Tag Archives: caretaking

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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Follow Counseling Today on Twitter @ACA_CTonline and on Facebook at facebook.com/CounselingToday.

 

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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.

 

Fostering resiliency in families and caregivers of individuals with disabilities

By Mariagrazia Buttitta September 26, 2019

It was like the world had collapsed on me, or worse. The words pronounced by my eye specialist felt like a sudden punch to my stomach, leaving me bruised and gasping for air. My life seemed over, or so I thought when I received an eye diagnosis of cone dystrophy at age 14. To this very day, it is emotional to recall the impact that diagnosis had on me and the confused look on my parents’ faces as they heard, for the first time, phrases such as “legally blind” and “disability.”

We all stood there in complete shock. Our faces must have looked ghostly white, perhaps hoping this was a nightmare from which we would soon awake. Instead, we left the office feeling defeated and frightened of what my future would look like, literally. The following day, I gathered all the energy I had left and Googled “cone dystrophy,” learning that it affects roughly 1 out of every 30,000 individuals (according to the National Organization for Rare Disorders). That number did nothing to lift our spirits or morale. My family still feared for my future and, the truth is, so did I.

According to the World Health Organization, nearly 1.3 billion people have a form of vision impairment. Furthermore, the Centers for Disease Control and Prevention reports that 1 in 4 people in the United States lives with a form of disability. So, why did my parents and I feel alone at the time of my diagnosis?

 

Media portrayals of disabilities

Today, it is clear to me that both my cultural background and the way that the media portrays individuals with disabilities might have influenced how my family and I coped with this news.

Growing up in Sicily, I experienced firsthand how my culture viewed disabilities as a weakness. Generally, individuals with physical or mental disabilities were looked down on and were not provided with the same opportunities as other people were. For example, it was assumed that I — someone affected by an eye condition — had less to offer; therefore, I was discouraged from pursuing education. Being the first person in my family with a visible disability did not help us know how to move forward either.

In addition, the media seems to send mixed messages regarding individuals with disabilities. Most of us have compared ourselves with models on magazine covers or wished to be the next Jennifer Lopez or George Clooney. But rarely does our society associate beauty with a physical disability. How many times have you watched TV and noticed someone with a visible disability? GLAAD’s annual report on inclusion notes that less than 2% of the main characters on American TV shows have a disability. A 2015 “Sandy’s View” column for The Chicago Lighthouse website discussed both the positive and negative stereotypes used when representing disabilities in the media. Both stereotypes seem to be extreme — one representing these individuals as victims, and the other representing them as “exceptional” individuals with unrealistic powers.

It is no wonder that my family and I were uncertain about my future. We lacked the proper resources and role models that could have helped us combat some of the negative stereotypes. Despite this, we overcame tremendous obstacles. Having a physical disability did not limit my life, and the realities of my disability only made my parents stronger and more resilient. In addition, it made them more educated about disabilities and cognizant of what other families and caregivers might experience.

 

Accepting and moving forward

Admittedly, my diagnosis of cone dystrophy was life-changing, both for me and my parents. The families of individuals with disabilities may have a difficult time adjusting and can develop their own mental health problems as a result. A study by Juan J. Sola-Carmona and colleagues that looked at 61 parents of blind children found that anxiety is higher and well-being is lower among these parents compared with the general population (published in Frontiers in Psychology, 2016). In general, families with individuals who have a disability are at greater risk of developing psychological problems. However, if these families learn how to cope well, it can increase the strength of the family. Here are the top five things that helped my family and me at the time of my diagnosis:

1) Reaching acceptance: Learning to accept the diagnosis was one of the hardest things for all of us, and I can assure you that it didn’t happen overnight. Acceptance developed with time. Once we traveled to various specialists and knew there was nothing that could be done to cure my vision, we needed to figure out how to live with the diagnosis effectively. After reaching that point of acceptance, we were able to figure out how we would cope and move forward as a family.

2) Seeking professional help: I was a teenager at the time of my diagnosis. The diagnosis was devastating, and it took a negative toll on me. As I got older, I had no faith in my ability to be successful, and that led me to feel helpless and useless.

Counseling proved extremely beneficial to me, but that came later in my life, when I was in my 20s. Talking to someone was therapeutic. My parents were extremely supportive of me, but they were also emotionally impacted by witnessing my struggles. Therefore, it was nice to find a therapist with whom I could talk and share all my emotions without feeling the guilt of hurting anyone else.

Once I gained confidence in myself, it automatically made the process much easier on my parents. I was a happier person to be around. Seeking professional help can be equally effective for family members and caregivers, providing them the time and space to focus on themselves and their own experience.

3) Educating ourselves: We spent hours educating ourselves as a family about my eye condition. We looked at hundreds of websites, articles, journals and magazines. After gaining that understanding and knowledge, we could start educating others about my level of blindness, why I walk with a white cane, and why I have to wear sunglasses all the time.

4) Learning about resources: Neither my family nor I had any idea about the resources available to me. Through research, however, we came across various resources, including the Commission for the Blind. After joining, we learned about still other resources, such as the various tools and technologies that would help me navigate the world with confidence. The resources reassured my parents that I, too, could go to college, get a job, and live a life like people without disabilities.

5) Having role models: Despite the number of individuals with a disability, we can often feel alone or misunderstood. Over time, my family and I met other individuals who, despite being blind or having other forms of disability, managed to live a successful life. As a result, my family and I started to view disabilities differently. No longer did we view my disability as a barrier. More importantly, we learned that we were not alone. My dream of going to college would become a reality.

 

A counselor’s perspective on disabilities

Throughout my graduate studies in a clinical mental health counseling program, I took note of a significant gap in how professionals are trained to work with those impacted by a visible disability. So, from there, I was on a mission: I rolled up my sleeves and got to work.

First, I interviewed Judy Schwartzhoff, a licensed clinical social worker with more than 30 years of experience in the mental health field, to ask her point of view on this subject. I posed several questions to her, including “How competent do you feel working with individuals, families, and caregivers of those affected by a visible disability?” and “Do you feel there are enough trainings provided to help deal with these clients?”

Her response didn’t surprise me one bit: “As mental health practitioners, we are often trained to treat the  emotional side of things, but I agree that we could use more knowledge and training in this area. However, if we do come across the issue, we tend to overlook the disability and stick with the emotional problem because that’s what we are trained in. We continue to separate mental health issues from physical disabilities, but sometimes, the two go hand-in-hand. As professionals, we need to expose ourselves to a diverse population and become more inclusive and know how to deal with different abilities as well as be able to assist their families and caregivers.”

I walked out of the office feeling determined and ready to put my thoughts on paper. Having witnessed, firsthand, the impact this issue had on my parents, I had to bring light to this issue. I immediately asked myself, a soon-to-be mental health professional, a question: What can I do to ease some of the worries and anxieties surrounding individuals affected by a different ability and their families and caregivers?

 

What mental health practitioners need to know

The chances of working with clients who have a visible disability, or their families or caregivers, are high. The truth is, we all will experience a form of loss in physical functioning at one point or another. This could be as simple as experiencing hearing or vision loss as we age. Even so, mental health professionals may feel incompetent if they’re lacking the proper resources and knowledge regarding these clients’ needs.

The day of my diagnosis, I recall a sense of fear and worry hovering over me. My parents had similar feelings, but they also experienced other emotions such as disbelief, sadness and confusion. An article by Josephine Defini in VisionAware described how blindness really affects the entire family as a whole — and I believe this truth can easily be applied to any form of disability.

As mental health professionals, we must be cognizant that each member of the family (or caregiver) might be experiencing a different state of mind and level of acceptance. Therefore, each person may require additional time to process and cope with the diagnosis. As practitioners, we want to be cautious not to assume that all family members are dealing with the news in the same manner or that they are even ready to deal with it at all. As a recent graduate counseling intern, I’ll acknowledge that I catch myself wanting to fix clients’ problems right away. I need to remind myself that everyone has his or her own timeline for healing and processing.

What follows are my top five recommendations for mental health professionals:

1) Use a psychosocial assessment: A psychosocial assessment can be helpful to gather information about the level of acceptance, skills needed to cope, resources, and any other observations noted for the individuals and their families or caregivers (Defini). By gaining this insight, mental health professionals will have a better understanding of what services are needed. For example, when working with an individual who uses alcohol as a way of coping with their issues, co-occurring treatment can be offered. Understanding the client’s individual experience of a disability can reduce bias or assumptions.

2) Use person-first language: In a 2014 article for the American Counseling Association’s VISTAS, Susan Stuntzner and Michael T. Hartley suggested that counselors use person-first language and avoid using negative phrases that could make clients feel less empowered. This would include saying “person with a disability” rather than “disabled person,” for example. In addition, don’t jump to conclusions about how clients feel about their disability. For example, don’t assume that they feel any weaker or have lower quality of life because of the disability. Speaking from my own experience, I think that being open and asking your client to educate you is also important. Everyone deals with a disability in a different way. Ask your clients what they prefer, and do not assume anything.

3) Know your resources: As mental health professionals, it is fundamental to know the resources that can be most helpful to clients. For example, as Defini suggests, if someone is experiencing vision loss, be sure to know the proper state services or local community programs that are available, such as rehabilitation, vocational rehabilitation, or low vision services. As mental health professionals, it might be impossible to know all of the resources out there, but we can be knowledgeable about who might have that information. Listed at the bottom of this article are some resources that may be helpful to you and your clients. Don’t be afraid to seek out information about resources that are more specific to each client’s needs and location.

4) Understand the adjustment process: It is important for mental health professionals to understand their clients’ adjustment process, including awareness of when they found out about their disability and how they coped. If individuals or their families or caregivers are not yet ready to process anything, they might not be able to utilize available resources to the best of their ability. Depending on how well adjusted they feel, the treatment will vary. Specifically, if they just found out about the disability, counseling might need to focus on the grieving process rather than on finding services and moving forward. Additionally, understand the individual’s barriers and that of their caregivers or family members (Stuntzner and Hartley).

5) Know the proper techniques: Be competent and knowledgable about what techniques can assist your clients. Many techniques used center around self-compassion, forgiveness and resiliency (Stuntzner and Hartley). Family counseling may also be helpful to clients and their family members because it gives each individual the opportunity to be open about their needs with each other and the counselor. One intervention may be to have families engage in activities together (e.g., take a meditation class, go to dinner, see a movie, visit a museum) to keep the disability from overtaking their lives.

Mental health professionals shouldn’t be afraid to use their own judgment to see what their clients and clients’ family members or caregivers may need. Every person copes with a disability differently, and everyone is going to need different strategies, so get to know the needs of your clients and their families or caregivers.

 

Conclusion

I wish that I could go back in time and wipe clean the past — especially the day I received my diagnosis — to remove the fear and anxiety my parents felt. Sadly, I can’t. But as a recent graduate counseling student, career counselor intern, author, motivational speaker, and mental health and disability advocate, I aim to help decrease the pain and fear that others may experience. I plan to do this by educating individuals who have disabilities, as well as their families and caregivers, and by setting as example, because a disability does not have to define or determine our future or the future of our loved ones. As figure skater Scott Hamilton once said, “The only disability in life is a bad attitude.”

 

Resources

https://www.familyresourcenetwork.org/

https://nfb.org/

https://sites.ed.gov/idea/parents-families/

https://www.psychologytoday.com/us/groups

https://www.cdc.gov/ncbddd/developmentaldisabilities/links.html

rarediseases.org page on cone dystrophy

 

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Mariagrazia Buttitta is an author, motivational speaker, and mental health and disability advocate. She holds a master’s degree in counseling education from the College of New Jersey and is national certified counselor candidate. Contact her at buttitm1@tcnj.edu and through her website at embracingyourdifferences.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.

Facilitating support groups for caregivers

By Brooke B. Collison July 8, 2019

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

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

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

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

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

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

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

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

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

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

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

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

Caregiver issues

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

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

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

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

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

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

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

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

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

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

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

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

Support group procedures

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

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

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

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

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

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

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

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

 

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

 

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

 

 

Letters to the editor: ct@counseling.org

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

 

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

The caregiving conundrum

By Tia Amdurer March 12, 2019

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

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

Caregivers: The unsung heroes

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

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

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

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

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

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

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

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

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

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

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

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

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

Family dynamics

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

Letters to the editor: ct@counseling.org

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

 

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