Advice for the long-distance caregiver
Filed by KOSU News in Public Insight Network.
June 27, 2013
According to the National Institute on Aging, approximately 7 million Americans care for a loved one from afar. As the elderly population in the U.S. grows, this number is expected to increase.
Liddy Manson knows the unique challenges of remote caregiving well. She deals with it both personally and professionally.
Three and a half years ago, Manson created a company called BeClose, a caregiving tool that uses wireless sensors to track the activities of a loved one.
The company grew out of her experience with her own parents. Manson’s 78-year-old father lived outside Boston with her mother. A lifelong diabetic, he started having trouble managing his own care. He couldn’t see well enough to administer his insulin shots, nor could he do the math to figure out the proper dosage.
Manson, who is based outside Washington, D.C., spent her days in a constant state of worry.
“I was calling all the time and asking lots of questions,” she says. “They would get defensive. They would get angry. I would get frustrated.”
All she wanted to do was help, but she couldn’t figure out how. “I kept saying to my husband, ‘You know, with technology, it shouldn’t be this stressful. We should be able to figure this out. We should be able to be helpful.’”
Shortly after Manson launched her company, her father passed away. However, she has continued her role as remote caregiver for her mother, whose cognitive abilities began to decline.
Over the years, she has combined technological and human resources to support her mom without the constant stress and worry she experienced at the beginning of her caregiving journey.
Manson, a source in WAMU’s Public Insight Network, recently shared some of what she’s learned.
What are the biggest challenges of remote caregiving?
One of the problems is what we call the unreliable narrator. So you call your mom and you say, “How are you doing?” and she says “I’m fine.” You don’t know whether that’s true or not. And the unreliable narrator gets more unreliable when you’ve got two people in the house, so mom and dad, maybe both saying different things.
People have a hard time being objective about their needs. Those who work in the aging industry, on the front lines of care, always say that people think about themselves as 15 years younger than they are. That starts happening at about 40 or 45. So, people who are 85 think of themselves as 70, people who are 90 think of themselves as about 75. And their children think of them as about the age they are. So, there’s always a distance. And the question is: How do you navigate that distance?
So, the hardest thing about remote caregiving is not knowing what’s really happening. What drives the stress level up is you don’t know what’s really going on and you don’t know whether you’re on stable ground or not.
What advice would you give to someone who’s trying to care for a loved one from afar?
One is, sometimes you’re in the situation you’re in and you have to do the best you can for the situation you’re in. A lot of people second guess themselves and say, “How did I let it get this way?” “How can I change my loved one’s behavior?” – that kind of thing. You know, a little bit of self-forgiveness is really important because it’s only then that you can actually be realistic about what the situation is.
My second piece of advice is: Make sure that whatever coping mechanism you have in place, whether it’s in-home care, some kind of technology or assisted living, make sure that it actually fits the profile of the person who’s aging. What’s happening right now is that there are lots of products and solutions in the market and each of them only work for about 30 percent of people. So you don’t want to pick the solution that works for the wrong 30 percent. You have to be realistic about what’s going on with your parent, otherwise you’re going to pick a solution that doesn’t help.
And then the third thing that I would really recommend to people is to share the care burden, so come up with solutions where your siblings are going to help out, your parents’ friends are going to help out, where you have some professional caregivers, as well. If you try to do it all yourself, you’re going to end up getting really sleep deprived and probably not making really good decisions. There are some great tools for this, like Lotsa Helping Hands and Care Pages, where you can set up a schedule and email it out to people who have said, “Please let me help.”
What we’ve found is people who offer to help really mean it. And if you say to them, “Oh, no, no, no, I’m fine,” they kind of get sad. So, it gives them an opportunity to give them something to feel good about and it’s probably better for your aging parent, as well, to have somebody other than just you in the caregiving constellation.
Do you have any advice on how to convince a loved one to accept help?
It’s really challenging with human in-home care when you have a resident who, let’s say, fires the care worker everyday.
I mean, I have to have someone come in for my mom and she has some fairly significant cognitive issues so she has no idea why these people are coming. And so you need someone who’s sort of cheerful and positive who will not be deterred when the resident says, “I don’t need you.”
But I’m also a big believer that the Trojan Horse is really important. So, for example, my mom was brought up during the Great Depression. She takes tremendous pride in her housekeeping ability, so it would’ve been devastating for her for me to say, “You can’t clean anymore, I’m going to send someone in to clean for you.” So I hired a male care worker and told her he was there to help her with her computer. And she was fine with that.
And so I think people need to think really creatively about how you send somebody in who’s a trained care worker so it doesn’t look like they’re taking away the few tasks that mom or dad can still do.
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