Days of Dementia
‘You hate to see your spouse going downhill’
There’s a constant hum coming from her mouth.
She paces, step, slow step, step.
She rubs her small cupped hands together, a vacant expression on her face.
“It makes you mad at God for a while… Why not me instead of her?” says Ted Henderson, 69, of Marietta.
Henderson’s wife of 46 years, Karen, 69, first started showing signs of dementia four years ago, and now doctors have diagnosed her with Alzheimer’s disease, a more severe form of senile dementia.
According to the National Association of Area Agencies on Aging, there are more than 5 million people currently with dementia in the U.S.
One in 10 people age 65 and older has Alzheimer’s disease, 15 million Americans provide 18.2 billion hours of unpaid (familial) care to people living with dementia and 60 percent of people with dementia live at home and in the community.
For a man that has viewed his spouse as his teammate, his confidant and the love of his life for almost half a century, watching Karen now as her cognitive function fades is the epitome of heartbreak.
“She’s…” he stops, rubs away moisture from his eyes. “I can’t go there…You hate to see your spouse going downhill, but you don’t want her to leave.”
Ted gets up and begins to pace himself, walking to the window and looking through the blinds as he awaits a visit from one of Karen’s hospice nurses.
“Karen had better instincts,” he says, showing off photos of the couple’s two daughters, their grandchildren, the many memories that now Karen can’t recall. “She knew when stern was necessary and when to quit. The smartest thing I ever did, I just backed her up. We were a good team.”
He talks of chaperoning ski club trips with their daughters’ high school in New Concord, of how the sport became a love even after the two graduated.
He mentions a dream he had of riding out west on open roads, and how he knew Karen was his soulmate.
“I had brought up the idea one day but said I didn’t want to go if she wouldn’t enjoy it. We spent every moment we could together,” he explains. “Then one day I came home from work, and she’s sitting there on the swing with two motorcycle helmets.”
But now the days of ski trips, motorcycle rides and ballroom dancing across the wood floors are but treasured memories for those that still have them.
“Why doesn’t Nana give me a hug?” asks Roran Henderson, 5, as he accompanies his grandfather to pick up Karen from her first overnight hospice visit on Friday. “Maybe she doesn’t remember me, but I remember her.”
“Hi, sweetie,” says Ted as he kisses his wife. “Did you miss me? I missed you.”
But her only reply, a constant hum and slight embrace.
The group grabs some breakfast before dropping off Roran at daycare, making sure to get a booth at The Busy Bee so Ted can block Karen from walking off and get her to eat.
“She’s a real flight risk,” Ted explains. “So getting a few days in a locked hospice facility where I know she’ll be safe if I have to go up to New Concord or something is helpful.”
Karen hums, but takes the bites Ted feeds her, small pieces of sausage and a little bit of the over-easy egg.
“I watch her weight to make sure she’s not losing but it’s hard to get her to eat unless you block her in, she just wants to get up walk,” he says.
Day-to-day his routine begins with getting up between 6 and 7:30 a.m. to feed himself before waking his wife.
“It’s hard to remember all of the little stuff,” he says as he lists the bathing routine in the morning, feeding Karen, making sure to take her to the restroom between six and eight times per day. “And she naps, but really has no interest in magazines anymore.”
The whole time he talks of their schedule, Karen paces back and forth from the bedroom to the living room, sitting for moments before standing again, always humming, always rubbing her cupped hands.
Ted counts his blessings though that he and Karen could retire around the same time, and could move closer to their daughters and grandchildren as the disease first started to show.
“The grandkids really don’t know how to react to her, many times now she doesn’t have anything to do with them,” he explains.
Karen walks by, humming, rubbing her cupped hands.
“Now she hardly speaks at all and you almost never get a response,” he says. “So you’re constantly making decisions for someone but you don’t know if she’s happy. Nothing excites her anymore.”
But the pair still have their mid-afternoon and evening walks, their small errands to pick up medications or laundry detergent and their 9 p.m. ice cream.
Ted says as Karen’s diagnosis progressed he realized he needed more education.
“The Alzheimer’s (Association) held this caregiver training and that really helped me, not only with what to expect, but to know what was normal,” he explains. “But one of the most helpful things that I learned from the caregivers class –the thing I think that dispelled a lot of fear especially (in Roran’s mother Brooke Henderson) –is that it’s not a hereditary disease for the most part. Before that of course she felt doomed…Karen’s mother had this too.”
He says resources like the Savvy Caregiver class, the day center at the O’Neill Center and Project Lifesaver through the Area Agency on Aging and Buckeye Hills Regional Council are what family caregivers should utilize.
“You can’t do it alone, and what you read on the internet, it only helps so much,” he says. “There are no answers really and no cure, but the training helped me.”
And regardless of the diagnosis, Ted says he still wants to travel with his wife, to take their grandkids to see the country, even the world, even if the pace will be a bit slower and she may not remember.
“I’m glad we traveled and did it all together before this happened, and I’m thankful I can be retired and have the hospice help and her brother can keep her safe here sometimes,” he says. “I love her, I always have.”
He holds her close as the two slowly continue their walk beneath a shared umbrella, arm in arm, as the rain fell Friday afternoon and Karen hums.
¯ Put on by the Alzheimer’s Association, the six-week family caregiver training is an evidence-based program designed to help loved ones understand the progression of dementia and provide tools for caregiving and self-care.
¯ The next session of Savvy Caregiver classes are scheduled for the following:
¯ Tuesdays: Feb. 20 and 27, March 6, 13, 20 and 27, 1:30 to 3:30 p.m.
¯ Location: OhioHealth O’Bleness Hospital, lower level room 10, 55 Hospital Drive, Athens.
¯ Any individual interested in participating must call the Alzheimer’s Association, West Virginia Chapter to discuss course and content appropriateness and to reserve a space.
¯ A respite care stipend will be made available to all participants who complete the course.
¯ For more information call 1-800-272-3900 or email firstname.lastname@example.org.
Source: Buckeye Hills Regional Council/Area Agency on Aging.
¯ Project Lifesaver is a rapid response search and rescue service, using state of the art technologies and strategies to prevent or reduce the potential of harm to individuals suffering from Alzheimer’s disease, Down Syndrome, Autism, traumatic brain injuries, and cognitive impairments.
¯ These individuals may tend to wander away from their residences and become confused or lost.
¯ The one-ounce transmitter emits a personalized silent constant pulsating radio signal 24 hours a day.
¯ The transmitter is housed in a wristband unit that looks like a watch. It can be worn on the wrist or ankle.
¯ The radio signal can be located up to several miles away on land or in the air.
¯ Once notified the team responds on the ground to the wanderer’s area and starts searching with the mobile locator tracking system.
Source: Buckeye Hills Regional Council/Area Agency on Aging.