Tag Archives: Family

Supporting families on their autism journeys

By Lindsey Phillips May 1, 2020

Maria Davis-Pierre, a licensed mental health counselor (LMHC) in Lake Worth, Florida, first suspected her daughter might be on the autism spectrum when she was 6 months old and showed signs of sensory issues. Then at 10 months, her daughter, who had been saying simple words such as “mama,” “dada” and “ball,” suddenly stopped speaking. When Davis-Pierre and her husband tried to get their daughter to mimic them saying the words, she acted as if she had forgotten them. As a therapist, Davis-Pierre understood the importance of early intervention, so she was proactive about getting her daughter a diagnosis. But it wasn’t easy.

Her pediatrician referred her to health professionals who specialized in developmental delays in infants and toddlers. They tested her daughter and thought she had autism spectrum disorder (ASD), but because she was still so young (around 18 months), they didn’t feel comfortable officially diagnosing her. They recommended she see a pediatric neurologist.

After more tests (which cost the family thousands of dollars out of pocket), the pediatric neurologist agreed about the presence of ASD but was also uncomfortable officially diagnosing the child at such a young age. Davis-Pierre told the doctor she was going to sit in his office every day until her daughter got a diagnosis. One week later, that finally happened.

Davis-Pierre thought the next steps would be easy, especially given that both she and her husband are in the health care field. But what she experienced was more frustration.

“At no point — even with the neurologist — was there a check-in with the parent: ‘OK, this is the diagnosis. This is what happens next,’” Davis-Pierre recalls. “It was, ‘OK, here’s your paperwork. This is the diagnosis. Now, go figure it out.’” According to Davis-Pierre, the health care professionals didn’t provide her family with resources or give any consideration to how the family’s culture would factor into their daughter’s treatment.

When Davis-Pierre spoke with other parents of children on the autism spectrum, she found out that this treatment was the norm. And it left her — and the other parents — feeling overwhelmed.

This experience prompted Davis-Pierre, an American Counseling Association member, to start Autism in Black, a private practice that specializes in helping black parents of children with autism get the help they need.

In a blog post on the website GoodTherapy, Janeen Herskovitz, an LMHC in Ponte Vedra Beach, Florida, points out four areas in which counseling can help parents of children with ASD: adjusting to the diagnosis (which is often traumatic for parents), learning parenting skills, staying connected to their partners, and managing stress. Professional counselors can also help families prepare for developmental transitions, learn to effectively communicate with one another and extended family, and navigate cultural barriers.

Working through developmental transitions

ASD “is a neurodevelopmental disability, which means at different developmental stages, our clients are going to run into different developmental barriers, and they’re going to need us as counselors,” says Chris Abildgaard, a licensed professional counselor and director of the Social Learning Center in Cheshire, Connecticut. So, it’s important for counselors to understand where families are on their journeys, he points out. Is the family adjusting to the diagnosis? Are they struggling to communicate with their child? Are they helping a child through puberty? Counselors should also prepare to help families with life milestones such as going to prom, getting a driver’s license or grieving a death, Abildgaard adds.

Some families experience grief when they first learn about the ASD diagnosis, says Michael Hannon, an assistant professor of counseling at Montclair State University in New Jersey. These families will be reconciling a new reality and having to let go of certain elements of the relationship they expected to have with their child. “It’s really about [the family] learning to adjust to the needs, strengths, capacity, and some challenges of the people they love living with autism,” he adds.

Another challenging transition for parents and caregivers is when the child enters adulthood. Parents have likely been involved in every aspect of the child’s life, especially in the school system, so it is a significant adjustment when the child takes over this responsibility, Davis-Pierre says. She helps ease this transition by having parents teach their children to advocate for themselves before they reach adulthood. The more parents involve children with ASD in the day-to-day decisions about their lives and school, the more they realize that their children are capable of advocating for themselves, she says.

Abildgaard, an ACA member who specializes in ASD (and author of the 2013 Counseling Today article “Processing the ‘whole’ with clients on the autism spectrum”), has noticed that families sometimes push their child to do something that the child isn’t ready for or doesn’t want. For example, parents often ask him how they can make their child have a friend. Counselors need to educate parents that relationships take time and that individuals on the spectrum may not fully understand the intricacies of relationships and friendships. They will need support and coaching in this area well into their late teens, early 20s or beyond, he says.

Counselors can also help parents make plans and prepare for certain life events and developmental transitions, Abildgaard says. He finds visuals useful in helping families with a child on the spectrum to process events. Recently, he had a family who was going on a trip to a large city. He brought out his whiteboard and on one side wrote down all the thoughts and feelings the parents were having about the upcoming trip, such as feeling anxious that their child would have a tantrum and run from them. Then, Abildgaard asked the parents to consider their child’s perspective and why he might have a tantrum. On the other side of the whiteboard, he wrote down the child’s thoughts and feelings, such as being overwhelmed by all the lights and sounds.

This activity helped the parents realize the link between their own thoughts, emotions and behaviors and those of their child. It also started a discussion about proactive strategies the parents could take to decrease the likelihood of their child experiencing sensory overload. This, in turn, lowered their anxiety about the trip, Abildgaard says.

Helping families stay connected

Having a child with autism affects the entire family system, Abildgaard says. It affects how parents interact with each other, how parents interact with each of their children, how siblings interact with each other, and how the family interacts with extended family members.

Couples don’t typically preemptively discuss the possibility of a having a child with a disability, Davis-Pierre notes. So, when a child is first diagnosed with autism, parents often have to reassess the roles, expectations, responsibilities and core values of the family, she says.

Counselors may also have to coach families through complicated life events such as divorce. Abildgaard, an adjunct professor in the Department of Special Education at the University of Saint Joseph, reminds counselors that regardless of the situations that families bring to them, it is important to break these situations down into manageable parts for the clients.

When the parents of a client with ASD were going through a divorce, Abildgaard, a nationally certified school psychologist, brainstormed with the parents how best to explain the situation to their son. Abildgaard also learned from the client’s school that the child had been making comments about the divorce there. Abildgaard says his role as a counselor was to help the client process and express his feelings about the divorce. To do this, he said, “Tell me some things your eyes are noticing that are different at home.” He made his language concrete and specific, which allowed the child with ASD to talk about what he had been noticing, such as his parents arguing more. The boy also said he was scared to talk about these things with his parents, so he and Abildgaard worked through his anxiety together.

Then, Abildgaard brought the entire family into his office to discuss these issues. He chose to have them come in during the morning hours when his office would be quiet so the family would be more comfortable and not feel rushed or distracted.

Balancing the parenting of both neurotypical and neurodiverse siblings is another common challenge that Hannon and Davis-Pierre hear about from their clients. They try to help parents learn how to better communicate with their children and to maximize and be intentional about the time they spend with each child.

Hannon, a licensed associate counselor in New Jersey, uses empathizing strategies to help parents understand what their neurotypical child is feeling. For instance, he asks, “What would your neurotypical child say about this experience right now?” and “What would the child say about how you attend to the sibling with autism compared to how you attend to his or her needs?” This exercise allows parent to empathize and reconcile some outstanding issues with their neurotypical children, he explains.

Davis-Pierre’s clients also report struggling to know how to engage with their neurodiverse children. “We’re so used to looking for [the child to verbalize] … the actual feeling that we’re not looking at the behavior of what the child is showing,” she says.

She has parents role-play to gain perspective on what the child might be thinking or feeling and to increase awareness of behavioral patterns. (For example, Davis-Pierre has noticed that her daughter expresses happiness by flapping her arms and spinning in circles.) If appropriate, she has the child role-play with the parent, but if that is not possible, Davis-Pierre does it herself. To increase understanding, parents can also keep a behavioral journal or use the picture exchange communication system, which allows individuals with little or no verbal communication to present a feeling card to communicate their feelings, Davis-Pierre adds.

Children on the spectrum pick up on their parents’ and caregivers’ emotions more often than people think, Abildgaard points out. However, if they do sense these emotions, they often don’t know what to do with them. Children on the spectrum may appear to be ignoring the person or emotion, but in many cases, they just don’t have the language or perspective-taking ability to process the emotion and the “right” response to it, he explains.

So, Abildgaard works with parents to help them process their own emotions and then explain those emotions to their children so they aren’t left to interpret them on their own. In fact, parents can overtly model how to handle certain emotions such as anger or frustration. Abildgaard often suggests that parents (especially those with younger children on the spectrum) put themselves in “time out” to show their children that even adults need breaks.

Cultural implications

According to a 2014 report from the Centers for Disease Control and Prevention, 1 in 59 children in the United States have been identified with ASD. But this number doesn’t take into consideration cultural and racial implications such as delayed diagnosis. According to a 2019 news report on Spectrum, which bills itself as “the leading source of news and opinion on autism research,” black children with autism are often diagnosed later than white children, misdiagnosed more frequently with other conditions such as behavioral problems or intellectual disability, and underrepresented in studies of autism.

Hannon attributes the disparities in diagnosis rates to 1) inequalities in access to health care, 2) mistrust of health care systems among people of color and 3) greater misdiagnosis of symptoms in minority children as behavioral rather than developmental.

Davis-Pierre says the history of racism and discrimination in U.S. health care may persuade some black families not to be completely honest with health care professionals when discussing their children because they fear their children will be taken away. For example, frustration and exhaustion are normal responses for families caring for a child on the autism spectrum, perhaps leading someone to say or think to themselves in a particular moment, “I just can’t do this another day.” But many black families fear serious repercussions should they admit to such passing thoughts with a counselor, Davis-Pierre explains.

Even the treatments families choose for their children are often informed by one’s culture. Applied behavior analysis (ABA) aims to help individuals on the spectrum increase behaviors that are helpful and reduce behaviors that may be harmful to them by positively reinforcing desired behaviors. Debate has swirled, however, over whether ABA is helpful or harmful. According to a 2016 article on Spectrum, some have criticized the therapy for being too harsh in how it corrects maladaptive behaviors and for attempting to make people on the spectrum “normal” instead of advocating for neurodiversity.

But for some families, Davis-Pierre says, ABA makes sense. For example, a black child spinning in circles and banging his head against something in public will often be viewed differently than would a white child who exhibits the same behavior. In this instance, ABA can help protect the black child by helping him learn to replace the maladaptive behavior — one that could put him in danger — with a more socially accepted behavior, Davis-Pierre explains.

The harsh reality is that black people often have to operate differently in public settings because of prejudice and racism, she continues. So, she advises families to consider their child’s behavior and safety when choosing the best treatment for their child’s autism.

Davis-Pierre, author of Self-Care Affirmation Journal and Autism in Black, also finds that clinicians often don’t respect the culture of the home when treating children who are on the spectrum. A client once told Davis-Pierre that she had a therapist come into her home and not remove their shoes despite seeing a place for them by the front door. This act made the parent feel disrespected, and she no longer wanted the therapist in her house working with her child.

Another of Davis-Pierre’s clients was upset by a therapist who had made a decision involving her child without consulting the mother first. While the therapist and child were working together in the family’s home, the child wet himself. The therapist wanted to help the parents by changing the child herself. When the mother discovered that the therapist had gone through her child’s clothes drawers to find clean underwear, she felt as if the therapist had been snooping.

Abildgaard says his role as a counselor is to help clients on the autism spectrum adapt to different social situations and understand social context and social norms for particular settings and cultures. Counselors need to be aware of clients’ cultural and religious norms before instilling certain perceived social skills such as maintaining eye contact, he says. For example, as Abildgaard points out, some Asian cultures make eye contact only with certain people or in certain situations. So, counselors should understand the whole child before prioritizing what social skills or competences are most relevant to focus on in session, he asserts.

Religious beliefs can sometimes pose another barrier to seeking treatment. For instance, Davis-Pierre says, people in the black community are often taught to pray about their problems and not to discuss problems with anyone outside of the family. Counselors may assume that families who aren’t willing or enthusiastic participants in therapy are resistant, but as she points out, they may actually be having an internal struggle between seeking counseling and feeling that they are still maintaining their faith in God.

Davis-Pierre often uses genograms to help clients identify family patterns, such as other family members with a developmental disorder, or cultural values that have been passed along that no longer work for the family. Through genograms, she has noticed that her clients’ families often inherit a pattern of keeping secrets that hurts, rather than helps, the family dynamic. Davis-Pierre acknowledges that even she had a difficult time explaining to her extended family why she and her husband are so vocal about their daughter being on the autism spectrum.

Hannon and Davis-Pierre say that counselors have to be brave and willing to talk about clients’ and families’ cultures and about inequalities based on race and ability status. Starting this conversation can be as simple as including a question such as “What cultural traditions should I take into consideration?” on the intake form, Davis-Pierre says. This question shows that the clinician is already thinking about how culture affects treatment, she explains.

Supporting dads

Abildgaard argues that fathers are often overlooked when thinking about an autistic individual’s support network, so mental health professionals must do a better job of incorporating dads into the therapeutic process. He has noticed that mothers with children on the spectrum are often more proactive about independently finding and supporting each other, whereas fathers, even though they are involved in their children’s care, don’t tend to form support groups on their own. Abildgaard suggests that counselors could offer focused support services such as fathers’ groups or “dad’s night out” events to help these men learn from and bond with other fathers in similar situations.

Such support groups matter when it comes to providing care to individuals on the spectrum. Hannon, an ACA member who specializes in the psychosocial aspects of autism on fathers and families, often co-leads a group for fathers who have children with ASD. These men have reported that just being connected with other fathers who share similar experiences can be life-changing. In these groups, dads find others who speak their language and understand their journeys, which makes them feel heard, Hannon says. Groups also help fathers become more aware of their own needs and challenges and discover effective coping and adjustment strategies, he adds.

Fathers also spend a significant amount of time thinking about their children’s prognoses, their children’s futures, and the ways they can prepare their children to live full lives, Hannon says. In his dissertation, he studied the experiences of black American fathers of individuals with autism. At the ACA 2018 Conference & Expo, Hannon presented his findings from a grounded theory study on how diverse fathers orient themselves to their children’s diagnoses. Fathers often want to help their children who are on the spectrum, he continues, but if they have been raised with certain gendered expectations, counselors may need to take a few extra steps to help these dads increase their efficacy with day-to-day activities such as helping with temper tantrums.

Counselors may also need to help fathers retain focus on their emotional journeys because men are often task-oriented in how they solve problems, Hannon points out. Also, because men have often been socialized to engage only with specific emotions such as lust and anger, counselors may have to dig deeper with them to reveal the other underlying emotions. For example, counselors could suggest, “You’re angry, but it sounds like the source of your anger is fear for your child’s safety.”

Generational pushback

Parents sometimes face generational challenges in caring for their children. Hannon describes a common scenario that fathers often share with him: They leave their children in their grandparents’ care, providing suggestions for ways to best communicate with the children and guidance on particular eating preferences. To which the grandparents might respond, “We’re not doing any of that. We’ll do what we want with our grandchildren. They just need a good talking to.”

Such scenarios often leave parents of children on the spectrum feeling frustrated. If the parents and grandparents have a good, healthy relationship, then counselors can help parents learn to communicate openly and honestly with the grandparents. Hannon advises parents to lead with love and acceptance before critiquing the grandparents’ interaction with the children. Parents can first emphasize how the grandparents love their grandchildren before saying that they just want to show them additional, special ways to show love to a grandchild on the spectrum. 

When Abildgaard works with grandparents who need help accepting their grandchild’s diagnosis of ASD, he starts by saying that he could use the grandparents’ help to allow him to better understand their grandchild. Once this barrier is broken down, he finds that grandparents tend to ask more questions and start honest dialogues about grandchildren who are on the spectrum. 

Counselors can also help clients realize that while it is OK to establish boundaries with extended family, they should aim to set realistic boundaries that honor both the child on the spectrum and the family, Davis-Pierre says. For example, if a family depends on grandparents to provide child care, then the family must be particularly careful in setting boundaries. At the same time, the family can still have a respectful conversation with the grandparents about the needs of the child and family.

Adjusting language

Abildgaard’s clients with ASD sometimes complain that their parents always ask the same question after school: “How was your day?” Because, from their perspective, their days are always the same, the children wonder why their parents ask something they already know the answer to. 

Abildgaard advises parents to instead use concrete language such as “Tell me two good things about your day and one thing you would have changed.” This phrasing gets to the heart of what parents actually want to know from their child and makes the conversation more productive, he says. 

Abildgaard is also careful about the language he uses with clients with ASD and their families. Recently, the mother of one of his clients (a boy in sixth grade) told him that her son ran out of his classroom at school. When the boy walked into his office, Abildgaard said, “Tell me two good things about your day and one thing you would have changed.” This prompted the client to tell Abildgaard he had run out of his classroom.

After admitting this, the boy looked at Abildgaard, seemingly waiting to be chastised. Instead, Abildgaard asked the boy, “What do you think I’m thinking right now?”

The boy responded, “You’re thinking you are mad at me.”

Abildgaard drew a thought bubble on a whiteboard and wrote the client’s thought inside the bubble. Then he drew another thought bubble and wrote what he was actually thinking: “I’m wondering what made him run out of the room.”

The boy’s body language instantly relaxed. This exchange took Abildgaard out of the authoritarian role and shifted the conversation from focusing on the problem to focusing on how to solve the problem.

Similarly, Hannon recommends that counselors focus on strengths, and not just deficits and challenges, when working with families who have a child on the spectrum. He makes a point of asking parents about the victories they have had that week or month.

This question prompted one of Hannon’s clients to share how his son had used appropriate language and displayed empathy — a skill the child had previously struggled to demonstrate — that week.

The child’s mother had said, “I’m going to run through the shower.”

The child on the spectrum responded, “No, you can’t do that because you’re going to fall.”

Even though the child hadn’t grasped the true meaning of his mother’s words, he had shown concern for his mother and responded appropriately, which was a huge victory for this family, Hannon says.

Support often makes all the difference. Davis-Pierre and her family’s autism journey may have had a challenging start, but they eventually found health care providers who worked with them as a team. With this support, Davis-Pierre and her husband were able to stop focusing so much on the challenges and instead start enjoying their child for who she is.

 

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Lindsey Phillips is a contributing writer to Counseling Today and a UX content strategist. Contact her at hello@lindseynphillips.com or through her website at lindseynphillips.com.

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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.

Exploring the ties that bind

By Bethany Bray April 24, 2020

Family therapy pioneer Virginia Satir famously said, “If we can heal the family, we can heal the world.”

Satir believed the family to be the “factory” where all people are made. She was among the first to champion an idea now commonly acknowledged among counselors: A person’s family of origin and family relationships influence that individual’s health, personality and life patterns — and, when explored in therapy, provide a fuller picture from which to help the client. That understanding can be expanded even further when the individual consents to involving family members in counseling sessions.

When considering whether it is appropriate to involve a client’s family in counseling sessions, “I look at what the primary focus of our work will be,” says Esther Benoit, a licensed professional counselor (LPC) with a private practice in Newport News, Virginia. “If the primary focus is on relational [issues], I want to bring in as many people as can possibly show up to sessions.”

Regardless of whether professional clinical counselors work with family groups, couples or individuals, an exploration of family issues can provide a more holistic picture of clients and what is contributing to their presenting issues.

Heather Ehinger, a licensed marriage and family therapist in Connecticut, urges practitioners to ask questions that dig into the traditions, boundaries and roles in the family systems in which clients operate. For example, perhaps clients perceive their role within their family to be that of the troublemaker or the placater. How did they arrive at that role? Is it a role that they desire
to inhabit?

“Using a family systems lens to treat anyone is very important,” Ehinger says. “Even if all you do is treat individuals … [using] a holistic lens, a family systems lens, in their assessment … will enrich any counseling that did not include that already.”

Trauma and transitions

Although discussing a client’s family background or involving family members in counseling sessions can enhance work with clients regardless of what brought them to counseling, there are a number of issues for which family work can be particularly helpful. The counselors interviewed for this article report that issues related to trauma and transitions — such as blending two families after a second marriage — come up repeatedly in their work with families.

Trauma, including past sexual, physical or emotional abuse, can often lead to problems with attachment in families, notes James Robert Bitter, a counselor educator who supervises graduate students at East Tennessee State University’s (ETSU’s) on-campus community counseling clinic. There is also the trauma of separation. Bitter says several students he supervises are counseling young clients who are in foster care or being raised by grandparents because their parents are incarcerated or struggling with addiction.

“[In] family therapy these days, in our area, we’re not working so much with children and families because they are structurally misaligned or have difficulty with psychiatric disorders. We are much more working with trauma and working with families to be more effective in how they raise children,” says Bitter, a professor of counseling and human services who specializes in family counseling and the Adlerian method. “When there’s been a rupture in attachment issues, helping clients [relearn attachment] in a compassionate way is hard. The people who have been traumatized are way outside the natural bond.”

Kristy A. Brumfield, an LPC at a group practice in Philadelphia, finds that working with families in groups can often help those who are struggling with transitions such as the arrival of a new baby, a move, or the particulars of co-parenting after a divorce.

Transition challenges can also crop up naturally as families grow and age, Benoit adds. For example, families may find that formerly established patterns that used to work well around the areas of discipline and boundaries begin to cause friction as children turn into teenagers. Professional counselors can serve as valuable sources of support and guidance as families take a step back and examine the patterns within their systems, says Benoit, who specializes in relational work with individuals, couples and families across the life span.

“Working through developmental things is huge [with families], as well as attachment and focusing on relationship patterns,” Benoit says. “Also transition points. Anytime there’s an expansion or contraction of a family system, that’s when people often seek help. It can be a birth, a death, a divorce or a blending of a family. Sometimes, what was working before is no longer working.”

Getting together

The term “family counseling” may invoke thoughts of the traditional nuclear family, with juvenile children and parents sitting together and talking with a clinician. This arrangement can and does happen, but family counseling also encompasses groupings beyond the immediate or traditional family unit. It can involve any constellation of family members willing to participate who are relevant to or involved in the family’s presenting issue and who could benefit from work on communication patterns and relationship issues.

When involving multiple people in counseling sessions, counselors must first identify who the client is and what that entails, including privacy issues. In some cases, the individual who first sought counseling will be the client; in others, a couple or the entire family group will be the client. (Find out more about this essential conversation in the 2014 ACA Code of Ethics, including Standards A.8. and B.4.b., at counseling.org/knowledge-center/ethics/code-of-ethics-resources.)

Benoit says she always begins counseling with family groups by fully explaining and defining the therapy relationship and letting the family decide if they would be comfortable with a group format. “I like to put the ball in the client’s court and give them a chance to decide if this modality feels right and will address what they want it to in counseling,” says Benoit, a member of the American Counseling Association.

Recently, Benoit received a call from a couple seeking counseling for their twin teenagers struggling with stress related to being in high school. The twins were both gifted and very bright. Benoit first met with the parents, without the twins, to learn more about the situation and to explore the family dynamics. She quickly saw that the family’s relationship was strong and healthy, which meant that wasn’t the issue of concern. Instead, the twins needed space to process some complicated emotions — feeling close and supportive of each other and yet sometimes simultaneously competitive with each other in academics, sports and extracurricular activities.

When Benoit had her first session with the twins, she talked over several options with them: individual work with different counselors, seeing her together for sessions, or having the entire family involved in counseling. Benoit stressed that if the twins decided to come to her together for therapy, they would need to stay together for sessions. She gave the twins time between their first and second sessions to think it over.

“Because of the uniqueness [of their situation] and how connected they were to each other, they felt it was most appropriate to be seen together,” Benoit recalls. “Ultimately, they decided that this felt like the best option [for them].”

Benoit emphasizes that this process will look different for each client and must be tailored to fit each client’s needs and presenting issues. For example, she has another set of juvenile siblings on her caseload who see her separately as individual clients. Their presenting issues are very different, and their counseling work does not overlap, so individual sessions work best for them, she explains.

The symptom carrier

Ehinger owns a group family counseling practice with two locations in Connecticut. Her staff of therapists is able to collaborate and co-treat family groupings and individuals within families who need counseling on separate issues simultaneously.

Frequently, in families, there is one identified person who is symptomatic and causes the family to seek counseling, such as a teenager with an eating disorder or a child with attention-deficit/hyperactivity disorder. Even so, the problem often runs deeper and affects the entire family. “The idea is that one person is holding the symptoms, but it’s not the only problem within the family system,” says Ehinger, an ACA member with a doctorate in counseling education and supervision.

This is especially common when couples have an unhealthy relationship or are going through a divorce, she says. Their child may be the one who is symptomatic, but the issue is rooted in the parents. “The child may be afraid to go to elementary school and has a lot of anxiety. The parents have talked with the school and find that it’s not anything academic, and the child is not being bullied,” Ehinger says. “Then we might find out from the parents that the father moved out two months ago, there’s a lot of fighting and there are lawyers involved. They may say, ‘We’re not fighting in front of the kids.’ [But] whether they’re fighting in front of the kids or not, this child is absorbing the energy and knows there’s something going on.”

Ehinger and a colleague at her practice co-treated a family in which a teenage son was identified as symptomatic. The parents initially sought counseling for the 16-year-old because they said he was grumpy and defiant, staying out past curfew, skipping classes and experimenting with substance use.

The teenage son started individual counseling with a male clinician at Ehinger’s practice. Because the practice specializes in family systems issues, the clinician viewed the teen’s troubles from a systems perspective and soon uncovered a larger challenge. The answers the teen gave to questions about his family life indicated there was tension in the home and that his parents were having trouble.

The family also had a daughter who was a freshman in college. When she came home for holiday break, she refused to return to school and started displaying defiant behavior and some of the other symptoms her brother had shown. As these challenges unfolded, Ehinger began working with the parents, while her colleague worked with their children. Sometimes they would all convene for sessions together, with four family members and two clinicians in the same room.

Ehinger’s conversations with the parents in counseling revealed that the couple had experienced an issue with infertility and that both of their children were adopted. The couple hadn’t resolved their grief over their infertility, and that contributed to them struggling with their adopted children gaining their independence and beginning to “launch” from home, Ehinger says.

Within a few months, the symptomatic teenager was no longer “the problem” — the couple’s marriage was, Ehinger says. The son’s symptoms dissipated as counseling helped him find autonomy, and he subsequently stopped acting out as often.

This family’s presenting issue was due to problems with attachment, Ehinger explains. “The parents hadn’t really grieved the loss of having the ability to have their own children. They were extremely sensitive to being ‘perfect’ parents. They felt they would be failures if they weren’t perfect parents to these adopted kids and were pointing fingers at each other out of frustration.”

The issue was exacerbated, Ehinger recalls, because the parents had large extended families with lots of children, so they felt inadequate and insufficient compared with their relatives.

Ehinger worked with the mother to boost her self-esteem and process her infertility grief in individual sessions. With the couple, Ehinger also focused on grief processing, as well as finding safety within their relationship. They talked about “how to be intentional with each other, how to relate to each other, what their idea of marriage is, and how they [could] be more intentional to get to that,” she says. She also provided psychoeducation on why transitions, including child development during the teenage years, are so hard for families.

Ehinger often uses narrative therapy with families, and in this case, it was particularly helpful. In this family, the narrative was that the husband and wife felt like “bad parents,” the son was the “troublemaker,” and the daughter had always been the “good one,” although she later struggled when she came home from college.

“We worked to change that story: The parents were not bad but hypervigilant. We taught them about attachment, normal teenage rebellion and helped them recreate the narrative of their family,” Ehinger says. “We talked about roles: How did [the son] get the role of the troublemaker? Did he want to keep it? Did he ask for it? Who would resist him shedding that role? What other role could he [and other family members] become?”

Uncovering patterns

Benoit finds structural family therapy and experiential family therapy helpful in her work with family clients. Both modalities focus on interaction patterns within family groups.

“A family’s whole systemic interaction pattern can be shifted by changing small behaviors. That’s why it’s so important to identify those patterns,” says Benoit, a full-time faculty member teaching online at Southern New Hampshire University.

One way counselors can encourage families to shift long-held and unhealthy patterns is to raise family members’ awareness of the roles they play within the system. “For example, sometimes one member will be the family’s harmonizer, smoothing over all conflict,” Benoit says. “Those roles often dictate how members interact in day-to-day interactions, but also during conflicts and transitions. Understanding the roles that are played and how those influence interactions can help challenge family members to explore alternatives and to try on new roles as their family systems grow and change over time.”

Benoit’s focus on patterns involves careful listening and close observation of the ways that family members talk and interact, both verbally and nonverbally, in sessions. This includes body language as well as the tone and subtext of what is said verbally. “I’m taking it all in,” she says.

Perhaps the family members always sit in the same order for each session, for example, or one child always sits with one parent and distances themselves from the other, or the children always look at their mother before saying anything. Often, families don’t even realize that these patterns are happening or that there might be deeper meaning behind them, Benoit says.

Her method is to gently point these patterns out to the family, framed by curiosity. Her approach doesn’t paint the behaviors necessarily as being bad, but rather just as something to ask about and gather more information on.

“With family counseling, families are coming to us to get information and feedback, so pointing out patterns can help,” Benoit says. “Over time, I might point [a pattern] out to the family and say, ‘This is what I’m seeing. Help me understand where this comes from, and how it helps in your relationship. … Tell me about what this behavior means to your family.’”

For example, a child may always sit between his mother and stepfather in session. What might this symbolize? Is it a physical representation of the bridge-building role the child plays in the family? Benoit would bring up this observation, framing it as a question or a “tell me more” prompt.

“It’s something to explore. It doesn’t always mean something, but it’s worth asking,” she says. “And I get it wrong all the time. Sometimes the family will say, ‘Gosh, no!’ and then it just helps me to learn more information” about the family system.

Behavior patterns within families can also be rooted in culture or context, Benoit adds. For example, a young child who always defers to his or her parents or waits to speak in counseling sessions can be exhibiting a sign of respect taught within the family or culture.

Uncovering patterns and the meanings behind them demands that practitioners be present and focused on each moment in session. It also requires keeping a curious mindset, Benoit says. “One of the reasons I love relationship counseling so much is that instead of working with one person, you’re working with multiple people. But more importantly, you’re working on the space between people,” she says. “It’s really dynamic and powerful work.”

Processing trauma

Bitter counsels clients with the internship and practicum students he supervises at ETSU’s on-campus counseling clinic, which offers free services to members of the community, many of whom have minimal or no health insurance coverage. Bitter says he starts thinking about other family members who could be involved in counseling work within the first session with a client. From his perspective, all issues that bring clients to counseling are family issues in one way or another.

“Everything is a family issue,” says Bitter, who will be publishing a third edition of his book, Theory and Practice of Couples and Family Counseling, with ACA this fall. “Instead of family or couples [counseling], a broader term might be relational counseling. From the moment we are born, we are in a relationship. We can’t survive without them.”

Bitter recalls one client whom he has counseled for multiple years (beginning when the client was 14), with various counseling interns also being involved in one-semester intervals. Initially, the client’s aunt contacted ETSU’s counseling center to request help for her nephew.

The client’s mother struggled with addiction and had been married four times, in addition to having multiple other relationships, all of which had been immersed in drug culture. The youth — the second of his mother’s five sons — had seen “a constant stream in his young life of drug dealers and men with whom his mother was having relationships,” Bitter says. By the time the boy was 5 or 6, he had taken on the role of unofficial parent and caretaker for his younger brothers. He would get them up and dressed in the mornings and make sure they had food to eat, and he would clean the house.

When he was 9, the boy and his older brother went to live with their father, who had alcoholism. There, the client also took on caretaking tasks for his brother and, to an extent, his father. Bitter notes that the boy would have to ask his father repeatedly for money to buy food for the household.

At one point, the youth called his aunt and asked if he could stay with her. The aunt took him in and called the ETSU counseling center for help. Initially, Bitter saw the teen as an individual client (at the teen’s request). But in sessions, the youth would claim that he was “fine” and never bring up anything to talk about.

“The trauma and neglect in this boy’s life led him to be depressed but also led him to be very secretive. He had a very, very hard time telling me what was going on in his life,” recalls Bitter, an ACA member. “When you grow up being a little boy who has to take care of everyone else, you have to present a really good face to the rest of the world and learn to act as if everything is fine, until it is not.”

Eventually, Bitter worked with the youth to involve his aunt and grandmother — the most supportive family members in the client’s life — in counseling sessions. In their work together, Bitter focused on ways to rebuild the teen’s broken family while removing the caretaking role he had shouldered for so many years. “I asked the adults to be a family, and the aunt and grandmother were willing to do that,” Bitter says.

A year and a half later, counseling began to include a focus on the teenager transitioning from living with his aunt to moving back in with his father, who had worked to get sober and secured a job as a landscaper. “The counseling center helped with that transition and rekindled relationship and also reversed the pattern of trauma [in the family],” Bitter says. “We helped him to live as a child again and rely on the adults in his life. Now he has an aunt, grandmother and father who are functionally caring for him.”

The teen will soon turn 17. He’s doing well but is “still careful and cautious in relationships,” Bitter says. “He has two good friends and can’t really handle more than that.”

The teen and family’s recovery came “after two years of [counselors] constantly seeing this family, encouraging them and literally teaching them how to talk to each other, helping them with how to respond to each other,” Bitter says.

Effective parenting

In addition to working through unresolved trauma, much of what Bitter focuses on with families in counseling is changing unhealthy parenting patterns. Parents often come to the counseling clinic at their wits’ end because of behavior problems with their children.

The world has changed dramatically over the past century, but parenting styles, on the whole, have not, Bitter contends. With what counselors know about attachment and the benefits of using boundaries rather than punishment with children, practitioners are well-equipped to offer psychoeducation to parents who are struggling, he says.

“The majority of people parenting today, when we’re at our best, we sometimes parent better than our parents did, but when we’re at our worst, we all parent at about the same level our parents did — and we have to assume they did the same thing,” Bitter says. “Most of parenting is teaching [clients] how to form really good bonds with children and help them grow and develop.”

Bitter says a counselor’s role is to offer guidance rather than explicit instructions or commands to parents. “I wait for the client to say what they did and then ask, ‘Did that work for you? How did it go?’ If you had to spank your child [multiple] times per week, then it’s not working. Let’s talk about what might work [instead].”

Counseling can also normalize parents’ challenges, sending the message that they aren’t alone in their struggles. “They get to see that they’re like every other family — if you have children, you’re going to make a mistake every day,” Bitter says. “Often, parents are doing a pretty good job but just need [extra] help. But those who are dealing with trauma, or dealing with a bond between a child and parent that has to be reconnected, that takes some time and patience.”

Bitter draws on a number of methods to help parents, including Jane Nelsen’s positive discipline approach, Michael Popkin’s active parenting system, the Systematic Training for Effective Parenting (STEP) program, and James Lehman’s Total Transformation trainings for parents. However, Bitter emphasizes the “natural consequences” concept when it comes to child discipline.

As a child, Bitter says he hated Brussels sprouts, but his father loved them, so the pungent vegetable often appeared on the family dinner table. This circumstance frequently escalated into verbal battles, with his father insisting that Bitter was going to eat Brussels sprouts and Bitter insisting otherwise. Use of the natural consequences philosophy can circumvent such parent-child power struggles.

“Now we know that if parents serve a variety of things and a balanced diet, over time a child will make good choices,” Bitter says. “If you make [healthy] food available, a child will eat it. I recommend that parents model good eating habits but not get into fights over what the child is or isn’t eating. [When a child refuses to eat something], say ‘OK, don’t eat that.’ The natural consequence is that the child will get hungry. If they say, ‘I’m not eating breakfast’ [with the rest of the family], a parent should say, ‘OK.’ The child will come back at 10 a.m. and say, ‘I’m hungry.’ The parent can respond [by saying], ‘OK, lunch is served at noon, and you’ll make it until then.’”

If these types of patterns are repeated often enough, children will learn from their experiences and realize the natural consequences of their choices, Bitter points out.

He gives another example: Perhaps a mother who is struggling with a defiant adolescent finds that the child pushes back on her instructions to come out of the mall to be picked up at 3 p.m., despite having been dropped off for shopping with friends hours earlier. Bitter says he would ask the client, “What would happen if at 3 p.m. [when the child isn’t there], you just pressed on the gas in your car and drove away?” When the child calls to ask why Mom isn’t there to pick him or her up, she can calmly explain that she was there at 3 p.m. but the child wasn’t. Now, Mom has other things to do but will return to get the child when she can, Bitter says.

The crux of this method is for parents to learn to control themselves, Bitter says. Once they learn and find control, their child (or children) will follow.

“This is not difficult stuff. It’s hard to put into practice but easy to understand. Part of this is just helping couples and families get there,” Bitter says. “It takes patience on the part of the parent. The parents we are seeing are extremely frustrated because what they’re doing isn’t working. … If you put these [concepts] into practice, [parents] will have a more harmonious life with their children. It’s just a question of getting started.”

Playing together

Brumfield is a registered play therapy supervisor and has used play therapy not only with children, but with adults and families, for 18 years. While play therapy with children is mostly unguided, Brumfield provides prompts and gentle guidance for the adults and families on her caseload, often in the form of games and activities. This can include asking a family to create a puppet show or to play out a story using puppets in session. Among the many benefits of this approach, Brumfield says, is helping adults “reconnect to the playful parts of themselves.”

Brumfield, a member of ACA, also uses music and art in her work with families. For instance, she might ask family members to draw their answer to a counseling prompt. Or she’ll pass out rhythm instruments and have the young children beat a pattern, while the parents are encouraged to add to it or to repeat it back to the children on their own instruments.

Observing how the family interacts during these activities tells Brumfield a lot about the relationships, patterns and roles within the family. For example, is one person dominant and leading the entire plan for the family puppet show? Or does everyone work on drawing on their own, almost as if no one else were in the room? “While watching them interact, I see the gaps and places where the family might grow,” explains Brumfield, who is also a counselor educator at Immaculata University in Pennsylvania.

In addition to in-session activities, Brumfield encourages families to make time for activities together at home. These can run the gamut from a game of hide-and-seek or a family bike ride to board games and puzzles. She recommends games that encourage conversation and that are cooperative rather than competitive. One of her personal favorites is the Ungame, a board game that directs players to answer various questions to encourage conversation but has no winner. Similarly, families can use a conversational card deck — a number of which are available online — to spark healthy discussion at mealtimes.

When it comes to “assigning” families activities to do outside of session, Brumfield likes to have each family member think of three things they would like to do together. “Children often have ideas readily, and the children are really the ones teaching the parents. I ask the parents to think of their own childhood and what they enjoyed or things they wished they were able to do when they were a child,” Brumfield says. “The primary goal is connection and helping them be more cohesive and work together.”

Boosting family connection typically involves taking a break from technology, Brumfield adds. She often requests that clients try to unplug during family activities. An exception is when technology prompts bonding, such as when a teenager invites his or her parent to play a nonviolent video game together.

Playful activity — inside and outside of counseling sessions — helps families to be less guarded with one another, Brumfield notes. It also boosts communication, joy and vulnerability. Parents might feel silly at first, and that’s a good thing, Brumfield asserts. She reassures parents that letting their guard down to play does not lessen their authority or diminish boundaries.

“When family members are more vulnerable, they’re more able to be seen. It can increase [the family’s] understanding of one another,” Brumfield says. “The children can see their parents differently — as more human. The parents are able to feel reconnected and able to have fun with their children, which can help balance more challenging times for families. … For younger children, mastery can be learned. It can be a confidence boost to be able to participate and learn to be a part of their family. For parents, they’re able to see the things that their children are capable of. Parents often want to do everything for a child, [and play] helps them discover what they can do for themselves.”

Brumfield encourages counselor practitioners to remember the power of play, regardless of whether they specialize in play therapy. “We all — counselors and clients alike — need to be connected with the playful parts of ourselves,” she says. “Remember the importance of humor in our work. It can even be a form of self-care. Think of play as a way to release, stay centered and help in other facets of life.”

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Families and technology

Heather Ehinger, a licensed marriage and family therapist in Connecticut, says conflict over technology use comes up over and over again in her work with families.

This includes fighting between parents and children (and among couples) about which technology is being used and how often. In addition, a couple may have differing views over the age at which their children should have access to technology (such as their own cellphone) or whether they should be allowed to have a computer or video game system in their bedroom.

The conflict that arises over one or more family members’ use — or abuse — of technology can be a flashpoint or an indicator of deeper issues. Technology isn’t necessarily what brings a family in to counseling, Ehinger says, but it’s often a contributor to their presenting issue.

“Technology is not the problem exactly, but it is part of the problem. It feeds into authority issues and discipline,” Ehinger says. “Technology is like a thorn in the family’s side, but it actually turns into the lens through which we see whether the family is functioning or not.”

Ehinger worked with one family who had a son in fourth grade. He was acting out at home, having tantrums and pushing back against boundaries with his mother, who was a stay-at-home mom. He wanted to play Fortnite all the time and would sneak his mother’s cell phone away from her to do so. She would find her son upstairs, still in his pajamas, playing the online video game when it was time to leave for school in the mornings.

This was partly a problem of overstimulation and obsession on the son’s part, but there was also a disconnect on the part of the mother, Ehinger says. Sometimes, disagreements over technology use are generational. In this case, the mother didn’t realize that her son was using the game as a way to socialize and communicate with peers. Adding to her frustration was the fact that she had previously worked in a corporate environment and was used to people listening to her, Ehinger observes. Now, as a stay-at-home mom, she was locked in a battle of wits with her young son.

When it comes to addressing issues of technology use, Ehinger says that psychoeducation about family roles and setting boundaries can be particularly helpful for families in counseling. She often talks with parents about setting limits, taking televisions out of children’s bedrooms, and establishing regular “no tech” nights, when the home’s Wi-Fi is switched off for the evening, to spend time together as a family.

Ehinger also moderates conversations with couples in counseling to get them on the same page regarding their family’s technology use.

“Often, it turns out to be a couple’s problem,” Ehinger says. “They need to define roles when it comes to discipline and boundary-setting — which is all affected by their family of origin. They have to create an ‘our way’ [instead of ‘my way’] and stop bickering and fighting with each other.”

 

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Contact the counselors interviewed for this article:

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Find out more about family counseling from the International Association of Marriage and Family Counselors, a division of ACA, at iamfconline.org.

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Uncovering the root cause of mother-daughter conflict

By Rosjke Hasseldine January 8, 2020

An experienced counselor recently admitted to me that she felt out of her depth when a mother and adult daughter both came to see her for help with their incessant arguing. She said that she struggled to identify the core reasons for their arguments, and she knew that the communication skills and boundaries she tried to instill in them did not address the core reasons for their relationship difficulties.

Sadly, this counselor is not alone. Colleagues frequently tell me that they feel unprepared when it comes to working with mothers and daughters. They blame the absence of specialized training. This lack of focus on the mother-daughter relationship creates unnecessary anxiety among counselors and psychotherapists, and frustration for female clients. For example, only in 2016 was the Adult Daughter-Mother Relationship Questionnaire developed (for more, see Julie Cwikel’s article in The Family Journal). And in my office, all too often I hear mothers and daughters voice their frustrations about the lack of specialized help.

In this article, I share two insights that will help counselors understand the dynamics between a mother and daughter of any age. These insights come from the mother-daughter attachment model I have developed through my 20-plus years of listening to thousands of mothers and daughters of all ages from different countries and cultures. The model makes the complicated dynamics between mothers and daughters easy to understand, explains why mothers and daughters fight, and teaches how mothers and daughters can build strong, emotionally connected relationships.

I chose to specialize in the mother-daughter relationship back in the 1990s because that relationship is central to women understanding themselves. My relationship with my mother had shaped who I was, and when my daughter was born 30 years ago, I knew I had to change the harmful themes that were being passed down the generations. What began as a personal quest became my professional mission.

Mothers and daughters frequently tell me that they feel ashamed about their relationship difficulties. They feel that they “should” be able to get along because popular wisdom tells them that mothers and daughters are supposed to be close. This societal expectation makes mothers and daughters blame themselves for causing their relationship difficulties. The truth is, if my years of experience providing therapy are any indication, many women currently experience mother-daughter relationship conflict.

Based on the inquiries I receive from mothers and adult daughters from different countries, I believe that a larger, societywide dynamic is contributing to their relationship conflict. Often, I hear “hormones” being blamed as the cause for relationship problems, whether it is the teenage daughter’s or pregnant daughter’s hormones, or the menopausal mother’s hormones. Another common reason mothers and daughters give to explain why they are not getting along is their differing or similar personality traits. I have never found hormones or personality traits to be the core reasons for mother-daughter relationship conflict, however. Rather, I have concluded that society sets mothers and daughters up for conflict.

In the first insight, I show that the mother-daughter relationship is not difficult to understand once we realize that mothers and daughters do not relate in a cultural vacuum. In recognizing that mothers and daughters relate within a sociocultural and multigenerational environment, the dynamics between them become easier to grasp. We see how life events, restrictive gender roles, unrealized career goals, and the expectation that women should sacrifice their needs in their caregiving role all shape how mothers and daughters view themselves and each other and how they communicate. To illustrate this dynamic, I share the story of my work with Sandeep, a young college student from England (name and identifying details have been changed).

In the second insight, I explain how patriarchy’s way of silencing and denying what women need is the root cause of most mother-daughter relationship conflict in different cultures around the world. To illustrate, I share my work with Miriam, a doctor from Sweden who comes from a feminist family (name and identifying details have been changed).

Miriam and Sandeep come from different countries and cultural backgrounds, and their families are on opposite ends of the women’s rights continuum, yet their core relationship problem is the same. Both Miriam and Sandeep come from families in which women have not learned how to ask for what they need.

Insight No. 1: Mothers and daughters relate in a sociocultural environment

As is the case with any couple, mothers and daughters rarely fight over what they say they are arguing over. Sandeep and her mother were no exception to this rule. Sandeep was a young college student who lived at home. Her parents immigrated to England from India before Sandeep was born. Sandeep had three brothers, but she was the family’s only daughter.

Sandeep came to see me because she was feeling depressed about how critical her mother was. She was struggling to juggle her college work with the housework her mother and family expected her to do. She said her mother would accuse her of not being a good enough “housekeeper” and not caring enough for her mother when she was ill, which was often.

Sandeep had consulted a counselor before me who had suggested that her mother might be suffering from a personality disorder. I never got to meet Sandeep’s mother and work with her clinically, so I was unable to validate whether this might be the case. Regardless, even if Sandeep’s mother did have this diagnosis, it did not provide Sandeep with the answers
she needed.

Instead, Sandeep needed to understand the multigenerational sociocultural environment in which she and her mother lived. She also needed to understand what was going on in this environment that apparently caused her mother to be so angry and critical, and what caused Sandeep and her mother to believe that it was Sandeep’s responsibility to do all the housekeeping.

When I start working with new clients, I map their mother-daughter history. This is the primary exercise in the mother-daughter attachment model. It is an adaptation of the genogram exercise that family therapists use. The maps focus on the three main women in the multigenerational family, which in Sandeep’s case was Sandeep as the daughter, her mother and her grandmother. I map the experiences the three women have had in their lives, including the gender roles that have defined their lives and limited their choices and power. I also map how the men in the family treat their wives and daughters. Mother-daughter history maps provide an in-depth analysis of the multigenerational sociocultural environment in which the women in the family live and what is happening within that environment to cause mothers and daughters to argue, misunderstand each other, and disconnect emotionally. (Detailed instructions on using this exercise with clients are available in my book The Mother-Daughter Puzzle.)

Sandeep talked about her grandmother’s and mother’s lives and arranged marriages and shared how verbally abusive and controlling her father and grandfather were. She said the males in the family were encouraged to go to college and build their careers, while the females were expected to stay at home to help their mothers. As Sandeep provided these details, her family’s patriarchal structure came into sharp focus. Sandeep represented the first woman in her generational family to finish school and go to college.

Sandeep’s family believed in what I term the “culture of female service,” a global patriarchal belief system that views women as caregivers, not care receivers. Families that subscribe to the culture of female service expect mothers and daughters to be selfless, sacrificial, self-neglecting caregivers. This belief system does not recognize women as people with needs of their own.

Although I never met Sandeep’s mother, it was apparent to me (based on Sandeep’s descriptions) that she had internalized this family belief and did not know any other way of being. This meant that she did not understand Sandeep’s desire to go to college or her fight for her independence. I suspected that Sandeep’s independence felt threatening to her mother. Several reasons explain why Sandeep’s mother was so critical of her daughter and why she behaved in an emotionally manipulative manner — for example, by becoming ill just when Sandeep was busy with an assignment or exam.

First, Sandeep wanted to live a different life than her mother and grandmother had lived, and this likely made Sandeep’s mother feel alone and abandoned. Her only understanding of being female was that of women as caregivers and of “good daughters” stepping into their mothers’ shoes and walking repeats of their mothers’ lives. Sandeep’s mother had done that, her mother had done that, and she expected Sandeep to follow in that role. I suspect Sandeep’s wish for a different life and different relationships felt like a rejection to her mother. It made her feel that her daughter was criticizing the life and values she believed in as a mother.

Second, Sandeep’s mother could have been jealous of her daughter’s freedom and opportunities, even though she probably was unaware that her criticism and anger were rooted in jealousy. Sandeep’s freedom and opportunities might have been an uncomfortable mirror for Sandeep’s mother, reminding her of the freedom she never had and the dreams she had to relinquish.

Third, the mother’s attempts to keep Sandeep from graduating and leaving home could have been linked to her own fight for emotional survival. Sandeep reported to me that she was the only person who gave her mother love and care, so the thought of Sandeep leaving home must have been terrifying to her mother.

For mothers and daughters to build a strong, emotionally connected relationship, it is optimal for both parties to engage in couples therapy. However, if one person is not able, or willing, to participate, healing is still possible. In Sandeep’s case, her mother did not want to participate in therapy. This did not prevent Sandeep from working on understanding and improving her relationship with her mother, however. When one person changes their behavior, the relationship changes to incorporate the new behavior. Of course, Sandeep and I had little control over how her mother would respond to the changes Sandeep needed in their relationship.

My work with Sandeep involved teaching her how to listen to her own voice. Sandeep had become an expert on responding to what her mother needed and being a “dutiful daughter,” but she had little idea about what she wanted for herself, beyond finishing her degree. Sandeep did not know how to ask herself what she thought, felt, or needed emotionally because that conversation was not spoken in her family. My role as a mother-daughter therapist was to help Sandeep uncover the sexism she had inherited from her mother and grandmother that had silenced her voice. I helped her understand the gender inequality her family and culture normalized, and I taught her how to claim her own ideas of who she wanted to be and what she needed in her relationship with her mother — and in all her relationships.

I also helped Sandeep navigate the pushback she got from her mother and father when she stopped complying with their demands to be the family’s unpaid housekeeper. I helped her to understand her mother’s and father’s perspectives so that she had empathy for them and encouraged her to recognize that their anger and criticism weren’t as personal as they felt, originating instead from their cultural beliefs. Alongside Sandeep’s increased understanding of her family’s sociocultural environment, I helped her increase her entitlement to speak her mind, reject unreasonable demands, and carve out her own life path.

Sadly, Sandeep’s parents did not react well to her behaving differently from what they expected of a “dutiful daughter.” After Sandeep left home, her family’s anger and accusations that she had dishonored the family became alarming, leading her to obtain a restraining order against her parents and siblings. Through her therapy, Sandeep learned the degree to which her family members did not tolerate women challenging their long-held beliefs about what women could and could not do and could and could not wear. I had to help Sandeep stay safe and grieve the loss of her family even as she gained her own voice and life.

Insight No. 2: Mothers and daughters fight over their denied needs

My clients have taught me that the denial of what women need, especially when it comes to women’s emotional needs, ripples below most mother-daughter relationship conflict. As I write in The Mother-Daughter Puzzle, when a family does not speak the language that inquires after what women feel and need, mothers and daughters are set up for conflict. It creates an either-or dynamic in which the mother and daughter fight over who gets to be heard and emotionally supported in their relationship because they do not know how to create a normal in which both are heard and supported.

In every mother-daughter history map I draw, I see how the silencing of women’s needs harms women’s emotional well-being, limits their ability to advocate for themselves in their relationships and workplaces, and perpetuates gender inequality. I see how this dynamic makes women invisible, and how being invisible makes women hungry for attention. The inability to openly and honestly ask about what they need creates emotionally manipulative behavior between mothers and daughters and sets daughters up to have to mind read their mothers’ unspoken and unacknowledged needs.

Miriam, a client from Sweden, contacted me for help with her adolescent daughter. Miriam and her mother had benefited from the women’s movement fight for women’s rights. Miriam and her mother were doctors, and Miriam’s husband and father were extremely supportive of their careers. But just like Sandeep and her mother, Miriam and her mother had internalized and normalized the culture of female service, and Miriam’s daughter was angry about her mother’s selflessness.

Miriam’s daughter felt that she had to mind read what her mother really felt and wanted, and she was tired of it. She desired an emotionally honest relationship with her mom. She wanted to feel free to say what she felt and needed and for her mother to speak her mind and stop the guessing games. Miriam’s daughter did not want to feel responsible for meeting her mother’s unvoiced and unacknowledged needs.

The silencing of women’s needs is an intergenerational dynamic that gets passed on from mother to daughter because the mother is not able to teach her daughter how to voice her needs openly and honestly. When the daughter is expected, often unconsciously, to listen for and meet her mother’s unvoiced and unacknowledged needs, the daughter is learning to become an expert on understanding what her mother needs, not on what she needs herself. This means that the daughter will grow up to be as emotionally mute as her mother, thus setting up her future daughter to try to learn to interpret and meet her unvoiced needs.

Women’s generational experience of being emotionally silenced and emotionally neglected is a common theme between mothers and daughters. Happily, I am seeing a huge shift from adult daughters in their 20s, 30s and 40s who are waking up to this patriarchal theme and wanting change. These daughters recognize that they have learned — from their mothers and from society in general — to be far too tolerant of being silent and practicing self-neglect. More daughters are asking their mothers to join them in therapy so that together they can change these inherited behavioral patterns. Mothers and daughters are teaming up and pioneering a new normal in their families — a normal where women are speaking up and demanding to be heard. And they are passing on this new normal to the next generation of sons and daughters.

Mothers and daughters have always led the call for women’s rights. When we understand that mother-daughter attachment disruption or conflict tells the story of how sexist beliefs and gender role stereotypes harm women’s voices and rights, the mother-daughter relationship becomes an unstoppable force for change at the worldwide and family levels.

Sadly, Sandeep’s mother was not able to join Sandeep in her fight to challenge her family’s sexist cultural beliefs. I inferred that too much neglect made Sandeep’s mother emotionally unable to think her way out of her powerlessness. Miriam, having had a far more supportive and empowering upbringing, was able to join her daughter to find a new normal for women within their family. This mother and daughter team coached each other as they decontaminated themselves from their internalized sexism and self-silencing habits.

The mother-daughter relationship has tremendous power to change women’s lives around the world. When mothers and daughters band together, they create an impenetrable wall of resistance against family members who are threatened by women claiming their rights. I have had the honor of working with many pioneering mothers and daughters who dared to dream of a reality in which mothers and daughters are no longer starving for attention and fighting for crumbs of affection. These brave mothers and daughters recognize the harm that patriarchy, sexism, and gender inequality inflict on women, and they have decided that enough is enough. In essence, they are saying, “With us, it must end.”

 

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Rosjke Hasseldine is a mother-daughter relationship therapist, author of The Silent Female Scream and The Mother-Daughter Puzzle, and founder of Mother-Daughter Coaching International LLC (motherdaughtercoach.com), a training organization. She blogs for the American Counseling Association and has presented her mother-daughter attachment model at professional conferences, on Canadian television, and at the United Nations Commission on the Status of Women. Contact her at rosjkehasseldine@gmail.com or through her website at rosjke.com.

 

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Dealing with the realities of dementia

By Bethany Bray December 23, 2019

Licensed professional counselor (LPC) Ruth Drew oversees the Alzheimer’s Association’s 24-hour helpline, which offers support to those facing the challenges of dementia and Alzheimer’s disease, including families and caregivers. The fact that the helpline receives more than 300,000 calls each year hints at the heart-wrenching issues that accompany a dementia diagnosis, not just for the individual but for the person’s entire support system.

“We receive a wide range of questions, from someone worried about the warning signs of cognitive decline or dealing with a new diagnosis, to an adult son whose mother didn’t recognize him for the first time, or a wife wondering how to get her husband with Alzheimer’s to take a bath. Whatever the reason for the call, we meet callers where they are and endeavor to provide the information, resources and emotional support they need,” says Drew, director of information and support services at the Chicago-based nonprofit.

Professional counselors are a good fit to help not only individuals with dementia and Alzheimer’s, but also those in their care networks, Drew says. Whether counseling individuals, couples or even children, the far-reaching implications of dementia mean that practitioners of any specialization may hear clients talk about the stressors and overwhelming emotions that can accompany the diagnosis.

“People diagnosed with Alzheimer’s and other dementia diseases are going through profound life changes — coping with the realities of an incurable disease that is stealing their abilities and their memories. Counseling offers a place to process the losses, develop ways to cope, and find meaning in their current situation,” Drew says. “Similarly, family members face emotional, physical and financial challenges when they care for someone with Alzheimer’s. It helps to have a safe place to process feelings, get support, learn to cope with present realities, and plan for the future.”

A growing need

“Dementia isn’t a normal part of aging. It just happens that most dementia patients are older,” says Jenny Heuer, an LPC and certified dementia practitioner in Georgia who specializes in gerontology. “There is this stigma that just because you’re getting older, you’re going to get dementia.”

The Alzheimer’s Association (alz.org) defines dementia as “an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities.”

Although many people associate dementia with Alzheimer’s, there are numerous forms of dementia, and not all are progressive. Dementia can be reversible or irreversible, depending on the type, explains Heuer, the primary therapist in the geriatric unit at Chatuge Regional Hospital in Hiawassee, Georgia. Alzheimer’s, an irreversible, progressive form of dementia, is most common, followed by vascular dementia, which can occur after a stroke. Forms of dementia can also co-occur with Down syndrome, Parkinson’s disease, Huntington’s disease and other diagnoses. Research has also linked moderate to severe traumatic brain injury to a higher risk of developing dementia or Alzheimer’s disease years later.

Heuer, a member of the American Counseling Association, recalls a client she counseled who was diagnosed with Alzheimer’s prior to age 62. She had lived with a husband who was violent and physically abusive toward her, and the client’s caregivers wondered if she had suffered a brain injury that contributed to her early onset Alzheimer’s.

Heuer notes that other conditions can lead to an assumption or misdiagnosis of dementia. For example, a urinary tract infection (UTI), if left untreated, can progress far enough to cause confusion in a client. Once the UTI is diagnosed and treated, the confusion can dissipate. In addition, excessive alcohol use, depression, medication side effects, thyroid problems, and vitamin deficiencies can cause memory loss and confusion that could be mistaken for dementia, according to the Alzheimer’s Association.

“There’s so many [other] things to rule out,” Heuer says. “Doctors try to rule out every other health issue before they diagnose dementia.”

The complicated nature of dementia only reinforces the need for counselors to do thorough intake evaluations and to get to know clients holistically, Heuer says. Counselors should ask clients about anything that has affected or could be affecting their brain or memory, including medication use, stress levels, past physical trauma or brain injury, depression, sleep patterns, exercise and other factors.

The World Health Organization (WHO) reports that roughly 50 million people worldwide currently have dementia, and nearly 10 million new cases develop each year. Alzheimer’s disease-related dementia may contribute anywhere from 60% to 70% of that overall number, according to WHO.

Alzheimer’s is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention. The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. A recent report from the nonprofit estimated that 5.7 million Americans of all ages were living with Alzheimer’s-related dementia in 2018, the vast majority of whom (5.5 million) were 65 and older. Close to two-thirds of Americans with Alzheimer’s disease are women, according to the association.

These numbers are only expected to increase as the U.S. population ages and the baby-boom generation reaches retirement and later life, Heuer notes.

The U.S. Census Bureau projects that in the year 2034, the number of Americans 65 and older will, for the first time in history, eclipse the nation’s number of youths under age 18. By 2060, close to one-quarter of Americans will be 65 or older, and the number of people older than 85 will have tripled.

“Aging issues hit home for counselors across the board,” Heuer says, “because we are all aging, and many are caring for aging parents. … I invite other counselors to join me in working with this population. [Alzheimer’s] is the sixth-leading cause of death. That sounds very morbid, but it’s only going to go higher. More and more people will be diagnosed. With the aging baby-boom population, there’s someone around every corner [who is] going to be impacted by this disease.”

Caring for the caregivers

There is an obvious emotional component to caring for a loved one affected by memory loss and the other aspects of dementia, but there is also the burden of assuming management of the person’s practical tasks, such as financial planning and keeping up with medical appointments. The stress of it all can affect the person’s entire network, says Phillip Rumrill, a certified rehabilitation counselor in Ohio whose professional area of expertise is clients with disability, including dementia.

“Dementia affects the whole family system, and possibly for generations. The person [with dementia] needs help, yes, but [so do] their spouse, children and entire family system. That’s critically important [for counselors to be aware of] when you’re dealing with dementia,” says Rumrill, a member of the American Rehabilitation Counseling Association, a division of ACA. “There is a tremendous amount of burnout that comes with being a dementia caregiver.”

Witnessing a loved one’s memory and abilities decline can cause caregivers to feel sad, frustrated, exhausted, overwhelmed, hurt, afraid and even angry, says Matt Gildehaus, an LPC who owns Life Delta Counseling, a private practice in Washington, Missouri.

“The caregivers and loved ones are often the hidden victims of dementia. They can become completely overwhelmed as the role becomes all-encompassing,” says Gildehaus, who counsels adults facing a range of challenges, including aging-related issues and dementia. “Taking care
of someone can easily become an identity that gets affirmed and reinforced until it comes at nearly the complete expense of self-care. When being the caregiver for someone with dementia overtakes their life, the caregiver’s emotional and physical health frequently begin to decline.”

Each of the counselors interviewed for this article asserted that clinicians should, first and foremost, emphasize the importance of self-care with clients who are caregivers to individuals with dementia. Counselor clinicians can ask these clients what they are doing for self-care, help them establish a self-care plan if needed, and connect them with local resources such as support groups and eldercare organizations.

It is also important to encourage clients to ask for help from others when they are becoming overwhelmed, says Rumrill, a professor and coordinator of the rehabilitation counseling program at Kent State University in Ohio, as well as founding director of its Center for Disability Studies. If clients mention having a loved one with dementia, counselors should listen carefully to make sure these clients are taking care of themselves and processing their feelings related to the experience.

Connecting clients to support groups and other resources can be vital because many families feel lost and isolated after their loved one receives a dementia or Alzheimer’s diagnosis, Drew notes. “This isolation can increase throughout the journey as caregiving demands intensify, especially if they don’t know where to turn for help,” she says.

Families may also experience emotions that parallel the grieving process as they witness the progressive loss of the person they knew. Caregivers might even find themselves with hard feelings emerging toward their loved one, particularly as they try to handle the frustrating behavior challenges that Alzheimer’s and dementia can introduce.

“The disease can be very deceiving because one day the person may be very clear, and another day they’ll be confused. Caregivers can feel [the person is] doing things on purpose, just to push their buttons,” Heuer says. “I often ask if the person was aggressive or called [the client] names before they were diagnosed. Most often, the answer is no. Then I explain that it’s the disease, not the individual” prompting the behavior.

Gildehaus, a member of ACA, has seen similar frustrations among clients in his caseload. “I often help caregiver clients by providing a safe place for them to share the things they don’t feel they can share with family and friends,” he says. “For caregivers, there are three tools I focus on using: therapeutic silence, empathic listening, and normalizing what they often describe as ‘terrible thoughts.’ These … can be ideas like, ‘They make me so angry,’ ‘I dread going to the nursing home some days’ or even ‘Sometimes I secretly hope they don’t live for years like this.’”

Rumrill notes that clients caring for a loved one with dementia may need a counselor’s help to process how the disease has disrupted roles within the family. He experienced this personally when caring for his grandmother, who lived with dementia for years before passing away in 2009 of stomach and liver cancers. Rumrill, who held power of attorney for his grandmother’s financial affairs, had to adjust to taking care of someone who had taken care of him throughout his life. It felt like a role conflict to have to begin making decisions on his grandmother’s behalf while still trying to respect her wishes, he recalls.

“It’s changing roles: They used to take care of you, and now you take care of them,” Rumrill says. “There is an odd juxtaposition when a child is telling a parent what to do. It can be hard [for the older adult] to accept when it’s coming from the younger generation. The roles have switched, and no one got the memo.”

Counseling sessions for couples and families can also serve as safe spaces to talk through the stressors and disagreements that come with caregiving, Rumrill and Heuer note. Counselors can serve as neutral moderators to facilitate conversations about tough subjects that clients may be fearful of or avoiding outside of sessions. This can include talking over logistical or financial issues, such as dividing caregiving tasks or assigning power of attorney, and harder conversations such as when and how to move a loved one to a care facility.

Counselors who work with couples should be aware of the intense stress that providing care for someone with dementia can put on relationships, Rumrill adds. Home life can be turned upside down when one member of a couple’s time and attention are devoted to caregiving. This is especially true if the family member with dementia moves into the home. Tasks that used to flow easily, such as unloading the dishwasher or taking the kids to sports practices, can become points of contention. Challenges that the couple successfully navigated before — from budgeting to parenting issues — can become more pronounced and complicated as caregiving puts extra strain on the couple’s time, emotions and finances, Rumrill says.

It’s an unfortunate reality, but counselors working with clients who have dementia or their families also need to be watchful for signs of elder abuse, including financial abuse, Rumrill says. Dementia patients and their caregivers are also at higher risk for issues such as depression, anxiety, suicidal ideation, and substance use and abuse (which may be used as a coping mechanism).

Listen and validate

Clients who have dementia can get a variety of needs addressed in counseling sessions — needs that will change as the dementia progresses.

In the early stages of dementia, counselors can help clients process their feelings and fears about the diagnosis, as well as work toward accepting and adapting to the changes that are coming. In the middle to latter stages, clients may benefit more from reassurance and validation from a counselor, as well as occasional redirection and calming techniques.

Heuer recalls a client whose husband had recently been placed in a memory care facility because of Alzheimer’s disease. The client — whom Heuer calls “Anne” for the purposes of this example — was dealing with pre-existing depression, which was the initial focus of the counseling sessions. Heuer and Anne also discussed Anne’s relationships with family members and the various changes she was facing, which included moving because of her husband’s placement in the memory care facility.

According to Heuer, Anne harbored a great fear of losing her own memory, and over time, her memory did in fact begin to deteriorate. She would acknowledge the decline in counseling sessions as she and Heuer talked about its impact on Anne’s life. Later, as Anne’s dementia progressed, Heuer shifted her work to focus more on fostering Anne’s feelings of safety and connection. “The interesting part of working with Anne is she never mentioned the word dementia. I heard about her diagnosis from family and caregivers,” Heuer recalls.

“As her memory declined, I would reflect her feelings [in counseling],” Heuer says. “Then there were sessions where Anne would spend the majority of the time talking about how she had been traveling on a train and had just gotten off the train. Frequently, she would share the story as if it was the first time she was telling it to me.” Heuer says one of the best suggestions she has been given for working with clients with dementia is to show them the same level of patience and attention regardless of whether they are telling her a story or sharing a memory with her for the first time or the 10th time.

“Anne also had hallucinations [in the latter stages of dementia],” Heuer says. “She had moments of clarity where she knew they were hallucinations and questioned her own sanity. I had no magical cure or answer. I would try and imagine how I would feel if this were happening to me and [then] tapped into empathy and the core foundation of person-centered therapy.”

Most of all, individuals with dementia need a counselor to simply “be present and listen,” adds John Michalka, an LPC with a solo private practice in Chesterfield, Missouri. He specializes in working with clients who have mood disorders related to chronic illness, including dementia.

“Patients living with dementia often tell me they just need their loved ones to stop nagging them and making them feel like the things they are doing are intentional,” says Michalka, an ACA member who has personal experience caring for a loved one with dementia. “The patient isn’t forgetting on purpose. The patient has enough to deal with without being made to feel like a burden as well. It always amazes me how simple and unselfish the patient’s request is when it comes to what they need: just simple love, understanding and patience.”

The following insights may be helpful for counselors who treat clients with dementia. Some of the guidance may also be relevant to share with clients who are family members of or caregivers to a person with dementia.

>> Correcting versus agreeing: Patients in the memory care unit where Heuer works sometimes come up to her and say, “It’s so good to see you again!” even though they have never met her before. Over time, she has learned to read clients and think on her feet to respond appropriately to remarks that aren’t based in reality.

For caregivers, deciding whether to correct a person with dementia or go along with what the person is saying can become a daily or even moment-to-moment struggle. Heuer says her decision to validate or correct is often based on how likely the person is to become agitated or aggressive. But empathy also comes into play. “I try to put myself in their shoes. How would I feel if I were seeing a friend I hadn’t seen in a while? It really comes down to meeting them in their emotions.”

Some clinicians may call the practice of validating or going along with a client with dementia “therapeutic lying,” Heuer says, but “I call it ‘molding the information’ and doing what it takes for them to feel calm and safe. …We have to adapt to them because they are not able to adapt to us. It is as if they have a different inner world, and we have to meet them in their world.”

Michalka says he also finds validation therapy helpful for easing anxiety in clients. With clients who are dementia caregivers, he often emphasizes that what is going on in the mind of the person with dementia is their reality.

He recalls one client who was beginning to panic because they saw someone in their room. “There was no one in the room, but the patient’s experience or perception of a stranger in their room was real,” Michalka says. “A natural reaction for most caregivers would be to correct the patient. In doing so, we are challenging the patient’s perception of reality. This typically will only escalate the patient’s anxiety and, in doing so, escalate the loved one’s or caregiver’s anxiety.

“Imagine if you saw a stranger in your room, and when you [try] to tell someone, they proceed to tell you, ‘No, there [isn’t].’ Would you not become more and more agitated as you try to convince them [and] they continue to challenge your reality? Instead, we should validate their experience by asking if that stranger is still in the room. Then, one would empathize with the patient by validating how scary that must have been, but now the stranger is no longer there and they are safe. After which, the patient’s attention should be redirected to a more pleasant thought or situation.”

>>  Considering the whole person: Working with clients with dementia “takes you out of your comfort level because you have to become very creative in how you interact with [them]. It’s not the type of counseling that you learn in a textbook,” Heuer says. “Your ability to counsel and work with these individuals goes well beyond the knowledge you gain about counseling in your master’s [program].”

Heuer encourages clinicians to learn more about who clients were before their dementia diagnosis — what they did for a career, what their hobbies were, their likes and dislikes. Counselors can ask clients directly for this personal information or seek details from their family members. Learning these personal details can help to better inform counselors’ interventions and help form stronger connections with clients, Heuer says. “Tapping into what made them happy as a human being [without dementia] may be therapeutic for them,” she adds.

For example, a client who loves baseball may be comforted and more responsive while watching a televised ballgame or flipping through an album of baseball cards with a counselor. A client who was a teacher or a banker might find comfort writing in a ledger. Even clients with late-stage dementia can respond when their favorite music is played, Heuer notes.

She recalls one client who had previously worked in business and would sometimes think that his caregiver was his secretary. When this happened, the caregiver would “take notes” for him by writing on paper. “It doesn’t have to make sense, but to them it may make sense,” says Heuer, whose doctoral dissertation was on the lived experiences of individuals with early stage Alzheimer’s disease.

>>  Redirecting: When working with clients in the middle to latter stages of dementia, techniques that prompt a change of focus are invaluable. Redirection can keep these clients from becoming upset or escalating to aggression, Heuer says. For caregivers, this technique might involve engaging the person in an activity that they used to enjoy or simply asking for help with a task, such as folding laundry or setting the table.

“Redirection really comes into play when an individual is exhibiting behaviors such as agitation, fear, anger or paranoia,” Heuer explains. “Normally, there is something in their environment that is triggering them. An example we often observe and hear about is an individual [who] is wanting to go home. In essence, they want to feel safe and are looking for something familiar. Redirection is a technique that refocuses the individual’s attention in an effort to therapeutically calm them and make them feel safe.”

Heuer mentions a woman who was wandering in the care facility where Heuer works and feeling a strong urge to leave. The woman was getting agitated and escalating to the point that staff members were going to medicate her. Heuer stepped in and asked the woman if she wanted to take a walk. The woman agreed and soon calmed down as she and Heuer walked together and chatted.

With dementia, behaviors often manifest out of the person’s worry about their own safety or the safety of loved ones, Heuer notes.

“We all have that need to have a sense of purpose. Just because someone has dementia, they’re not less human. They have similar needs but have a different way of communicating them. Usually, there is a need behind every single behavior they’re displaying,” Heuer says.

>> Working through grief: Individuals with dementia and their loved ones often experience a range of grief-related emotions, from denial and avoidance to sadness. Counselors may find it helpful to use grief and loss techniques with these clients, Rumrill says.

Watching a loved one with dementia decline and seemingly change into a different person can feel similar to experiencing that person’s death or loss, Rumrill says. In the case of his grandmother, even her vocabulary and the way she spoke changed. She began using profanity and other words that Rumrill wasn’t previously aware she even knew. When she became angry, Rumrill says she would “go off” on people, which she never did prior to her dementia diagnosis.

“There’s a tremendous sense of loss that can go with that. The person you knew and loved isn’t there [any longer],” he says. “I was grieving the loss of who [his grandmother] was and also grieving with her over her loss of independence.”

Feelings of loss can also resurface for clients with dementia who are widows or widowers, even if they have previously processed their partner’s death. Dementia can reaggravate the person’s feelings of grief and sadness or even ignite feelings of anger toward a deceased partner for leaving them to go through their dementia journey alone, Rumrill says.

Family members and caregivers may experience repeated cycles of grief as their loved one’s dementia or Alzheimer’s progresses, Michalka adds. “Each time the loved one living with dementia progresses to the next stage, the client [a caregiver or family member] in some ways repeats the grieving process. They now are experiencing another loss. It is as if they have lost their loved one once again,” Michalka says. “It is extremely difficult for many clients to have mom or dad not know who they are or simply not remember their name. The client loses their loved one many times during the progression of dementia. At a minimum, the client loses the person their loved one once was, and then once again upon the passing of the loved one.”

>> Focusing on strengths: Clients with dementia are likely to be saddened by the anticipated or actual loss of their abilities. A counselor can help these clients flip their perspective to focus on what the person can still do, Heuer says. She often uses the words strengths and challenges, not weaknesses, during conversations about what the client is still able to do and enjoy.

For example, a client with dementia may no longer be able to maintain a garden outdoors, but gardening supplies and planter pots can be brought to the person inside so they can still get their hands in the soil. “Activities can change as the disease progresses,” Heuer notes.

>>  Using “tell me about” prompts: Gildehaus says that narrative therapy can be a helpful technique with clients who have dementia. These clients often respond well to storytelling prompts, even as their memories fade. It can be therapeutic for clients with dementia to share memories and, in turn, to feel heard and understood, he explains.

Similarly, Heuer uses reminiscence therapy with clients with memory loss, asking individuals to talk about their careers, families, and other favorite memories. It is not helpful, however, to frame questions by asking clients whether they remember something, she stresses. Instead, counselors can use gentler “tell me about” prompts to spur clients to open up. For example, instead of asking, “Do you remember your parents?” a counselor would say, “Tell me about your parents,” Heuer explains.

Rumrill notes that group work can be very helpful for caregivers or family members of people with dementia, especially to prevent or ease burnout. Motivational interviewing, cognitive behavioral techniques, and rational emotive techniques can also help clients process the changes and stresses that come with having a loved one with dementia. But Rumrill urges counselors to use whatever techniques they find to be most helpful to and best suited for the client.

Dementia is “no more stressful than any other life issue that brings people to counseling; it’s just different,” Rumrill says. “It has unique features that need to be understood to help. Marshal all the coping reserves you can to help the client.”

>>  Offering empathic listening: Gildehaus notes that professional counselors’ core skills of listening, empathic reflection and normalization can go a long way for clients dealing with dementia.

“In my experience, clients struggling with dementia need someone to listen to them for understanding without confronting them, trying to argue with them, or trying to fix them,” Gildehaus says. “Normalizing frustrations and fears related to memory challenges and aging also helps clients feel less defective.”

When working with clients who have dementia, Gildehaus says his primary objective is to offer a nonjudgmental environment in which these individuals can share their frustrations and fears. “My efforts are focused on providing an interaction where they feel heard and understood without feeling questioned or having someone trying to talk them out of their ideas,” he says.

This came into play this past summer as Gildehaus faced a tough conversation with a client who needed to give up her right to drive because of cognitive decline. “This was very hard for her,” he recalls. “She argued that she did not drive far, that she had not had any accidents, and that she didn’t care if she died in an accident. She became very emotional — tearful and angry. I listened empathically, validated her truths, and reflected her logic and feelings. Then, I asked if she wanted her lasting legacy to be causing someone else’s injury or death. She agreed this was not what she wanted. We then explored options and resources that would allow her to maintain her freedom and active schedule without driving. We talked about local taxi services, friends who were going to the same activities [and could give her a ride], and the obvious solution became allowing her home health care provider to drive her most of the time.”

Still human

Individuals with a dementia diagnosis often feel as if they’ve been labeled as damaged goods, “deemed incompetent and unable to do anything for themselves,” Heuer says. The empathy and support that professional counselors are capable of offering these clients can go a long way toward changing that mindset, she asserts.

People with dementia “are still capable, still human, and they have emotions,” Heuer emphasizes. “There is an immediate stigma attached to someone [with a dementia diagnosis] that they aren’t able to do anything for themselves, and that’s often a source of frustration. There is an assumption that they’re helpless. But they will say, ‘I need help.” … They will let you know. What they need from counselors — and everyone else — is the recognition that they are still a person and still human.”

 

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Counselors as caregivers

Despite a career as a helping professional, Phillip Rumrill found himself feeling “inadequate” when it came to caring for his grandmother as her dementia progressed. He admits that he learned how to manage “through trial and error.”

The professional objectivity that allows practitioners to help others process issues in counseling simply isn’t there when it comes to caring for their own loved ones, says Rumrill, a certified rehabilitation counselor and a professor and coordinator of the rehabilitation counseling program at Kent State University.

“All of this stuff that you know about professionally goes out the window when you experience it personally,” Rumrill says. “You may have helped a client who is dealing with this, but it’s not the same when you’re going through it yourself. … You may think that because you have expertise in helping others you might know procedurally what to do, but it’s just different when it’s affecting you on a core level. You can arm yourself with information, but it’s going to be very different to be going through it on your own.”

Although it may not come easily, counselors who have loved ones with dementia should heed the same guidance they would give to clients in the same situation, including keeping up with their self-care and asking for help when needed.

After his grandmother passed away in 2009, Rumrill collaborated with two colleagues, Kimberly Wickert and Danielle Dresden, who also had cared for loved ones with dementia, to write the book The Sandwich Generation’s Guide to Elder Care. Their hope was that their insights might help other practitioners who were facing similar challenges. “You can’t be [your] family’s counselor,” Rumrill says. “Sometimes you have to shut off your professional side and deal with the humanity of your own experience.”

John Michalka, a licensed professional counselor and private practitioner, says he and his wife experienced a range of issues — from stress to anxiety to grief — while caring for his mother-in-law. Michalka’s mother-in-law, who had vascular dementia, moved in with Michalka and his wife in 2013 when she was no longer able to care for herself.

“I took a hiatus from work, and for the last two years of her life, I cared for her until she passed [in January 2015],” he says. “I watched my wife, as a daughter, struggle with pain and grieving during every step down of the disease, from [her mother] forgetting our names to [us] becoming absolute strangers. For me, I was the caregiver and did my best to suppress the emotion. To say the least, caring for anyone living with dementia can be extremely difficult. At least it was for me.”

 

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The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 helpline at 800-272-3900 or visit alz.org (click the “Help & Support” tab for links to online and local support groups).

Also, the U.S. Administration on Aging offers an eldercare services search tool at eldercare.acl.gov. Resources are also available from the Dementia Action Alliance (daanow.org) and the Family Caregiver Alliance (caregiver.org).

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Contact the counselors interviewed for this article:

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Read more

Check out an extended Q+A with licensed professional counselor Ruth Drew, the Alzheimer’s
Association’s director of information and support services, at CT Online: ct.counseling.org/2019/12/qa-helping-clients-affected-by-dementia/

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Additional resources

Take advantage of the following select resources offered by the American Counseling Association:

ACA Divisions

  • The Association for Adult Development and Aging (aadaweb.org)

Counseling Today (ct.counseling.org)

Books (counseling.org/publications/bookstore)

  • Counseling Older People: Opportunities and Challenges by Charlene M. Kampfe

 

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Bethany Bray is a senior writer and social media coordinator for Counseling Today. Contact her at bbray@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.

Q+A: Helping clients affected by dementia

Compiled by Bethany Bray December 13, 2019

The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. Alzheimer’s disease, the cause of the most common form of dementia, is the sixth-leading cause of death in the United States.

Each dementia diagnosis will affect not only the individual but also his or her entire care network – emotionally, relationally, financially and in myriad other ways, says Ruth Drew, a licensed professional counselor and director of information and support services at the Alzheimer’s Association.

The most important message a counselor can give these clients – whether that be an individual with dementia or the family or caregivers of someone with dementia – is that they are not alone, says Drew, who oversees the Alzheimer’s Association’s 24-hour helpline.

 

Counseling Today sent Drew some questions via email to get her perspective.

[Note: Some responses have been edited slightly for purposes of length or clarity.]

 

What do you want counselors to know about some of the common fears, challenges and questions that come with dementia and how they can support clients through these challenges in counseling sessions?

Alzheimer’s disease is a progressive brain disease that worsens over time. Currently, there is no medication that can cure, prevent or slow down the disease — only medications that help with symptoms. Receiving an Alzheimer’s diagnosis is life-changing, and it impacts the entire family. Along with the diagnosis and disease journey comes a wide range of emotions — fear, resentment, despair, anger, denial, relief. As a result, many families often feel lost and isolated after the diagnosis. This isolation can increase throughout the journey as caregiving demands intensify — especially if they don’t know where to turn to for help.

We want everyone to know that no one should face this disease alone, and no one has to. There is so much information and support available round the clock, and it is only a phone call or mouse click away through the Alzheimer’s Association Helpline (800-272-3900) and website at alz.org.

Counselors can help people facing dementia by acknowledging that it is normal to experience a wide range of emotions. Getting information and support is an empowering first step in coping with the challenges ahead.

 

What kind of help does the Alzheimer’s Association Helpline offer?

Our free, 24/7 Helpline receives more than 300,000 calls a year, answered by specialists and master’s-level clinicians who provide disease information, caregiving strategies, local community programs and resources, crisis assistance and emotional support.

Ruth Drew, LPC, director of information and support services at the Alzheimer’s Association.

If a caller is worried about signs of memory loss, we provide information on the warning signs of the disease, how to approach the conversation with the person [showing signs of memory loss] and how to seek a diagnosis. If a person recently received a diagnosis, we can answer their questions and provide a safe place to process their feelings and learn about the peer support that is available. If a caregiver is exhausted, grieving and feeling burned out, we can listen, normalize their experience, and help them find the support and resources they need for themselves and the person they are caring for.

We advocate for a person-centered caregiving approach and help families figure out how to navigate Alzheimer’s based on their unique set of circumstances. That can include connecting people with local Alzheimer’s Association education programs, support groups and early stage engagement programs offered by our chapters across the country.

 

In addition to counseling, what resources do you recommend for people with dementia and their caregivers and families?

Alzheimer’s can go on for many years, so people need different resources and levels of support as the disease progresses. Whether you are the person living with the disease or [whether you are] a family member, the first step is to educate yourself about the disease, care strategies and available resources. The second step is to have open conversations with the people who are important in your life and make plans for the future.

Getting support from the people you care about and making plans for the future are empowering steps that can help families make the most of their time now and avoid a crisis later. The Alzheimer’s Association offers a number of education programs in local communities across the country that can help people understand what to expect so they can be prepared to meet the changes and challenges ahead and live well for as long as possible. We also provide free online education courses, from understanding the disease to planning for the future.

Whenever facing difficult times, having a good support network [they] can turn to for advice and encouragement can help individuals feel socially connected and give them a sense of belonging and purpose. Connecting with others going through the same situation — whether they are living with the disease or a caregiver — can help put their own experiences with the disease in perspective and provide them with the support and encouragement they need. The Alzheimer’s Association also offers local face-to-face support groups and an online support community.

 

What would you like to highlight for counselors to recommend for their clients? Is there anything that comes to mind that they might not be aware of?

One thing we always want people to be aware of is the Alzheimer’s Association free 24/7 Helpline (800-272-3900). It’s available 365 days a year, in over 200 languages, for anyone in need of information, advice and support — whether it is a person living with the disease, their caregivers, professionals, academia or the general public. Trained staff are ready to listen and equipped with information to provide referrals to local community programs and services, disease education, crisis assistance and emotional support.

 

Are there any assumptions or misconceptions that counselors might have about dementia and Alzheimer’s that you’d like to clear up?

Sometimes when people picture a person with Alzheimer’s, they envision a person in the late stage of the disease. Alzheimer’s often progresses very slowly, and people may live four, eight or even 20 years after the onset of symptoms. The range and variety of symptoms is enormous, and many people can stay very engaged with family and activities of living for a long time in a supportive environment.

Often, caregivers tell me that everyone asks about the person with the disease, but no one asks them how they are doing. The data show that caring for someone with Alzheimer’s is much more arduous physically and emotionally than other types of caregiving, so it is crucial to ensure the caregiver is well supported.

Family members often deal with grief and loss throughout the time they care for someone with the disease. They grieve each loss of ability and memory, as well as anticipating the losses to come. Symptoms of stress, depression and anxiety may be connected to this ongoing loss.

 

Our readers are professional counselors of all types and specialties (including graduate students). Are there any main takeaways you’d like to share?

People impacted by dementia need understanding, information and support. While each situation is unique, the more you know about the disease, the better able you will be to connect with each person and provide a therapeutic setting where they can get the help they need.

 

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  • The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 Helpline at 800-272-3900 or visit alz.org

 

  • See Counseling Today’s January cover article, “Dealing with the realities of dementia,” for an in-depth look at helping clients with dementia, as well as their families and caregivers.

 

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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.