For One LCFH Patient, Helping Other Dementia Caretakers is Personal
Despite his Ph.D. in Psychiatry and decades of experience in research and private practice, Robert Derbyshire still struggled when, after nearly 60 years of marriage, his wife started showing signs of dementia.
“I started watching Joan; that’s where I got all my information,” said Robert, who has since written four papers on the subject and is reviewing content for Lower Cape Fear Hospice’s dementia care packet. “I just watched her and she taught me everything. Just like the rest of my life, she taught me everything.”
Robert dropped out of high school in the tenth grade, at age 17, to join the Marine Corps. While home on leave one Christmas, his brother set him up on a blind date with a woman named Joan.
“The first thing after our first date, I knew I was going to marry this girl,” he said. “I’d never met a human being like that.”
In 1948, two years after joining, Robert left the Marine Corps; in September, he and Joan were married. Their parents didn’t want them to marry, Robert said; Joan’s mother worried that her daughter, then 18, was too young.
“My mother said, ‘You don’t want to marry that girl, she’s Catholic. All she’ll want to do is have babies. You’ll never get your education,’” Robert said. “And as soon as Joan finds, and I find, that someone doesn’t want it, that’s when we’re going to do it. So we did. They finally came around.”
At the wedding, Joan overheard her aunt and Robert’s great aunt talking, commenting that their marriage would never last.
“Don’t you dare tell her she can’t do something,” Robert said laughing, 71 years later.
Robert set about getting his G.E.D. and starting college, and he and Joan welcomed their first child on Christmas Eve 1949. Robert was called back into the Marine Corps briefly during the Korean War, before finishing college with a Bachelor’s Degree in Education.
“It was all because of Joan,” he said. “She would type all my papers and correct all my millions of errors.”
Robert taught and worked other jobs, including driving a taxi at one point, before going on to get his Masters and then his Ph.D. in Psychiatry. He taught psychiatry and conducted research at the University level for many years, before leaving in 1972 to go into private practice. He and Joan had a total of five children. In 1997, Robert retired, and the couple moved to Florida.
“I had two good friends in the Marine Corps, who both have died now, but we maintained friendships all the way through,” he said. “One of them said to me, I had dropped out of school and he had one year in college, ‘What are you going to do? You’re not even equipped to drive a truck!’ He came to our 60th wedding anniversary, and he said he that he thought I needed an education, but not as much as I went after!”
In 2003 in Florida, Joan was diagnosed with Dandy Walker Syndrome, a rare congenital disease. In Joan’s case, a small mass in her brain had been present since birth, not growing and only occasionally causing noticeable symptoms that were always explained away. After the diagnosis, doctors put a shunt in Joan’s brain, and for a time it worked.
But gradually, Joan started to have trouble keeping up with her golf score, and the previously great driver began to have difficulty driving.
“I didn’t know it, but the women would not let her drive the golf cart anymore, because she’d get lost,” Robert said.
Doctors eventually replaced the shunt in 2008. Meanwhile, Robert had taken Joan to see a psychiatrist; in 2007, they were told Joan was okay, he said, but in 2008 she was diagnosed with Alzheimer’s. The timing made it hard to tell how many of Joan’s symptoms were attributable to Dandy Walker Syndrome and how many were due to Alzheimer’s, he added.
“I had difficulty with it when she first started to have real problems,” Robert said. “And I’d catch myself yelling at her. I felt terrible about that. At night time I would say, ‘Now stay in bed and wake me up if you want to go to the bathroom.’ She wouldn’t wake me up and she’d fall on the floor, and I’d have to pick her up. And I’d get upset with her because she didn’t wake me up. She didn’t know to wake me up. I didn’t know she didn’t know, but she didn’t know. And it took a while before I finally learned to say, ‘Life will be so much easier if I climb into her space instead of asking her to climb into my space.’ And that worked.”
“Every time I’d take her for a walk, it was a new day for her. She’d point out the same things and how new they were, ‘I’ve never seen this before.’ When I first did it, I thought I should correct her. What good did that do? I’d just join her, and so much more came out of her when I joined her, because she could trust me.”
Robert took care of Joan by himself in Florida for three years after her Alzheimer’s diagnosis. In 2011, the couple moved into Plantation Village senior independent living community north of Wilmington, where he cared for Joan for another four years, before her care necessitated her move to a skilled nursing facility long-term care unit at the Davis Community. Ever the psychiatrist, he wrote four papers about dementia based on his experiences with Joan.
“Just watching her,” Robert said. “The difficulty that we have is to watch without judgement. Because we judge ourselves daily, on what we can do. And when you have someone who is so competent all her life and suddenly is not, it’s hard to get into that space where she’s not competent because she can’t be. Too frequently, it was felt that she’s not competent because she doesn’t want to be. And that’s the space you’ve got to get out of. As soon as I got out of that, I could see more of her, of what she would talk about.”
When Joan first moved to the skilled nursing facility, across the street from Plantation Village where Robert still lived, it was hard, he said.
“Joan would always say, ‘Take me home.’ It was unbearable. We were out there the other day talking and she said, ‘Well, should we go home?’ I said, ‘We are home.’ She said, ‘Oh, okay!’”
During his many years of care giving, with his focus on Joan, Robert said he neglected to care for himself.
“I used to try to talk to my children, I say try, I did. But they didn’t have the understanding of being in that situation,” Robert said. “But taking care of myself, I don’t know that I really did. And that was… I was just getting worn out. I didn’t know that it was necessary. But I didn’t take care of myself, I guess, not until Joan came over here [to the skilled nursing facility].”
Getting help was important for both of them, he said.
“Get help as soon as you possibly can. It’s so difficult for many of us to get help. We live in a culture that supports individuality and ‘I can do it, I can do it.’ And we can’t do it. We can think we can do it, but we can’t. I thought I could go all by myself… And I still believe I can do better than anybody else, but it’s not true!”
Now a Lower Cape Fear Hospice patient himself, Robert is reviewing content for Lower Cape Fear Hospice’s dementia care packet, offering his thoughts as both a psychiatrist and a long-time caretaker for someone with dementia. The dementia care packet offers information, advice and resources to loved ones taking care of someone with dementia.
“One of the things I read in this dementia booklet, it said every 65 seconds a person in this country is diagnosed with Alzheimer’s. Now some people don’t get the diagnosis for three, four, five years, and someone’s taking care of them. Someone brought them there to that psychologist. Someone probably brought them there a year before that. So those folks have been dealing with it long before they meet this or any semblance of this [gesturing to the dementia booklet]. They don’t know where to go and they just think, ‘It’s my job to do it,’ and they do it with anger and disdain, difficulty, great difficulty. Getting rid of my anger about it all was very necessary. Because Joan’s the sweetest girl in the world.”
These days, Robert and Joan live on the same hall in a skilled nursing facility long-term care unit at the Davis Community, separated by just a couple of rooms. Robert sees Joan every day, during meals and events or just sitting in the unit’s living room. Robert receives care from Lower Cape Fear Hospice, after a diagnosis of congestive heart failure.
“She says so many funny things,” he said. “She is the funniest person. That’s the thing I miss most about her, we were very playful with one another… she’s so much fun, and it’s wonderful to have a spouse that’s fun. In my practice, I saw so many spouses that were not having fun. To recognize that what’s a tragedy today is gone tomorrow…”
“Death to me is something that I just see as the last experience of life,” he added. “And it’s one that we’re all going to have to have, and you might as well enjoy it when you go, if you can. But it’s been a great life and I’m happy that Joan is here, she’s happy to be here now. She accepts it, and as long as she accepts it, I can handle it.
“Try not to take life so [dang] seriously. People take the smallest thing and wrap it up and it becomes… and we all have the ability to do that. One of the things that Joan always told me is, ‘There’s always tomorrow.’ She always taught me everything.”