Tag Archives: dementia

Facilitating support groups for caregivers

By Brooke B. Collison July 8, 2019

The 40 million adults in the U.S. identified as caregivers often find themselves overwhelmed, lonely and depressed. They provide care on a part-time or full-time basis for individuals — usually family members — who, because of health or other reasons, need assistance with activities of daily living. Facilitated groups can provide a nonjudgmental framework for caregivers to find understanding and support from others who are in similar situations. Support groups can be self-sustaining, but they function best when a professional counselor or trained facilitator assists group members with their processing.

A gentle but convincing nudge from my spouse started my volunteer work as the facilitator of a caregiver support group six years ago. I continue to serve caregivers in that role today. My experience as a facilitator has allowed me to make a contribution in my retirement, and I encourage other counselors to explore the same possibility.

Enormous variability exists in caregiving situations, but common among them are conditions that are of high concern in aging populations: dementia, Alzheimer’s disease, chronic illness and other age-related deterioration. The three individuals my wife pointed out to me in church that Sunday morning had become full-time caregivers of spouses with Alzheimer’s disease. My spouse said to me, “They need a group. You should do something.”

The first group started with a direct invitation from me: “Would you like to get together with some other caregivers to have a place to talk?” I was met with quick affirmative responses from two of the three people I approached, and they were soon joined by a few others who heard something was beginning. Over time, the group grew to a dozen members, with some joining and some leaving as caregiving situations changed.

Nine deaths of care receivers occurred during the first three years before the caregivers decided to dissolve the group, having worked through the stresses and strains of caregiving, as well as the agonies and life-change issues of death. Among the caregivers in that first group were spouses, adult children, relatives of care receivers, and an employee of a care center. Although the medical and physical issues of care receivers were varied, the issues of being a caregiver seemed universal.

The support group was probably therapeutic, but it was not therapy. Although I have been a licensed counselor, I was the facilitator for the group, not the therapist. People entered the group voluntarily, and there was no contract that described my behaviors, philosophy or approach. I had retired as a counselor educator and did not renew my counseling license. So, I would clarify to new members that my role was to facilitate the discussions in the group. I also stated that I had no expertise in any of the medical issues being experienced by the care receivers. I explained that, as the facilitator, I would help manage the discussion, ask questions to clarify issues and, if I felt it necessary, remind members of the few general ground rules they had established for themselves: Treat personal situations and conversations with respect, don’t dominate, listen, and accept another person’s feelings and emotions as legitimate.

I do have a philosophy about support groups. I believe that most of these groups can develop to a point where they can manage their own issues and in-group communication. However, I saw part of my role as being somewhat protective of vulnerabilities among group members. If a member expressed strong feelings that might be contrary to the beliefs of another member, I would monitor critical responses. For example, if a caregiver expressed anger at a spouse or partner — “He makes me so mad when he …” — I would listen for the “You shouldn’t feel that way” response. This seldom happened, but when caregivers are living by the “in sickness and in health” vow they took at the beginning of their marriages, they can have a set of values that discourage anger toward or criticism of a spouse.

My belief is that the primary value of caregiver support groups is to provide a place where caregivers can give voice to stressful experiences, strong feelings and personal frustrations in the company of others who, ideally, give verbal and head-nod agreement with the issue rather than criticism or value-laden responses that only make these difficult feelings intensify. In short, caregiver support groups should provide what most people in the caregiver’s larger circle cannot give — authentic empathic understanding.

There have been times during the life of caregiver groups when I moved from the role of facilitator to member. I became a caregiver when my spouse broke her hip when we were traveling out of state, resulting in surgery and several months of recovery. At one session, I moved from “my spot” in the circle to a different chair and announced, “I’m a member today, not the facilitator.”

I proceeded to share an experience in which I had become quite upset over a huge mix-up in communication with my spouse that had left each of us very angry with the other. At the time, I saw our inability to clearly communicate — both in sending clear statements and in not understanding statements — as a scary image of what our future might become as we grew older. The communication mix-up, which became funny in time and with perspective, loomed at the time as a grim picture of a possible future. Members of the support group heard my story, shared their similar concerns, and accepted my worries. When I shared the same episode with other friends, it drew none of the same empathic understanding.

In a second major block of time in the same support group, I became more member than facilitator after my spouse was diagnosed with an untreatable brain cancer and lived only three more months. I remained in the group as a member, and another person took up the facilitator role very effectively.

Several kinds of support groups can be found in most communities. I prefer a noncurricular support group. In these groups, discussion topics emerge from the issues that caregivers bring to the sessions rather than from a predetermined agenda. Many support groups, especially those established for a fixed number of sessions, operate from a curricular base — sometimes even with a textbook — and have specific topics identified for each session. Other support groups may become more instructional in format. I believe the noncurricular support group provides the best opportunity for members to talk about the critical concerns and issues they have in the caregiver role and to find the greatest empathic understanding among a small group of people who share somewhat similar life situations.

Caregiver issues

In the caregiver support groups I have facilitated, members have raised a broad range of issues, including:

  • Loneliness
  • Depression
  • Role reversal
  • Becoming an advocate for the care receiver’s medical and social needs
  • Preparing for the care receiver’s death
  • Money/estate issues
  • Sexuality
  • Respite
  • Handling inappropriate questions and responses from others
  • Lack of patience
  • Anger
  • Relationship changes
  • Asking for, accepting, giving and refusing help
  • Decision-making for self and others
  • Concerns for their own health
  • Conflict with parents/siblings
  • Change in social supports
  • Moving the care receiver to a care facility and being an advocate for
    them there

I will comment on a few of these issues more specifically to demonstrate the value of a noncurricular caregiver support group.

Loneliness characterizes the lives of most caregivers to a certain degree and becomes extreme for some. Becoming a caregiver means that a person’s world changes. Day-to-day employment, recreational and social activities no longer exist for that person in the same way. In cases in which the care receiver’s dementia or other cognitive dysfunction begins to increase, the caregiver discovers that the person, although still physically present, begins to disappear. Loneliness becomes a way of life, as the years of sharing spirited discussions each morning over newspapers and coffee turn into coffee and silence. It isn’t uncommon in a support group to hear someone say, “She’s/He’s just not there.” The support group becomes a loneliness antidote for many members.

Depression is another common topic in caregiver support groups. More than a third of long-term caregivers experience depression, according to surveys reported by AARP. Caregivers might not use the word “depression” as they talk, but the behaviors and emotions they discuss often reflect that condition. In several group sessions, after a member has talked about depressed status, I have heard other members respond along the following lines: “I was feeling that way after my wife was at home for two months, and my physician labeled it as depression. I’m still on a prescription for antidepressants, and I think it’s perfectly OK to be on the pill.”

Role reversal happens in some fashion for nearly all caregivers who have had a long relationship with the care receiver. Couples who have been together for years and have fallen into clear divisions of responsibility around money management, food preparation, driving, decision-making and other tasks will discover that either physical or mental limitations force role changes. For example, the partner who never wrote a check finds that checks, credit cards, bills, tax preparation and all other money matters now fall under their domain. The person’s reaction to this can be either positive or negative. Being the fiscal manager may give the partner feelings of responsibility and control that they have not had before, or it can be experienced as an overwhelming burden that leaves the person feeling totally incompetent. Discussion of the effects of role reversals can be quite revealing to self and to others. If one partner who seldom drove the car because the other partner was extremely critical is now forced to become the driver — only to discover that the criticism from the nondriving care receiver only increases — relationship stress will multiply.

Lack of patience has been voiced by nearly every caregiver with whom I have had a group experience. As the person they care for starts to slow down physically or as their daily living abilities begin to disappear, caregivers see their daily load increasing, leaving them with less and less time to manage everything that needs to be done. Caregivers will often say their lack of patience is mixed with anger, even when they know it takes the care receiver longer to do nearly everything or that tasks and functions are forgotten or items misplaced. “It now takes 45 minutes to get from the house to the car, and I can feel my anger increasing with every minute. It makes us late for every appointment, and I have to start earlier and earlier for everything we do.” This statement brought unanimous head-nod agreement from an entire group. The discussion shifted to the resulting feelings of anger and loss, then moved into individual strategies for handling impatience and increased time requirements.

Becoming an advocate is a role that some people relish and others avoid. Caregivers are generally thrust into the role of patient advocate with the medical system, the care facility complex, and their surrounding social system in general. Frequent support group discussions have begun with a member telling their story of the previous week’s battle with some element of the complex that serves their care receiver. Sometimes these stories are ones of frustration, feelings of helplessness and lack of needed information. At other times, the story might emerge as a powerful feeling of accomplishment: “Yesterday, I met with the administrator of the assisted-living facility and demanded more attention to medication schedules.” These are moments for groups to celebrate, especially when caregivers who describe themselves as hesitant to challenge authority relate successful actions on behalf of their care receiver. Sometimes, when a discouraging episode has been shared, other members have related to the same issue or provided inside information gleaned from their own trying times. Some have even volunteered to accompany the caregiver to the next appointment.

Respite is labeled by experts as one of the most essential elements of caregiver health. As a topic in a support group, discussions frequently focus on how time away, or relief or respite care, would be appreciated. Simultaneously, caregivers will talk about how respite or any form of time away is impossible. This is frequently tied to the personal belief that the caregiver is the only person who can or should fulfill the task of giving care.

Help becomes a common discussion topic in one of several forms: Where do I get help? How do I ask for help? How do I turn down help? Embedded in many of these discussions are personal core values about what giving or receiving help really means. It is one of those topics where it would be easy for a facilitator to slip over into a therapist role. When caregivers describe how it is essential that they be the one who does everything and how impossible it is for them to accept help with any of their caregiver duties, the natural tendency of the trained therapist is to probe or confront or interpret in order to explore parental and other messages about help. It is also one of those situations in which group members may step in with their own illustrations of what help means, where their core values about help came from, and how their beliefs about help either facilitate or inhibit their functioning as caregivers. In staying away from my therapist tendencies to remain a facilitator, there are times when I can smile later and say to myself, “The group is doing what a good group does; they don’t need me to be the therapist.”

Information needs are high when someone first takes on the caregiver role. In early stages, they may be bombarded with pamphlets from their physician about specific diseases, friends may tell them about books to read, and technologically informed caregivers may search the web for sources. New caregivers are often directed to information support groups; medical facilities may offer groups for individuals with similarly named conditions. I find these groups helpful during the early information-gathering times, but their helpfulness diminishes when the caregiver gets deeper into the caregiving experience and discovers that information is important but not enough. It is more valuable for the caregiver to have a place where they can say, “My life is slipping away, and I don’t know what my future will be,” with six or seven people nodding in agreement. Then one of them says, “Yes, some days I don’t have anything that resembles my life before.”

Other issues common in support groups include concerns about money because long-term illness is expensive. If other family members are involved, conflict with siblings or other relatives is inevitably a cause of stress for the caregiver. Sexuality is usually discussed in the group relative to hygiene and physical care by others, but on more than one occasion, caregivers have dug in to issues of appropriate and inappropriate sexual behavior in care facilities. In a support group, caregivers may find an environment where they can talk about impending death, even anticipating relief when it comes. Often, caregivers will agonize over the decision to place their loved one in a care facility, then have additional agony with second thoughts and regret after the decision has been made, even though the decision will be described as “the right thing to do.”

Support group procedures

I believe the best way to create a caregiver support group is by invitation. Within any group of older people, it is likely that some will be serving as caregivers. Over time, that number will increase. (AARP provides good summaries of this trend at its website, aarp.org; the organization’s reports and resources are easily accessible by typing “caregiver” in the search field.) Posting announcements of a caregiver support group will attract a few people, but many people are reluctant to attend without a direct invitation.

Support groups function best when there are enough people present for good discussion but not so many as to restrict individual participation. My ideal numbers range from eight to 12 participants. I have worked with both larger and smaller groups that seemed effective, however.

Groups have a beginning and an end and can be announced as such. The open-ended entry and exit group can go on for years; facilitators need to be clear about what they are agreeing to do when they begin a group with no clear end. Ending a group and then resuming later with the same members can be effective. This can also serve to ease the transition of new members in and old members out if they choose to leave. I strongly encourage some kind of summary or ceremony when group members depart. Likewise, I urge groups that decide to end to develop a concluding summary and ceremony.

Caregiver groups, by the very nature of what brings people to the group, will morph into grief groups. In my experience, people generally wish to remain with their caregiver group rather than shift to a separate grief recovery group because of the close relationships they have formed and the comfort that comes from being with people who know their story. As group membership begins to reflect more people whose care receiver has died, it does make it more difficult for new members to join.

Volunteer versus paid facilitation is an issue for many counselors. My participation is as a volunteer. In my community, support groups exist that are tied to medical or service agencies in which the facilitator might be a paid employee. There might be instances in which insurance would cover the cost of an ongoing support group, but this is not as likely for an open-ended group as it is for a fixed-length program.

Counselors in private practice could offer support groups for which members would compensate the facilitator. Under those circumstances, members could enter the group in the same way they would enter counseling sessions — with a contractual understanding of the role of the counselor who is operating with a prescribed set of ethics and an appropriate license.

I believe it is important for group facilitators to have a person they can go to regularly to discuss issues that arise for them in the facilitation role. In the same way that we expect counselors to have clinical supervision, facilitators need to seek this support. I get this through occasional coffee sessions with a friend who is a clinician.

I urge counselors to find or to create support groups that make use of the facilitation skills that counselors possess. Caregivers in their communities will be the beneficiaries. The service meets a critical need, and the satisfaction that facilitators will experience is beyond measure.

 

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I’d like to thank Bob Lewis and all the other caregivers over the years who have taught me what I know about support groups. I appreciate the stories and feelings they have shared and for the support they have given each other in such meaningful ways.

 

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Brooke B. Collison is an emeritus professor of counselor education at Oregon State University. He is a fellow and a past president of the American Counseling Association. For the past several years, he has served as a facilitator for caregiver support groups as a volunteer activity in his retirement. Contact him at BBCollison@comcast.net.

 

 

Letters to the editor: ct@counseling.org

Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Understanding elder financial abuse

By Joanne Cohen April 27, 2017

 

“All forms of elder abuse are acts of violence” — Margaret Hudson (1991)

 

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With the aging of the baby boomers and advances in medicine and technology, more people are living into old age, and more elders are experiencing abuse. According to the National Center for Elder Abuse, at least 1 in 10 elders report some form of abuse. And according to the National Elder Maltreatment Study of more than 6,000 elders and proxies, the most prevalent form of elder abuse is financial in nature, eclipsing both elder emotional abuse and elder neglect.

Financial offending is behavior that targets and takes advantage of elders for personal financial gain. Financial offenders (aka fraudsters, scammers and con artists) lack empathy for their victims. They groom victims by promising rewards for financial giving. They may promise products, services, time, money or even social-emotional needs fulfillment, including safety, security, belongingness, love and self-esteem.

 

Profiling fraud

Fraud by strangers mostly takes the form of marketing and mail fraud. From the fraudster’s perspective, it is “a business.” Fraudsters use psychological manipulation of emotion to evoke giving. They use catchwords and phrases designed to arouse feelings of pride and good will for giving, and guilt and fear for not giving. They say things such as, “Her life is in your hands”; “Save Social Security”; “Secure our borders from illegal immigrants”; and “The cure is just around the corner.”

Fraud conveys the appearance of legitimacy with words that sound credible (e.g., “official postal notice”) and names that sound familiar (e.g., Children’s Wish Foundation). It often taps into patriotic duty and religious value, using symbols such as flags, eagles, crosses and stars. It may evoke a sense of urgency with expressions such as “last chance offer.” Fraudsters produce hopes of financial reward by implying that their targeted victims have already won. Elders who respond to fraudulent pitches are placed on a “sucker list” that is sold again and again.

 

Profiling exploitation

Family member caregivers commit the majority of financial exploitation of elders. Family caregivers exploit as a function of personal burden rather than as a result of the burden of caregiving. Compared with burdened caregivers who do not exploit, exploiters are more likely to be occupationally, financially and mentally unstable; are more apt to have an addiction; and are more likely to be financially dependent on the elder.

Family caregiver exploiters are seen to use avoidance more than acceptance strategies to manage conflict, and they equally isolate victims and threaten abandonment if a report is made. Exploiters use intimate knowledge of the elders’ vulnerabilities to portray victims as weak and dependent. Although they may feign interest in receiving help, caregivers who exploit elder family members should not be included in counseling except in post-adjudication restorative justice.

 

Risk factors

Elder cognitive impairment is the single greatest risk factor for all forms of elder abuse. It is strongly associated with various forms of financial abuse, including money mismanagement, negligence, fraud and exploitation. In addition to being a risk factor for financial abuse, cognitive impairment can be exacerbated by financial abuse. Financial abuse disturbs the elder’s capacity to know what is real and whom to trust. The victim may feel confused and disoriented, as though he or she is going crazy.

Other risk factors for all forms of elder abuse include elder mobility problems, being homebound, medical and psychiatric conditions, substance abuse and social isolation. Although social isolation can be a symptom of mental illness, it can also indicate a fear of retaliation for seeking help.

Financial worries and fear of losing financial control are very common in old age. Elders worry about the cost of living, health care, long-term care and the financial struggles of adult children. In a 2014 Pew Research Center survey, about half of adult children reported financial dependence on aging parents to meet the cost of living. Economists explain that today’s generation of adults is the first to not surpass their parents’ financial success. Because elder financial worry is associated with financial risk-taking, such as falling prey to scams and risky investments, it is considered a risk factor for abuse.

Finally, there is a particularly high risk for elder financial abuse during times of crisis and transition, such as after the death of a spouse or during recovery from a fall. At these times, elders are more vulnerable to others gaining financial control under the guise of helping.

 

Reactions to financial abuse

The reactions of elders to financial abuse parallel the reactions of victims of all ages to various types of abuse. These reactions include denial, avoidance, confusion, hurt, betrayal, anger, embarrassment, shame, guilt, helplessness, hopelessness, mistrust, dissociation, hypervigilance and paranoia. Symptoms of elder financial abuse mimic those of depression, anxiety, posttraumatic stress disorder, dementia and even psychosis. Helplessness, hopelessness, diminished self-worth and social withdrawal are so common among victims of elder financial abuse that their presence should always signal the need for an abuse assessment.

Elders are often reluctant to acknowledge being the victims of financial abuse. This reluctance to report is associated with a host of fears, including the fear that:

  • Nothing will be done
  • The victim won’t be believed
  • The victim will be blamed or shown to have personal flaws
  • The perpetrator will be harmed
  • The family will be broken
  • The report will incite retaliation, abandonment or institutionalization

Reluctance to report financial abuse is also due to the emotional, physical and financial toll that abuse investigations take on victims. It is much simpler not to deal with an investigator who needs to examine financial records, review changes in assets, and create timelines of transactions and who was involved. Elders are typically discouraged from filing reports; only about 1 in 5 cases of family exploitation and 1 in 25 cases of stranger fraud are reported.

In addition, prosecution rates of financial abuse are low because family members are seen to have tacit consent to access elders’ finances and because strangers are hard to identify. Even in successfully adjudicated cases, no remuneration is afforded. When one elder called her state attorney general’s office to ask for help with mail fraud, the spokesperson said, “The magnitude of the problem is so great that we simply cannot investigate every case.”

 

Counseling principles and practices

Principles that guide counseling for child abuse can also be applied to counseling for elders who have suffered financial abuse because the dynamics are very similar. Many of the risk factors are the same (cognitive limitations, mobility problems, social isolation). Symptoms are the same (fear, confusion, hopelessness, hypervigilance). Reasons behind the reluctance to report are the same (fears of not being believed, facing retaliation, breaking up the family, being institutionalized). Threats and intimidation for reporting are the same (isolation, withdrawal of help, exposing inadequacy). And social position is the same (dependent, protected).

Referring financial abuse victims to financial experts who can confirm assault is an important part of counseling. Expert verification decreases cognitive confusion and provides emotional relief for victims. One mail fraud victim finally acknowledged being scammed when his bank manager said, “This unfortunately happens a lot. At least you caught it early.”

Financial abuse stresses an already stressed system, and victim allies may need to help produce financial records, close accounts, set up online payments, vet the mail, provide emotional support and so forth.

The passage of three laws in 2010 laid the foundation for developing integrated elder abuse services. First, by mandating states to develop adult protective service laws, the Elder Justice Act produced a common language to talk about elder abuse problems. Second, by requiring states to develop adult protective service systems, the reauthorized Adult Protective Service Law expanded state and national elder abuse detection, investigation and reporting. Finally, by funding elder mental health screening under Medicare and elder mental health counseling under Medicaid (for states opting in), the Affordable Care Act elevated the provision of elder mental health services.

In 2015, the White House Conference on Aging asserted that best practices in elder abuse prevention are multidisciplinary. This means that counselors will be called on to detect, investigate and report elder abuse in collaboration with diverse professionals. Multidisciplinary prevention of elder abuse will work much like the National Children’s Advocacy Center (NCAC) model, but instead of aiming to prevent child abuse one child at a time, its aim is to prevent elder abuse one elder at a time.

 

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Joanne Cohen is a professor and coordinator of the marriage, couple and family counseling program in the Department of Counselor Education at Kutztown University. She is a national certified counselor and licensed marriage and family therapist. Cohen specializes in trauma and addictions counseling, prolonged exposure counseling and client-centered counseling process and supervision. She serves as a volunteer assistant ombudsperson for a county office of aging and adult services. She is trained in the NCAC multidisciplinary treatment approach to child abuse prevention. Contact her at cohen@kutztown.edu.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

Multiple stressors take a bite out of the sandwich generation

By Lynne Shallcross October 20, 2015

Merriam-Webster defines the term sandwich generation as a “generation of people who are caring for their aging parents while supporting their own children.”

Estimates vary concerning how many Americans belong to this sandwich generation, but a recent poll from the Associated Press-NORC Center for Public Affairs Research puts the number at nearly 1 in 10 Americans age 40 and older, with another roughly 8 percent who may become “sandwiched” caregivers in the next five years.

Caretaker_brandingNot all sandwiches are alike, however. Some sandwich generation caregivers have aging parents living with them, while others care remotely for aging parents who still live on their own or in assisted living facilities, sometimes in another state.

As for the “children” that sandwich generation caregivers are looking after? Traditionally, the assumed reference would have been to those younger than 18 who are still living at home. But many sandwich generation caregivers have young adult children who no longer live in the home yet still rely on their parents for financial support. Still others have adult “boomerang” children who have moved back into the house.

There’s also the “club” sandwich, which includes more than three generations. For example, a 55-year-old woman might be caring for her aging parents, while her 30-year-old son and daughter-in-law, along with their young children, live at home with her. “It’s not just a regular peanut butter and jelly sandwich, it’s a club sandwich of family members looking behind and ahead in multiple generations,” says E. Christine Moll, an associate professor and chair of the Department of Counseling and Human Services at Canisius College in Buffalo, New York. Moll is also a past president of the Association for Adult Development and Aging, a division of the American Counseling Association.

Ten years ago, Phillip Rumrill found himself in a variation of the sandwich generation. Rumrill, a professor of rehabilitation counseling and director of the Center for Disability Studies at Kent State University, was helping to care for his grandmother, who had cancer and dementia. He was also raising young children of his own and holding down a full-time job as a counselor educator.

Rumrill says there weren’t many good resources at the time for sandwich generation caregivers like himself. He and the other family members helping with his grandmother’s care “had to learn a lot on the fly.” A few years later, two rehabilitation counseling colleagues approached Rumrill. The women — one of whom had cared for her mother-in-law and the other of whom had cared for her father, both while raising their own children — were interested in writing a book on the topic.

Rumrill, Kimberly McCrone Wickert and Danielle Schultz Dresden co-authored The Sandwich Generation’s Guide to Eldercare: Concrete Advice to Simultaneously Care for Your Kids and Your Parents in 2013. Their aim was to provide the kind of practical guide they wished had been available for them.

Among other things, Rumrill says the book addresses the inherent tension and conflict involved in caring for an aging family member, especially when the tables in the relationship are turned and adult children are telling their aging parents what to do.

For Rumrill, that point is exemplified by one memory of his grandmother. He was explaining something to his grandmother when she interrupted him. “Apparently I was saying it in too much of an advisory way,” Rumrill says, “and she stopped me for a minute. And she said, ‘I want to ask you a question. … When did the change happen where you started telling me what to do?’”

Career plus caregiving 

As a life span services manager in the Office of Work, Life and Engagement at Johns Hopkins University, Meg Stoltzfus helps university staff and faculty members navigate all kinds of caregiving challenges. The biggest stressors she sees with sandwich generation caregivers are related to finances and career.

“Many caregivers, if they are working, have to cut back hours at work, or they can’t accept promotions if that would involve more travel or more hours, because they have so many commitments that they have to fulfill with their children and their parents,” says Stoltzfus, an ACA member. “Then they start to deal with their own financial difficulties if they’re not able to save as much for retirement, if they’ve cut back their hours or if they’re spending all their discretionary income on providing care and assistance for their parents.”

The impact on a sandwich generation caregiver’s career compounds the problem. “This sandwich situation happens really at the prime time in your career,” Stoltzfus explains. “And that’s the time when you have the most competence, when you’re making the most money, when you’re really on a roll — and then it kind of brings that to a screeching halt for many people.”

As it relates to taking care of aging parents, sandwich generation caregivers may also experience less understanding, collegiality and encouragement in the workplace. When someone is expecting a baby, co-workers often throw an in-office baby shower to show their excitement and support, complete with gifts and good wishes. “You do not have a similar party when you’re taking care of your dad or you have to move dad into the house,” Stoltzfus points out. “There’s still a real taboo in the workplace generally about talking about eldercare.”

In fact, Stoltzfus says, some people go to great lengths to hide their caregiving responsibilities for aging parents. They worry that it might cause supervisors to pass them over for promotions or that colleagues may think less of them for having to miss an office happy hour to go home and care for a parent, she explains.

Although some progressive employers are beginning to support workers faced with these kinds of caregiving responsibilities, Stoltzfus says it remains challenging to balance work with caregiving. She recommends that counselors working with sandwich generation clients encourage those clients to familiarize themselves with their companies’ employee policies and meet with a human resources manager to discuss supportive options with which they might not be familiar.

Stoltzfus’ employer, Johns Hopkins University, has a program that pays part of the cost of backup care. For example, if the aging parent of a university employee needs surgery and then needs an in-home nurse afterward, the university will pay part of the cost of that care, Stoltzfus says. “Employees need to see what their employer covers and what benefits they have in place for caregivers because it may be a big help to them [and] they may be able to be more successful at work if they can take advantage of those,” she says.

Rumrill suggests that clients set up a contingency plan at work concerning what will happen should they need to be absent at the last minute because of caregiving responsibilities. Clients shouldn’t assume that employers haven’t had to deal with those kinds of caregiving challenges before because, odds are, they have. “It’s a really pervasive issue,” he says.

To help clients tackle the financial stresses that accompany caregiving in the sandwich generation, Stoltzfus says counselors should be equipped to make referrals to local experts who can help. One overall referral that Stoltzfus recommends is to an “aging life care professional,” also known as a geriatric care manager. Those professionals can connect caregivers with various kinds of eldercare resources in their communities, she says.

Both Stoltzfus and Rumrill also recommend that counselors be ready with referrals to qualified elder-law attorneys and financial planners. Those professionals can help clients navigate government benefits for which the aging parent may qualify, help create wills or trusts and provide assistance with other financial and legal issues.

For everyday practical needs, such as finding transportation or adult day care for aging parents, Rumrill often suggests the Eldercare Locator (eldercare.gov), provided by the U.S. Department of Health and Human Services Administration on Aging, or connecting with a local Area Agency on Aging.

A balancing act

Another major challenge for those in the sandwich generation is meeting the caregiving needs of their children and their aging parents simultaneously, Rumrill says.

“Sometimes, those needs compete with one another,” he says. “Meeting your parents’ needs may mean that you aren’t meeting your children’s needs in the way you would like to. In many cases, members of the sandwich generation find that the skills they employ in raising children help them in providing eldercare, but being responsible for multiple generations of people can be daunting and exhausting in terms of physical energy, time and financial resources.”

And children — especially young children — often don’t possess the perspective needed to understand the situation. Sometimes children will express frustration, resentment and even anger that their parents are taking time away from them to care for their grandparents or other older relatives, Rumrill says.

Guilt is a common reaction, Rumrill adds. “The caregiver feels that he or she is letting everyone down when, in fact, he or she is keeping everyone moving along.”

Rumrill suggests that parents communicate openly and honestly with their children about the health of older loved ones. “Find ways for children to take part in the care if that is possible, encourage children to maintain a good relationship with the elderly loved one as he or she declines and maintain as much continuity as possible in terms of family customs and traditions,” he advises.

Many parents find creative ways to involve children in the caregiving, Rumrill says. “One mother assigned her 12-year-old son to go to his grandmother’s home every Saturday to mow her lawn,” he says. “While he was mowing the lawn, grandma made him lemonade, baked cookies for him and, after he finished the lawn, they visited for several hours in the afternoon, she telling him stories about her life and her memories of her family. So by helping out with a needed task, the boy was also making a value-added connection with his grandmother. Plus, his presence provided her with companionship to combat the loneliness that often accompanies aging.”

Counselors can help sandwich generation caregivers and their children in a number of ways, Rumrill says, including giving children a safe space to share their feelings about the situation. They can also help parents and children deal with feelings of grief over the changes happening to their older loved one and help them prepare for the eventual death of that person, Rumrill says. Counselors might also try to help children and parents clarify and possibly revise the expectations they have of one another considering the changes taking place in the family due to caregiving responsibilities.

Friction in the family

Caring for an aging family member can create or exacerbate interfamily conflicts among adult siblings, Stoltzfus says. “It brings up a lot of family-of-origin issues,” she says. For example, one adult sibling might tell another adult sibling, “Mom always liked you best” or “You’ve never helped; you’ve always been selfish.”

“It really taxes the family structure to get everybody on the same page about what kind of care is needed and how that care is going to be provided because many times, the siblings all have different opinions about how this should be handled,” Stoltzfus says.

Moll, who specializes in working with older adults and runs a small private practice in a suburb of Buffalo, agrees. The stress and complexities involved in family caregiving can dredge up unresolved family issues that may have germinated years, or even decades, ago. It is often important for counselors to peer beyond the issues at hand, Moll says, and instead identify and follow the roots underlying those issues to their source.

Sandwich generation caregiving can also put stress on the relationship between partners. For example, if one partner or spouse is devoting a significant amount of time to caring for an aging parent, the other partner or spouse can be left to handle the lion’s share of the household and child care duties, Stoltzfus says.

Then there is the issue of clients balancing their new roles as the son or daughter of an aging parent, Rumrill says. Part of the time, that person is still the child of a parent, while at other times, that person has to step in as the adult caregiver and tell the aging parent what to do, just as Rumrill experienced with his grandmother.

Rumrill suggests that individuals who find themselves in that situation remain as open and honest as the circumstances allow. If they have safety concerns about an aging parent, for example, they should express those concerns, while at the same time respecting and honoring the lifelong relationship they have had with that parent. Adult caregivers should also continue to honor whatever resources and capabilities that aging loved one still possesses, he adds.

“Our parents and grandparents also have the right to know exactly what it is that we’re thinking and feeling and observing,” Rumrill says. “And if it’s a good relationship, it won’t be permanently undermined by that.” In the meantime, however, clients may have to deal with the conflict and resistance that result from those honest conversations, he says.

Some sandwich generation caregivers help to care for an aging parent from afar. That circumstance often ushers in feelings of guilt among caregivers, Rumrill says. One remedy he suggests is exploring how to use technologies such as Skype to stay as connected as possible. But that can be challenging, Rumrill admits, especially if aging parents aren’t tech savvy.

Rumrill also points out that issues of grief and loss can be present among caregivers even as an aging parent is still alive. Especially in cases of dementia, caregivers might mourn the loss of that parent’s former self. “Your mother as you knew her is never going to be the way she was,” says Rumrill, citing an example.

‘We need to ask that question’

The majority of unpaid caregivers in the United States are female, according to research published earlier this year from the National Alliance for Caregiving and the AARP Public Policy Institute. But Jacqueline Smith, director of the master’s counseling program at Regent University in Virginia Beach, Virginia, says that counselors can easily overlook caregiver-related stresses among female clients if they aren’t watching carefully.

“We teach our students to ask about domestic violence, we teach them to ask about sexual assault, we even teach them to ask about trauma in [clients’] backgrounds,” says Smith, a member of ACA. “But we’re not asking [clients], ‘Are you taking care of children and parents?’ We’re not asking that question, and we need to ask that question.”

A few years ago, Smith and two graduate students from Northern Kentucky University, where Smith was working at the time as director of the counseling and human services program, conducted a pilot study with nine women who were sandwich generation caregivers. One of the things those women expressed was a sense of isolation, Smith says. They talked about feeling alone and lacking others with whom they could share their experiences. Many of the women told Smith that they would like to go to counseling but didn’t have time to spend on their own needs because they had so many other people’s needs to meet.

Smith and the graduate students provided a support group as part of the study, and it received rave reviews from the participants. “This is the type of thing that we need — a place where we can be validated and share resources and experiences with one another,” Smith says the women told her.

Research has shown that caregivers have a higher incidence of depression, Smith says. “While we as counselors and as behavioral health care practitioners may be diagnosing depression, I think the depression may look different for individuals who are caught in this sandwich generation syndrome because they can’t get out of it,” Smith says. “This is not acute; this is long term, this is ongoing. This is a long-term, life-altering, everyday stressor. And I think it’s something that needs to be addressed and not medicated.”

In addition to support groups, Smith recommends resilience-building techniques as being particularly helpful to sandwich generation caregivers. “I believe that many sandwich generation women could handle their circumstances with a supportive, optimistic, hope-filled counselor who was looking to build upon the women’s strengths,” Smith says.

Among the ways Smith says counselors can foster resilience among these female caregivers include giving them a place to express strong emotions, helping them identify their strengths and encouraging them to advocate for themselves within their families.

Women who are caring for aging parents may also need help managing boundaries. “It’s definitely a balancing act between being [both] a daughter and caregiver to an aging parent,” Smith says. Beyond helping the individual caregiver client work on boundary setting in session, Smith says that in some cases, family counseling sessions can be helpful so that the caregiver can clarify changing roles and boundaries with her family members.

Another area in which counselors can offer assistance is helping these women to reaffirm their own personal identities. Between outside employment and their caregiving responsibilities to children
and parents, Smith says, women can easily lose a sense of their own identities as individuals.

Especially among African American women, Smith suggests that counselors take note of the importance of spirituality, both as a way to support these clients during the counseling process and in reaching out to them in the first place. Smith calls the church the center of the African American community and says that counselors might be able to connect with many sandwich generation caregivers by partnering with local churches.

Smith says support groups are “vitally important” to female caregivers as a whole because the groups offer women a place to be heard and validated as they share resources. Smith suggests that counselors consider partnering with either adult day care providers or child care providers when creating support groups for caregivers so that clients can participate in the groups without having to find alternative care for aging parents or young children.

Smith says counselors should be careful not to pathologize women who are facing challenges and stressors related to their caregiving responsibilities. Sometimes, there can be a tendency among mental health practitioners to “slap a diagnosis” on everything, she says. “As opposed to looking at what it is they’re doing right and how they can do more of [it].” Counselors must support resilience among these women instead, Smith emphasizes.

No one can do it alone

If caregivers are approaching burnout, Rumrill says, counselors might start hearing them say things such as “This is more than I can handle” or “I just can’t do this.” Other hints of burnout can include conflicts with other family members and signs of strain at work, he says. Ideally, counselors would encourage clients to seek help from their support networks to avoid burning out, Rumrill says.

Family caregivers can balk at seeking and accepting help, however, and their hesitancy isn’t necessarily connected to financial worries. Sometimes, Stoltzfus says, sandwich generation caregivers think they should be able to handle all the family’s needs on their own. In other instances, an aging parent may accept help only from certain people, such as a spouse or adult child. In the latter case, Stoltzfus suggests that counselors attempt to brainstorm other options with clients, such as identifying a friend the aging parent is comfortable with who is willing to pitch in and help.

In addition, there are services that can organize volunteer help from friends, Stoltzfus says. Lotsa Helping Hands (lotsahelpinghands.com) is one example. It offers a calendar at which people can post requests for help with anything from the provision of meals to being transported to medical appointments.

Counselors can also encourage caregivers to look within the family for additional assistance, Stoltzfus says. Sometimes caregivers make themselves feel responsible for seeing that everything gets done or, alternately, feel that everything has been dumped in their lap. It can be difficult to get clients to zero in on other family members who can help, but Stoltzfus says counselors should help caregivers see that no single person can manage everything on his or her own. Delegation is key, she says.

The counselor and client can work together on setting boundaries and being more assertive, Stoltzfus says. For example, if the caregiver works full time but the caregiver’s aging parent calls often during work hours, Stoltzfus might suggest setting one specific time to talk every day that fits within the caregiver’s work schedule.

Settings boundaries with other family members such as adult siblings can be challenging as well. Counselors can work with clients on assertiveness training, encouraging them to clearly communicate to family members what roles they are able to fill and what roles other family members need to step up and take on. In some cases, Stoltzfus coaches clients about how to discuss the financial responsibilities of caregiving with family members. For instance, in some circumstances, families have money available to pay for caregiving but prefer for that care to be provided by a family member. Although Stoltzfus acknowledges that it is a tricky conversation to have, she says that the designated family caregiver might consider talking with other family members about being compensated for the work that he or she is doing.

Caring for the caregiver

Caring for children and aging parents can leave little time for anything else, including self-care. Stoltzfus heard recently of something called the “bobblehead effect,” which she says applies to the topic of self-care. A counselor might suggest that the client take time out for self-care, and the client might nod and smile, just as a bobblehead would do. “But in their mind, they’re really saying, ‘How on earth am I going to do that? I have absolutely no time left in my day and no energy,’” Stoltzfus says.

Embracing self-care is something that clients have to do in their own time and in their own way, Stoltzfus says. Counselors should still bring up the concept of self-care in sessions, she says, but they need to understand that the solution isn’t as easy as the client simply agreeing with what they said.

For instance, she might suggest that clients overburdened by caregiving responsibilities should take one night per week to go out with friends, go to the gym or take the dog for a walk. “I’m going to say these things, and they’re going to be looking at me like I have no idea what their life is really like,” Stoltzfus says. “But over time, they realize that there’s absolutely no way they can make it without it.”

Stoltzfus will ask clients to rate their readiness for self-care activities on a scale from 1 to 10. “If they’re a 2, I say, ‘What would it take to get you to a 4?’” She’ll then check in with clients during sessions and help them set attainable goals. For example, Stoltzfus might ask clients to name one self-care action they can follow through on in the upcoming week. “Don’t impress me, don’t try to bite off more than you can chew,” she’ll tell them. “But, realistically, is it just lunch with a friend one day?”

At times, success comes when counselors appeal to the selfless side of caregivers, even as a way of nudging them toward caring for themselves. “Sometimes people won’t do it just for their own sake,” Rumrill says. “But those same people will resonate with the fact that if you don’t take care of yourself, then you’re compromising the care you’re providing to your children or your grandchildren or to your mom or to your grandma.”

Counselors can frame self-care as a necessity for being the best caregiver a person can be for other family members, Rumrill says. “Sometimes that works for people who are [otherwise] like, ‘Well, I wouldn’t do this just for me.’”

 

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To contact the individuals interviewed for this article, email:

 

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Want to work with sandwich generation families? 

If you are interested in working with sandwich generation caregivers, there are many ways to increase your level of expertise and find clients.

Educational opportunities for counselors are all around, says Meg Stoltzfus, a life span services manager in the Office of Work, Life and Engagement at Johns Hopkins University. For example, she says, the local Department of Motor Vehicles office might offer a seminar on how to talk to older drivers about when it is time to give up their driver’s license. A local Area Agency on Aging will often sponsor seminars on aging and caregiving topics as well.

Phillip Rumrill, a professor of rehabilitation counseling and director of the Center for Disability Studies at Kent State University, suggests checking out continuing education classes at a local university. Classes in human development or gerontology, as well as classes on grief and loss, can be particularly helpful, he says.

Connecting with eldercare lawyers, financial planners who specialize in estate planning and physicians who specialize in treating older adults can be beneficial to counselors in different ways. First, being familiar with these kinds of professionals will allow counselors to provide informed referral options when they’re needed by clients, Stoltzfus says. In addition, she says, those connections can result in new client referrals for the counselor.

— Lynne Shallcross

 

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Lynne Shallcross is a contributing writer to Counseling Today. She recently graduated with a master’s degree in journalism from the University of California, Berkeley, where she won a 2015 Online Journalism Award for best work in the small student projects category from the Online News Association. Her winning project was a master’s thesis titled “Mobile Health: Apps for Every Age and Ouch.” Contact her at lshallcross@gmail.com.

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