Posted: 7/24/2019
Joys, challenges often accompany a shift in family roles
As the population ages, more caregiving is being provided by family members or friends who aren’t healthcare professionals. And while caregiving can have many rewards, for most caregivers being there when a loved one needs you is a core value and something you wish to provide.
But there can be side effects when there is a shift into the role of caregiver, often involving emotions.
“Caregiver” is defined as an unpaid or paid member of a person’s social network who helps them with activities of daily living. Caregiving is most commonly used to address impairments related to old age, disability, a disease or a mental disorder. The American Association of Retired Persons (AARP) estimates that there are 34.2 million people in the United States who are caregivers for a senior loved one and many of them spend 20 hours or more each week providing care.
“If you’re lucky you have a good support system combined with a medical team that asks ‘how are you doing?’ when you’re at an appointment with your loved one,” said Karen Burdine whose husband recently passed away following a nine-month battle with Stage 4 cancer. “The hardest thing to remember is you’re not alone and it’s OK to ask for help. Open up to your friends and tell them what you’re going through. Don’t shut them out.”
Feelings of isolation, anger, depression and guilt are a few of the emotions that accompany a caregiver role, according to Jane Ann McGee, a social worker in the Geriatric Clinic at Parkland Health & Hospital System.
“As we’re taking care of our patients in the Geriatric Clinic we also pay close attention to their caregivers. Some of them will say ‘I’m OK,’ but when we start asking specific questions they sometimes open up and tell us what they’re experiencing and how they’re doing,” McGee said.
Most patients don’t want to be a burden to family members or friends, McGee said. “And caregivers don’t want to do anything to upset the patient. That’s why it’s often difficult to get the caregivers to understand that it’s important they take care of themselves.”
After her husband and son were burned in a car crash, Bella Palacios found herself pulling away from social events with friends because she didn’t want to leave her family alone.
“I felt guilty if I left the house even if it was to get groceries or pick up medication,” Palacios said at a recent Parkland adult burn survivor’s retreat. “It wasn’t until I attended burn survivor support groups that I understood my feelings were normal and if I didn’t take care of myself I wouldn’t be able to take care of them.”
Support groups are extremely important to help caregivers cope with the emotional stress they may be experiencing, McGee said. “Support groups give you the opportunity to talk about what’s weighing on your mind. And you’ll find out that you’re not alone and what you’re feeling is normal.”
Lack of sleep, stress and seemingly unending worry about paying bills, losing their job because they’ve taken time off to care for their loved one, special diets, doctors’ appointments and a multitude of other things are a constant presence in the minds of caregivers, McGee noted. “The fact is a lot of caregivers are just plain worn out. And for those who previously had no problem sleeping, insomnia often becomes a reality.”
Getting a break may be as simple as having someone take over for an hour while you go for a walk, relax in a bubble bath or watch a funny movie.
“But it all goes back to being receptive when someone says, ‘is there anything you need?’” Burdine said. “It helps to be able to hit the reset button so you can deal with whatever comes your way tomorrow.”
For Palacios it meant reconnecting with friends she unintentionally pushed away after her family members were injured and realizing it really was OK to go out to dinner with them.
McGee also stressed the importance of contacting local, state and federal agencies, organizations and/or faith-based groups to see what low-cost or free services may be available.
The AARP also offers tips that will help caregivers avoid burnout:
• Remind yourself that your work has value. According to an AARP Public Policy Institute report, about 40 million family caregivers provided 37 billion hours of care for parents, spouses, partners and other adult loved ones worth an estimated $470 billion in 2013. How much is $470 billion? It’s nearly as much as the total sales of the world’s largest companies, including Walmart ($485.9 billion in 2017).
• Find ways to mass communicate. Of course everyone wants to know how your dad’s surgery went, but it can be exhausting trying to inform people individually over the phone or by email. There are several sites that allow you to send messages to everyone all at once or allow you to create a webpage about your family member’s progress.
• Join a support group. Sources such as the AARP website, CancerCare, the Alzheimer’s Association and the Well Spouse Association are examples of where to look for support groups in your area.
• Get organized. Seek out simple tools like calendars and to-do lists that can help you prioritize your responsibilities. Work with your loved one to create an inventory of where important items are kept. It’s essential to know the location of certain documents: Social Security cards, marriage and birth certificates, a will or trust, the deed to the house, and insurance and bank accounts. Staying organized will give you peace of mind and leave you better prepared down the road.
• Nurture the positive relationships in your life. You may be overwhelmed, but take time to talk with friends and family you are closest to. Limit your interactions with negative people who will drag down your mood and perspective. Surround yourself with those who appreciate you and really care.
• Don’t forget to take care of your own health. Set a goal to establish a good sleep routine and to exercise a certain number of hours every week. Be sure to eat healthy and drink plenty of water. And see your doctor for recommended immunizations and screenings. Tell your physician that you’re a caregiver, and bring up any concerns you may have. A daily relaxation and meditation practice can be beneficial, as well.
“Remember there are plenty of people who want to help you in any way they can,” McGee said. “It’s important that you get a respite, or break and add some ‘life balance’ into your day. All you have to do is ask.”
For more information about services available at Parkland, please visit www.parklandhospital.com