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Grief Comes Before Death When Caring For A Loved One With Dementia

Speaking grief dementia - feature WE

BINGHAMTON, NY (WSKG) — Karin and Rudy Fuehrer have been married for 38 years. They met in high school.

Fuehrer said he and Karin were a team. They did everything together and enjoyed it—even chores.

“Whatever I did, she did. What she did, I did, whatever task or chore,” Fuehrer said. “We’re kind of chore kind of people. Whatever needed to be done, we’d get it done.”

He said Karin is strong-willed, with a passion for doing, creating things. She started her own organic farm, growing a variety of vegetables and garlic, and ran a CSA farm share out of their home in Conklin in Broome County.

Her passion waned, however, after she was diagnosed with dementia at just 58 years old.

“Now she doesn’t initiate anything. Doesn’t really have a high interest in those sorts of things,” he said. “The chores literally became a chore, and the burden of the responsibility is predominantly on me.”

Karin, 60, has frontotemporal dementia (FTD), which accounts for less than 10 percent of dementia cases. Unlike other dementias, which typically appear later in life, signs of FTD frequently afflict people in their 50s.

While FTD can affect a person's mobility and language, Karin has the variant that primarily alters her behavior and personality. She often experiences delusions and paranoia.

“The belief that there are people in the house. There’s belief that she’s going to be harmed; belief that I’m not coming home; belief that I don’t go to work,” Fuehrer explained. “They’re very disturbing aspects of her particular dementia.”

When Karin is worked up, she sometimes runs away. It’s happened several times. Once, this summer, she decided she wanted to go home while visiting their daughter’s house in Endicott. Her strong-willed nature took over, Fuehrer said, and she walked out before her daughter could get sight of her.

Fuehrer said they called 911 to find her. Karin was picked up by Endicott police and taken to UHS Binghamton General Hospital. They had been there under similar circumstances several times before.

When he got there, she didn’t recognize him. “I wasn’t her husband. I was ‘the ugly guy,’” Fuehrer recalled.

A health care worker now stays with Karin during the day while Fuehrer’s at work, but he’s the primary caregiver. His daily duties include helping Karin dress in the morning and bathing her so she doesn’t forget to turn the water off.

“That’s the hardship, to watch the whole situation deteriorate, because I know what kind of person she is,” Fuehrer said. “I know who she is, I know how she is, but she’s not the same. She’s still my wife, and I still love her dearly, but she’s not the same.”

Fuehrer said he will do the best he can for as long as possible, but there will be a point in time, as her dementia progresses, that he won’t be an effective enough caregiver for her needs.

There are days he feels the heartache of losing his wife to this disease.

That’s what he felt when he found in his office a birthday card she gave him. On the front of the card were a young boy and girl, standing hand-in-hand with flowers. "Happy Birthday to my favorite playmate," Karin wrote, along with a loving note.

Fuehrer thought about taking the card home to remind her, but doing so would be too painful.

“The grief is that if I showed her this card and showed her her handwriting, she’d say ‘I didn’t give you this card,’” Fuehrer said. “That’s grief.”

Kristen Campbell, Director of Programs and Services at the Alzheimer's Association of Central New York, said feelings of grief that come up before someone dies are what’s known as anticipatory grief.

“Grief isn’t just related to death or the loss of a loved one,” Campbell explained. “It can be loss of independence, loss of a connection, loss of a relationship.”

These losses often come up as dementia progresses. Campbell said acknowledging this grief is sometimes the first and hardest step in coping with it.

“Just acknowledging that that’s the experience that you’re going through, particularly when the individual has not yet passed away." Campbell added, "Naming it grief can sometimes be a challenge."

Grief, for Fuehrer, is also coming to terms with the way Karin’s dementia upends his expectations for their future together.

“I was looking forward to a retirement at 65 or 67 and being postured correctly, maybe downsizing,” Fuehrer said. “We’d talk about a lot of things, and then all of a sudden you get hit with this and the whole dynamics of all the plans that you had, or thoughts that you had, just get sidetracked so quickly.”

There are still good moments. They just require more patience and creativity. For Christmas this year, Fuehrer said he will buy himself a gift, wrap it and tell Karin that she got it for him.

“You just have to think outside the box,” he explained.

There’s no use trying to control the disease, Fuehrer said. With dementia, you cannot predict how things will go or when an episode will begin.

But of all the lucid, happy moments, Fuehrer said with a smile in his voice, "That's the stuff you cherish."