Elizabeth Brinson’s hands tremble slightly as they come to rest on the yellowed newspaper article, the late morning sunlight spilling in through the window behind her falling faintly across the story’s black and white photo. Her fingers touch the image of the still-young man who gazes out uncomfortably behind black frame glasses and linger there gently, as if the past detailed in the faded newsprint was a fragile, living thing, easily damaged and lost to memory.
“He was very, very bright, genius I.Q. That was what was so devastating about this illness, he couldn’t read, he couldn’t write. We’ve got thousands and thousands of books…,” explains Brinson, her voice trailing off into the shadows of the room.
The news article details the life of Brinson’s husband, Ken, a man who served his country in the U.S. Army before devoting himself to education, who stood on the front lines of school integration in the early 1960s and did his best to offer solace and safety to the young black children in his care.
The man featured in the paper’s “Personality in the News” profile is the one Elizabeth Brinson fell in love with and married in 1961, the same man who, in the years just before his death, became a virtual stranger as he slowly succumbed to the ravages of Alzheimer’s disease.
The story of Elizabeth and Ken Brinson, like the story of the other Alzheimer’s patients and caregivers featured in this article, follows a predictable trajectory of diagnosis, deterioration and loss. And like all such stories, in its remarkable, bittersweet details, it is utterly and uniquely their own.
“I haven’t grieved,” says Brinson. “I’ll tear up, but I haven’t broken down and cried. And I think a lot of it is because I grieved for him so long before he died.”
“For better or worse”
In 2007, three years before he was diagnosed with Alzheimer’s and nine years before the disease claimed his life, Elizabeth Brinson began to understand something was wrong with her husband.
“All of a sudden, if we needed a plumber, he wanted me to call the plumber. Or if we were getting ready to take a trip he wanted me to make the arrangements. That was not like him, so I realized he was backing off things,” she recalls.
Three years later, during the couple’s 50th anniversary vacation in Hawaii, Ken contracted meningitis and underwent a battery of tests.
“They could not do an MRI on him because he had a pacemaker. But they did enough CAT scans that they saw things that were not normal. When we came back the report that came from Hawaii to our local doctor said they suspected Alzheimer’s.”
Brinson says her husband accepted the diagnosis with a measure of relief.
“He didn’t rail about ‘why me?; he didn’t do that at all. I think he had known himself for a long time that things weren’t right and now this was an answer. So we joked about it and we talked about; we didn’t hide it.”
Brinson describes her husband as a “gentle man” who, in 1964, played a crucial role in integrating one of the oldest high schools in North Carolina.
“He was a principal in Warrenton and I think they took in seven black students that year. The first day of school Ken had sent me and our son to Raleigh to my mother and daddy’s house, because the Ku Klux Klan came in and was threatening,” she recalls. “The first bus that came had one little black girl on it, and Ken came down the steps and down the walkway to the bus and she was sitting right up front scared to death and shaking. And he went on the bus and talked to her a little bit and said ‘Come on now, we’re going to go to school.’ And they walked into the school and nobody did anything. He did that with each bus that came in. That’s one of the things he was most proud of.”
Ken would go on to serve as superintendent of school systems throughout the state, including Goldsboro City and Durham County schools.
Unlike many Alzheimer’s patients, Brinson said the disease progressed relatively slowly after her husband was diagnosed.
“The doctor said most people go in a straight line and then they go down steeply. Ken went more in waves. He was higher functioning up until the end than a lot of Alzheimer’s patients. He couldn’t write, but he could still tell a joke and he could do Sudoku up until just a few months before he died. He was just a unique man.”
As the disease progressed, Ken began to hallucinate, a change that would have life threatening implications for Brinson.
“I laid down on the sofa with him because my back was hurting,” she remembers. “He put his arm around my waist and had his hand on my head. I was lying there and I looked up to see if he was asleep and he tightened on me, and I realized he was somewhere else. Whenever I moved he would tighten his grip.”
Luckily, Brinson was able to reach her phone and call 911.
“The police were able to get in and pry him off of me. He had been hallucinating that someone had broken into our house.”
With his mental and physical health in decline, Brinson made the decision to place Ken on hospice care. Just prior to that decision she was told by doctors that her husband’s pacemaker battery needed to be replaced.
‘In talking to the doctors and Ken and my children, I decided not to replace the battery,” says Brinson. “My doctor said ‘If he needed a pacemaker at this stage would you put him through that?’ and I said ‘no,’ so he said ‘You’re justified in not making him go through surgery to replace it.’”
Brinson pauses before continuing.
“Ken and I had promised years and years ago not to let each other be vegetables, and it was going to be that way (for him).”
Brinson was eventually able to transfer her husband to Courtyards memory care center in New Bern. She brought in a bed and stayed with him from early morning until he fell asleep.
Ken’s final days were tranquil, she says. His pacemaker battery stopped on a Saturday morning, three months after he began living at Courtyards.
“I woke up and he was breathing differently,” she remembers. “They came in and I said ‘Is he dying?’ He slept away that week and then…went away.”
“We were married 56 years, he was my life,” she says. “I just know we did the right thing for him. I wouldn’t advise it to anybody, I would just say this is what was right for us.”
“You know your husband’s eyes”
“I’m the kind of person who thinks they can do anything.”
Sylvia Maisack laughs nervously as she thumbs through the journal she kept as a day -to-day log of her husband’s seven year descent into the depths of Alzheimer’s disease.
“I kept him home with me longer than I should have, probably, past the point where it was safe for me,” she acknowledges.
Turning to a journal entry dated August 21, 2015, she reads: “On the 19th Don hit me hard on the head as I bent over to help put on his underwear. His mood and aggression was present but I was surprised by it, didn’t know he was going to do that. It frightened me to think what if the hit had been harder.”
Luckily, Maisack caught herself on a shower chair after she was struck, but the incident left her right arm in pain for weeks.
“That night I knew, I could have died,” she says matter-of-factly.
In another journal entry from earlier that month, Maisack describes her husband’s accelerating mental and physical debilitation.
“It’s so hard to see Don in his present condition — depressed, irritable, angry, distressed. He seems to have a headache in the morning. He has imbalance, abnormal stance and gait. He’s stooped over.”
Even after the disease robbed him of his ability to read, Maisack says, Don would still struggle to maintain an appearance of normalcy.
“He would sit by the window with a stack of magazines, pouring over them, appearing to try to understand them, and then just end up turning the pages,” she remembers.
It was not the life Maisack and her husband, who grew up together in Hagerstown, Md., envisioned when they moved to New Bern in 1991, following Don’s retirement from NABISCO.
“He worked his entire adult life for the same company, started off in the stockroom,” says Maisack. “In those days people stuck with a company if they treated them right. We got lots of free cookies.”
Maisack credits her experience as a registered nurse working in schools and intensive care clinics with her ability to manage the stress of caring for Don after he was diagnosed with Alzheimer’s in 2009.
“That helped me probably as much as my faith, which is number one,” she says. “My Bible is always right beside me.”
Maisack says her husband began exhibiting signs of Alzheimer’s as early as six years before his diagnosis. A 2003 note from his cardiologist mentioned that he was exhibiting poor memory retrieval.
“At that time, however, he wouldn’t admit to having any memory problems,” remembers Maisack.
Don’s friends, however, noticed changes even earlier, she recalls.
“I was speaking to one of his golf buddies and he lost his ability to keep his golf score long before I saw changes here at home. I picked it up in other ways, with mistakes in the checkbook, leaving the bridge game at night and he forgets how to get home and it’s only a few blocks from where we live. All of a sudden, that’s what was happening.”
Even after his diagnosis, Don refused to acknowledge his declining mental state, Maisack recalls.
“He was very angry. He still was with it enough that he didn’t want to be told. He was denying it, I was denying it a little bit. I couldn’t even get him to stop driving. He went through a red light… we’re lucky we weren’t killed.”
Shortly after his diagnosis Don was prescribed Aricept, one of the early Alzheimer’s drugs. Like many Alzheimer’s caregivers, Maisack says her husband saw few if any benefits from Aricept or other drugs he was prescribed, such as Namenda.
“Who knows if it did any good,” she says flatly. “I don’t know how you evaluate that when you’re just going on a downward spiral. I can’t say the medications had any effect, because he kept deteriorating.”
Maisack says she made an effort to keep her husband physically active throughout his illness, taking him to Courts Plus three times a week to walk on the treadmill.
“Every patient is different and has their own speed and degeneration. Don lost just about everything except his motor skills.”
Maisack also took Don to the George Street Senior Center in New Bern once a week to provide a degree of socialization for her increasingly isolated husband. She also drew on Don’s love of music and cinema to help keep him calm.
“He was a trumpeter as a young man, he played in dance bands,” she says. “Music very often is a factor Alzheimer’s patients never lose, so I’d put on some of his old records. And the Turner Classic Movies, we’d seen them all but I’d put them on for him. Those were the babysitters, they kept him happy.”
She also began attending the local Alzheimer’s Support Group once a month. “When the members learn something that works for us we share it with each other. That was very important to me,” she remembers.
In the last year of his life, says Maisack, Don’s disease progressed rapidly. Due to tissue degeneration he began having difficulty swallowing food, while weakened muscles in his legs eventually left him unable to walk. On May 15, 2016 Maisack awoke to find her husband sitting on the edge of their bed, unable to stand.
“I tried to get him up but I couldn’t. I burst into tears and told him ‘Well, this is the moment we’ve been dreading.’ Because I had told him from way back, the day you can’t walk is the day I can’t take care of you by myself.
“He looked up at me, with those eyes that understood, and I sat him down in a chair and went and called 911, and they came and took him to the hospital.”
After several weeks in the hospital Don was moved to a hospice facility in Newport.
“He was taken off food and liquids; they kept him comfortable with medication,” explains Maisack. “He was given intravenous fluids, but we didn’t allow any other artificial means (of life support), we had those papers ahead of time from the lawyers.”
On his third day in hospice care, a Friday morning she remembers, Maisack received a call that Don had passed away in the night.
In those final weeks, in the rare moments when the morphine would wear off and he would regain consciousness, Maisack believes whatever was left of the man she married was able to transcend the damage Alzheimer’s had inflicted.
“I still think we had a slight connection with that spiritual message that I repeated to him any number of times, but especially that last week: our bodies pass away but not the spirit, that was the simple message. And he looked at me and…you know your husband’s eyes, and they could speak even though he couldn’t speak, and I think something got through.”
“He could fix anything”
Debbie Rodriguez’s voice still carries the rich, gritty brogue of the north New Jersey neighborhood where she grew up, a stone’s throw from where she married, in her own estimation, the man who saved her life 25 years ago.
Having divorced from her first husband, and with two young children to raise, Rodriguez remembers the days before she met George, a widow with two children of his own, as a particularly dark time.
“I was probably going to be on welfare, though I never let myself have that happen, had I not met George when I did,” she says. “I probably would have lost the house that I owned. I was making $200 a week and I was paying a $600 a month mortgage.”
Despite an age difference of 13 years, Rodriguez says her husband was an active, self-taught master mechanic who liked nothing better than spending time in their garage, his hands and mind buried deep in one intricate repair job after another.
“He will be 80 in October and I’ll be 67; our birthdays are a day apart,” she confides. “The difference in our ages was never a problem. He used to spend hours and hours in the garage fixing things, piddling with this, piddling with that. He could fix anything, washing machines, driers, anything.”
After the couple moved to New Bern in 2000, George worked as repair contractor across Craven County.
And then, at some point in 2011, says Rodriguez, “that all started to go.”
“He was saying ‘I can’t remember where I put that piece of paper. I can’t remember where I’m supposed to go today, and I didn’t write it down.’ We went through so many different phases.”
The last phase, the one that has left Rodriguez both exhausted and relieved, involved moving her husband to Home Place, an assisted living and memory care facility, 11 days prior to this interview. Much like Maisack, Rodriguez says the choice was taken out of her hands when her husband lost the use of his legs.
“His legs just went right out from under him and he couldn’t get up, and he hasn’t been able to get up since,” she says. “I was literally dragging him around the house. It was inhumane and that’s why I made the decision.”
Back in the early years of his disease, before he was diagnosed in 2012, Rodriguez says she chalked her husband’s problems up to normal, age-related memory loss.
“So when things started slipping, I’d get up in the morning and our kitchen would have 25 or 30 sticky notes all over the wallpaper. And the handwriting was getting bad; I was having a hard time even understanding what they were saying on the notes. I would notice he would put the wrong month, instead of September 3 he’d put August 3. I’d look at the note and say, ‘George, August 3 was a month ago.’”
Once a stickler about his hygiene, Rodriguez says she noticed George was going days without brushing his teeth or changing his underwear. She recalls that, during a party at their home, he left the house to go sit on a neighbor’s dock.
“This was someone he had worked for. He told them he just didn’t understand what was going on, he was forgetting everything, he couldn’t remember how to do simple things.”
Those early symptoms seem almost quaint compared to the daily trauma that Rodriguez suffered through several years after George’s diagnosis. By 2014 her husband had become a man trapped in his own mind, with little interest in his old passions.
“Everything that he cared about — he used to read for hours, science magazines and Popular Mechanics and Time magazine, he always kept up with what was going on in the world — it all started slipping away,” she remembers. “He’d read on a couple of pages and then you’d just see him sitting there staring into space.”
Two years ago, says Rodriguez, her husband found a new hobby.
“He’ll sit and color in the adult coloring books,” she says. ‘That became his life, coloring and watching television.”
Around this time her husband also become incontinent.
“I was getting up in the middle of the night and changing sheets,” Rodriguez recalls. “You do that and you try to go back to sleep and you can’t. And then you get up in the morning and the sheets are wet again.”
Rodriguez says the stress of caring for her husband took its toll on her physical health.
“I lost 20 pounds due to stress. My clothes were falling off me; that was the only good that came out of the whole thing,” she jokes.
Alzheimer’s also robbed Rodriguez of a clear understanding of her own identity, she says.
“You lose your sense of who you are. What kind of a person am I? Am I a good person, a bad person, a caring person, a non-caring person. What should I do, what shouldn’t I do. Should I get the car washed or should I go to the grocery store? I have to call the insurance agency, I have to call the drug store.”
Since placing her husband in a care facility, Rodriguez says her initial feelings of guilt have given way to a sense that “I can breath again.”
“You do what you think is best but in the meantime you are exhausted beyond understanding,” she admits. “It’s just now, 11 days that he’s in there, and I’m just starting to feel like a person again.
“It’s almost like you’re on a train or roller coaster and you can’t get off, it just goes around in circles and spins and spins and you’re trying to do everything humanly possible.”
Rodriguez credits her family, including her children and step children, with providing crucial support over the last six years.
“Everybody loved George, he didn’t have an enemy. My mother used to joke, I’d ask her if she had to make a choice between me and George who would she take? ‘Well, George of course,’ she’d say. He was just that kind of person.”
Despite her husband’s disease, that essential goodness that drew her to him 25 years ago has remained, says Rodriguez. But the man who once obsessed over wires and motors, who “raised my two children as his own,” is gone she admits.
“He’ll fixate on something on the wall, a speck of dirt or bug. He gets up out of his chair to investigate and falls down; he forgets that he can’t walk. And he’ll sit there like a little child, like ‘I’m sad I can’t get that off the floor.’ He’s very childlike now, very childlike.”
“It’s too much, really”
For each of the women in this story, coming to terms with the loss of their husbands, both physically and mentally, has been a slow, often painful process. What they’ve learned along the way is that love offers little defense against the battering ram of life’s cruelest moments. And that the world, however improbably, goes on.
“It doesn’t have to be the end of your life, it’s just part of the journey,” says Brinson. “If you love someone enough and you believe in your marriage vows then this is just something that you have to accept and deal with.
“You have to learn to go with the flow, and that’s so trite, but that’s the way is. Don’t panic, just take it as it comes.”
Maisack urges caregivers to look after their own health as well.
“There is a safety factor for the caregiver that has to be considered,” she stresses. “The person who has Alzheimer’s is going to die; there’s nothing really that’s going to help them, really. They’re going downhill all the time. The caregiver is very important, but for the average person it’s a lot, it’s too much really.”
Rodriguez says she has struggled with well meaning but misguided friends who simply have no way of understanding what she’s been through.
“Don’t listen to everyone else’s story because there are no two situations alike,” she says. “Just like everybody is different, everybody’s brain is different. When they say ‘My uncle Jack had it and aunt Susie had to do this, that and the other thing,’ it is not comforting, because it is not your situation. In fact it’s irritating. Unless you live it you have no idea.”
For Rodriguez, a measure of peace has come through surrounding herself with others who have lost their loved ones to Alzheimer’s disease.
“Learn as much as you can about the disease,” she offers. “And say a lot of prayers.”