Caregiving can take many forms. A woman in her 50s takes care of her husband who has a life-limiting disease. An adult child cares for an aging parent. Grandparents raise their grandchildren because their adult child is struggling with substance misuse.
A recent State of Aging and Health in America Data Brief on caregiving (published by the National Association of Chronic Disease Directors and the Centers for Disease Control and Prevention) refers to the growing number of caregivers that are providing assistance to their loved ones as “an important public health issue” and notes that middle-aged and older adults in particular provide a substantial portion of the informal or unpaid care in the United States.
Research shows that older adult caregivers are shouldering more demands today than they did five years ago. According to the report Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+ (conducted by the National Alliance for Caregiving and AARP), the number of individuals caring for older adults (those 50 years or older) has increased by 7.6 million caregivers since 2015. And more than half of these caregivers are age 50 and older themselves, with 20% being 65 and older.
In addition, many older adults are caring for their grandchildren. A U.S. Census Bureau report on children’s living arrangements noted that of the children under the age of 18 who did not live with a parent, 53.2% lived with a grandparent in 2019.
Caregiving has the potential to enhance one’s quality of life by increasing one’s satisfaction and strengthening familial relationships, but it can also be stressful and negatively affect people’s mental health. Sara Kerai, a licensed professional counselor (LPC) who has worked with older caregivers for more than a decade, says that many of her older caregiving clients — those age 50 to 64 — struggle with psychological distress due to caregiver stress.
Caregiver stress is “unwelcomed stress and anxiety associated with taking care of a loved one when you don’t feel prepared,” Kerai explains. “Caregiving is both physically and emotionally demanding. There’s no downtime. There are no vacation days, no sick days, no federal holidays.”
The added responsibilities of caregiving that suddenly become a part of these clients’ lives leave them with less time to take care for themselves, which contributes to their stress. The counselors interviewed for this article agree that cognitive behavior therapy (CBT), dialectical behavior therapy (DBT) and psychoeducation can help older caregivers manage negative emotions and help them develop the skills they need to maintain their health and wellness.
Tending to aging parents, spouses, adult children or growing grandchildren can leave older caregivers feeling exhausted, overwhelmed, anxious and depressed.
“The caregivers that I meet, by the time they’re sitting in front of me, they’re just very depleted, emotionally overwhelmed,” says Kerai, who owns a private practice in Grand Rapids, Michigan.
Older caregivers may be caring for aging parents or spouses who have a long-term terminal or chronic illness, such as cancer, dementia or Parkinson’s disease, or they may be caring for adult children who have become incapacitated due to a disabling accident or illness. They may also be caring for grandchildren whose parents are wrestling with a mental illness or substance misuse.
For these caregivers, “it feels like a tremendous amount of responsibility, all the while [they’re] waiting for the next shoe to drop,” Kerai says, because they “are expecting bad news medically or are worrying about when their loved one might have a setback or take a turn for the worse.”
Older caregiver clients often have to handle their own work and family responsibilities while also performing caregiving duties such as scheduling medical appointments, taking their loved one to the doctor and advocating for proper medical care, and managing medications. They are also tending to their loved one’s personal hygiene needs and keeping abreast of their loved one’s financial and legal matters.
Caregivers of children may be dealing with teachers, school administrators and coaches; coordinating resources from community and social service agencies; transporting children to and from recreational activities; cooking meals; or handling custody issues through the courts.
Adrianne Trogden, an LPC-supervisor and an assistant professor of counseling at the University of the Cumberlands, says that older caregivers are “burning the candle at both ends” because they often have to manage their caregiving duties while also working a full-time or part-time job. “When they come home [from work], they’re never really just ‘off,’” she explains. “They have to come home and do more work.”
And these caregivers are often “on call all the time,” says Trogden, a member of the American Counseling Association. “They can be called at any moment for an issue related to the one they’re caring for,” which often leaves clients wondering what will happen to their loved one if something comes up while they are at work, she adds.
Mary Pierce, an LPC at Marriage & Family Health Services in Eau Claire, Wisconsin, says some clients feel they are carrying an extra burden. They sometimes tell her they feel as if they are living life for two people.
Caregivers may also feel unprepared for the amount of work involved in caring for someone else. “A sense of overwhelm may come with the initial diagnosis [of an illness] as they scramble to set up routines doctor visits, household help with groceries, etc.,” she notes.
Then as caregiving becomes more routine, the feelings of exhaustion and anxiety can lead to a deep sadness, Pierce continues. “After a time, depressed mood is more common, as the reality of the situation hits.” This is when clients realize “this is going to go on for a while,” she adds.
Although mental health conditions may arise as a result of caregiver stress, Pierce, an ACA member who specializes in family caregiving, says she is careful not to pathologize caregiving.
“It is a process of adjustment, and in most cases, a diagnosis of ‘adjustment disorder’ applies, with or without anxiety, depressed mood or both,” Pierce explains. “I also want to assess if anxiety or depressed mood predated the caregiving experience for [a] client.”
In addition to feelings of fatigue, anxiety and depression, these caregivers often experience trauma. “It’s traumatic to change a spouse’s diaper [or] to see your parents in a frail or diminished state,” says Kerai, who offers telebehavioral health services to clients in Michigan, Virginia, Maryland and Washington, D.C.
Jennifer Stuckert, an LPC and clinical director at Restoration Counseling of Atlanta, says it is not uncommon for older caregivers to feel residual trauma from how or when their loved one passes away.
The degree to which the loved one is suffering also matters. Clients “need a safe place to process their internal angst about this suffering that they’re going through and the suffering that their loved one is going through,” Stuckert says.
It can be traumatic to not know what will happen next, she admits. “You never know how long this person is going to be in a declined state and how long your life will be this way.”
The costs of caregiving
Older caregiving clients often feel they must put their life on hold, which may result in feelings of isolation and guilt. Trogden, president of the Association for Adult Development and Aging, a division of ACA, works with several clients who are in their 50s and 60s and are raising their grandchildren, who range in age from an infant to the early teens. A lot of these clients “thought they were moving into retirement, to relax … and have less responsibility,” she says. But now these clients have increased responsibilities and many never expected to have to raise their grandchildren.
Many of these clients contemplate putting their plans for retirement on hold because of this new role as caregiver, Trogden continues. Some even wonder if they will ever be able to retire or if they’ll have to continue to work longer than they planned to care for their loved ones. And this can lead to grief over what they have given up to care for their loved one, she says.
These clients are often overwhelmed, Trogden adds, because they’re not able to take time off to see friends, enjoy their hobbies or even engage in self-care activities.
Kerai also finds that clients may feel a sense of isolation. Caregiving is a solo responsibility for many older caregivers, she explains, and they often feel disappointment, anger and resentment because other family members cannot or will not help.
“People’s worlds become very small,” she says. “They can’t socialize or do the things that were restorative for them.”
Some clients wrestle with guilt, Pierce notes. For example, she says clients may feel guilty for wishing their caregiving responsibilities would end because they know what that means — the decline or death of a loved one.
Older caregivers can also experience anticipatory grief. Kerai says that many of her clients wonder what will happen when their loved one’s condition gets worse, and they ask her, “How can I prepare for this?”
Pierce, who has treated caregivers and their families for a decade, often introduces the concept of anticipatory grief to clients who may not be aware of the term. In addition, as a parent or partner declines, there is ongoing grief, she says. Pierce had one client who described their grief as “losing my husband little by little, day by day.”
Helping to alleviate stress
Trogden, who is the chief operating officer for Counsel NOLA, a group counseling practice in New Orleans, finds DBT distress tolerance skills to be a helpful way for clients to learn to manage stress in a healthy way. She often teaches clients the STOP skill, which, she explains, is an acronym that stands for:
- Stop: Take a pause and don’t immediately react to what’s going on. Maintain control of your body and emotions.
- Take a step back: Get some distance from the situation and take a few deep breaths. Walk away for a moment if possible.
- Observe: Pay attention to what is going on inside of your body and around you. Do a body scan to notice any tension in your body. What are other people around you doing?
- Proceed mindfully: Take a moment to think about the possible outcomes of this situation and respond, rather than react. What is the outcome you want with this situation? What are the consequences of what you might say or do to respond?
Trogden works with her clients to develop ways they can apply the acronym in their daily lives.
Trogden also uses the five senses of self-soothing exercise with older caregivers in session to help them learn how to create a sense of peace and calm. She walks clients through the exercise in session and asks them to tell her what they see, hear, smell, taste and touch. For example, she may say to clients:
- What do you see around you? Go look at something peaceful or visually interesting. Watch people around you, go outside in nature, look at art, and so on.
- What do you hear? Listen to what is going on around you and the various noises you can hear. Listen to music that you find calming or to sounds in nature, for example.
- What can you smell? Maybe smell a cup of coffee, light a scented candle or put on your favorite scented lotion.
- What can you taste? Drink or eat something you like and see if you can tell the different ingredients. Eat or drink slowly to absorb and focus on all the flavors.
- What can you touch around you? Touch something soothing nearby. For example, pet a domestic animal, touch a soft fabric or run your hands under warm water.
Trogden then assigns clients this exercise as homework to practice outside of session both when they are feeling overwhelmed and when they aren’t.
CBT exercises can also help clients manage feelings of frustration and stress. Kerai once worked with a middle-aged woman who was caring for her husband who was also middle aged and had been diagnosed with a life-limiting illness. This client was feeling frustrated about how to handle her husband’s frustration about his symptoms and prognosis, Kerai recalls.
In situations such as this, Kerai finds the “worst case scenario” exercise helpful because it can help older caregivers identify their negative thoughts and predictions and consider new ways of thinking about the situation. Here is an example of how this exercise might go in session:
- Counselor: What are you most concerned about right now?
- Client: When my loved one takes a turn for the worse, everything is going to fall apart. It’s going to be a mess.
- Counselor: What is the story you are telling yourself? What are you expecting is going to fall apart?
- Client: That everything is going to explode!
- Counselor: I understand that it feels scary right now. In that statement, I hear you making some negative predictions about the future. The truth is we don’t know how this will all unfold. I do know you have a lot of people who love and care about you. You have been proactive about getting the support you need. Let’s talk about what we can control and what we can’t.
Kerai used this exercise with the woman who was concerned about her husband’s diagnosis and helped her figure out possible resources, such as a home health aide or a family member, who could assist her in caring for her husband.
Sometimes the caregiver may find that their loved one’s personality or behaviors are changing, Kerai notes. For example, the woman Kerai worked with noticed that her husband had become more irritable or demanding. Kerai says the following questions can help older caregivers gain insight into the mindset and behavior of their loved ones to understand how their world has also changed due to the caregiving relationship:
- What do you think your loved one is asking for when they become demanding?
- What do you think your loved one is afraid of?
- What medications does your loved one take?
- Have you noticed any side effects from the medication?
Kerai says these questions helped the client understand that medications (such as steroids) may have been causing her husband’s personality to change and that as a person with a life-limiting disease, he could be operating from a place of anxiety about his own mortality. The client’s husband, for example, may have been concerned about whether his wife would remain with him until the end.
To improve the client’s communication with her husband, Kerai suggested the client check in with him in the morning before starting her workday to discuss what the day would look like and to provide reassurance about when his needs would be met. This simple change helped her feel less angry and frustrated by his attempts to regain some control over his life, Kerai says.
Pierce also uses CBT techniques to help older caregivers identify their cognitive distortions, such as black-and-white thinking and exaggerating the negatives and minimizing the positives. She uses an exercise she calls “unhelpful versus helpful” thoughts to help clients identify both types of distortions. This exercise, Pierce says, helps older caregivers recognize negative or self-defeating thoughts so they can replace them with more positive, hopeful thoughts about their circumstances and their relationship with their loved one. For example, a client may think, “This will never end.” Then they can counter this negative thought with a more helpful one such as “This is not forever, just for now.” Or maybe a client worries that things will never be the same between them and their loved one. Then, they could reframe this unhealthy thought by saying, “We are both still here and I can make the most of the time we have left together.”
Dealing with anger
Stuckert uses psychoeducation to help older caregivers, especially those caring for aging parents with memory loss or physical impairments, process feelings of anger. “There is exasperation in these situations,” she explains. “No one gives you a rule book, so people are very overwhelmed.”
When clients lament how they must often repeat conversations multiple times or help their parent to complete simple daily tasks, Stuckert tries to help them understand that their parent’s brain is in decline — something that many people experience as they age.
Stuckert says she normalizes the feelings that adult children may have about their parents and helps them develop realistic expectations about the downward trajectory of their loved one’s remaining years.
She works to help clients “build compassion” for their parents and tells them, “You’re going to have to have gracious compassion for them. … Your parent is going through a normal life stage.” This is particularly important when agitation and frustration are high, she adds.
Stuckert also helps older caregivers understand that their parent’s mental decline may be gradual and that their parent may be struggling with fears and uncertainties about the end of their life, such as how they will die or how much pain they will be in. “They don’t like losing their power,” she explains. “They want to keep their agency as long as they can.”
Stuckert recommends counselors read Judith McKay, Matthew McKay and Peter Rogers’ book When Anger Hurts: Quieting the Storm Within, which helps people recognize their angry thoughts and find healthy ways to relate to themselves and others. She uses several exercises from this book to help caregivers recognize and understand what provokes their anger.
First, she says, counselors can have clients ask themselves the following questions when they are feeling angry:
- Are there more effective strategies than anger for reinforcing others to meet my needs?
- What were my trigger thoughts?
- What can I do to meet my own needs to reduce my stress?
- What stresses underlie my anger?
Counselors can then help older caregivers reframe angry thoughts and realize that although they may not be able to change their circumstances, they can change the way they respond to stress and develop alternative ways to relate to their loved ones and meet their own emotional needs, Stuckert says.
Pierce helps adult children resolve issues with their aging parents who have dementia by striving to keep the peace and acknowledging their feelings of grief.
“We talk about not engaging in arguments, but agreeing and then redirecting the parent,” Pierce explains, and “also not correcting the person with dementia to avoid making them feel worse about forgetting or being confused.”
Naming and processing grief
Older caregivers experience grief over the changes that caregiving can bring to their plans or dreams and their relationship with their loved ones. Offering empathy, unconditional positive regard and being genuine — the essence of a person-centered approach — is key in supporting clients in the grieving process, Pierce says.
Pierce often asks clients to use a self-rating exercise to help them process their grief and accept the changes that caregiving brings to the relationship. She once worked with a male client in his 60s who was caring for his wife who was diagnosed with frontal temporal dementia. Pierce asked him to think about his life before his wife was diagnosed and rate how much he felt like a husband. He said, “100%.” Then she asked him how much he felt like a husband three years after the diagnosis; he said, “50% husband, 50% caregiver.” And the client said that when his wife experienced a significant decline, he felt like he was “99% or even 100% caregiver.”
“Giving caregivers a framework to acknowledge the changes in their circumstances and, for some, to be able to let go of expectations that the care receiver will be able to continue being a full partner” is helpful, Pierce says.
Pierce works to help older caregivers not only acknowledge what has been lost but also recognize what remains in the relationship. For example, one of her former clients — a woman in her 60s — moved her husband who had dementia into a care facility after she was no longer able to continue caring for him at home. The woman felt sad that she and her husband were losing their connection and “forgetting the good times” they once shared, Pierce recalls.
“At my suggestion, the wife took her husband out for a drive and revisited local places where they had good memories,” Pierce says. “She reported that at the end of the afternoon, when she brought him back to the facility, he hugged her and said, ‘Thank you for today. This meant a lot to me.’”
Counselors can also help clients process their grief when they lose their loved one. John Self, an LPC at the Wellspring of Life Counseling & Play Therapy Center PLLC in San Antonio, once helped a woman in her 50s deal with the grief of losing her mother after being her sole caregiver for a year. When the client’s mother was diagnosed with cancer, her siblings refused to help, so she had to care for her mother while also working full-time until her mother was placed in hospice care.
“She would take off weeks at a time to care for her mom,” Self recalls. “She almost lost her job. It was a lot for her.”
This client spent most of her savings to care for her mother, Self says, so he helped her get financial assistance under the Family Medical Leave Act. This allowed her to work at a reduced rate for three months until her mother’s death.
Self also used the four tasks of mourning, developed by psychologist J. William Worden, with this client to help her with the grieving process. The four tasks include:
- Accept the reality of the loss
- Process the pain of grief
- Adjust to a world without the deceased
- Find an enduring connection with the deceased in the midst of embarking on a new life
This client, who was a Christian, found her faith helpful in accepting her mother’s death, Self says, so together they examined the woman’s spiritual values and the belief that her mother was now in heaven.
To help her process the pain of grief, Self encouraged her to journal her feelings and look through family photo albums to recall childhood memories and family gatherings as a way to honor her mother. The client also started scrapbooking and working with crafts to find ways to alleviate her feelings of loss.
The client shared with Self how difficult it was to continue living in her home because her mother’s bed and wheelchair were still present, but she couldn’t bring herself to remove them. Self reassured the client that over time as her grief began to dissipate, it may become easier for her to remove the objects from the home and adjust to this new life without her mother.
Self says he also encouraged the client to think about all the wonderful things her mother did as a parent and to find ways to celebrate her life. “With most patients, I try to give them some hope,” he says, and help them realize that their caring for their loved one can help to build their own resilience.
The need for psychoeducation and self-care
Despite the stresses of caregiving, the love and sense of duty most older caregivers feel toward their loved ones motivate them to provide caregiving for as long as they can. However, the counselors interviewed for this article say this devotion often leaves older caregivers with less — or no — time to care for their own health and wellness.
According to the Caregiving in the U.S. 2020 report by the National Alliance for Caregiving and AARP, caregivers’ health has been declining since 2015, and one in five caregivers who are 50 years or older say their role as a caregiver has made their health worse.
Some older adults are so embedded in their role as a caregiver, Kerai says, that they “don’t feel they have permission to take care of themselves.” They sometimes feel they “can’t leave their loved one’s side,” she adds.
The difficulty in taking care of oneself, or the reluctance to do so, is troublesome for older adults who may be facing the onset of chronic illnesses, such as high blood pressure and diabetes. Trogden says she talks to her clients about the importance of staying on top of their health, and she teaches them mindfulness techniques, such as deep breathing, to help them feel a sense of calm and to de-escalate from their daily stress.
Trogden also reminds her clients that they can’t be there for somebody else if they’re not there for themselves. She encourages older caregivers to do small, simple things to take care of themselves such as taking a bath, putting on body lotion, taking a walk or doing a mindfulness meditation because these activities can make a big difference.
Pierce talks to older caregivers about the sympathetic nervous system response and the need to try to calm themselves when they feel stress or anxious and unable to take a break. She teaches clients to pay attention to how they feel in their bodies — Are they tense? Is their heart racing? Are their hands shaking? — so they can know when they need to use a self-care activity, such as stepping outside and taking a few deep breaths or taking a mindful walk and noticing the sensation of their feet on the ground, to calm themselves. She also encourages clients to check in with their bodies after they engage in the self-care activity so they can notice the difference in their body.
Stuckert helps older caregivers brainstorm self-care activities using the “self-care menu” worksheet created by the Seattle School of Theology and Psychology’s Resilient Leaders Project. The self-care menu has a section with four blocked-out periods of time (five minutes or less, 15 minutes or less, 30 minutes or less, and 60 minutes or more) where caregivers can plan and write down a self-care activity.
For example, a client can do a whole body stretch for five minutes; listen to two of their favorite songs for 15 minutes; get a pedicure or a haircut for 30 minutes; and attend a religious service or read a couple chapters from their favorite book for an hour.
The counselors interviewed for this article agree that psychoeducation can help to encourage older caregivers to build a support network of resources, including respite care and caregiver support groups, to help them juggle their caregiving duties while also tending to their own health and well-being.
Psychoeducation about geriatric care is crucial for both clients and counselors. “For many counselors, it is difficult to help clients find resolution during the grieving process,” Self says.
Stuckert agrees that psychoeducation is essential to helping older caregivers. “The more they [counselors] understand the struggle of the aging process,” she says, “the better they’ll do” serving this clientele.
Lisa R. Rhodes is a senior writer for Counseling Today. Contact her at email@example.com.
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.