The snapshots of Ida are stunning. In one, she’s 80 years old, smiling, straddling a motorcycle; it’s her birthday, and she’s celebrating by knocking off one of the items on her bucket list. In another, taken a few years later, she’s clutching a stuffed animal; she looks confused. And then there’s the last one where her face is hollow and blank.
That’s what dementia does to a person, says Judy Burnham, who uses the pictures of Ida to teach family caregivers about the effects of Alzheimer’s disease and dementia on their loved ones.
(MORE: What's Your Caregiving IQ?)
Burnham is an instructor for Home Instead Senior Care, the world’s largest provider of in-home care, with more than 1,000 franchises, 600 of them in the United States. Its trained caregivers help seniors with day-to-day nonmedical tasks such as laundry, meals and appointment reminders.
But Home Instead also has a mission that goes beyond serving clients, says Molly Carpenter, who directs caregiving for the organization: “To help family caregivers, even if they aren’t using our services.”
(MORE: A New Literature of Dementia)
Because of that mission, Home Instead offers free family caregiver trainings in every state. And because caregivers are often exhausted and overwhelmed, the training is flexible, with one-day intensive sessions that cover a lot of ground, as well as shorter sessions offered over a few weeks.
There are also support groups, Carpenter’s book Confidence to Care and its accompanying app, and a website, helpforalzheimersfamilies.com.
Understanding Dementia From Inside Out
Whether Home Instead is working with clients or non-clients, Alzheimer’s is a major focus. “Over half of our clients have Alzheimer’s disease or dementia,” Carpenter says.
The pictures of Ida resonate with the family members, Burnham says, because they show what the disease looks like from the outside.
Those pictures help, but there is another picture that helps them more. It’s a diagram of what happens in the brain of a person with Alzheimer’s — nerve cells once connected, now severed and shrunken. The picture is stark, a bit of clarity for those dealing with the confusing, scary and often mysterious symptoms of dementia.
“I try to teach in my classes what’s happening in the brains of their loved ones,” Burnham says. “People get the biggest benefit from understanding what Alzheimer’s is doing to the brain.”
An “Aha! Moment" for Caregivers
They see this diagram, and they stop trying to fight the person; they see that there is damage in the brain, that the spark is gone and that there’s nothing they can do to reverse it.
They see that trying to get their loved one remember their name is like trying to get someone with a broken hand to catch a ball. It’s an “aha! moment" for many caregivers that gives them the permission to let go, relax and maybe even see the humor in some of the situations they encounter.
Or as Burnham puts it, in the plainspoken way that comes from hard-won experience: “You can’t plan for some of the things that happen, but you can’t freak out about it either.”
(MORE: Welcome to Age 50: Top Caregiving Tips)
So what are you supposed to do when, for example, your mom or dad doesn’t know who you are, or refuses to bathe, or starts telling you a story you know isn’t true?
Go with the flow.
“Leave your reality at the door,” Burnham says.
Think about the best movie you ever saw, how you went into the theater not knowing what to expect but you let go of your reality and let yourself be completely immersed in this other reality. You weren’t an actor in the movie, and you didn’t have to become another character, but you didn’t care if the people on the screen were on another planet or doing something you didn’t understand; you suspended disbelief, took the ride and enjoyed the experience.
Putting Learning Into Practice
How does that look when you’re dealing with a dementia patient?
Carpenter tells the story of a man who was refusing to bathe. People with dementia sometimes not only forget to bathe, she says, they forget why they need to bathe in the first place. After a caregiver got to know this man, she learned his military career had been important to him, so she told him a superior officer was coming for an inspection. He instantly got up, went to the shower and got himself in ship-shape.
Another Home Instead client who loved to talk about the dogs she had growing up — all named Spot — was soothed during times of deep depression by Spot stories read back to her by her caregiver (although at some times she would get corrected for telling a story about the wrong Spot).
Then there’s Ida, who told Burnham that a little girl had been coming to visit her apartment for help with her homework.
It turned out the “visitor” was a reflection in a mirror from a painting, and Ida enjoyed her company. Ida also enjoyed the company of a man named Johnny who entertained her at night. This, of course, was Johnny Carson, who appeared on the TV pulled up close to her bed. Instead of correcting Ida, Burnham just decided to do what she now trains other caregivers to do.
“I try to put them in the mindset of the person who has Alzheimer’s,” Burnham says. “Don’t worry about what they say. Look for the light in their eyes. That’s what matters.”