Caregiving is a journey that every one of us are likely to face in some fashion in our lives. As former First Lady of the U.S. and caregiving advocate Rosalynn Carter once said, “There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
Caregivers are selfless individuals who provide an estimated $500 billion in unpaid care every year in the United States. According to the National Alliance for Caregiving, nearly 26% of Americans report caring for someone with dementia or Alzheimer’s disease.
The caregiving journey can be frustrating and difficult to navigate. It can be tough on relationships and stretch finances. But it can also be one of life’s greatest blessings, allowing us to create precious moments of joy for loved ones in our care when we learn to celebrate what remains instead of solely focusing on what’s been lost.
Amy Cameron O’Rourke is a dedicated care manager with a passion for helping people and their loved ones find this peace and joy as they age. She is a best-selling author, a licensed nursing home administrator and a certified care manager with 40 years of experience helping families and individuals navigate the caregiving journey.
By following Amy’s five keys for the modern caregiver, she believes you can strengthen relationships and capture more moments of happiness as you help a loved one transition into a difficult stage of life.
- Understand The Fragile Years
“The Fragile years are a life stage,” O’Rourke says. “You'll see us slowing down. You'll see a reduction in activities. I think about my dad golfing five days a week, down to three days a week.”
O’Rourke says as the fragile years progress, it’s natural for older adults to start to give up some of their independence and spend more time reminiscing and looking back.
“It's a natural stage. When I meet adult children who are caregivers, some say, ‘I can't believe this, I wasn't expecting this.’ I'm thinking, ‘Oh, you need to know this is normal.’ Once they learn that it's normal, it calms everything down and then they can really be present.”
- Minimize Medical Intervention
“When you're in the fragile years, it’s key to find out what is important to the older adult. Do they want to watch TV? Do they want to walk? What do they want to do?” O’Rourke explained.
“Then when you're interfacing with the acute medical systems, if one of those treatments is going to interfere with that love of what they want to do, you may not want to do it. Because your priority is thinking, ‘Well, how do they want to function?’ So ‘less is more’ becomes the key in this time of life.”
- Manage Expectations
“Everybody has anxiety, and everybody has expectations that they want met, and they usually collide. You need to ask yourself, ‘What's realistic?’ If you want your mom or dad to go to the gym six days a week, is that realistic?” asked O’Rourke.
O’Rourke says that a common mistake she has seen caregivers make is that they try to make changes that are too big and overwhelm the older adult.
“Here’s an example,” O’Rourke says. “Mom is falling down. I want her to move to assisted living so she will stop falling. That's extreme. And also, people can fall in assisted living. So, it's an extreme solution and it's too much, too fast, for the older adult to even absorb because they have their own expectations.”
- Manage Your Energy
O’Rourke says it is crucial that caregivers manage their own energy and take emotional and physical breaks and ask for help when they need it.
“I was in a meeting with a daughter who's crying her eyes out. She's working full time, her dad lives across the street, her mom is in a nursing home and she hasn't stopped any of her normal activities. She's sobbing from fatigue, but she hasn't really learned how to manage her own energy. She needs help with her dad, she needs help with her mom, she needs help with herself,” O’Rourke revealed.
“By the end of our meeting, she could see that she couldn't sustain all the things she was doing, because you only have a limited amount of energy in a day. And she felt tremendous relief knowing ‘It’s okay to ask for help. I don't have to walk around so fatigued all the time.’ Because what happens is they get mad, and they don't want to get mad at the person they're caring for.”
- Knowing What To Do When All Else Fails
“My final key is for people to realize that all their interventions, all their help and support might not get their parent to where they need to be,” O’Rourke says. She recommends that caregivers investigate areas like home care, nursing homes, and assisted living, even before they think their loved one might need it.
“Find out the options for support ahead of time. That way when crisis hits, you’ve done your research and you can just be there for them,” O’Rourke continued.
Of course, O’Rourke acknowledges that not every loved one is going to agree with their caregiver on the best course of action. The key, she says, is to be flexible and to continue to value the relationship.
“Don't leave your parent because they're not doing what you think they should do. Just continue to be there and don't lose that connection. You just have to let go of thinking you’re not getting what you want.”
To hear more from Amy O’Rourke and to learn more, check out the Art of Caregiving Online Summit with our friends at Growing Bolder.