When planning ahead for the future, most people willingly envision and plan for positive events like marriage, parenthood, retirement, etc. Events that are not often planned for, however, are the life-altering events that affect a person’s ability to make decisions for him/herself. And while it is understandable why such issues are not willingly discussed, it is important to know that it could lead to days, weeks or months of emotional distress, financial strain and/or family conflict. In order to avoid the potential of such distress, it important to at least be aware of the term advanced directives and what legal documents exist in order to reduce the potential for conflict.
Advanced directives are documents created for the purpose of planning ahead and ensuring you and your family’s needs are properly arranged for. Basic documents like a Health care proxy, a Living Will and Power of Attorney are documents that can ensure you and your loved one’s wishes are honored.
Health Care Proxy also referred to as Medical Power of Attorney is a legal document whereby a person is appointed to make medical decisions for another individual. For example, if your loved one suffers a stroke and becomes disoriented, a health care proxy would give you the legal ability to make medical decisions about his/her care.
Living Will is ideal for individuals who want to have their wishes in writing either because they do not have anyone to designate as proxy or because they hold strong convictions about the level of care they do/do not want.
Power of Attorney gives an appointed person the ability to handle another person’s finances. A durable power of attorney, specifically, will allow the chosen individual to handle a person’s finances even after the individual is no longer competent. Simple tasks like getting a new bank card for Mom or using Dad’s money to pay for his own medical care, are more easily accomplished when a person is appointed power of attorney.
HOW TO GET THESE FORMS – depending on the state you live in, getting the above forms can be as simple as speaking with your physician or with a social worker. The Power of Attorney forms can generally be obtained from an attorney. While there are versions available online, it is important to verify the document you have is the most current version as laws can change.
For information on Advanced Directives in New Jersey, click here; for New York, click here. For other states, visit www.lawhelp.org. Aside from getting over the hurdle of addressing this issue with your loved one and/or family, educating yourself about what is available can be a great way to start the process of planning ahead.
Have you already planned ahead and obtained any one of these documents? Have you tried but were unsuccessful? Feel free to ask questions or share your experience below.
Dilemmas and Solutions for Americans Raising Children While Caring for Elderly Family Members
Approximately half of middle-aged people in American provide financial, health, or emotional support for adult parents and minor or adult children. The term “sandwich generation caregiver” emerged in the 1980’s to describe middle-aged people who support minor children while providing physical, emotional, financial, or legal assistance to adults. Of course, doing so much exacts personal costs. Sandwich generation caregivers often experience stress-related illnesses, lost income, and decreased work productivity. They also find it harder to provide prolonged assistance to adult children.
Historically, caregiving could be shared by extended family members who lived in close proximity. Now more people relocate for career opportunities. Younger people may do senior care at a long-distance, or aging parents may move closer to one of their adult children and increase the burden on that family.
Caregivers who are employed full-time and taking care of multiple family members must adjust their work schedule and often take unpaid leave to fulfill obligations. They may lose Social Security and pension benefits or experience stressful financial strains that can cause them to become ill. Very often, sandwich generation caregivers choose to attend to the health of a child or parent and neglect their own health. Poor caregiver health is becoming a public health issue.
Sandwich generation caregivers also face barriers in the workplace and increase the cost of health care for employers. Health care costs for caregivers are approximately $13.4 billion greater than for employees that do not have caregiving responsibilities. Working caregivers may have a hard time juggling the crushing time demands of work and caregiving; and they may pass up promotions, decrease work hours, and take unpaid leave because they have depleted paid vacation and sick days.
Caregiver absences cost the U.S. economy $25.2 billion annually in productivity; and workers often quit jobs, lose lifetime wages, retirement savings, and pension benefits. Less than half of U.S. employers offer flexible schedules or the opportunity to telecommute to accommodate caregiving tasks.
Guilt and Exhaustion
Sandwich generation caregivers at the same time express guilt that they are not doing enough – and say they feel exhausted from doing too much. Guilt and exhaustion about how caregiving affects their children is a perpetual undercurrent of stress that affects their own health. In one of my research interviews, Sophie said “I was a single mom at the time…[my kids] really needed me here and then it would be my night to go shower mom and put her to bed… I’d cry sometimes all the way there and then I’d get there and Mom would be sitting there, facing the wall …and then on the way home you’d cry because…how could I think that I didn’t need to be there.” And in another interview, Ellie explained that she felt “…sometimes it’s almost like a ball and chain and then I think, “What am I teaching my kids… I want them to have the freedom to live their life without feeling obligated to take care of me someday. And sometimes I wonder how strong a message I’m sending in that regard.”
Self-Care Helps Caregivers Cope – and Jobs Can Too
Parenting and caregiving are both consuming roles – yet many caregivers understand that they still need to take care of themselves because otherwise the pressure or anxiety can be overwhelming. Self-care takes many different forms for sandwich generation caregivers: leisure, exercise, and socializing.
Abby, for instance, told me that even during the hardest part of her caregiving experience she still did Friday night dinner and cards with her husband and friends, took her Tuesday golf outing and walked her dog daily. Abby realized that carving out time for herself helped her stay healthy and not resent taking care of her dad. Similarly, at the beginning of our interview, Zach, said he “was not the type of person to feel guilty” about taking time for himself. He incorporated his kids into his coping strategies by going for long walks with them.
Not only do most sandwich generation caregivers need the wages and benefits that work provides, they also need a break from caregiving. Work sometimes offers a “guilt-free” break, allowing them to feel productive and serving as either a social outlet or a place for solitude, as two interviewees explained:
- Chloe stated that caregiving was mentally and physically exhausting. She admitted that it was hard to not feel guilty about taking time for herself but she had a “wake up call” during a physical when her cholesterol and blood sugar were elevated. She allowed herself to relax and socialize during her quarterly conference for work.
- Leah believed the hardest part of being a parent, caregiver, and professor was that she was “always surrounded.” Leah said that she didn’t take any time for herself. She felt she had to work to make up for the “hole” she put her family in to earn her degree but then she revealed that being in her office at work was like a “retreat”. She could play music and work at the computer and just be by herself while she graded papers and worked on her research.
What Employers Can Do
Employee assistance programs, flexible schedules, and telecommuting options can reduce some of the stress sandwich generation caregivers experience. Such employees often miss work due to caregiving tasks and their own poor health as a result of stress. They may not have the time to practice preventative health habits and coping strategies, and some develop cardiac, psychological, and chronic illnesses. Employee assistance programs can reduce such problems, to the benefit of all concerned. Employers can, for starters, create a supportive environment for caregivers and help them to seek and utilize institutional and community resources.
In some cases, flexible schedules and telecommuting may allow caregiver workers to maintain their job productivity and prevent valued employees from having to reduce work hours or quit altogether. Employers and fellow employees should also realize that for some caregiver workers time at the office can also act as a coping strategy because it offers a physical and emotional break. This should not be seen as a problem. When caregivers practice self-care, they are healthier – and can be more productive even as they balance the complex demands of their work and family responsibilities.
The Critical Role of Caregivers, and What they Need from Us
Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.
For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.
Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.
Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.
Respite is Essential, but lacking
The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?
Changes in the workplace
More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.
As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.
Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.
The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.
Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.
The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.
Stressed Out Caregivers Are Using ER Visits for Respite, Study Finds
Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.
It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.
In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.
The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.
Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.
Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.
The cost of unpaid help
“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”
Ankuda, who led the study during her time at in the Robert Wood Johnson Clinical Scholars program at U-M’s Institute for Healthcare Policy and Innovation, is now training in palliative care at the Icahn School of Medicine at Mount Sinai.
“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M.
“We need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.” Deborah Levine, M.D., M.P.H.
Long-term data gives key insights
The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.
The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.
Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.
Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.
More research & services needed
Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.
Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.
“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”
Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.
Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.
Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.
One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.
Low Medicaid Rates Limit Beneficiaries’ Access to Assisted Living Facilities, Quality Care
More than 700,000 elderly and disabled Americans receive health care in residential care communities, such as assisted living facilities. As the population ages, this number will grow.
A new study by RTI International found that low Medicaid payment rates for services in assisted living and similar settings discourage residential care providers from serving Medicaid beneficiaries, which limits their access to community-based residential care.
The study found that some residential care settings limit the number of Medicaid residents they serve or decrease operating expenses in ways that may also reduce quality of care.
“Medicaid payment rates only cover services in residential care settings; they do not cover room and board,” said Michael Lepore, Ph.D., senior health policy and health services researcher at RTI and lead author of the study. “One of the access barriers is the difficulty that Medicaid beneficiaries have paying for room and board in residential care settings because of their low incomes. This situation dissuades residential care providers from serving Medicaid beneficiaries.”
Residential care settings are community-based homes or facilities that offer room, board and care services, the most popular being assisted living. Compared to nursing homes, these settings often are less institutional and are often the preferred setting.
If Medicaid beneficiaries with long-term service and support needs cannot access residential care settings, then nursing homes may be their only option, ultimately costing taxpayers more money because Medicaid payment rates for nursing homes are higher.
The study, published in the Journal of Housing for the Elderly, found barriers that influence Medicaid beneficiaries’ access to state-licensed residential care include Medicaid reimbursement rates for services, the supply of Medicaid-certified residential care settings and beds, and policies that affect room and board costs for Medicaid beneficiaries.
Researchers examined Medicaid policies in all 50 states and the District of Columbia, interviewed subject-matter experts, and conducted four state case studies informed by reviews of state policies and stakeholder interviews.
“States need to ensure their Medicaid rates for residential care services are sufficient to maintain an adequate supply of these settings and beds available to Medicaid beneficiaries, while also safeguarding quality of care and taxpayer resources,” Lepore said. “Higher Medicaid rates may encourage more residential care settings to serve Medicaid beneficiaries, which may help reduce nursing home use by older adults and people with disabilities and potentially reduce Medicaid spending on long-term services and supports.”
Elder Abuse in the Twenty-First Century
In this “silver tsunami” era, elder populations are outnumbering the younger workforce. This creates significant inequity and more than enough opportunity for people to take advantage. Whether financially, neglectfully, emotionally, physically or sexually, seniors in the United States are at a high risk for exploitation.
Seniors can be abused by underpaid and overworked employees. Nursing shortages, along with an explosion of senior populations, lead to less competent care resulting in bedsores, malnutrition, falls, sepsis or other damages from neglect. In addition, economic woes lead to a rise in physical and financial abuse perpetrated by family members, caretakers and even outsiders. Older people are more susceptible in giving of information without asking questions, which makes financial abuse a low-risk, high-reward crime area. Having adequate representation can be a problem as well.
Social Security and other government assistance is typically managed by a person with power of attorney, but occasionally the government will designate someone to perform economic functions. The potential for abuse necessitates records to be very exact and reported regularly. Social security, wills, estate management, retirement portfolios and such accounts are difficult for most clear thinking people. It has been reported that any older person, much less those with dementia, make bad financial decisions.
Knowledge of elder abuse is not up with the times, decades behind the experts in the field. It’s difficult to even get a report filed. The myriad of potential problems is worsened due to many inappropriate state laws being slow in prosecuting offenses. Institutional Review Boards don’t commonly deal with such cases and there are not many federal regulations. Meanwhile, seniors don’t always have a great memory for testimony to help their cause in getting charges.
It is going to be hard for the courts to catch up with the times. Currently, elder abuse is acknowledged by WHO as a human rights violation with one in ten seniors falling prey to some crime. That ratio becomes one in two concerning people with dementia. As bad as the current populations trends look now, the future looks worse. 85+ is the fastest growing age group in the United States and the 60+ population is expected to double to over 2 billion people by the year 2050.
What to do?
Local district attorneys need tougher laws that focus on stopping predators and ways to enforce those laws. Whether with state or private agencies, seniors need more representation in housing placements or other living transitions and their monetary affairs.
Elders need younger people to show interest. Nursing home staff is going to be more careful with people they know are being checked on. Other relatives that are taking care of a loved one, should be helped out too. Stopping by or ask about older family members shows that someone is cared for, reducing the abuse risk. Importantly, it also breaks the cycle of care and provides everyday caretakers with the knowledge that they could get a break if needed.
The marks of abuse need to be more commonly known and easy to identify. Upwards of 500,000 seniors are victimized, but very few of these cases are ever identified, much less reported and charged. It helps to have advocates who can sense physical harm, negligence, medical malpractice and other atrocities. Physical and sexual abuse are easier to spot than most neglect, so it takes a concerned loved one to spot personality changes or injuries that are inconsistent with the individual.
Mistreatment is more likely to occur to seniors who have experienced past abuse, in part because those people are frequently left in bad situations and never given much help. Senior women are more victimized than men, as are people in poorer health and those with lower incomes. Many other obvious risk factors and tell tale signs exist to make others aware. We need to be more empathetic and better educated.
The onus is on the concerned relatives to care about what facility seniors are placed in. For-profit corporate chain nursing homes often have less than ideal conditions for staff or residents. Relatives should take the time to tour various homes, make observations, and find the right fit. The most important way to combat elder abuse is by being involved. We just can’t put elders into homes and forget about them. It’s not supposed to be a prison for people we can’t help anymore. Nursing homes are expensive places that should be treating residents like royalty. It takes our effort to keep things as they should be.
To facilitate better treatment, we need to listen to both seniors and caregivers. We need to be attuned to what seniors needs and worries are. We need to speak up and file charges when something has happened. One in ten reported cannot be acceptable. If a caregiver is stressed or burned out, we need to make sure they can get the breaks they deserve to provide the best care, just as we must make sure caregivers are getting paid adequately for the grueling work they put in.
As with raising a child, it takes a village to care for our elders. We need to impress upon society in general that it is everyone’s responsibility and how this needs to happen. We are all going to be in this position someday, we should be doing everything we would want others to do for us as we become more helpless.
Are We Forgetting About The Sandwich Generation?
When working with elderly patients in health care facilities, it is likely that we may forget about the needs of their adult children aka The Sandwich Generation. The sandwich generation is adult children typically between the ages of 30-50 who are caring for their aging parents while taking care of their own family as well.
Taking care of young children while caring for aging parents puts a great deal of stress for the adult children. In my experience in working with families in hospice, I’ve noticed some factors that contribute the stresses of this generation:
- Financial Concerns – Older Americans are living off on their fixed income such as Social Security, VA pension, personal savings which may not be enough to pay for certain expenses. Many retirees can not afford to live in assisted living facilities, private home attendants, monthly expenses in their current home. The children often struggle as they have to figure out how to pay for these expenses if their income is limited as well. This issue is very common for funeral expenses since many retirees don’t have life insurance.
- Feuding Relatives – Adult children may have a long history of sibling rivalry which can leave an impact on the care of their elderly parents. One child may agree to hospice care while the other believes in aggressive treatment. The rivalry can easily be carried into a facility where we, the social workers usually witness the drama.
- Lack of Awareness – You will be surprised how may adult children are not aware of health care proxy, advance directives, or how life insurance works. Some assume that their parents insurance will cover everything. Many times I had to inform the children that Medicare does not cover long term cost which brings back to #1 on this list.
- Bad Timing– Sometimes adult children may wait till the last minute to make handle their parents affairs. Reasons for this occurrence may be that they learn about the resources too late, procrastination, denial or lax in their own time management. I had adult children asking me how they can get a power of attorney for their parent, and the patient is unresponsive, near death.
- Mom and Dad Are Not The Same – We know our parents from the time we were born. We are not use to seeing our parents getting older and sicker. Many adult children may not be prepared to watch their parents deal with debilitating condition such as Alzheimer’s Disease. On the other hand adult children may have their own personal issues about their parents that was unresolved. These changes can bring emotional distress to the children.
When working in hospitals, assisted living facilities, home care agencies, or adult day programs its very common to see these issues surface with this generation. However, social workers who work in private practice or other settings might encounter someone who experience this as well. Unfortunately, we are unable to prevent adults from getting older and prevent the sandwich generation to face this situation. We can however, take some steps to reduce the burden and educate this generation at our place of employment. Here are a few things to consider:
- Assess All Legal Health Forms – Many hospital staff are required to ask patients and families about advance directives, and health care proxy. Families should be educated the advantages of having these forms in place. This can make the health care decisions easier for the adult child.
- Discuss Available Services – Be aware of the services in your community which will allow you to share it with your clients. Services include, Medicaid, home care services, senior subsidize housing, elder law attorneys are some of the examples of resources for the elderly. It’s very important to be aware of the referral process of these services. For example, filing for food stamps in NYC is entirely different than filing it on Long Island. If we are knowledge about the services, than the family is well informed of their options.
- Review their coping techniques – Care giving is physically and emotionally stressful. It’s very important that we assess how the adult children are coping. Do they have a counselor who they can speak to? Do they receive support through their place of worship? Are they attending care giving support groups? What are their personal issues about their parents that they are struggling with? These questions are some of the examples we can ask when assessing their situation.
How social workers intervene depends on the needs of the adult children. In one situation, the child may have all the concrete needs in place but still requires emotional support. On the other hand, there will be another case where the social worker may have to review health care proxy, discuss Medicaid service, and mediate the feuding siblings.
At the end of the day, you could never give too much emotional support to the sandwich generation.
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