:

    Another piece to add to the discussion is the role of the “primary caregiver.” I haven’t researched this but based on my experience in hospice there is ONE person who steps up to truly carry the burden of caregiving or of coordinating the constellation of people willing to be of some level of assistance. For example, in order to be admitted into hospice you MUST have TWO things: a doctor’s order stating that the prognosis for your disease is 6 months or less AND a primary caregiver (ONE person). That primary caregiver may be next of kin but we don’t really care as long as that person signs the admission paperwork. It’s lovely that you may have more than one caregiver so to speak, but we look and must have ONE person who signs on the dotted line saying, “I am responsible.”
    I also want to say that it’s hard for me to imagine that I haven’t seen at least 75% of every constellation of family system that could exist, and caregiving can work in all of them and caregiving can blow up like family systems potato in the microwave in all of them. Emotional maturity and stability are at a high premium in them all and so I tend to look for what systems show the highest probability for maximizing maturity and stability with the least amount of assistance from professionals. (that’s the COO in me trying to balance our staff time to family dysfunction ROI)

  5. Diane M says:

    @Matthew Kaal: This sounds to me like something where religion might end up encouraging a higher sense of obligation than society in general.

    “I think ultimately this becomes a question of what obligations step children and children from fractured families have towards parents they were separated from (in the case of estranged divorced families) or who came into their lives later on (step-parents).”

    I don’t think you can expect people to be obligated to care for someone who has never cared for them. You don’t owe anything to a parent who left and then had nothing to do with you. If they sent you support, you owe them that. Similarly, you don’t owe something to a step-parent who came along later in life.

    On the other hand, many people who don’t owe something to an absent parent might still care about them and want to take care of them. Similarly, adult children might feel grateful to a step-parent for having made their own parent happy.

    I suspect that in practice who the adult children blame for the divorce will matter. Nasty divorces might also make adult children less likely to care for their parents or step-parents.

    I would expect religious teachings to encourage people to go beyond what they owe, however.

    “And how does society encourage the fulfillment of those obligations in ways that give life to all involved.”

    This I think will be hard.

  6. Diane M says:

    @Amy Z – In my somewhat limited experience, families caring for aging relatives don’t start out with one designated primary caregiver. Different people play different roles and the roles can change over time. Talking and figuring it out is more than challenging and is not always nice.

    Before people get to hospice, they may need care for years. They also need more and more care over time. It’s really more than one person or family can do.

    In practice, there may be one person who ends up doing the most, but this does not make them happy!

    (There are times when I think we should have had six kids to handle our care someday.)

    The other thing is that if you end up in a situation where you have two divorced parents, you could make your brother the primary caregiver for one of them and yourself the primary caregiver for the other. You don’t have to become the primary caregiver for both or all of them.

  7. Amy Z says:

    In looking at the research that Elizabeth and I have been doing with 30-40 year-old caregivers whose parent or stepparent died a year previously we have seen that religious belief does motivate people to care for someone who is now vulnerable who did not care for them when they were vulnerable (either because their parent wasn’t married to that person when they were a child or due to negligence on the part of the biological or step parent). When faced with the question of “reciprocal care” or “will I care for someone who did not care for me?,” the concept of mercy is huge. Espousing a religious belief in a merciful God and seeking to practice merciful behavior can be a strong motivator but also can contribute to immense guilt when geographical, physical, financial, or emotional constraints limit the level of service that can be provided.
    On a tangential note, I’ve actually thought about this concept in light of our society’s seeking civil engagement–what does it mean to be merciful in a transactional culture?

  8. Matthew Kaal says:

    Diane,

    I don’t think you can expect people to be obligated to care for someone who has never cared for them.

    But this happens all the time. Parents do this, siblings do this, teachers, doctors, emergency service providers – they do this. I think it is possible to view obligation as something other than transactional (you do this, I do that), and that this is often woven into the structure of roles in society.

    I grant that it gets more complicated in cases of divorce and step families where adults who may not have a history of loving each other suddenly find themselves dealing with an end-of-life situation that demands time, commitment, and a ton of emotional energy. So I think we need to work towards helping fractured and re-constituted families define the roles of all members towards each other and to encourage individuals in these circumstances to make a plan and work together. I agree that civil society institutions like religious organizations play a vital role in acculturating a sense of charity and selflessness towards others (even those who might not deserve it), and to be a buttress when the reality of messy families prevents the ideal of end-of-life family care-giving from going smoothly.

  9. Amy Z says:

    Great points Matthew (and Diane!) and I actually thought of the title of my post “Are family Caregivers Invisible?” because all the roles you mentioned have some sense of honor attached to them in their role of serving those in need–whether that comes in a uniform they wear, a sense of comeraderie they feel with fellow firefighters or AMA members or teachers, they have “appreciation” weeks, they go to formal schooling where value is attached to the service role they play. Even parents put cute pictures of their kids on their desks and get a Mother’s Day and Father’s Day. Perhaps, siblings get the shortest end of the stick, which my kids would gladly attest to!
    But I think the article reminds me again that we need to find ways to attach honor to the role of elder caregiver, which as Diane points out can last for many, many years at varying levels of support and in crises of all shapes and sizes. Where’s the uniform? Where’s the school? For example, my mom (who cares for in-laws and a mother) is considering enrolling in a certified nursing assistant program which will help teach her basic adult caregiving skills.

  10. Diane M says:

    @Matthew Kaal – I don’t think those are good examples of people caring for someone who has never cared for them.

    “But this happens all the time. Parents do this, siblings do this, teachers, doctors, emergency service providers – they do this.”

    Teachers, doctors, and emergency care providers are all paid to take care of someone.

    Parents have taken on the responsibility of raising the children by creating them. In addition, we naturally develop strong bonds with children we give birth to or raise.

    Brothers and sisters usually have a shared history and sense of being part of the same family unit that works together. Caring for each other may not always be fully reciprocal, but you expect that they would do the same for you, if you needed it. They are part of your emergency safety net.

    “I think it is possible to view obligation as something other than transactional (you do this, I do that), and that this is often woven into the structure of roles in society.”

    I also think we can see obligation in many different ways, but I think outside of religion, it is often mostly transactional in modern day American.

    I happened to discuss a related issue recently. There is a theory that people give mostly to people within their group, not complete strangers. The idea is that you can expect that you might someday get something back from what you give. It’s a sort of non-altruistic giving that looks altruistic.

    I think people can and do go beyond that, but I think giving that might get you something someday is probably more common and easier for humans.

    Going back to the question of step-parents – one of the challenges I see is that a step-parent is not someone you choose to take into your family. At the same time, if they didn’t raise you, you don’t have a sense of connection to them. Is it really fair to say that you are obligated to take care of someone because your one of your parents chose to marry them?

    Absent parents are more complicated because they may or may not have wanted to be involved in your life.

    I have a hard time saying that someone owes something to a person who didn’t live up to their obligations to you when you were a child.

    Perhaps I don’t like the idea of obligation at all. I don’t really like saying you owe your parents care or you are obliged to provide it. I would rather have people love someone and want to give them care.

  11. Mont D. Law says:

    A couple of things. First anybody that is paid to provide care, teachers, doctors, emergency service providers are paid to do so and their relationship is almost completely transactional. Any extra thing they do is directly related to the original transactional relationship.

    I suspect to that these caregivers are mostly women. Daughters more than sons. This means women, who already work the second shift and sacrifice career and retirement earnings to take care of children are being penalized further.

  12. Diane M says:

    @Amy Zeitlow – “For example, my mom (who cares for in-laws and a mother) is considering enrolling in a certified nursing assistant program which will help teach her basic adult caregiving skills.”

    This just hits me in the gut. What your mom is doing is great.

    What I can’t help thinking about, though, is that most caregivers can’t even begin to afford to do something like this.

    Having seen what Alzheimers means, I don’t know how families can survive it if all the possible adult caregivers need to earn wages.*

    I am very afraid of what the health crisis could look like in the future without stable jobs and families.

    I find myself imagining grim nursing homes and Star Trek episodes about societies where the old are expected to kill themselves.

    (*Families that earn high wages can hire someone, of course, but they technically don’t all need to earn wages.)

  13. Diane M says:

    @Mont D Law “This means women, who already work the second shift and sacrifice career and retirement earnings to take care of children are being penalized further.”

    Yes, and it gets worse. This is like a third shift – earn money, care for children, and somehow take care of an adult who is becoming increasingly child-like.

    At a certain point it’s not a penalty, it’s just impossible.

  14. Matthew Kaal says:

    Diane and Mont,

    I think the willingness to run into gun fire, a burning building, a disaster zone, or (at a less extreme level) 30 years of a third grade classroom – is more than transactional (at least, my relationships with professionals doing these kinds of jobs has always born that out. Especially the teachers I’ve worked with).

    Now you are right that some of our sense of duty and obligation may be tied to our sense of community or tribe. This is likely true of many of the professions I listed, as well as military professions.

    Getting back to Diane’s original question, I guess I don’t have a definite opinion if an obligation exists between kids and their parents (and step parents), I think it is something to explore as a society, especially because it isn’t transactional. I think the idea of obligation to one’s elders, and more broadly, to the tribe, is well established in many societies, and that this sense of duty and honor is beautiful in its aspirations.

    Mont, I would hate to live in a society where the aging are forced to contemplate those options. My hope is that civil society organizations re-emerge over the next few decades to meet the needs of an older society.

  15. Diane M says:

    I’ve decided I prefer the word “responsibility” to “obligation.” I feel responsible for my mother’s care. I don’t like the idea of owing something.

    This is mostly an emotional preference, I think. I don’t know how other people would feel about it, but it might be a useful thing to consider the different words.

  16. Mont D. Law says:

    (I think the willingness to run into gun fire, a burning building, a disaster zone, or (at a less extreme level) 30 years of a third grade classroom – is more than transactional (at least, my relationships with professionals doing these kinds of jobs has always born that out. Especially the teachers I’ve worked with).)

    But the fact is if no one was paying them they wouldn’t doing that job. So it’s at it’s core transactioal. Gun fire, burning buildings and disaster zones are what first responders are paid to do. Them doing so is not above or beyond the call of duty. Teachers do extra, but if they were not being paid as teachers they wouldn’t be doing extra. Unpaid caregivers are not the in the same circumstance.

    (Mont, I would hate to live in a society where the aging are forced to contemplate those options. My hope is that civil society organizations re-emerge over the next few decades to meet the needs of an older society.)

    Good luck with that. You live in a country that regularly abandons the weak, vulnerable and ill. I’m not sure how that’s going to be different when you add millions of old people to the mix.

  17. Teresa says:

    Add to all this mix, that caregivers are really not acknowledged, socially, in any way.

    Being a lone caregiver, for many years, can leave one drained, exhausted, often with some level of PTSD involved, without social resources to handle what comes after. To even be able to share what the whole experience of being a caregiver for a family member, not one’s married spouse, is often never voiced. Who really cares to hear that story?

    The perfect storm of being old, sick and quite possibly poor is already here … if the collapse of marriage is any indicator … Diane is quite right in expecting:

    I find myself imagining grim nursing homes and Star Trek episodes about societies where the old are expected to kill themselves.

    all couched in terms of ‘exiting’ for the common good.

    Color me skeptical, Matthew: “My hope is that civil society organizations re-emerge over the next few decades to meet the needs of an older society.” … in my opinion, this will never happen.

  18. Matthew Kaal says:

    Maybe I should have used the word prayer instead of hope…I am not naive about the reality hoped for being a long shot. Yet, I hope for it still. And who knows what technologies and innovations might come along to assist those dedicated to caring for the aging?

    RR Reno sort of hinted at this pessimism in the live-stream event about marriage’s decline, when he said our best hope is to pray for revival.

  19. Teresa says:

    Good luck with that. You live in a country that regularly abandons the weak, vulnerable and ill. I’m not sure how that’s going to be different when you add millions of old people to the mix.

    Exactly, Mont D. We are now told that ‘entitlements’ have got to give way to keeping ourselves afloat, financially. Just as the millions are just beginning to crash every known statistic of what all this means: to be old and sick and poor and poor. Euthanasia may well be the next big divide in this country.

  20. Diane M says:

    I have hope that we might be able to convince people to care about this issue because:

    we all get old someday,

    most of us care about older relatives and want them to get good care,

    nobody wants to end up ruining their own health or breaking their bank to care for older relatives, and

    I believe in hope.

    I think the key is that we need to recognize that this is a group problem that needs solutions that go beyond individual families.

  21. Mont D. Law says:

    (RR Reno sort of hinted at this pessimism in the live-stream event about marriage’s decline, when he said our best hope is to pray for revival.)

    This is not going to be solved by prayer or a marriage revival. It’s going to be solved by money. And anybody that doesn’t have any is mostly going to die sooner, likely abused and often alone. Whether they were married or not, remarried or not, had children or not. If they don’t have the do-re-mi their end of life is going to be nasty, brutish and short. If the best, richest, most powerful country in the history of the world can offer these people is prayer, well that’s just sad.

  22. La Lubu says:

    (I tried to respond earlier, but apparently the website is no longer accepting responses from cell phones. Or my cell phone, anyway.)

    It wasn’t mentioned in the post, but is worth a mention: any question of caregiving is purely academic if the person who needs care and the person who would potentially give care don’t live near one another. Moving is not an option for most people. How many people live near their elders? Three in ten? One in ten? Out here in the rust belt, leaving “home” for employment is a necessity, not a choice. Elders stay put because their homes are paid for, and who would buy them anyway, what with the no-jobs-in-the-community thing?

    Here’s how I dealt with it—threw my hands up in the air and said “(expletive deleted) it! There’s nothing I can do!” And so that’s what I did…nothing. I visited my mom in the nursing home which became sort-of a de-facto hospice few times (since she refused hospice until she became medically incompetant, whereby my father asked for hospice…..but by that time, she had less than two weeks left), and I was there when she died. But that was it. Three hour one-way drive, my daughter was in school, I was working full-time. Not. doable.

    But yes, I am still angry at a society for which that was perfectly ok; a society that deems the working class disposable, not worth paid family leave to care for the ill or elderly who also did nothing but work their whole lives. This situation doesn’t exist because of a lack of money; it’s because the lives of most of us aren’t valued.

  23. Teresa says:

    Whether they were married or not, remarried or not, had children or not. If they don’t have the do-re-mi their end of life is going to be nasty, brutish and short.

    It already is. Spend a couple of hours in your local community. Start with an Assisted Living, which is usually the best arrangement. Find out how many of those older adults have children who seldom come to see them, except for a day after a holiday for a quick visit … if they’re lucky. And the children, may not be funding their parents Assisted Living arrangements.

    Next visit a local nursing home. Choose just any facility that comes by chance. Try to spend an hour in that facility, and see what life is like … right here, right now, today.

    We don’t have to wait for the perfect storm of millions needing care. Today is the best it will ever be, and it isn’t pretty. Tomorrow will be exactly what Mont D. has described.

  24. Diane M says:

    @LaLubu – How awful.

    And I think that even if people somehow live close to each other, they will still have problems with the issues of leave and money.

  25. Mont D. Law says:

    I see my 82 year old mother once a week and my 24 year old son takes her out to lunch once or twice a month. She has a town house in a +50 community. I was shocked to find out our visits make her the envy of everyone in the complex.

  26. YYZ says:

    1. “Are Family Caregivers Invisible?”

    Absolutely. I left the workforce to take care of my mom before she died. Now, it’s difficult to get back into the workforce. Did I get a tax break or reimbursement? Nope.

    But I’m not the only one who has done this. The actress Claudia Wells turned down a movie role in Back To The Future 2 due to her mom’s ill health. She lost thousands of dollars.

    http://en.wikipedia.org/wiki/Back_to_the_future_2

    2. “I was shocked to find out our visits make her the envy of everyone in the complex.”

    Yep. I visit my dad every second day at a senior’s care home. The nurse told me she was surprised I visit so often because most people there rarely see family except on their birthday, Christmas and Easter.

    And that’s it…