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Alzheimer’s Caregivers Part I: Praying for strength and kindness

Posted on Friday, January 25, 2013 at 8:35 am

Dianne Dillon and her husband, Richard, are locked in a fight against time and dementia.

Dianne Dillon stepped into a room that was empty save for a makeshift bed, a television and her husband, Richard. She changed the movie on the TV to one that he had likely seen, but could not recall.

“There you go kid,” she told him before she stepped out the room. The music of a black and white film played as she glanced back one more time.

Dianne’s husband has dementia.

His form is called normal pressure hydrocephalus. It causes the brain cells to be crushed against the skull, gradually killing them.

“He’ll eventually be a vegetable,” said his wife.

But since the dementia’s onset, Dianne has been his dedicated caregiver.

After all, Richard was not the first loved one to fall under her complete care.

“In December of 2010…my mom had died and my dad was living in the house next door to my brother [who told me] ‘I can’t keep him here anymore…he has Alzheimer’s,’” Dianne recalled.

Her brother then said he was considering putting their father, Charles Jackson, into a nursing home. Dianne, a nurse herself, opted to take care of him.

After her dad had come home, Dianne went back to work on a night shift, only to receive a call from her frightened children at midnight.

“They said, ‘Mom, grandpa’s got a knife,’” Dianne said, remembered hiding the butcher knives as best as she could.  Yet he still found one.

“He was stabbing the walls,” she said.

After a friend talked Charles out of the knife, Dianne realized she could no longer leave him alone.

It was then that she found about the Alzheimer’s Caregiver Support Group at the Orchard in Warsaw.

She started attending the meetings at least every other month, and soon the group became a place where Dianne could share her knowledge and experience empathy from fellow members.

“By going to the meetings I figured maybe I could share what I learned because every patient is different,” she said.

In turn, the people she met at the support group sessions were amazed by how she dealt with both her husband and father’s dementia at the same time.

“Everybody said, ‘Two of them? That’s incredible,’” Dianne said. “But if I’m here taking care of one, it’s just as easy taking care of two.”

In addition, Dianne learned from the Alzheimer’s Association that sufferers’ reality was in actuality just 15 minutes long.

“You might be cheerfully making lunch and when you get it ready, they’re past that and gone on to something else,” she said.

From this, Dianne learned how to adapt to her father’s habits in order to keep him satisfied for as long as his reality lasted.

“My dad…could make himself peanut butter and jelly, and so I would leave it out on the table for him,” Dianne said. “Sometimes he would make triple decker sandwiches and eat them.”

But even though Dianne did everything she could, the hard times still came.

While her father was living with her and Richard, Charles had reached the point where he could no longer recognize his late wife, whose picture he carried in his wallet.

“It was a picture of her high school graduation and he’d say, ‘Isn’t she beautiful?’” Dianne recalled.

Dianne also recollected a time where he suddenly “hit me hard upside the head” without warning.

“I said, ‘You slapped me!’” Dianne remembered saying to her father.

Charles replied: “Yes, and I could have done it harder, so it didn’t hurt you as bad as it could have.”

She added that she never knew her father to become violent before the Alzheimer’s had set in.

She said that everyday she woke up, she would pray for the strength to be nicer than she was the day before.

“I start out nice but your frustration level gets so high that pretty soon you realize you’re being sharp even if didn’t ever mean to be that way.”

“I had come to the point where was saying to myself, ‘I don’t know how much longer I could do this,’” she added. “It was hard and I wasn’t getting enough rest which is one of the things that everybody talks about [at the support group meetings].”

But in spite of the trying times, she found strength in her father’s fleeting sense of humor.

She recalled having come home from church one day with her father and children. They had sat down to eat spaghetti when Charles asked: “How long have you owned this house?”

Dianne chuckled as she remembered saying to her father: “We’ve lived here for like 19 years.”

“Really?” he blurted out. “Right after you got out of jail?”

Spaghetti sauce went flying everywhere as Dianne thought her children were going to die laughing.

Dianne soon found herself maintaining a blog full of humorous quotes from Charles that her family and friends across the country could see and enjoy.

“I thought, at least they could see what he’s doing everyday,” she said.

The blog also served as a reminder of Charles Jackson’s brightest moments during his darkest days.

“When he made me upset, I would go and read all the funny things,” Dianne said, her voice breaking.

A strong network of friendships had also seen Dianne through her personal trials, allowing her to get outside the house even if it was only for work.

“I had a couple friends at work who said to me, ‘If you get in a bind and you can’t work, I can work four hours for you,’” she recalled.

“That was a great resource to know that there was someone who was willing to step in if my sitter didn’t show up or if either one of them acted out,” she added. “I never did use it except once.”

To keep herself motivated, the caregiver remembered a quote delivered by Michael Washington.

“You’re in charge of your attitude,” she remembered him saying. “It’s a matter of perspective [and] I would rather have my problems than [anyone else’s].”

Before Charles died of a stroke in July of 2011, Dianne recalled a moment of surprise and joy in speaking with her father when he was bedridden in the hospital.

“He hadn’t known me the whole time,” she said. “I leaned over and said, ‘Hi Dad. It’s Dianne.’

“He looked me right in the eye and said, ‘I know who you are,’” she said quietly.

Then she added: “I think that’s the hardest thing about Alzheimer’s…you expect them to recognize you and interact with you like they always have and they can’t.”

Dianne still goes to the support group meetings even after her father’s death to help others with loved ones who have Alzheimer’s.

“Because it took me forever to learn how to deal with it,” Dianne added.

She now cares solely for her husband, who knows his wife and has never been violent with his dementia.

But he still experiences similar moments of detachment from reality, according to Dianne.

“His doctor said to me, ‘When you ask him a question, he’s going to make up an answer that he thinks sounds good,” said Dianne with a smile. “So I learned you don’t ask him any questions, because he’ll tell you a big song and dance that sounds real.”

She smiled the largest when retelling the story of a “proposal” from a young woman who worked as Richard’s sitter.

“You’ll never believe what happened,” Dianne remembered Richard saying to her. “She propositioned me!”

Dianne added: “Next time she came I said, ‘Remember when I said he would say funny things that aren’t true? Well he told me you propositioned him!’”

She laughed as she remembered the sitter growing frantic and yelling: “I didn’t, I didn’t!”

“I replied, ‘I know that, it’s okay,’” said Dianne as she wiped a tear from her eye from laughing so hard.

During a photo op, Dianne introduced Richard, who was intrigued by the camera being used to take his picture and proceeded to speak of his time in Japan.

“I remember when I was [over there] I had three cameras, each with 2.8 lenses,” Richard recalled before wondering why a photographer had come to their house.

“I saw him wandering outside,” Richard said to his wife. “Is he going around taking pictures at the different houses?”

“No dear,” Dianne giggled as she shook her head. “He came here to interview us for the newspaper.”

When Richard and Dianne first married in 1979, she described him as “vibrant” and an “interesting person” who could make money off the stock market. Together they produced “bright children” with their eldest son pursuing his doctorate.

Dianne was sure that, no matter how sick her husband became, they would be able to travel the world together and fulfill a dream of theirs following retirement.

But as his dementia worsened, Dianne said: “That’s a dream we had to give up.”

Richard has reached the point with his dementia where he can no longer walk, and Dianne needs a Hoyer lift to move him in and out of bed.

“His feet don’t support him well and when I go to move him, sometimes he forgets to move his feet,” said Dianne. “So you can’t just turn him, pivot him and put him in a chair…it doesn’t work.”

She added that he has weakened for the point that she doesn’t take him out anymore.

“We stay home all the time, which bothers all of my friends,” she said.  “They say ‘You’re a prisoner in your own home,’ and I say, ‘Good thing I like to be here.”

Dianne wondered if there were more caregivers in the Northern Neck and beyond who remain afraid of discussing what they had gone through.

“I think Alzheimer’s is in the same area as mental illness,” she said. “People don’t talk about it… I wish they would.”

Dianne added: “It’s really important that they find somebody who can relate to what they’re doing…so they can say, ‘this is what bothers me,’ and then hear, ‘I’ve been there! I understand.’”