Tag Archives: caretaking

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.

The caregiving conundrum

By Tia Amdurer March 12, 2019

The branch of therapy that deals with anticipated loss due to death is a specialization that often gets overlooked. As a counselor who works with anticipatory grief and has five years’ experience in a hospice bereavement office, I have found that primary caregivers usually need guidance and support but don’t ask for it until they are completely overwhelmed. Counseling for end-of-life caregiving is very much an area in which good therapists can make the difference. 

Current Medicare standards for hospice do not cover the cost of a bereavement specialist for family members of a dying patient. Unless the family or caregiver seeks an outside therapist, chaplains and social workers affiliated with assisted living facilities or hospices become the de facto mental health experts, juggling family dynamics, anticipatory grief, medical regulations, spiritual concerns and the patient’s care plan.

Caregivers: The unsung heroes

Whether end-of-life care is being given in a home or a facility, caregivers can grow overwhelmed by the physical and emotional toll of their responsibilities. They may start showing signs of anticipatory grief, including mourning the loss of their role and relationship and fearing the future. This can be coupled with anger at the isolation and abandonment by others, bitterness at the exhaustion, frustration at the never-ending demands, shame for wishing caregiving were over already (which would mean the patient’s demise), helplessness at being unsure about what they should be doing and sadness at the way that time is running out.

In my book Take My Hand: The Caregiver’s Journey, Chris Renaud-Cogswell offered written reflections on her emotional overload with caregiving responsibilities: “I’m so jealous of all of you who enjoy your parents’ company and treasure the time you have with them. When do I get past the ‘I can’t believe this is my life,’ regretful, resentful stage? I have never used the F-word as much as I do since my mother moved in.”

Guilt seems to be the emotion that rises to the surface most often for caregivers. Even in the most “functional” homes, the intensity of caregiving can be enormous. For example, a spouse may not be capable of doing everything but still feels responsible for the care of his or her sick partner. Conversely, partners in good health may feel weighed down by the extreme change in their role and lifestyle. Adult children who are working or raising kids themselves can feel put upon to do more and angry that their time is so limited. Those caring for an elder may find old childhood resentments bubbling up. Relatives who might like to visit don’t know how to help. Asking for help triggers additional feelings of guilt and frustration among caregivers.

As grief counselors, we listen to recitations based on a lifetime of behaviors and try to help put boundaries in place. We validate and remind clients that they are doing the best they can under trying circumstances. Caregivers may struggle with the history of a poor relationship with the patient. These interpersonal dynamics are likely to continue being problematic. For many families, a storybook resolution or a full sense of forgiveness might be difficult to achieve.

One middle-aged man paid a daily visit to his dying father, who had a long history of being abusive and battling alcoholism. Despite the visits lasting for four or five hours, the man refused to interact with his father. Instead, he sat in a chair, played games on his phone and felt guilty. A daughter who had been constantly rejected by her narcissistic mother reacted by directing her frustration at staff for any minor infractions, fearing that her mother, who was dying, would deride her for her own lack of attention. In another case, an adult daughter wanted to scream at her mom for never asking for what she needed, acting out passive-aggressive patterns and playing the “martyr.” The daughter hated the nagging person she was becoming.

Caregiving can be a long journey, so, as counselors, we must explain the necessity of self-care for the caregiver. Even among caregivers who are fully engaged with their sick loved ones and content with their position, emotional exhaustion takes a toll. Whether dealing with a loved one’s personality changes or the loss of that person’s physical abilities or mental acuity, being on call as the “responsible adult” is draining. Caregiving can run the gamut of emotions and experiences, from boring to terrifying.

Self-care for caregivers includes asking for help, making schedules, sleeping, taking time alone, exercising, seeing friends, checking out support groups, praying, laughing, journaling, connecting through social media and, of course, learning to accept help. By presenting family members, friends, faith organizations or neighbors with specific ways to help, the caregiver is actually providing a service. Rather than viewing these “asks” as a burden to others, it can be reframed as an opportunity for others to do a good deed for the person who is dying.

A caregiver’s functions will depend on many variables. For instance, if the person who is dying is in a facility, the caregiver may be tasked with doing laundry, attending functions at the facility, visiting the sick loved one daily or weekly, finding coverage for meetings with facility staff to discuss behavior changes or concerns, driving the loved one to outside medical appointments, scheduling visits from friends and relatives, and maintaining a family home.

For at-home caregivers, responsibilities might include adjusting for safety precautions around the home. This might involve installing grab bars, removing throw rugs and acquiring nonslip mats, having a working fire extinguisher, checking that the water heater thermostat is set below 120 degrees Fahrenheit and preparing for durable medical equipment (such as commodes, hospital beds and oxygen tanks/cylinders). In addition, these caregivers typically shoulder the responsibility for being available to drive the person to appointments as necessary, finding coverage when away from the home and providing meals that are dietarily different.

Counselors should remind clients who have caregiver responsibilities that friends or relatives might be able to visit or engage in crafts or music with a sick loved one, thus allowing the caregiver some time off. To ward off burnout, caregivers need respite.

Thus we arrive at the conundrum of respite: “If I go away for a few days, what if my loved one dies? How will I live with the guilt?”

There are two scenarios at the end of life: One, the loved one dies when someone is with them and, two, he or she dies when no one is there. Caregivers often worry that their loved one might be alone when they die. Some hospices can provide 11th-hour care, during which volunteers can sit at bedside if the family wishes.

My experience in hospice has been that some patients follow a definitive trajectory in their decline, whereas others follow an indeterminate timeline, making a family’s desire to be bedside at the last breath fraught with uncertainty. Although many cultures encourage “vigiling” at the deathbed, there is an unknown: Does the patient want the family there? Some individuals need to be alone when they die and will release from this life only when the family or a specific person leaves. The speculation about why this happens is endless, but it may help alleviate family guilt to use the metaphor of a group coming to a bridge together, but because only the dying individual may cross that bridge, he or she will do it alone. 

Family dynamics

As counselors, we should encourage caregivers to see that a document such as Five Wishes (fivewishes.org) is completed while the elder is mentally competent. This document serves as a directive about how the patient wishes to be cared for at the end of life. It is a binding document like a living will. In considering end-of-life protocols, all adults should be encouraged to write down their wishes so that these are known in advance.

During a crisis or major upset in a family system, different personality traits come to the fore. Family members who aren’t the primary caregiver might assume many roles at the end of life: the Swooper, the Know-It-All, the Call-Me-If-You-Need-Me sibling, the I-Don’t-Know-Anything-About-Dying-Elders family member … All the family roles are intensified. Folks who have a personal need to make amends come crashing in. The Golden Child comes back for a weekend and questions everything that’s been done.

Renaud-Cogswell shared her experience in Take My Hand: “Mom was diagnosed with lymphoma a week and a half ago. The hospice team began coming to care for her at our house shortly thereafter. Brother wants to take mom to lunch. Incredulous, I tell him she is sick, she has lymphoma, and that he could bring lunch here. He brings lunch. He doesn’t, however, bring lunch for me. Not something I should be overly surprised by, but I am hurt nonetheless. Then brother asks Mom if she would like to move into his empty townhouse. (Alone.) Then he and his girlfriend begin telling her all the positives about moving in there. I say, ‘She’s sick. She needs 24-hour care.’ Brother says, ‘Since I kicked my renters out, I need the money.’

“Loudly enough for them to hear, but soft enough so that Mom doesn’t, I hiss, ‘She’s dying!’ Then what do you suppose this brother asks our mother? ‘Can I borrow $500?’ (Who asks their dying mother for money???) And do you know what? She gives it to him! This was yesterday. I ran from the minute my feet hit the floor in the morning till my head hit the pillow at midnight last night. I need to sit down and have a good cry, but today, I’m afraid, will be just as busy.”

There are additional complications that must be addressed when “helpers” come. For caregivers, it is a frustrating and delicate struggle between wanting support and allowing helpers to make mistakes while visiting. The strain of feeling that no one else can do the caregiving correctly is immense. Caregivers should establish safety rules that are nonnegotiable — for example, the parent cannot go out without oxygen, medications must be administered on time, hospice will be called if the elder falls.

Grief counselor David Maes created a template (see below) that can be used when conflict arises between family members. The template helps ensure that during a family meeting, the identified patient remains the center of attention. Family members respond to prompts written in the appropriate boxes. Other concerns are written outside the square in list format.

Start by asking the existential questions (the upper left-hand box): What is meaningful for the patient? Before the illness, what was the person’s worldview? How did he or she move through life? What was the essence of who they were? Next, move to the upper right-hand box, which deals with patient preferences. Ask what the person likes related to music, food, art, reading, nature, hobbies, etc.

The lower left-hand box deals with the illness: How is the diagnosis and prognosis affecting the loved one’s personality, behavior, likes and worldview? What gets in the way of who they are? Finally, list the resources: How is the family going to work together? What’s the plan of care? Who is responsible for what?

Counselors might need to remind family members that past relationship dynamics should have little bearing on the here-and-now focus of the discussion. The question to ask is, “Whose death is this anyway?”

Another protocol, from Susan Silk and Barry Goldman, is called Ring Theory (see tinyurl.com/RingTheory). In this exercise, the center circle is the patient, the subsequent circle is the primary caregiver and concentric circles can identify others who are less involved with daily care. The idea is that only comfort can go inward while the difficult emotions go outward. Family members and friends can offer unconditional love to each inner circle while finding their own support and a place to vent in extending circles. Each family member may find their own rings of support.

If end-of-life care is an area you are considering as a professional counselor, begin by learning about grief and bereavement. Alan Wolfelt’s comprehensive books are available through the Center for Loss & Life Transition (centerforloss.com). The Hospice Foundation of America also offers excellent webinars and books (hospicefoundation.org). There may be local support groups for caregivers in your area, and we should also be able to direct clients to resources such as the Alzheimer’s Association (alz.org) and AARP (aarp.org).

Competency in serving caregivers and families at the end of life involves a combination of approaches. We should be able to provide psychoeducation on dying and the needs of the dying. We should be competent listeners, validating and normalizing their experiences while encouraging life review and memory making. We can offer facilitation for family discussions. We can help our clients with boundaries, rituals and support groups. Finally, we can encourage the caregiver to engage in self-care, including therapy.

 

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Tia Amdurer is a licensed professional counselor and national certified counselor with a private practice, Heartfelt Healing Counseling, in Lakewood, Colorado, that specializes in grief, loss, life transitions and trauma. She is the author of Take My Hand: The Caregiver’s Journey, which was published last year (TakeMyHandJourney.com). Contact her at tiaamdurer@gmail.com.

 

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Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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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.

Helping families cope with cancer

By Laurie Meyers November 26, 2018

Cancer. The word alone can evoke terror amid visions of painful treatments and possible early death. Even though many advances have been made in cancer treatment, and despite the fact that heart disease is the actual No. 1 cause of death for adults in the United States, cancer is the diagnosis that many people fear the most.

Receiving a cancer diagnosis is often a devastating blow, not just to cancer patients themselves but to their families. At a visceral level, it is easy to imagine how frightening a cancer diagnosis must be for the patient, but many people — including the families themselves — often underestimate the emotional toll the disease can take on loved ones.

Dark times

Cancer casts such a dark shadow that licensed clinical marriage and family therapist Maya Pandit often encourages clients to refer to it as the “C-word” in an attempt to rob the term of its power. Cancer “is such a ‘big bad’ — not just because it can cause death but because the treatment is difficult and painful,” she says.

For family members, this means grappling with the fear of losing their loved one while hoping for a “cure” that often requires debilitating treatment. Pandit, who is trained as a medical family therapist, a specialized form of family therapy for individuals, couples and families who are coping with physical illnesses, notes that watching a loved one suffer can be more difficult than enduring the suffering oneself.

Managing physical illnesses such as cancer can be isolating and bewildering for patients and their families alike. That feeling of isolation, coupled with the stress of diagnosis and treatment, often strains family relationships — not just between the patient and other family members, but among family members themselves, Pandit explains. Her goal is to help families and couples cope with the reality of the diagnosis while providing support for the patient and one another.

When families are confronted with a cancer diagnosis, their coping strategies often follow a kind of all-or-nothing approach, Pandit says. For some people, the reality of their loved one’s illness is so painful that they refuse to talk about or even acknowledge it. Instead, these family members go on as if the cancer doesn’t exist and everything is fine. In contrast other people attempt to manage their anxiety by becoming hypervigilant and centering all aspects of daily life on cancer, Pandit says. Operating under either of these extremes only makes responding to the crisis more difficult, she adds.

As Pandit explains, getting each family member’s “illness story” is an essential step because it allows counselors to uncover the emotions and difficulties that have arisen from the diagnosis. Then counselors can begin helping the family find a more balanced way to cope. The illness story encompasses each family member’s experience of the crisis, which Pandit solicits by asking questions about when the symptoms started, when and how their loved one was diagnosed and how it felt for the family member to hear the diagnosis. These basic questions encourage a conversation that can help to verbally unlock clients, allowing Pandit to begin unwinding the emotional knots that keep family members from facing the cancer.

With clients who are hypervigilant, Pandit’s goal is to “open the door” to the thought that the cancer already plays a big role in their lives, and if they allow it to always be the primary focus, it will consume all family interactions.

“I often do an exercise in which I ask family members to fill out a pie chart of their lives and how much cancer has taken over,” she says. “We talk about the ways cancer has impacted their daily lives and the creative ways to take back what they can.” Activities such as watching TV shows and movies together or reading the same book and then discussing it serve not only as a distraction but also give family members something to talk about that isn’t related to cancer.

On the other hand, Pandit says that asking open-ended questions or talking about some of the common challenges that families coping with cancer face often helps resistant clients become more willing to speak about what they are experiencing. “If I make sure to be patient and as matter-of-fact as possible, even the most closed people open up at least a little,” she says. “I find that people want to talk but sometimes need time, space, a person who won’t shrink at the topic and, occasionally, some privacy.”

Pandit adds that the most frequent feedback she receives from family members is that once they have opened up and talked about their struggles, they feel lighter. “Talking about how people feel more often than not makes them feel as if they are not alone — that they can handle things one day at a time,” she says.

Family dynamics

Counselors should also keep in mind that each family member has his or her own individual and unique relationship to the person with cancer, says licensed professional counselor (LPC) Kerin Groves, who has worked with older adults in retirement communities, assisted-living residences, nursing homes and home care settings. “Relational dynamics are part of the family system, which often includes old baggage and unfinished business such as wounds or secrets from the past,” she says. “It is imperative that therapists ask each [person] about that individual relationship.”

Among the questions that Groves, an American Counseling Association member whose specialties include grief and loss, suggests that counselors should ask: “Who is this person to you? What does this diagnosis mean in the context of your relationship? What is the nature of your relationship to the patient, both past and present?”

“In that relationship, what are the sparkling gems and what are the sharp rocks? For example,” Groves says, “I have worked with family members of cancer patients who had deeply conflicted negative feelings about the patient, but they were aware that it was not socially proper to say so. They could either stuff their true feelings and experience inner shame and guilt, or they could speak out and experience open shame and guilt — quite a lose-lose scenario. In these situations, a therapist can best serve the family by providing a safe space for whatever needs to be vented, with no judgment.”

“Setting aside any conflicts in family relationships can be as simple as asking for it,” she says. “A counselor should not be afraid to pose the question: What relationships are you worried about right now that are distracting you? What do you need from [a particular family member] in order to set this aside for now? And what does [that family member] need from you? What needs to be said between you and [the family member] in order to move forward with more peace?”

“A counselor can be a rational outside resource in scary times,” Groves continues. “Family members make many critical decisions, and they need a safe place in which to explore options out loud and be heard, encouraged, supported, validated and attended to.”

A source of nonjudgmental support is particularly important because family members often fail to recognize or validate their need for emotional support, Pandit says. “It’s like, ‘You [the patient] are the one with cancer. What right do I have to be upset?’”

Pandit discourages family members from engaging in what she calls the “pain game” — a kind of comparison to determine who is in the most pain. She tells families that pain is pain and that it needs to be addressed, regardless of who is harboring it or the circumstances of those around them.

Mary Jones, an LPC who counseled patients and families during her 20 years in an oncology facility, agrees. She says that most of the adult family members with whom she worked, both in family counseling sessions and in a support group for caregivers, experienced debilitating emotional and physical side effects. These clients regularly reported being unable to focus, having trouble making even small decisions and becoming easily overwhelmed. With their worlds being transformed, sometimes overnight, by a loved one’s cancer diagnosis, some clients felt so disoriented that they wondered if they were going crazy, Jones says.

These family members were often irritable, especially if they were not sleeping well. They felt a pervasive sadness but were often afraid to cry lest they further upset other family members and friends. Physical symptoms such as backaches and stomach issues were also common. Not surprisingly, Jones says, the turmoil often affected these family members’ work lives and personal relationships. 

As Groves points out, counselors may not be working with cancer patients or families in a typical 50-minute therapy session. “Counselors working in cancer treatment centers, infusion clinics, oncologist’s offices and other medical settings may do mini-interventions of 15 minutes between physician visits, or two-hour support group meetings, or brief encounters in hallways or treatment rooms. In these settings, a counselor’s role should simply be [to act as] a calm presence. They are to listen, support, be a container for powerful emotions — including angry rage or hysterical crying — and provide warmth and acceptance.”

A life-threatening illness typically necessitates a major shift in roles and responsibilities within families. One of the things counselors can do is help clients prepare for and cope with these changes in family structure, says licensed marriage and family therapist Ryan Wishart, who also specializes in medical family therapy. For example, a mother with breast cancer who will no longer be capable of doing the bulk of the child-rearing would need the father or other family members to step in and shoulder more responsibility in that area. If the person with cancer is the family’s primary breadwinner but is too sick to work, it may require other family members finding additional means of financial support. Housework may need to be distributed differently, and older children may have to become more independent.

Wishart helps families assess and redistribute their duties by creating a deck of cards that have major roles, responsibilities and chores written on them. “We discuss who ‘owned’ which cards prediagnosis and ways that they can be redealt,” he says.

Groves raises a similar point. “There can be very practical concerns that lie under the surface and get ignored in the medical crisis,” she says. “For example, if one family member insists that the patient be able to go home but dumps the caregiving duties on to someone else, emotions can erupt. A counselor can help by walking the family through the practical options that are both available and realistic.”

Giving care

Caregiving is often one of the most difficult, emotional and divisive issues faced by families with a loved one who has cancer. Family members must work through questions such as what kind of care to pursue, whether a loved one can be cared for at home and who will provide the care.

“Many people get quickly overwhelmed with the details of the cancer journey,” Groves says. “There are just too many decisions and no crystal ball to see the outcomes of each choice. Treatment plans that are too aggressive are uncomfortable for many people, but cultural norms may prevent family members from disagreeing or questioning a medical professional. Palliative care can seem inhumane to some, sending the message that they have given up or don’t want to be bothered with the patient anymore. In addition, I have seen well-meaning doctors who refuse to give up and wait until just before the patient dies to call in hospice — much too late for the family and the patient to benefit from the supportive services they could have received in making the journey through death.”

Families may also disagree about what treatment should be pursued, forgetting that the choice ultimately resides with the patient unless he or she is no longer competent to make the decision. But even after the family has decided the where, when and how of care, providing it can be a time-consuming endeavor that is both emotionally and physically taxing. In addition, caregiving often requires difficult role adjustments or role reversals. For instance, parents battling cancer may become like children to their own children. Relationships may take on decidedly unromantic aspects when one spouse or partner needs to play a more parentlike role for the other spouse or partner.

It can be especially challenging and humbling for parents to give up so much personal control to their children, even if those children are now adults themselves, says Cheryl Fisher, an LPC whose areas of specialization include counseling families and individuals with cancer diagnoses. However, counselors can help these parents see this shift in a different light. Fisher, an ACA member, says she often reminds parents of all the years they spent getting up in the middle of the night or staying up late to give care to family members. Now it is their time to receive and accept care from others, she tells them.

With adult children, Fisher says, the adjustment usually involves probing to see what aspects of caregiving they feel confident about and which ones give rise to discomfort. Personal hygiene is a particularly sensitive area, she points out, because sons are typically uncomfortable with the thought of bathing their mothers and daughters are typically uncomfortable with bathing their fathers. Fisher validates this discomfort, letting her clients know that it is perfectly acceptable to look for home health care support for that particular task. She then talks about other areas of caregiving with which the adult children might be comfortable, such as housekeeping, cooking, doing yardwork or providing transportation.

Fisher also helps adult children who are geographically distant from their parent come up with ways that they can participate with caregiving. For instance, they may be able to contribute financially or pragmatically, such as by locating home health care support or paying for respite care. Perhaps they have enough vacation time to fly in every few months to visit and give assistance to the parent. Distance caregiving can also consist of smaller personal acts such as sending cards and care packages or FaceTiming with a parent while the sibling or other family member who provides most of the in-person care gets a much-needed break to take a nap or make phone calls.

Pandit says that couples going through a cancer diagnosis often don’t know how to talk to each other about the ways that caregiving changes the dynamics of their relationship. She helps these couples explore means of ensuring that caregiving doesn’t take over the whole of their relationship — for example, by dedicating time to just being partners again through activities such as a regularly scheduled date night. She also encourages couples to make sure they continue to talk about things other than the cancer.

Cancer foments a significant amount of fear and guilt, and caregivers often feel that if they make a “wrong” decision or take time for themselves, their loved one will get worse or even die, Jones says. This makes it even more difficult to convince caregivers to engage in self-care. Jones explains to caregivers that to properly take care of their loved ones, they must also take care of themselves. With male caregivers, she found it particularly helpful to tell them to picture themselves as a car. As a car, the caregiver must go to many destinations. Cars, of course, require gasoline to run. So, Jones would ask, what happens when the car makes a lot of trips without stopping to fill up the gas tank?

Similarly, Jones would direct women to picture themselves as a pitcher full of resources and imagine that everyone surrounding them was holding a cup. With so many cups to pour, unless the caregiver refilled her own pitcher, her loved one’s cup would eventually go dry.

Jones also recommends that clients who provide care to a family member with cancer literally schedule self-care for themselves. Making an appointment for self-care — just like making an appointment for the next cancer treatment — helps reframe it so that the caregiver starts viewing self-care as a means of survival, not a selfish desire, Jones says.

True self-care goes beyond taking breaks, getting enough sleep and eating healthy regular meals, and the source is different for everyone. Jones urges clients to identify the things that make them feel nourished. “What recharges your batteries? What fills your cup back up?” she asks. Jones says she finds even a little time interacting with nature rejuvenating, but for others, it may be practicing yoga, meditating, spending time with animals or reading a good book.

Something else that Jones urges counselors to do is to ask caregivers to identify things they can “outsource” that would make life easier. This might involve thinking of friends willing to volunteer a few hours of house cleaning each week, asking a neighbor to walk the dog or seeing if a church care group would be willing to make and deliver 10 days’ worth of casseroles.

Because caregivers are continually fighting burnout, guilt and isolation, Jones thinks that group therapy is a particularly effective method of support. Among others who understand their struggles, caregivers and other family members can more freely give voice to emotions that they don’t necessarily feel comfortable expressing anywhere else. They can admit to being tired, angry, resentful or hopeless without fear that they will be judged poorly. Groups are also a good place for brainstorming and solving problems, Jones says. Individuals can share their challenges, and other group members can talk about what has worked best for them.

Coping with the unknown

The treatment process for cancer is usually hard on everyone. Pandit says the constant ebb and flow of watching a loved one struggle and not knowing for certain that it is going to be worth it in the end is often agonizing.

Groves agrees. “An unknown prognosis is very hard for families [and patients] to tolerate,” she says. “The fear of the unknown is powerful. Facing a known outcome is certainly frightening, but at least there is little or no ambiguity. With a terminal prognosis, there are fewer choices to agonize over. There may be more powerlessness but fewer regrets.”

A terminal diagnosis can sometimes be a “strange kind of blessing,” Pandit says. Knowing the end is coming often encourages loved ones to say things they might never express otherwise, both to the person who is dying and to those who will be left behind.

“Whether the diagnosis is terminal or chronic, a good counselor will bring up universal existential concerns … [such as] fear of incapacitation, of death, suffering, aloneness, meaninglessness, and normalize them,” Groves says. “This allows family members to recognize that their fears are common to the human experience and that it is safe to talk about them. The counselor may not have a solution but does offer accompaniment on the journey.”

That perpetual state of suspended animation that accompanies an unknown diagnosis is painful, but for some family members, it is still preferable to admitting that it is time to let go. Cancer patients are often the first to recognize this truth, and as long as they still have all of their faculties, it is ultimately their choice whether or when to discontinue treatment, Fisher notes. However, family members sometimes remain in denial and may refuse to acknowledge the patient’s impending death, even pushing for continued treatment.

Jones recalls a female patient whose husband had accepted that the time had come to cease treatment but whose adult children kept insisting that the family could “find another way.” The constant badgering was completely exhausting to the patient. She finally turned to Jones and said, “I need you to look my kids in the eyes and say, ‘Your mom has three to six months to live.’” Jones followed the woman’s wishes and then urged the children to ask themselves how they wanted to spend the last months of their mother’s life.

Fisher had a 36-year-old female client with a terminal diagnosis who had moved into inpatient treatment. The woman’s mother kept bustling into the room with vases of sunflowers and other things. Her stated intent was to make the room pretty until her daughter could come back home. The daughter, in obvious distress, yelled, “Mom! I’m not coming home!”

Fisher asked for some time alone with the client and helped her come up with the words that she needed to say to her mother, which were, “I’m going to die, and I need you to be here with me.”

“Counselors often worry too much about techniques and forget to just listen,” Groves says. “Our presence is our best intervention.”

 

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Supporting the client who has cancer

“Fear is the constant companion of the cancer patient,” says Kerin Groves, a licensed professional counselor (LPC) and American Counseling Association member. “Fear that the diagnosis is wrong, fear of telling young children too much or not enough, fear that the surgeon didn’t get it all, fear that the chemo or radiation missed a few rogue cells, fear [during] remission [of] the cancer coming back, fear of getting a new type of cancer, fear of long-term effects of chemo or radiation, fear that tiny bump or growth is cancerous, fear of going out in the sun after skin cancer, fear of every stomachache or headache, fear of loss of sexual function or cognitive function, fear of social stigma with body disfigurement and so forth.”

“These chronic fears are exhausting and can exacerbate into an anxiety or mood disorder,” Groves continues. “Acknowledging fears is the best way to take the power out of them, so invite a patient to tell you all the fearful thoughts that run through their head. They can write them down or say them aloud, with no rules and no judgment. ‘Let’s release them all,’ I tell patients, ‘like taking out the trash. We don’t need them stinking up the house.’”

One of Cheryl Fisher’s current clients had cancer for many years before achieving remission and outliving the original prognosis. However, the client recently reported that she can feel her fear returning. She told Fisher that she doesn’t want to let the fear in because she is concerned about what it might do to her mentally and to the cancer itself. Fisher, an LPC and ACA member, told the client that when people fight back against what they’re feeling, it causes stress hormones to rise. So, ultimately, she says, it is better to face the fear head-on.

“When I’m sad or angry or afraid, I like to pull it outside of my body and look at it,” Fisher told her client. “Fear, you’re here. What is prompting this? What is it trying to tell me?”

The client told Fisher she was afraid that she was already living on borrowed time. As a consequence of this belief, the client was in essence just waiting for the cancer to come back, Fisher explains.

To counter the client’s sense of helplessness and being “stuck,” Fisher acknowledged that neither of them could prevent the cancer from returning, but she asked the client to consider what she did have control of. Did the client have things she had been putting off that she would like to do? Did she have things she was holding on to that needed to be said?

Another of Fisher’s clients was a newly diagnosed cancer patient who seemed to want Fisher to “somehow absolve her from her journey with the diagnosis.”

“I don’t have a magic wand,” Fisher told her. “There’s nothing I can say that will lift you from this journey that you have to go through, but I can promise that I can be there with you side by side during the journey. I can’t solve this for you, I can’t make it go away, but I promise you I will be there with you.”

Fisher notes that being an unflagging source of support is perhaps the most essential role that counselors can play with clients who are seriously or terminally ill. Sometimes, a cancer patient’s family or friends cannot or will not endure their inherent fear and stress to be by their loved one’s side, but counselors can step in and fill that gap, she emphasizes.

“Existential concerns are within all of us, with or without cancer, but cancer and other critical illnesses have a way of bringing them to the forefront,” Groves says. “The work of [Viktor] Frankl and his logotherapy concepts are very valuable for counselors to read and learn. While in a Nazi concentration camp, Frankl came to understand that each of us has a choice in how to respond to our circumstances, no matter how horrific. When all a human’s [other] choices are taken away, we still have the choice of facing our suffering with dignity. This can be empowering for a cancer patient, when presented by a sensitive counselor who honors the values and humanity of the patient.”

— Laurie Meyers

 

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Additional resources

To learn more about the topics discussed in this article, take advantage of the following select resources offered by the American Counseling Association:

Counseling Today (ct.counseling.org)

Books and DVDs (counseling.org/publications/bookstore)

  • Counseling Strategies for Loss and Grief by Keren M. Humphrey
  • Mediating Conflict in Intimate Relationships, DVD, presented by Gerald Monk and John Winslade

ACA Mental Health Resources (counseling.org/knowledge-center/mental-health-resources)

  • Resources for Professional Counselors

Podcasts (aca.digitellinc.com/aca/store/5#cat14)

  • “When Grief Becomes Complicated” with Antonietta Corvace (ACA252)
  • “Integrated Care: Applying Theory to Practice” with Eric Christian and Russ Curtis (ACA149)

Webinars (aca.digitellinc.com/aca/store/5#cat46)

  • “ABCs of Trauma” with A. Stephen Lenz (CPA24329)
  • “Children and Trauma” with Kimberly N. Frazier (CPA24331)
  • “Counseling Students Who Have Experienced Trauma: Practical Recommendations at the Elementary, Secondary and College Levels” with Richard Joseph Behun, Julie A. Cerrito and Eric W. Owens (CPA24339)

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

 

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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.

Letters to the editor: ct@counseling.org

Lessons on becoming a therapeutic care receiver

By Linda Bowen Wasicsko, as told by M. Mark Wasicsko June 26, 2014

Linda-and-Mark

My wife Linda Bowen Wasicsko began this article before her death, and I have finally finished it. It is based on a series of workshops we developed and delivered together on caregiving and care receiving. It details her personal journey to become what she called a “therapeutic care receiver.” I believe this is a much-needed viewpoint, both in our profession and our society, because little is written about this perspective.

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I have primary progressive multiple sclerosis (MS) that, over the course of 30 years, has slowly drained me of many physical abilities. However, as reparation of sorts, MS has taught me, among its bountiful lessons, how to be a therapeutic care receiver.

This article shares what my life, career and professional training as a counselor taught me about being a good care receiver. I offer it to my fellow counselors who are in the midst of dealing with the challenges of receiving care, as well as to my temporarily abled colleagues who, when their turn comes, will also want to be good care receivers.

Caregiving and care receiving

The literature, as well as our practice, is replete with information about caregiving. Being a caregiver, while fraught with challenges and generally undervalued by our society, is seen as noble, selfless and altruistic and, as many caregiving survivors attest, can provide some of the most rewarding and growth-producing experiences life can offer. But this isn’t the case for care receiving. Information regarding the care receiver’s viewpoint, let alone how to be good at it, is much harder to come by. Moreover, it should be no surprise to learn that the transformation from being a dispenser of empathy as a counselor to the target of others’ sympathies comes with ample challenges and stressors. But it is also accompanied by generous opportunities for growth.

As my MS progressed — slowly erasing my sight, my ability to walk and swallow, and then my practice — I became increasingly dependent on others for my care. I discovered, however, that my education and counseling experience gave me tools to stay engaged and positive and also to become the kind of care receiver who can still provide benefit to loved ones and caregivers.

Evolving to the point of becoming a therapeutic care receiver entailed being in a good place within myself about the inevitability of where I was heading. This was a corequisite for figuring out how to intentionally and continuously establish and maintain healthful and mutually sustaining relationships with my caregiver(s), family members and the public. Interestingly, becoming the care receiver I wanted to be, especially after having to cease my practice due to my increasing limitations, proved as challenging to me (and sometimes more challenging) as working with my most demanding clients.

If you can’t get out of it, get into it

Most of us chose counseling careers in order to help people grow and increase their level of happiness. There can hardly be a more satisfying feeling than when this happens. For people whose core dispositions and professional identity revolve around helping others, being on the receiving end of the stick is a difficult and painful pill to swallow. As I could perform fewer of my activities of daily living and had to rely on others for more and more of my care, I realized I could either rail against what is and slip into despair or find my worth and identity in new ways. I knew I had to learn to accept increasing amounts of care from others with grace and gratitude.

An old Chinese proverb says, “You cannot fully live until you come to grips with the fact that you will surely die.” Progressive degenerative diseases provide lessons in this fact that most people can temporarily ignore. For me, accepting the undeniable fact that both time and abilities have an expiration date ultimately led to a peaceful and hopeful view. This was not hope for a cure but the hope that comes from looking forward rather than backward; from taking stock of the good and positive things in life and never looking back at or regretting the things I no longer have or can no longer do. When my sight blurred, I found my listening became keener. When I could no longer walk, first a scooter and then a wheelchair served as my legs. When I developed dysphasia and could no longer eat by mouth, I relished in conversations that wafted across a dinner table surrounded by family and friends. And when my progressive disease required me to surrender the profession I loved, I found that being mindful, looking outside of myself and staying in the moment permitted me to experience great contentment.

Lessons from Buddhist monks

One of the toughest and most constant challenges I faced was dealing with the feeling of being a burden to others. I learned that Buddhist monks eat only food prepared for them by others. This is not so that they can spend their time in more “monkly” pursuits such as meditation or practicing compassion and humility. Rather, it is to provide people with the growth-enhancing privilege of taking care of others.

This made me realize that people deserve the opportunity to help others so they can experience the same emotional and spiritual benefits that counselors experience through our practice. I learned that permitting others to provide care for me can be a gift to them if done within a therapeutic relationship.

Be grateful for what you have

In our work, we encounter many people who are pining away their lives and wishing for things they do not have or once had but lost. Regrets weigh heavily not only on the soul but also on the ability to grow and be happy.

It is not uncommon for people with infirmities to become trapped in vicious cycles of loss and grief. As abilities erode, it is easy to lament or obsess over one loss only to find that, in the interim, the next ability has slipped away too. Moving forward in positive and therapeutic ways entails engaging in some grieving and then adapting to the changes by taking stock of what abilities remain and focusing on them.

ride-on-the-wheelchair

When she was no longer able to run and play with her grandchildren, Linda instead gave them rides on her wheelchair.

Fortunately for me, a silver lining revealed itself from behind each dark cloud. When I could no longer run and play with my grandchildren, I could plop them on my lap and give them a ride on my scooter or wheelchair. They had a special grandmother who played with them in ways that many others couldn’t. When I could no longer schedule clients, people seemed to magically appear who needed an ear to listen to them and a mirror in which to reflect.

Don’t wait, do it now

Another major lesson was not to postpone important things. It is difficult to overcome the deeply ingrained hope that with time or by ignoring problems, things will get better on their own. With a large number of the bumps and bruises experienced throughout my life, that is exactly what happened. Sometimes life can be remarkably self-healing.

As incontinence began seeping into my daily existence, I caught myself avoiding going out because I feared not finding a restroom in time. I experienced the “boiling frog syndrome” in which the decrease in my social interactions was so gradual that I was unaware of the creep of undesirable consequences. I was slowly warming to a life — separated from family and friends, devoid of social events and most other life joys — that was the exact opposite of what I wanted. Risking the embarrassment of losing bladder control and strapping on Depends involved a difficult and agonizing decision and transition. Body transcendence, I realized, was much easier to understand as part of my academic preparation than it was to live with. To decouple my self-worth from my diminishing control of bodily functions required a lot of positive self-talk and external focus, as well as the gentle support and encouragement of others.

A second example occurred a few years later as I moved into the paraplegic stage. Here again, I found my old desire to “wait for things to heal themselves” was strong. In addition to dealing with the loss of my ability to walk, I worried about people feeling sorry for me or that I would become one of the invisible handicapped who are no longer the recipients of direct eye contact, only sideways glances. Luckily, I discovered that I could still be myself, albeit with mechanical help, and that friends and strangers alike could still see me.

To help counteract a developing agoraphobic mindset, I started using a scooter and later an electric wheelchair for shopping and visiting friends. To my pleasant surprise, I found that it opened new lines of communication with people I encountered. One day, while cruising through a department store, a preschooler slipped away from his mother’s grasp and ran up to me grinning. He was completely fascinated with my means of travel.

“Wow, that is a neat car!” he said. “Why do you get to ride it?”

“Because my legs don’t work well,” I explained.

“Oh, I hope my legs don’t work someday so I can ride one too!”

This led to a wonderful conversation and impromptu counseling session with the little fellow’s mother about the challenges of raising preschoolers. Ironically, I found that my challenge with mobility proved a catalyst for me to do storefront counseling.

Start a gratefulness project

When confronted with mounting challenges, it is hard to avoid slipping into a despairing, woe-is-me mindset. Positive psychology posits, however, that we can increase our general level of happiness with a few simple practices each day:

  • Count your blessings rather than your sorrows.
  • Always express gratitude.
  • Keep in mind that many others have it worse than you.

I started each day by mentally listing things to look forward to and ended with a review of the day’s positive happenings. I became mindful to notice and acknowledge all the good, kind and helpful things that happened during my day and made an extra effort to express my gratitude for each event to the person(s) involved.

The third leg of my positive psych stool involved avoiding the pity-party mentality. I did this by reminding myself of the good and positive people in my life and remembering that others have to make it with far fewer resources than I possess.

Give the gift of listening

Some people are always surrounded by friends and family, while other people are avoided like the plague. The shunned tend to be egocentric and negative, spending much of their time miserating — my back hurts, I haven’t had a bowel movement in days, no one ever listens to me.

Those embraced by others tend to ask questions, show interest and focus most of their attention not on their own difficulties but on the lives and issues of others. Intuitively, they employ the skills we were taught to use with our clients — the same active-listening skills I used to be a therapeutic care receiver. I would ask people about their day, their issues and their problems. I added value to these relationships by using my skills to help them gain perspective, just as I had in the past with my clients.

The personal gains were significant too. I continued contributing to the well-being of others and received better care in return. Also, I always knew more about what was going on in people’s lives than anyone else!

Insist that the load be shared

For me, the toughest things about needing care were the loss of privacy and the resulting dependence on others for the most intimate activities of daily living. Losing control of basic bodily functions triggered tremendous modesty and self-consciousness issues. The unintended but inevitable consequence of this was to become overly dependent on a single caregiver. How many people do you want dressing you, changing your Depends or feeding you through a tube? However, to be a therapeutic care receiver (and for the sake of the primary caregiver), I had to permit and even encourage numerous others to provide this care.

Two strategies helped me deal with these issues:

1) Engaging the caregivers in meaningful conversations about their lives while they were dealing with my most intimate activities — in essence, supplying them with a counselor’s ear as they provided me with personal care.

2) Seeing my challenges as teaching tools through which others might learn.

Even my granddaughter, then 7 years old, could be a care provider. She took great pride and pleasure in feeding me my liquid lunch of Ensure. If she had her way, I would have been fed hourly throughout her visits.

I want you to stay, but you need to go now

There is a good reason why flight attendants say, “Always put on your oxygen mask before helping others.” If the plane loses cabin pressure and you fall into unconsciousness, you can be of no help to others.

Caregiving is the same way. For the sake of both parties, caregivers need to maintain their health — physical, emotional, spiritual — if they are to provide care and not succumb to the negative side effects that are all too common. Caregivers, especially if they are family members and loved ones, need to be given permission or even prodded to take the time needed to attend to their own health.

Caregivers can feel guilt that they are not having to endure the same trials and tribulations that a loved one is going through. They may also experience guilt when they need respite time to recharge themselves, feeling — at least temporarily — “unresponsible.”

My primary caregiver (my husband) was like that. As the therapeutic care receiver, I had to insist that he have a regular and predictable routine. He needed to know of and look forward to times of being away and taking care of himself, just as much as I needed to know of and look forward to his return. This is one of those life paradoxes: Pushing caregivers away to take the necessary time to recharge themselves allows them to return and provide better care. It also builds a more therapeutic relationship.

A last lecture

Through his excellent book and video The Last Lecture, Randy Pausch attempts to help his family through the trials of his impending death and the aftermath. While knowing there is no way around the pain, grief and hardships that accompany the loss of a loved one, he sets in motion a series of actions that can potentially facilitate the process. This serves two beneficial purposes. First, it helps survivors through an anticipatory grief process by gradually helping them move beyond denial and to an acceptance of the inevitable. Second, it can help relieve some of the stresses on survivors to make too many decisions on very weighty topics.

One of the most convenient and practical ways the therapeutic care receiver does this is by making as many estate decisions as possible and openly talking about them with loved ones. On my list: a living will that included potential organ donations; a “do not resuscitate” order; and funeral wishes not to have a formal ceremony (I never liked being the center of attention in life, so I sure wouldn’t want it when dead!). I requested cremation with my ashes spread in the mountains of my birth. Rather than flowers or cards, I asked people to spend a few moments with loved ones or commit an act of kindness in my memory. I also gave instructions for what to do with my personal belongings.

I tried to communicate these wishes explicitly and often enough without seeming morbid or intentionally bringing people down. The personal benefit of helping my family work through these issues helped me to gain acceptance and peace as well.

On becoming a therapeutic care receiver

When I first decided to apply the skills I had acquired through helping others to myself, I realized the kind of care receiving I wanted couldn’t be a one-way street. Good care receiving, like most therapeutic practice, involves a system of engaging in mutually beneficial relationships in which all parties are concerned with and have responsibilities for the well-being of the others. The ability of all participants in the enterprise to thrive rather than merely survive is just as much the responsibility of the care receiver as the caregiver.

My journey to becoming a therapeutic care receiver provided so many unimagined benefits:

  • It allowed me to maintain my dignity.
  • It fulfilled my need for a helping purpose.
  • It facilitated my body and ego transcendence.
  • Of most importance to me, it permitted me to be an active, value-adding participant in the lives of the people I loved most.

To my fellow counselors, I offer you these thoughts and insights for when your turn comes, as it does for us all. Becoming a therapeutic care receiver may provide you with the most challenging client you will ever encounter, but the benefits are better than gold.

 

Epilogue by Mark Wasicsko and family

Linda died at home in the arms of loved ones. We believe one of the reasons she stayed as long as she did, way beyond what medical science predicted, was because she wanted to provide us with as much anticipatory grief counseling as possible. Even as she struggled with ever-increasing physical and medical challenges, she remained positive, upbeat and “other centered.” Through the way she lived her life, she taught us much about dignity, patience and compassion. And she did the same for a large and extended family of daughters, grandchildren, friends and clients. Her family and friends can attest to her success at being a therapeutic care receiver. She lived a beautiful life.

Having the privilege of being beside her through her struggles taught us that happiness is all about the people in our lives and focusing on the positives. It’s about doing what you can, not wishing you had more or regretting what was or might have been. One of the greatest lessons Linda taught us is that “living happily ever after” is done one day — and even one moment — at a time.
As she was so fond of saying, “Happiness is a choice, so why not choose to be happy?”

 

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American Counseling Association member M. Mark Wasicsko is professor and Bank of Kentucky Endowed Chair in Education at Northern Kentucky University. Contact him at wasicskom1@nku.edu.

 

Letters to the editor: ct@counseling.org