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The act of caregiving can be an emotionally gratifying experience, for both the giver and the recipient – however, what can be forgotten, or swept aside, is the stress that accompanies the act – and that can result in burnout.

“This is something that is very stressful on the person, to be a caregiver,” Dr. Ron Sheppard, OP/NTI said.

“We put a lot of things on ourselves … Whether it’s a family member or significant other or extended family member or a friend that you consider family, it’s the same thing. It could be an acute injury or a chronic injury; it could be from birth – there are parents who have taken care of their children all their lives.”

“So, there’s a lot of stuff going on. There are lot of people still working and trying to manage this caregiving situation,” Sheppard added.

He said one particular patient suffered a light stroke while serving as the primary caregiver for her husband who suffers from dementia.

“She was so stressed out trying to take care of this person and taking care of the house and she has adult children, and she has grandchildren. Her blood pressure was sky high when I took it, and she was not taking any medication at the time. My advice to her was, “You’ve got to get some help, circle the wagons, that kind of thing.”

Sheppard said the there is a mentality, among family members especially, that prevents individuals from asking for help.

“In their mind, they are thinking, ‘nobody’s going to say I didn’t take care of my spouse, or my family.’ We want to make sure that everybody knows our family member was taken care of and not just put off on somebody else.”

Sheppard made the point that ‘respite’ is temporary relief.

“You’re not giving away the reins of taking care of that family members,” he said. “But if you don’t take care of yourself, someone is going to be taking care of you, and I’ve seen that, health wise. Because that’s what’s happens when we get stressed. So respite caregiving will enable you to get a little bit of respite, get someone else taking care of that person, so that you can be a better caregiver.

“Because you can’t be a caregiver if you are constantly taking care of somebody and stressing about everything else. It’s eye-opening how we’ll go until we drop sometimes,” he said.

Respite is essential for the psycho-social wellbeing.

“I’ve had patients who have been in the choir at church or participated in food drives, taken food to people’s homes – you start being reclusive because you don’t feel that you have another moment to give anything to yourself. That’s when we start breaking down and getting sick if we don’t do things we enjoy. Some people like to mow their yard, do physical work,” Sheppard said.

Caregivers use a variety of excuses to avoid bringing in a respite caregiver.

“They think, ‘I have to do it all. No-one else will know them like I do,’” Sheppard said. “If you’re with them all of the time, you tend to start speaking for them; so you’re afraid to have someone come in and train that person to do what you know so well.”

Caregivers may not realize that respite is available in the home.

“You can enlist professionals. You can enlist adult family members to help. Create a schedule. When we are always stressed, forget things, mistakes are made (one caregiver was hurrying and fell and broke his hip and required hospitalization and therapy),” Sheppard said.

“While someone is with your loved one, you can still be at home,” he added.

In one situation, a caregiver became ill due to the stress and hired a ‘housekeeper.’ The patient became concerned that the new ‘housekeeper’ wasn’t cleaning much. After a while, he wanted to know where she was; so she began coming to the table, spending time with him little by little: putting together puzzles with him.

“She came in to help with the dynamic,” Sheppard said. “The wife then could pay bills, check emails, read a book out in the gazebo. There are things you can do in your own home, to pull away a little bit, and not feel guilty because you’re still there.”

“If you’ve got someone caring for your loved one – you’re not ‘not caring’ for them; you’ve given that person instruction, you’ve done the hiring, you’ve got people in there to help you with this,” Sheppard added.

He suggested that activities like working out in a home gym, reading, doing crafts, watching movies; even paying bills and communicating via Zoom with the grandkids can become part of a daily schedule again – “You can set that stuff up in another area, and you’re still there in the home,” he said.

The same gradual adjustments back to an active life can be made with regard to an adult day care center.

“You can be there in the room at first, just a figure in the room, and then gradually back away. Patients will often look to make sure their caregiver is there. When the patient starts trusting and knowing what’s going on there; and you know they’re going to be fine, then you can run small errands – get some groceries without it being it being a race to get the groceries in the car and get out of there to get back home. It’s amazing how we can get on the ‘treadmill of life’ and try to move as fast as we can when we’ve got someone waiting on us at home that we feel it’s our responsibility to take care of,” Sheppard said.

Warning signs and symptoms of burnout can vary from person to person; however, there are a few that are common among caregivers.

• Depression or anxiety from the stress of feeling: “I can’t do this – but I’m the only one to do this.”

• Losing interest in activities. Sheppard said this often happens because caregivers feel like activities that bring joy are considered ‘frivolous.’

• Avoiding friends and family. They notice the effects the stress is having on you and comment on them: what’s happened to your hair? You’re really losing weight.” They say, ‘Holler at me if you need me’ – Shepard recommends to immediately commandeer their help: ‘I tell them to say, ‘What’s your number? ; I need you Thursday at 2 o’clock. “There are ways of taking care of this and not giving up and feeling like you’re not helping your family member.”

• Weight change

• Lack of energy that leads to exhaustion

• Shortness of temper with the patient. “Then you feel guilty,” Sheppard said. “Then you lie awake all night and get even less sleep. It continues to perpetuate into this snowball effect. You either decided to, or it dropped in your lap, to take care of this loved one. If you’re going to do it – do it like your job (which means organize personal time, delegate responsibilities).

In addition to research about respite caregiver options locally, Sheppard advised to prepare the home environment for potential, sudden illnesses that might require a spouse to provide care.

‘Ahead of time’ home modifications include: increase lighting (sensor lighting, tube lighting at Home Depot, small Winter lights against the baseboards – good for balance issues); add electric outlets to bathrooms and sunrooms (for future oxygen, IVs, television hookups); install grab bars (suction cup styles are not reliable) in the bathroom and bedroom; install handrails along a long hallway and in areas where a walker won’t fit well.

Shepard graduated Morristown-Hamblen High School East in 1980 and was inducted into the school’s Hall of Fame in 2019.

He is a graduate of CNU, East Carolina University and the University of St. Augustine. He is neuro-certified for both adults and children, and he has practiced in outpatient and home health settings.

He was most recently an associate professor in both the Master’s and Doctoral programs at Emory and Henry College.

He was Founding Academic Field Work Coordinator at East Tennessee State University’s Doctoral of Occupational Therapy Program.

He is presently taking patients at Benchmark Physical Therapy in Morristown.

He travels the country, providing neuro CEU for practicing occupational physical and speech therapists.

He and his wife, Mindy Norton Shepard, reside in Morristown.