By Jennifer Sellers
Caregiving for a loved one with dementia is challenging. Identifying and dealing with common frustrations can help make it easier.
There’s no shortage of content online and on TV about tough jobs and how they rank. With a few clicks of the mouse or remote, you can learn all about the varied stresses of oil drillers, ice road truckers and many others who work in perilous vocations. But conspicuously absent is one the toughest of jobs—one that goes unnoticed and unpaid; one that takes a toll on the body, mind and soul. A truly tough job, as anyone who has a loved one with Alzheimer’s disease can tell you, is caregiving for someone with dementia.
Many Sources of Frustration
Frustrations for caregivers are wide-ranging and include many challenges, such as:
- Dealing with behavioral changes in the loved one, and combating related disappointment, resentment and grief
- Navigating the diagnosis and treatment options, as well as the medical system in general
- Adapting to the changing stages of the disease
- Managing the logistics of care and support for the patient
- Losing a sense of self and relationship as roles change
- Coping with changes in routine and personal reality
- Experiencing physical, emotional and spiritual burnout
Sometimes multiple challenges will land on the caregiver at once, creating an overwhelming avalanche effect. At other times, dealing with the frustrations seem like a maddening game of whack-amole—just as one problem is dealt with, another pops up. But regardless of the intensity, most caregiver frustrations have a common theme.
Kenya Miles, BSW, caregiver support coordinator at CarePartners Adult Day Services in Asheville, N.C., says that the frustrations of caregiving can most often be categorized as a feeling of being overwhelmed.
“It’s a broad category that has a lot of frustrations that fall under it,” she says. “Caregivers can be overwhelmed by so many things, whether its the sheer amount of new information they have to learn, or their frustration over role reversals and the changing dynamics of a relationship. Frustrations can range from little annoyances to overwhelming fear.”
The sheer number of choices and decisions one must face when caring for a loved one with dementia are often enough to leave the caregiver in frustrated tears—especially if the person who once used to help in decision-making, such as a spouse or parent, is the person who is now being cared for.
“Suddenly, there are a lot of choices that need to be made, and you feel overwhelmed because the roles have changed,” says Miles. “The person who once took care of you is who you’re now having to make decisions for. Or the person who used to be your partner in making decisions is now depending on you to lead the way without them.”
Miles points out that the unpredictable nature of dementia adds to a caregiver’s stress.
“It can seem incomprehensible at times,” she says. “One day you’re planning a vacation with a loved one—or maybe even something simple, like a trip to the grocery store—and the next they may not even be able to communicate with you.”
Dealing with the Stress
Among the many frustrations of caregiving for someone with dementia is that the challenges feel perpetually ongoing. “What makes caregiving such tough work is that it’s basically a fulltime job that can last for many years,” says Miles. “Persons with cognitive impairment can continue to live for a long period of time. While the caregiver wants to spend as many years as possible with the loved one, the process can be physically, socially, financially and even spiritually intense.”
To help caregivers build resilience in the face of long-term frustrations, Miles recommends two very important things: access to support resources and a change of perspective.
When it comes to support, she recommends local resources as well as national/broad resources. In her community of Asheville, she often points her clients to Memory Care, a nonprofit serving those with dementia (and their caregivers) in western North Carolina. A number of communities throughout the country have organizations devoted specifically to patients and families dealing with Alzheimer’s disease. Talk to your loved one’s doctor or eldercare provider for recommendations.
Miles also recommends that caregivers read about the experiences of other caregivers, whether it be in the form of advice guides or memoirs.
For support resources on a national level, she highly recommends:
- National Institute on Aging—nia.nih.gov
- Family Caregiver Alliance—caregiver.org
- Caregiver Action Network—caregiveraction.org
While tangible support is invaluable, Miles says a positive mindset is often underrated.
“There are a lot of resources that can ease your frustrations, but your caregiving challenges are never going to go away completely,” she says. “One of the best things you can do is to change how you look at the situation. Yes, there are frustrations, but there are also rewards.
“Caregiving can give you a sense of purpose and commitment,” continues Miles. “It can also provide you with an opportunity to give back to a loved one who has given so much to you over the years. Caregiving strengthens family bonds and, in many cases, can renew religious faith and spiritual connections. For all its hardships, it offers opportunities to experience some of the truly authentic moments in life.”