Coping With Caregiving When You're Not Wanted
When you think back to childhood and the make-believe roles you may have dressed up as —parent, a superhero, or even a pet — I guarantee that pretending to be a "caregiver" for a loved one was never considered.
Forget even that far back. Maybe you're an adult child embarking on an empty nest, or a spouse excited to live out your golden years as planned. Taking responsibility for another adult robs care partners of time and dreams. And for the person themselves, they're not only coping with health issues, a fear of the unknown, but a host of losses, including independence and control.
According to AARP, "[O]ne in every four adults is a caregiver" – a role many are thrust into, at times with an unwillingly patient. Offering support to those who refuse assistance (yet clearly need it) can be fraught with challenges.
“In those early stages, Geagan described her once "easy-going and house-proud" mom as "argumentative, confused and living in squalor.”
Next Avenue reached out to experts and care partners for guidance on 1) supporting someone who wants to manage their own health and well-being; 2) setting personal boundaries as caregivers; and 3) knowing if and when to walk away.
Understanding the Reason(s) Behind Unwanted Support
Whether it's pride, a loss of control or cognitive decline, everyone comes with a history and a diagnosis. Not only are role transitions in play, but personalities and family dynamics can be as well.
Carrie Ditzel, PhD, Director, Clinical Health Psychology & Geropsychology for Baker Street Behavioral Health, offered that asking questions, calling a family meeting or working with a family physician are all ways to seek to understand what's at the root of your person's resistance and to begin shifting their perspective. "Oftentimes, it is simply a process of acceptance. It takes people time to adjust to being cared for, particularly when they may have always been the person in charge," she explained.
In other cases, measures to gain control, for example, when a person's safety is a concern, can be more extreme.
In early 2001, Claudia Geagan, then 57, began a nearly three-year caregiving journey for her mom, 78, who was suffering from dementia, that would ultimately require moving her mother from her home in Dallas to South Carolina, where Geagan resided.
"Mom was living with my younger brother at the time, who, due to mental health and substance abuse issues, was emotionally, financially and physically abusive to her. But Mom couldn't leave him," Geagan said. In those early stages, Geagan described her once "easy-going and house-proud" mom as "argumentative, confused and living in squalor."
It would ultimately take a public fight between her mother and brother to be the catalyst for change. After involving the police and Adult Protective Services, Geagan eventually obtained a permanent restraining order on her brother, allowing Geagan to move her mom in with her before transitioning to assisted living.
“Relinquishing control is hard for most people and is almost always met with denial, especially when it comes to dementia.”
Geagan attributes much of her mom's resistance to the era in which she grew up — when men were viewed as both all-important and in need of care. Over time, she learned not to take her mom's frustrations personally. "Caring for my mother was a process of learning to love her more deeply and in letting go," Geagan shared.
From Resistance to Acceptance
Princella Seymour, author, CEO, and founder of Complete Elder Solutions, advised giving back the power rather than taking it. "Relinquishing control is hard for most people and is almost always met with denial, especially when it comes to dementia," she said.
One strategy Seymour offers caregivers is to invite your person into the decision-making process, albeit with limited options. For example, ask "Would you prefer me or an agency to help with your medications? Or "Which hours do you want a caregiver to come in — 10:00-2:00 p.m. or 2:00-6:00 p.m." Her point, by providing choices, is that you're letting your person know that something is going to happen, but they can still have a say in the "how."
Other ideas include:
Start small – Consider offering to watch your loved one manage an activity on their own, or to be nearby, rather than removing their agency in one fell swoop. Paying the bills is one example of beginning with baby steps. First, watch your loved one; next, have them watch you, and finally, wean them out of the process altogether. By doing so, you’ll begin to earn their trust, and, in cases of cognitive decline, your person may ultimately forget the task over time.
Put the onus on you – Share ways to leverage other support in caring for your person yourself, such as recruiting the help of another family member, friend or neighbor. Asking for help is difficult for most people and can be frustrating when those who you think should support your loved one don’t step up. Still, Ditzel encourages care partners to keep trying, even when continually met with a “no.” She suggested reframing or changing how a question is asked, and to always be very specific on the request itself including time, place and the benefit. “It might get you a 'yes' when you really need it,” she offered.
Prioritize purpose – Julie Moore, 51 at the time, became a caregiver to her 80-year-old mom after a stage 4 breast cancer diagnosis. Moore, who penned, "I Am Their Voice: A Guide for Caregivers and Advocates," stressed the need to help your loved one feel that their life continues to have meaning. “Mom initially resisted my suggestion of moving out of her home, worried she was leaving her life behind.” Moore eventually found a senior living facility where her mother discovered common interests and ways to support her fellow neighbors, admitting a renewed sense of purpose.
Regardless of the method, express how you are placing your person's best interests at the forefront of decision-making, and focus on the benefits of accepting help, such as more time for hobbies and less stress with household duties, as well as the preservation of your relationship with one another.
Establishing Boundaries and Creating Distance
Recent statistics show that more than 60% of caregivers are female, aged 50.6, and often the unpaid primary caregiver to a family member. Layer in potential complicated mother-daughter dynamics, and caregiving can go from easy-peasy with "best case scenario" to "off-the-rails" in unimaginable ways.
“ She trusted me and never raised her voice. Now, she's questioning my motives and yelling outside at the poor gardener — this is not the woman I've known and loved for six decades,”
Take, for example, Carrisa. On a recent trip to visit family, Carrisa (her last name is being omitted for privacy), 61, noticed both her parents were experiencing cognitive decline, but more so her mom. "At first, it was small things like forgetting a recipe or writing down misinformation, so I decided to put my belongings in storage in Southwest Florida and move back in with my parents in San Diego to find alternative care for them."
Carrisa shared that within days of arriving, her mother began accusing her of stealing her freedom, money and jewelry. "Up until that point, my mom and I had a great relationship. She trusted me and never raised her voice. Now, she's questioning my motives and yelling outside at the poor gardener — this is not the woman I've known and loved for six decades," she said.
Despite enlisting other family members for support and rationalizing with her parents, Carrisa's mom threw her out of the house, threatening arrest if she showed up again. "I didn't want to make things worse by staying, but I needed to protect myself, too," Carrisa said. "As painful as it was, I went back to Florida to put physical distance between my mom and me for my own mental health."
Caring for someone who doesn't want or cannot accept your help, such as one with a brain disease, can come at a high cost emotionally, physically, or can irreparably harm long-term relationships. If you discover you're genuinely not wanted, Seymour recommends allowing yourself some boundaries. Here are a few to consider:
Set communication parameters – For example, reducing the frequency with which you check in with your person or limiting the topics you are open to discussing, all while maintaining respect, empathy and transparency. Laura Fuller, 68, uses what she jokingly calls the “stomp down” approach with her husband, who lives with Frontotemporal Dementia (FTD). “When he becomes angry or mean with me, I calmly tell him I will not tolerate his behavior. Often, he doesn’t recognize what he’s doing, but he usually changes.”
Bring in a professional – If financially viable, finding a neutral third party to be the go-between between you and your person may be an appropriate solution. Geriatric case managers or, in cases of Alzheimer’s or other dementias, a dementia coach, can provide various in-home services, assist with shopping or take a loved one to doctor’s appointments. [A list of resources is noted at the end of this article.]
Say “No” – Setting limits doesn’t only apply to communication strategies, but also to how much “caregiving” you take on. Even when resisting your help, your person may ask you to manage something you are uncomfortable performing, or if it’s the 100th task they want you to do in a single day, know when your “enough is enough” before you reach that point, and that it is OK to decline a request for your own sanity.
Choosing Self-Preservation
A quick Google search or time spent on social platforms such as Reddit will reveal thousands of other caregivers grappling with similar challenges when trying to help a reluctant loved one.
“The emotions entangled with caregiving are brutal.”
Experts and caregivers alike emphasize the importance of therapy, support groups, respite time and moments of self-care. And still, the situation may be untenable.
"There is no right or wrong when it comes to what you choose or can do as a caregiver. It is a complicated, dynamic relationship based on your own needs and skills, as well as your person's needs. There is no black and white answer," Ditzel said.
So, how do you know when to let go of the reins?
There are several signs that it may be time to either reduce the primary caregiver's duties or transfer care elsewhere. The first sign is that you are not taking good care of yourself or the other people in your life. Another is when you're often feeling angry and resentful toward the person you're caring for, or when caregiving is causing significant stress for either party. And lastly, you or your person is in danger, is aggressive, or presents other safety risks.
When possible, Seymour suggested, "Walk away gradually and seek therapy to cope with any feelings of guilt. The emotions entangled with caregiving are brutal. You're doing what's best for you and your loved one."
