‘Dad was always afraid of getting Alzheimer’s’

Gov. Carroll Campbell Jr. is credited with building the S.C. GOP into the political force it is today.

As governor, from 1987-95, his list of achievements was long, from helping attract BMW to the state, to consolidating 79 state agencies into 13 and leading the state through one of its most devastating natural disaster, Hurricane Hugo. After leaving office, he worked for the Washington-based American Council of Life Insurance but remained active in state politics.

So when he announced publicly in fall 2001 that he was suffering from Alzheimer’s, it was not a surprise to many that he – and his family – were leaders in raising awareness about the disease. Alzheimer’s is a degenerative brain disease that starts gradually with forgetfulness of recent events or familiar tasks but eventually can lead to confusion, personality and behavioral changes, and impaired judgment. There is no cure.

“Dad was always afraid of getting Alzheimer’s because he had a history in his family,” said Mike Campbell, Carroll Campbell Jr.’s youngest son. “... The unfortunate thing was that his worst fears, as far as the disease, came true.”

Monday will mark 10 years since Campbell’s death, of a heart attack.

‘I would make excuses’

Iris Campbell said her husband’s aunt and an uncle had Alzheimer’s, but neither she nor her husband paid much attention to his increasing memory issues about seven years after he left the governor’s office.

Her husband was always one to remember names, she said, but had difficulty recalling then and struggled to complete thoughts.

“I kept thinking that we spoiled him being governor and having good staff that would hand him his speech or hand him his papers, open the door, close the door,” she said. “I would make excuses.”

But Mike Campbell said his father began to exhibit atypical behavior, such as frequently leaving his front door open and constantly losing his keys.

Carroll Campbell Jr. was traveling up to the American Council of Life Insurers in Washington, D.C., during the time, spending weekdays up there while coming back down to South Carolina most weekends to spend time at his home near Georgetown.

His staff started to take notice of his forgetfulness.

“A couple of them had called me just kind of making some inquiries to see whether I had noticed it or if the family had noticed anything,” Mike Campbell said.

Lt. Gov. Henry McMaster, who first met the former governor in the 1980s, said he also noticed at the time small hints that something was off with his friend.

“A lot of people get absent-minded sometimes, have other things on their mind,” McMaster said. “But looking back ... I see there was some indications that he wasn’t thinking clearly. I just dismissed it at the time because it was just so minor.”

After rushing her husband to the hospital for passing out while driving one day, Iris Campbell thought the doctors could figure out the cause of his forgetfulness. But tests in the emergency room yielded no explanations.

When their father was about to turn 60, Mike Campbell and his brother, Carroll Campbell III, decided to discreetly speak to his doctor about checking his memory.

The doctor agreed. After a physical, the doctor told the former governor his concerns and referred him to the Medical University of South Carolina in Charleston.

Doctors there performed a battery of tests, concluding that he was in the early stages of Alzheimer’s.

Mike Campbell said his father went through the typical stages of denial, anger, depression, then acceptance.

“The bad part about it was he was still mentally aware enough that he knew what was going on with him was not good,” he said. “He basically knew there wasn’t a cure for it. That was something that was really hard for him to accept.”

Public announcement

After the diagnosis, the Campbells would visit doctors at MUSC every two weeks or so to track the disease’s progression. The family had not made his diagnosis public, and Iris Campbell said she still does not know how rumors about it began leaking into the public and media.

As he did when he served in public office, the former governor took control of the situation and made the news public when he felt comfortable, she said.

Carroll Campbell Jr. tediously went through a list of the boards he served on at the time and told every chairman, “I’ve been diagnosed with Alzheimer’s. I probably have to resign from the board,” his family said.

He also wrote a letter to the people of South Carolina announcing his diagnosis, which was published in the Oct. 5, 2001 edition of The State newspaper.

“That was the way he wanted to handle it to make people aware of what he was going through,” Mike Campbell said, adding the family was touched by the outpouring of love and support.

Mike Campbell said his father heard from the Rev. Billy Graham, who was in San Francisco at the time and found out about it through the newspaper there. He also heard almost immediately from President George W. Bush, as well as families of Alzheimer’s patients from around the world.

The former governor had spent his career serving and helping others, and Mike Campbell said he chose to go public with his disease to raise awareness about Alzheimer’s and contribute to finding a cure.

Carroll Campbell Jr. became involved in the Alzheimer’s Association, and the rest of the family followed suit – something the family is still active in today. The former governor would speak at walks and also launched the Carroll Campbell Classic golf tournament to raise money for the Alzheimer’s Association.

Son Carroll Campbell III served as president of the board of the S.C. chapter of the Alzheimer’s Association. He also testified before Congress about the importance of funding research.

MUSC opened the Carroll A. Campbell Jr. Neuropathology Laboratory and Brain Bank after the family donated money to help launch it.

The Carroll Campbell Place opened in April 2002, with the Campbell family not realizing at the time it would one day be a haven for the patriarch.

‘I wanted him to always be taken care of’

After his diagnosis, Iris Campbell said she encouraged her husband to spend his remaining years doing what he loved – including reading, golfing and fishing.

But after a few years, even those beloved hobbies became difficult, she said, and he started having more trouble sleeping.

Through most of her husband’s time with Alzheimer’s, Iris Campbell was determined to look after him, even when it became exhausting. Friends would offer to stay with him, but she wanted to protect him, and them, so their final memories with him were pleasant.

“He was so successful, so handsome, so in control, so healthy. But people were just shocked by the fact that somebody like Carroll could have that kind of disease,” she said. “I really didn’t think anybody could do it as well as I could, because I knew him better than anybody, and I loved him and I wanted him to always be taken care of.”

Mike Campbell said his parents’ situation presented the extra challenge of a public element, and his mother worked to maintain his image as a successful governor rather than an Alzheimer’s patient.

“Nancy Reagan went through the same thing with Ronald Reagan protecting his legacy, but she had the assistance of the Secret Service to help her with it,” he said. “Mom didn’t have that. It was tough on her, and we could tell it was really taking its toll.”

In August 2005, the responsibility of taking care of her husband became more than Iris Campbell could handle. The family made the decision to put him in the Carroll Campbell Place.

“We always thought that we would be able to have him in home care, that sort of thing,” Mike Campbell said. “That just wasn’t going to be possible.”

The family also had to deal with people wanting to inquire about the former governor’s whereabouts.

“We heard of members of the press that were calling up facilities trying to find out whether he was there,” Mike Campbell said. “We knew it was not going to be a secret forever, but that’s something you want released on your terms.”

The family tried to bring the former governor home when they could.

On Thanksgiving that year, he went to his son’s house, about 10 minutes away.

It would be the final holiday the family spent together. Campbell died of a heart attack Dec. 7, 2005.

“It was tough to watch because you hate to see ... someone who had been so vibrant and brilliant, such a leader and a strong person all these years to have to go through that,” Mike Campbell said. “At the same time he passed the best way we could hope for, he just basically went to sleep one night.”

Providing a respite

Cindy Alewine, CEO and president of the S.C. chapter of the Alzheimer’s Association, credits the Campbell family with helping to increase state funds for the organization’s Alzheimer’s Respite Program, one of two respite programs the S.C. Office of Aging offers, up to $1 million in recurring state funds.

Respite programs provide funding for temporary caretakers to maintain their own health and reduce stress.

Iris Campbell said her primary concern was making her husband comfortable during his final days. She later realized she needed assistance and began to accept it.

“You think you can do it all,” she said. “I didn’t even think about my health, and other people were so concerned. Even Carroll’s doctors would say, ‘You’ve got to live your life.’”

Alewine said funding for the program took a blow in 2009 when the economy took a dive, with the state reducing allocations to $778,000 per year.

The program continues to receive that amount of money for the program, though McMaster, who oversees the Office of Aging, said recently he would like to see that number rise. He also encouraged people to volunteer to help fill in gaps.

“If we can just get it restored to where it was, we can live with that,” he said. “That’s what we’ve been asking for in legislative hearings. There will never be enough government money to do everything that’s necessary.”

On top of respite programs, Alewine said there are 90 support groups in the state.

“We want families to know they are not alone and they need to reach out as early and as often as possible,” she said. “… Their situations of their loved one and family can be really improved by seeking support and guidance for their caregiving situation.”

Increasing awareness, funds

Mike Campbell is outspoken about the need to increase federal funding for Alzheimer’s research so it’s comparable to AIDS, heart disease and cancer research.

“There needs to be an equal playing field for Alzheimer’s because this is something that is going to be affecting everyone,” he said. “… The numbers are growing at an alarming rate.”

No cure exists for the disease, though medications and advancements since Carroll Jr.’s diagnosis have helped ease symptoms.

Alzheimer’s is the sixth leading cause of death in South Carolina, with an 86 percent jump since 2000.

According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s, and as many as 16 million will have the disease by 2050.

The cost of caring for those with Alzheimer’s and other dementias is estimated to total $226 billion in 2015, the association said. Nearly one in every three seniors who dies each year has Alzheimer’s or another dementia.

McMaster said he believes finding a cure is possible and he thinks about what else the former governor could have accomplished had it not been for the disease.

“There was great sadness because he contributed greatly to the prosperity of South Carolina,” he said. “I just wonder what he could have done were it not for Alzheimer’s.”

Iris Campbell said she hopes to see the day when others will not have to watch their family members wither away from Alzheimer’s.

“I hope and pray that I live long enough, or at least my sons do, to see a cure for it,” she said.

This story was originally published December 7, 2015 at 10:51 AM with the headline "‘Dad was always afraid of getting Alzheimer’s’."