By Ellen M. Craine

According to the National Institute on Aging, millions of Americans find themselves in the position of being a family caregiver of an older adult. Not enough education and discussion on this topic is present within families or within society. This is a life transition we will all face, both because of our aging family members needing our assistance, and due to our own aging and needing assistance from family members.

A lot of family caregivers are part of the “sandwich generation,” tasked with caring for their own children or grandchildren, and an ageing parent simultaneously. This life transition can trigger grief reactions for the caregiver and the aging parent.

A family caregiver can come from within the family of origin, extended family, domestic partners, friends, or other individuals who support an older adult. Family caregiving can include a large variety of tasks with the goal of providing support and services that enhance or maintain an older adult’s quality of life.

These tasks include:

Emotional, social, and spiritual support
Assistance with decision making related to health care, financial matters, and lifespan planning
Assistance with physical tasks such as bathing, dressing, or walking
Support in navigating and negotiating health and social service systems, such as dealing with health and long-term care insurance
Arranging and overseeing paid helpers in the home, communicating with health care professionals, or advocating for quality care and services
Assistance with practical matters such as housekeeping, processing paperwork, or going to medical appointments and other appointments
Financial support including direct financial assistance and help with bill-paying
Shared housing

Caregiving may occur on an intermittent or on-going basis. It may be part or full-time. It may include support from a distance, in the older adult’s home, or another setting. Family caregiving, in this article, is primarily referred to as that done on a voluntary basis and not to professional or contractual services that are provided for a fee to the public.

THE “SANDWICH GENERATION”

Many caregivers of older adults are part of the “sandwich generation.” According to the article, “The Sandwich Generation Is Financially Taking Care of Their Parents, Kids, and Themselves” found on forbes.com, many Americans are sandwiched between caring for children, grandchildren, and caring for aging parents. They reference a Pew Research Center survey that talks about adults with a parent aged 65 or older who are also raising a minor or providing for an adult child. Middle-aged adults, who are between the age of 40 and 50 make up the majority of this sandwich generation. The research goes on to say that 19% are millennials younger than 40, at least 10% are older than 60. With this responsibility, come many stressors, including emotional and financial.

The article states that, “On average, 48% of adults are providing some form of financial support to their grown children, while 27% are their primary support. Additionally, 25% are financially supporting their parents as well. Some adults living in this sandwiched generation face financial problems regularly having to support three generations at once.

In addition to the financial support, the article states that, “fully half of adults age 60 or older with a living parent say the parent needs help with day-to-day living.” Many adults say that in addition to the assistance with day-to-day living, they are also providing emotional support for their parent(s).

Suzanne is in her 50s and currently a stay-at-home mom who occasionally takes on part-time jobs to help support her family finances. She gave up working full-time due to her young child’s medical issues. Her husband has been gainfully employed. Suzanne gave up her part-time work when she found herself sharing the care of aging parents with her siblings. She shared what a gift it was to her to be able to care for her parents through their death. She also shared that it was difficult at the same time because she was also caring for her young adult child who has allergies and asthma that were severe at times. Suzanne and her family moved into her parents’ home to care for her 92-year-old mother due to the emotional and financial strain caused by the 45-minute drive between the two homes and the inability of her siblings to provide quality care. In the end, her mother wanted her to be there with her.

Cynthia is a married woman in her 60s. She is a writer and journalist sharing the care of her 94-year-old mother with dementia. Cynthia has work deadlines that often need adjusting because of the challenges of being sandwiched between her mother and her children. Her mother is currently in an assisted living facility in another state, placed there by one of her sisters (without the consent of the other siblings). Cynthia states that she finds this very stressful. She and her husband share three adult children who have expectations of her availability. Recently, she has helped two of her adult children move and has been a support person for one of her children who needed surgery. Cynthia also shared that she is experiencing stress related to alleged financial abuse by one of her siblings toward their mother.

LOSSES and GRIEF REACTIONS

In the realm of caregiving for aging parents, amid the day-to-day challenges, profound losses and grief reactions accompany this life transition. Adult children, transitioning into the role of caregiver, represents a loss of our parents’ caregiving roles. Equipping ourselves with effective caregiving tools is essential. Some of these tools can come from drawing from our learned experiences and observations of how our parents cared for us and their own family elders. Other tools to consider include connecting with nature, connecting with community and asking for support from other family members and friends, journaling, connecting with your definition of Spirit/Divine/God, and reaching out to a therapist who is trained to support you on this journey.

Navigating the new caregiver role brings various losses, including time constraints leading to burnout, physical and emotional strains, and witnessing a parent’s decline. Emotional grief reactions such as denial, anger, bargaining, depression, and acceptance may arise, triggering corresponding behavioral responses. Behavioral responses for the caregiver may include anger outbursts, irritability, increased difficulty getting adequate sleep, forgetfulness, and neglecting one’s self-care and the care of the aging family member to name a few. The order of the emotional reactions varies based on individual experiences and coping skills. This lifelong journey persists even after a parent’s passing, emphasizing the importance of understanding and addressing personal grieving capacities through therapy.

In Cynthia’s case, her sibling’s unilateral decision to move their mother to a nursing home without consultation evoked feelings of loss related to physical roots, legacy, family heirlooms, inheritance, access to her mother, and strained sibling relations. Suzanne is dealing with the trauma of her sibling’s behavior toward their mother and the loss of a relationship with this sibling. All of these losses for Cynthia and Suzanne are mixed in with the loss of their parent.

It’s important to remember that aging parents also grapple with losses, ranging from independence to financial stability, cognitive functioning, and emotional well-being. These losses prompt grief reactions and behavioral changes such as temper tantrums and financial recklessness. Understanding—and not taking these behaviors personally—is crucial, recognizing that the aging parent communicates their frustration and loss in the only way they know how.

As decisions are made for older adults, they experience a sense of loss and grief. Inclusive decision-making processes empower older adults, reduce depression and anxiety episodes, and uphold their right to self-determination, provided they are mentally capable. Conversations among all caregiving stakeholders before they are needed are essential. Encouraging aging parents and ourselves to document wishes including wills, trusts, and medical and financial powers of attorney is crucial. Discussing housing preferences and acquiring access details early on can be empowering for everyone involved, preventing crisis-induced decision-making.

ELDER ABUSE

It is important, as we talk about caring for an aging family member, and the importance of having self-care tools, that we touch on the topic of elder abuse. According to the National Council on Aging (NCOA), “Elder abuse is a silent problem that robs seniors of their dignity, security, and–in some cases–costs them their lives.” It is important to note that “up to five million older Americans are abused every year, and the annual loss by victims of financial abuse is estimated to be at least $36.5 billion.” The website for the NOA states that “in almost 60% of elder abuse and neglect incidents, the perpetrator is a family member,” and that “two-thirds of perpetrators are adult children or spouses.”

Cynthia reports that one of her siblings committed alleged abuse of the mother’s funds and property, along with abandonment of their mother. Suzanne also identified difficulty with one of her siblings over the care of their mother. She alleges that the sibling’s treatment of their mother was abusive, neglectful, and exploitive.

According to the michigan.gov website, “elder and vulnerable adult abuse, neglect, and exploitation are behaviors committed against an elder or vulnerable adult who is unable to protect himself or herself due to a mental or physical impairment or due to advanced age.” The website goes on to define abuse as “harm or threatened harm to an adult’s health or welfare caused by another person.” Neglect is defined as “the inability or failure to provide adequate food, shelter, clothing, and medical care.” And, exploitation is defined as “the misuse of an adult’s funds, property or personal dignity (e.g., humiliation, objectification, degradation, dehumanization) by another person.”

If you witness any of the above, or suspect abuse, neglect, or exploitation of an adult family member, here are some resources:

Adult Protective Services at (855) 444-3911 day or night
Michigan Department of Health and Human Services at (517) 373-9196
Michigan Long Term Care Ombudsman if your aging parent is in a residential care facility at (866) 485-9393
Attorney General Health Care Fraud Hotline for nursing home abuse at (800) 242-2873

Caregiving is complex. It is important that caregivers take care of themselves since caregiving is likely to be a long-term commitment. What that looks like for you, will be different than what it looks like for another family caregiver. Keep in mind, also, what works today, may not work tomorrow. It is important to have a whole toolbox full of self-care tools to utilize. In addition to the tools mentioned above for self-care, an additional tool to consider is getting respite care so that you can get a break. That respite care can come in the form of having someone come in to care for the aging family member or having the aging family member go to an agency setting for a day program or for an overnight stay for a few days. Depending on your finances, another tool may be to hire a caregiver that comes into the home. A social worker trained to work with families in addressing caregiving issues can be extremely helpful to guide you in navigating these options as can an attorney who specializes in these matters. Do not be afraid to reach out for help.

Ellen Craine JD, LMSW- Clinical and Macro, ACSW, INHC is in private practice as a licensed clinical and macro social worker in the state of Michigan. You can learn more about Craine and how she can support you and your family at crainecounseling.com or by email at ellen@crainecounseling.com.