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.”
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.
Letter from former Gov. Carroll Campbell published in the Oct. 5, 2001 edition of The State:
To the people of South Carolina:
I am writing this open letter because you have been so good to my family and me. It is right that I share with you a personal matter that I believe you should know.
I have been diagnosed with the early stages of Alzheimer’s disease. My doctors say I inherited a gene running through several generations of my family that contributed to this condition. This is a reality that my family and I have had to grasp and deal with.
Otherwise, I am physically fit. I intend to fight this illness. I will not yield. This is my nature and my plan.
As you might imagine, I have tried to learn as much as I could about this disease. I am amazed at the progress that medical science is making. I am confident that this disease can be conquered.
That gives me hope. I pray that my hope in these circumstances can uplift the many people in our state and country similarly afflicted.
I intend to remain active and involved. I have set a goal to do everything within my power to support medical research.
Iris, my strength for these many years, has joined the battle. So have our two sons and their wives, who have given us life’s ultimate gift: grandchildren, whose joy for us is indescribable. Any grandparent will know what I mean.
As I have faced the reality of this condition, so I have paused to ponder all of God’s blessings for me. He has given me a wonderful family and a long life. Knowing what many people must face, I have no reason for complaint.
One of my most cherished blessings was the honor of serving you in the state Legislature, Congress and the Governor’s Office. I want to thank you, the people of South Carolina, for all that you have meant to my family and me.
Whatever success I have achieved, whatever good I have done, I owe to you.
When you twice elected me governor, you gave me your trust. I tried to honor your trust every waking moment in public service.
I want you to know that I am as optimistic as ever about life.
Our country will prevail in the current crisis because America is strong and good. We have a president who is leading our country through troubling days. I will continue doing what I can to support him and our military.
I am optimistic because we live in a state whose values are the backbone of America. I often relive those days after Hurricane Hugo when South Carolinians, much like New Yorkers in recent days, heroically recovered and rebuilt.
And I am optimistic because I know that God is in control. He is in control over my life, and America’s future.
This is not a letter to say goodbye because I’m not going anywhere. This simply is a letter to thank you - each of you - for everything you have done for my family and me.
Iris and I appreciate the respect for our privacy and we ask you to keep us in your prayers.
Carroll A. Campbell Jr.
From the Mayo Clinic:
At first, increasing forgetfulness or mild confusion may be the only symptoms of Alzheimer’s disease that you notice. But over time, the disease robs you of more of your memory, especially recent memories. The rate at which symptoms worsen varies from person to person.
Brain changes associated with Alzheimer’s disease lead to growing trouble with:
Everyone has occasional memory lapses. It’s normal to lose track of where you put your keys or forget the name of an acquaintance. But the memory loss associated with Alzheimer’s disease persists and worsens, affecting your ability to function at work and at home. People with Alzheimer’s may:
▪ Repeat statements and questions over and over, not realizing that they’ve asked the question before.
▪ Forget conversations, appointments or events, and not remember them later.
▪ Routinely misplace possessions, often putting them in illogical locations.
▪ Eventually forget the names of family members and everyday objects.
▪ Disorientation and misinterpreting spatial relationships.
People with Alzheimer’s disease may lose their sense of what day it is, the season, where they are or even their current life circumstances. Alzheimer’s may also disrupt your brain’s ability to interpret what you see, making it difficult to understand your surroundings. Eventually, these problems may lead to getting lost in familiar places.
Speaking and writing
Those with Alzheimer’s may have trouble finding the right words to identify objects, express thoughts or take part in conversations. Over time, the ability to read and write also declines.
Thinking and reasoning
Alzheimer’s causes difficulty concentrating and thinking, especially about abstract concepts like numbers. It may be challenging to manage finances, balance checkbooks, and keep track of bills and pay them on time. These difficulties may progress to inability to recognize and deal with numbers.
Making judgments and decisions
Responding effectively to everyday problems, such as food burning on the stove or unexpected driving situations, becomes increasingly challenging.
Planning and performing familiar tasks
Once-routine activities that require sequential steps, such as planning and cooking a meal or playing a favorite game, become a struggle as the disease progresses. Eventually, people with advanced Alzheimer’s may forget how to perform basic tasks such as dressing and bathing.
Changes in personality and behavior
Brain changes that occur in Alzheimer’s disease can affect the way you act and how you feel. People with Alzheimer’s may experience depression, anxiety, social withdrawal, mood swings, distrust in others, irritability and aggressiveness, changes in sleeping habits, wandering, loss of inhibitions, delusions (such as believing something has been stolen).
Many important skills are not lost until very late in the disease. These include the ability to read, dance and sing, enjoy old music, engage in crafts and hobbies, tell stories, and reminisce.
This is because information, skills and habits learned early in life are among the last abilities to be lost as the disease progresses. Capitalizing on these abilities can allow you to continue to have successes and maintain a high quality of life even when you are into the moderate phase of the disease.