'Love Is Not A Memory' Karen has advanced dementia, Ed is her devoted caregiver and husband

Story by Olivia Ingle | Photos by Sarah Ann Jump

Ed and Karen (Kuebler) Young sit on the edge of their bed, hands locked and bodies close. Karen starts to cry, but Ed quickly soothes her with a kiss.

“When she leans in to you, you know she wants lovin’,” Ed says, while also holding his wife’s sippy cup. “When she looks at you with those puppy dog eyes, you know she knows what’s going on, but she’s trying to understand.”

It’s shortly after 3 on a Monday afternoon in early January. Karen’s in her nightgown. Although it’s afternoon, it’s morning for her. Karen, 75, typically sleeps 10 to 12 hours — sometimes longer, like this day. Having gone to bed around 12:30 a.m., she just woke up.

“A drink,” she says. Ed hands her the cup, surprised by her words.

“First time I heard her say that,” he says. “It’s little miracles we pray for, that she responds every once in awhile.”

Ed always encourages Karen — who has dementia — to talk. But typically doesn’t get much of a response. A few words here or there. A look. Maybe a small gesture. A lot of times, nothing.

Wearing giant sunglasses, Ed tries to engage Karen as they sit on their porch swing. Though Karen didn't respond, Ed has learned not to get discouraged. "At the very beginning, it would agitate me and I would be so worried," Ed said. "Now, I usually go with the flow.” When doing something silly or dancing doesn't work, he gives Karen playing cards, toys, cash or catalogs to keep her entertained.

Once an extrovert who never met a stranger, it’s a far cry from how Karen used to be.

Ed’s come to accept it.

“I can’t heal this, but I can make it a little bit easier on her,” the 77-year-old Jasper man says of his wife of 57 years.

Karen first noticed signs of dementia — a decline in mental ability that interferes with day-to-day life — in 2006 when visiting a granddaughter in the hospital after the birth of a great granddaughter. When Karen walked into the room, she didn’t recognize her own daughter, Holly Sullivan.

“That scared her,” Ed says. Karen’s grandfather on her mother’s side of the family had dementia, as did her grandmother on her father’s side.

For the next couple of years, Karen continued to worry about getting dementia. Throughout life, she always said, “You get what you expect,” and Ed reminded her of that often.

Ed believes that caring for Karen in the home they've shared for over 50 years has helped her to live longer and be happier. On the wall hangs enlarged photographs of them as teenagers: attending the high school basketball sectional at Huntingburg Memorial Gym in 1957 and swimming at Lincoln State Park during the summer of 1958. "She's got my going steady ring around her neck," Ed pointed out. "Going steady meant she was my girl."

In March 2008, doctors diagnosed Karen with mild cognitive impairment (or MCI) — which is a slight, but noticeable decline in cognitive abilities, such as memory and thinking skills. According to the Alzheimer’s Association, MCI increases the risk of developing dementia. Karen’s doctor at the time, Dr. Jeffrey Gray, wrote in her medical records that “some 50% of patients with MCI go on to develop more of a dementia of the Alzheimer’s type.”

When Karen was diagnosed with MCI, she started keeping a journal to document her journey, hopeful it would help future generations. The journal begins in August 2008 and ends in October 2009 when Karen — who Ed says was “a smart lady” who could read people within minutes of meeting them — was finding it increasingly difficult to remember and write her thoughts.

“I know I am in the early stages of Alzheimer’s. I suspected it 6-8 months ago ... Not only was I forgetting, I was losing my vocabulary and if talking about a happening, I would lose my thought.” —Part of Karen’s journal entry on Aug. 6, 2008

Alzheimer’s disease is the most common type of dementia and gradually worsens over time. It affects memory, thinking and behavior. The Alzheimer’s Association estimates 5.5 million Americans were living with Alzheimer’s in 2017, almost two-thirds of whom were women.

It’s important to note that Karen was never specifically diagnosed with Alzheimer’s (dementia and Alzheimer’s are often used interchangeably outside of the medical world), but her symptoms did gradually worsen over time. In 2012, Dr. Gray noted in Karen’s medical records more of a decline in short-term memory as well as language deficits. He said her symptoms were “more consistent with a degenerative type of dementia.”

Ed tries to coax Karen into rising from the bed to bathe. When giving Karen a sponge bath, Ed wears medical gloves for hygiene reasons. Karen also needs assistance to use the bathroom due to incontinence. “It’s a terrible, terrible disease. It deprives you of life," Ed said about dementia. "It deprives you of your personality. It deprives you of just taking care of yourself."

Ed retired from Indiana Furniture in 2013 so he could be home full-time to take care of his wife.

In 2016, nearly 16 million family members and friends provided more than 18 billion hours of unpaid care to those with Alzheimer’s and other dementias, the Alzheimer’s Association estimates.

While Ed doesn’t take his role as caregiver lightly, it took him some time to accept his wife’s prognosis.

“Eddie had a very hard time wanting to accept it. He will not discuss it or mention it. He’s too scared to this day. However, early in the year, he would get upset every time I forget or whatever. I had to tell him, ‘I can’t take it anymore.’ That period was the worst period of our marriage. He was too scared and too worried.” —Part of Karen’s journal entry on Aug. 6, 2008

Ed remembers his frustration and says he even battled some depression at the start of Karen’s dementia. He’s never been one to like change.

“I can’t look back (to) then, I have to look at where I’m at today...,” he says. “Because (I) didn’t know what was going on.”

In her journal, Karen talks about her mind going blank, her head pulsating, short- and long-term memory loss, speech problems, weight loss, among other things.

She mentions praying to God and putting herself in his hands. The Youngs have always done that — put themselves in God’s hands.

When Ed was 59, he was diagnosed with prostate cancer and Karen — who once taught religious education classes at St. Joseph Catholic Church and volunteered with Stephen Ministry — was by his side every step of the way. She’s the one who found the surgeon who was able to rid Ed’s body of the cancer and send him into remission.

“I bargained with him (God),” Ed says. “I said, ‘I got a lot of things to do yet.’ And he said, ‘Yeah, you don’t know what all you’re going to have to do yet...I’ll fix you.’”

God knew Karen was going to need him.

That Monday in early January, Ed follows Karen from their room. She slowly walks to the front door and peers out across Jasper’s Mill Street. Ed then follows her to the back door where Karen also peers out.

With Ed supporting her as she walks, Karen peers out the back door.

“Sometimes if we have to get her ready for a doctor’s appointment or something, we would try to get her going, but otherwise, we let her do her thing,” Ed says. “We get into her world and let her make decisions when she’s ready. She can cope with it better than making her do things.”

Karen is ready to get dressed and prepare for the day ahead. Ed is alone with her that day, as he is every Monday and most mornings. A caregiver with Home Instead Senior Care helps with Karen during the day on Tuesday and Thursday through Sunday. The Youngs’ daughter, Dede Britzman, cares for her mom through Home Instead on Wednesday.

Ed takes Karen into the bathroom and helps her use the restroom (she has incontinence), sponge bathes her and brushes her teeth. He then dresses her.

Throughout the process, Karen screams out in defiance, but Ed never raises his voice.

“It was hard for me at first when she would scream and holler,” Ed says. “I don’t think she recognizes me as her husband doing it (helping her).”

“Whenever I'm undressing her, she fights me. I can imagine what's going through her mind and then I try to ease her mind," Ed said. “At the time, she might not realize it’s me, her husband, in there helping her. She might think it’s somebody else or that somebody’s attacking her.” Ed patiently reassures Karen with a constant stream of "everything's going to be okay" in a calm and even tone as she cries out while he puts on her night gown.

The couple walks into the living room and Karen slowly sits down in a recliner. Ed patiently helps her with her socks and shoes and then picks through her hair that she had permed the week before. He pulls out some makeup and puts lipstick on her lips and dabs a little on her cheeks as rouge.

Karen grabs her husband’s hand and kisses it.

“Please take care of meee,” she says.

“I love you,” Ed adds, and does a little dance before heading off to the kitchen to make Karen’s breakfast.

While Ed busies himself in the kitchen, Karen picks up her baby doll sitting beside her in the recliner and kisses its head repeatedly.

“I love you,” she tells it, holding it tight. She kisses the doll again.

Karen’s sister gave her the doll several years ago. Although she now has several others, the first doll is Karen’s favorite.

“It makes her feel wanted and needed, something to nurture and love on,” Dede says.

Love is one thing Alzheimer’s hasn’t taken from Karen.

She hugs and kisses Ed, family and others who visit the house, and often reaches for Ed’s hand for comfort. “This is the communication part that they feel right now, that they can still do,” Ed says of Karen feeling and showing love. “This is her connection that makes her feel good and keeps her from being in that dark place.”

"She still shows a lot of love," Ed said. "She likes to hold hands a lot. She likes to be close and loved." Among Karen's most frequently used phrases are "kiss me" and "I love you".

Ed returns to the living room with Karen’s breakfast — half a bagel with cream cheese spread on top. Karen’s medications are crushed and sprinkled on top of the cream cheese. She takes more than a dozen pills at various times each day.

If Karen doesn’t want to eat or tries to play with her food, Ed, Dede or Jordan Hughes, Karen’s Home Instead caregiver, try to introduce the food to her in a new way, such as on a different plate or in a new bowl.

“It’s like it’s something new,” Ed says. “There will be times when she might not want to eat it. That’s OK too. She won’t starve.”

Karen’s dementia has come with adaptation after adaptation. When a problem presents itself, Ed nips it in the bud.

When Karen began repeatedly spilling her drinks, Ed bought her a sippy cup. The refrigerator and kitchen cabinets have safety locks on them. Kitchen knives are hidden. There’s a gate on the front porch. Ed also has a gate on the side of the bed so that Karen can’t roll out.

"Just like a little kid," Ed said. "That's what they do. They put things in their mouth." He quickly intercepts as Karen goes in for a taste of money. Ed learned to keep a careful eye on her after an incident last year where Karen swallowed three quarters and needed to have them surgically removed.

Ed has also hidden the car keys and the couple’s checkbook. Loose change is also hidden because Karen once swallowed some and had to have it surgically removed. She also no longer wears rings or other jewelry because she once swallowed two rings and had to have them surgically removed too.

Ed is also mindful of what decorations he has around the house since Karen once took a bite out of some artificial fruit on the living room table.

“When something occurs and we know it’s a problem, we jump on it right away,” Ed says. “We’ve got to make it more pleasant for her.”

While Ed lets Karen do her thing at home, she is never truly alone. He or another caregiver is always close by because she left home by herself a few times. At least one of the incidents, Ed had to call the police.

“I’m not 'sharp'. My head now is feeling like a mixing bowl— It’s swishing inside and seems like its going around and around. It’s pulsatory inside my head. That happens when I want to use my brain,” Karen wrote in her journal on September 30, 2008.

Another time, more than a year ago, Karen was beating on the windows and the paperboy saw her, thought something was wrong and called the police. When the police came, Ed says Karen bad-mouthed him and told them Ed had cut her. When an officer asked Karen to show him the cut, she couldn’t because there wasn’t one. Ed explained that Karen has dementia.

The incident prompted him to make sure law enforcement is aware of the Youngs’ situation.

Ed is also prepared if anything should ever happen to him while he’s out and about with Karen.

“I used to be scared to death to take her for a drive for fear that something would happen to me and nobody would be able to take care of her,” he says. “I went ahead and made up some different things and I put them in the car.”

He has a card in his billfold that says who he is, who Karen is and that she has dementia. He’s also placed pictures of Karen above the sun visor in the car, “in case she wouldn’t be in the car and she would be wandering.” With the pictures, Ed has also included additional information about Karen and information about her medications.

“Little things that you have to do to make things right for her,” he says. “Now, I don’t fret it. I drive all around with her.”

He admits it wasn’t easy for him to take over everything Karen always did. Karen was the take-charge-type and in addition to her duties at home, always had a full-time job — such as resource manager for the state, a waitress, administration at the former St. Joseph’s Hospital, a babysitter and a Tupperware dealer.

At home, she always made time to plan things like family events and holidays, decorating the house from top to bottom. Dede calls her “the hostess with the mostest.” Karen also always bought Christmas and birthday presents months in advance for every single family member.

Now, that’s all up to Ed. He works hard at it because he knows that’s what Karen would’ve wanted.

“Seemed like it was so monumental for me to step into her shoes and do everything that she did,” Ed says. “She done a lot of things. I done a lot of things. We done a lot of things together.”

Ed left this note on Karen's pillow on December 20, 2015 during her three-week stay in a nursing home after being hospitalized for hallucinations.

Early in Karen’s Alzheimer’s diagnosis, Ed remembers someone telling him that the caregiver usually dies before the patient.

He went along caring for his wife and didn’t think much about it, until early 2015 when his children noticed he wasn’t taking care of himself. He was down from 205 pounds to 170 pounds. The stress was too much.

“I thought about that,” Ed says. “That was kind of scaring me. I want to be there for Karen.”

So he began the process of getting a service to come into the home and help him care for Karen. It took awhile, he says, as he had to go through the legal process of qualifying for Medicaid and getting power of attorney over his wife.

Quality Care came into the Youngs’ home first, but at that point, Ed says “Karen didn’t want nobody around.” So he canceled the service.

Home Instead starting coming in November 2016 and Karen didn’t mind the help then. While Ed is still home most of the time, he now has the freedom to run errands, go to therapy and do other day-to-day things he wasn’t able to easily do when he was caring for Karen 24/7.

Karen often expresses distress when Ed puts her to bed. "I noticed that when I pray out loud, she settles down. I say the Hail Mary and Our Father. I keep saying it, saying it out loud to her and it just seems to soothe her and settle her down,” Ed said. He usually takes some time to himself before joining her for the night. Ed has never considered sleeping separately, even though Karen often wets the bed.

He also has some time to relax — as much as someone caring for a loved one with dementia can — and doesn’t hesitate to catch a movie at Jasper 8. Sometimes, he goes with grandchildren — he and Karen have 21 grandchildren and 8 great-grandchildren — but other times he goes alone. He recalls seeing “Wonder” by himself in November.

“I did have a few, I guess, tears that Karen wasn’t with me to share it,” he says. “You do feel this loneliness.”

He finds solace in therapy and support groups.

“At the very beginning, Dede and I went to the first one and pardon my French, but it scared the hell out of me, listening to all the other people, because there’s so many different kinds of stuff that goes on,” he says of attending his first support group. “I didn’t want to go back again. I just didn’t want to.”

So, he stayed away for a while, until his son, Bryan, convinced him to go to counseling, something Ed says has “helped me an awful lot.”

He goes to personal counseling once a month, and has also since gone back to the support group, which also meets once a month. There, he’s able to relate with others and what they’re going through.

“I’m giving a lot of advice to people up there, how I’ve been getting through with her (Karen),” he says. “All you can do is calmly talk to them about the situations that you’re in and they might give you some advice about what they’ve been through and how they’ve handled it.”

Karen’s dementia has pulled Ed out of his shell a bit. He says he was always a quiet, introverted person, and could sit beside someone all day without saying anything. Now, he’s not shy about telling his story and offering advice. He also used to struggle with talking on the telephone; however, with all of the appointments and arrangements he’s made for Karen in recent years, he’s well past that fear.

Karen and Ed are part of a group of friends that meets weekly for dinner. Over the years, they have watched the progression of Karen's dementia. At Applebee's, Ed made sure that Karen was seated next to a friend so that she had the potential for social interaction. Ed used to get embarrassed if Karen caused a scene while eating out, but he no longer lets it bother him. Ed has become a source of encouragement for another member of the group to bring their spouse with dementia out more often.

He remembers Karen telling him once: “How can you become a friend if you don’t want to meet a stranger?”

Ed never knows what phase of dementia is coming next for Karen. He knows what others from his support group have gone through with their family members, but dementia runs its course differently for everyone.

Not knowing what to expect scares him.

“They put a 10-year limit on things,” he says. “They usually last 10 years. I think to myself, ‘Wow, it’s getting close to 10 years. Will she last longer?’”

It was Karen’s wish to never be put in a nursing home. She also told Ed once: “I hope I die before I don’t know anybody.”

Ed acknowledges that his wife will die twice — once from dementia and again with her actual death. He’s never been one to bring up death, but Karen always did.

When Ed looks at his wife, he doesn't see her disease. "I see a wonderful person, the mother of our seven kids and how much she had to labor over the years...She's done so much for so many people,” Ed said. Though he admits, “Every once in a while I think she's just going to snap out of it."

“It was tough for me to be able to face the fact because I was scared, petrified to die. Scared of death,” he says. “I didn’t want to face it at all.”

He remembers when Karen took him to Jasper’s Fairview Cemetery in 2008 to show him the plot and tombstone she bought for them. He looked at his picture on the stone and cringed. He didn’t want to think about death. But Karen was a planner.

We talked about preparations I have taken for possible future generations. He has a “phobia” re: death. That is why I purchased grave plots and gravestones. I purchased plots 3 mo. ago. He allowed me to show him the plot the next day. He apologized for not supporting me in the past. — Part of Karen’s journal entry on Oct. 3, 2008

Ed took over the planning once Karen’s dementia set in. The couple’s funerals are now paid for.

“You just got to do what you got to do,” Ed says. “Accept it and go on.”

He’s accepted another of Karen’s wishes — to donate her brain to research.

The couple’s daughter, Sheila Cochren, gathered the information for that to happen and gave it to her father with a note last September. In the note, she describes her mother as “selfless to the end.”

“You’re twice as amazing by filling her wish so she could help others,” Sheila wrote to Ed. “You have grown and learned so much through mom but isn’t that what mom does? She’s always been a teacher of life then and now. Always helping and touching others.”

Sometimes, Ed goes to St. Joseph Catholic Church or Memorial Hospital and Health Care Center’s chapel to pray.

"It’s a big learning experience. You have to make a total commitment to not only take care of them, but to take care of yourself. You don't know all this stuff at the very beginning,” Ed said. He prays for strength, patience and understanding at St. Joseph Catholic Church. “I ask for the power to do what I need to do, not knowing what tomorrow will bring.”

Other times he goes and sits down by the river. It’s a spot he and Karen used to frequent together with Blimpie ice cream in hand.

He’s always praying for and thinking of Karen — that girl he met on Dewey Street as a teenager many, many years ago. Just the other day, he was driving home from Huntingburg when “a good country song to dance to” came on the radio. And of course, he thought about dancing with Karen and the dine and dances they attended early in their relationship.

While he thinks of the past often, he also considers his and Karen’s future.

“Right now, I hope that I can take care of her and I hope that I have her for a long time and that she don’t hurt,” he says. “I hope that I have the strength to be able to carry on and take care of her, for her to be with me ’til the very end.”

The Herald | Dubois County, Indiana | Saturday, March 17, 2018