"I was always on edge wondering how I'd care for her as she got progressively worse. I'd rush to take over for either the health-aide worker, my aunt, or my sister but would sometimes feel so drained from my own day of working as a preschool teacher, I'd be on the verge of tears when I saw her. Reality sat on my shoulders like a ton of bricks as I grasped she'd never be well again. It was hard to handle without breaking down."
From “A Prayer for Serenity,” by Jeanine DeHoney
Here in the Middle: Stories of Love, Loss, and
Connection from the Ones Sandwiched in between
If you read the above passage, written by a woman who helped care for her elderly mother until her passing, and you immediately felt an “aha,” a moment of recognition, of kinship, then chances are, you’re a caregiver, too. According to JAMA (Journal of the American Medical Association), an estimated 15 million adults currently provide some level of care for aging, ill, or disabled relatives, so it shouldn’t come as a surprise that there are other folks out there going through the same caregiving experiences as you are, but somehow, it often does.
Being a caregiver is hard work, even if you have some amount of paid in-home caregiving. Because it’s not just the physical demands of what a recent AARP report calls ADLs (Activity of Daily Living) that take a toll on caregivers—things like getting a loved one out of bed, bathed, dressed, up and down stairs, in and out of chairs, feeding him/her, helping with toileting, etc. It’s also the mental and emotional loads that every caregiver carries around every single minute of every single day: doctor’s appointments, therapy appointments, medications, insurance questions, safety issues; oh, and for added fun, why not throw in trying to hold down a job, maintain a home, even perhaps take care of younger children, and it’s hard to imagine how caregivers ever manage to do it all!
How do they do it, take care of everyone around them like that, every day? Well, to put it bluntly, they do so, often, by NOT taking care of themselves, and that puts caregivers, as a group, at risk for a whole mess of problems, ranging from depression, serious illness and even increased mortality, to lost wages and lost jobs.
Thankfully, the issue of caregiver stress is getting fresh attention these days, with well-known institutions like JAMA, the Mayo Clinic, and even the federal government issuing reports and studies calling out the problem and advocating for, and providing, greater support resources for caregivers in order to help ease their heavy loads.
What does caregiver stress look like? According to the Mayo Clinic:
As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:
- Feeling overwhelmed or constantly worried
- Feeling tired most of the time
- Sleeping too much or too little
- Gaining or losing a lot of weight
- Becoming easily irritated or angry
- Losing interest in activities you used to enjoy
- Feeling sad
- Having frequent headaches, bodily pain or other physical problems
- Abusing alcohol or drugs, including prescription medications
Constant worry? Check. Fatigue? Check. Never enough sleep? Check. Caregivers can probably check off most of the items on this list, and many of them do on a regular basis, but unfortunately, it’s because many of them simply accept these problems as “part of the job” of being a caregiver, without realizing that there are resources out there that can help reduce the load, as well as reduce the stress of carrying it:
Most communities offer some type of respite care, whether it’s in-home care, an adult care center or program, or even a short-term nursing home. In Montgomery County, for example, The Arc provides short-term respite care for senior citizens ages 60+ to unpaid, live-in primary caregivers; that can give caregivers a few hours, a day, or even a weekend of relief from their care responsibilities.
Family Medical Leave Act (FMLA)
According to Mayo: “Nearly 60 percent of caregivers work outside of the home. If you work outside the home and are feeling overwhelmed, consider taking a break from your job. Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave a year to care for relatives. Ask your human resources office about options for unpaid leave.”
This may not be a long-term solution to caregiver stress, but sometimes, even just a day or two to recharge and get centered again can make all the difference.
Join a Support Group:
Remember that “aha” moment at the beginning of this piece, that moment of “Wow, someone understands what I’m going through?” That response comes because of a very real tendency among caregivers to think that they’re the only ones going through these experiences, which only increases their sense of isolation, loneliness, and stress. There are multiple support groups available in every community, both generalized caregiver groups, as well as groups focusing on people providing care for folks with a specific illness/disability (think Alzheimer’s, for example). You can find contact information for groups such as these in places like local church bulletins, the library, local newspapers, flyers, etc., or by a basic search online. The simple act of sharing stories, finding kinship, and partaking of a regular injection of emotional fortification can help relieve a great deal of caregiver stress.
Ask For—AND ACCEPT—Help
Asking for help isn’t easy for some people, it’s true. But caregiving is such a difficult endeavor at times, that asking for help, and accepting offers of help, shouldn’t be considered an option—it’s something caregivers have to learn to do, in order to manage the stress of their roles.
Help can be found in many different places:
- Maybe you can’t afford to take even a day off of work from your job through FMLA. So ask family, friends, neighbors, members of your faith community—coordinate schedules, trade services, or set up some meals, errands, appointment transportation, or even just visiting hours through free online signup management sites, like SignUpGenius.com or Doodlepoll.com.
- Montgomery County residents are fortunate that there is strong support, and a list of local resources for caregivers, provided through county offices; the list includes marvelous resources for families caring for
- TFM Enterprises, Inc. dba Home Instead #197 * Each Home Instead franchise office is independently owned and operated.
- seniors, like Connect-A-Ride and Lotsa Helping Hands, which can help families coordinate things like safe transportation or handyman-type projects and other household tasks and chores that an in-home care service may not be licensed to complete.
- Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing; local Montgomery County organizations, like Brooke Grove Retirement Foundation or Montgomery MedStar Medical Center offer regular seminars, classes, and online events that are terrific resources for senior caregivers.
- Basic Rules for Managing Stress
- For emotional support, talk to a friend, a counselor, a medical professional, a spiritual advisor (pastor, priest, rabbi, iman, etc.); just make sure you talk to someone. Don’t suffer your stress in isolation and silence.
- Take care of your physical health, too—don’t skip medical or dental appointments; take short walks outside whenever possible and try to eat a healthy diet.
- Focus on what you can provide, and don’t stress about what you can’t (that’s where the asking for help part comes in).
It’s true that caregiving for a senior loved one can provide many, many challenges for families, and the stress that accompanies the role of caregiver is significant. But by acknowledging it, sharing it with others, and accepting whatever help you can, it’s possible to keep your stress levels at a manageable level, which is not only better for you, the caregivers, it’s also better for the loved ones you’re supporting—taking care of YOU makes it possible to take care of THEM.