To Have And Have Not Julia Mitric Friday, May 9, 2014 &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;nbsp; Rick Rayburn remembers when the feeling of vertigo first swept over him. “It was in the hospital - Marianne’s third hospital,” Rick recalls. “All of a sudden, I had to put my hand on the wall because I felt off - the motion is uncomfortable, like being on a boat and just getting sea sick.” Two years ago, Marianne Rayburn, Rick’s wife, contracted a rare, viral brain infection - herpes encephalitis. She ended up in the hospital, in a coma. Then another hospital. Then a third. Laurel, Kelly and Marty, the couples’ adult children, kept vigil by their mother’s hospital bed, alongside their father. It wasn’t clear if Marianne would survive. Marianne did survive the encephalitis. Her family felt great relief and gratitude. But her homecoming opened a new chapter of uncertainty. Photo Slideshow View photo album on flickr. Rick, Kelly, Marty and Laurel observed gradual changes in Marianne’s behavior even before the encephalitis. Rick says it began with small signs over a period of about two years. Marianne would forget social plans, repeat questions. Rick and Marianne’s daughter Laurel recalls watching her mother sort silverware from dishwasher to drawer, abandoning the task halfway through. Then she’d start folding laundry and lose focus after a short while. As Rick and his adult children compared notes, they confronted a growing awareness: Marianne’s cognitive deficits were not a normal part of aging. Finally, after numerous screening tests, neurologists determined Marianne had young onset dementia. Take preexisting dementia. Add a virus that can potentially cause dementia and that also ravages the same part of the brain as Alzheimer’s disease. No one could predict how this mix would play out in Marianne’s case. But the Rayburns’ neurologist, Dr. John Schafer, says it’s likely encephalitis accelerated the progress of Marianne’s dementia by at least five years. ONE HUNDRED PERCENT Rick greets me at the door of his ranch-style Sacramento home with a vigorous handshake. At sixty-seven years, he’s still a great bear of a man - energetic and laid-back at the same time. Marianne, three years younger, has a kind face with smiling eyes. Whether she’s talking with family or meeting a stranger, she’s attentive. She peppers the conversation with affirming comments. In the living room, Rick shows me one of their favorite works of art - a pastel landscape depicting the wetlands of Alameda, California from the early 1920s. Ecology is Rick’s passion. Before retirement he was Chief of Natural Resources for California State Parks. During my first visit I ask Marianne to “tell me about this gentleman” - gesturing toward Rick. Marianne: This is Mr. Richard Rayburn - this is a fairly new home for him. Is that right? Three or four years? Rick: Actually, you and I have lived here 28 years. Julia: How do you describe his personality? Marianne: Oh, I’d say that he’s a lot of fun, you know? So we have a good time when we’re together. We tell stories or just talk and get active in the garden. We always find things to do together that are fun for both of us. I appreciate that. Waiting until his wife is out of earshot, Rick defines his role: “I am one hundred percent responsible for Marianne’s care.” Rick’s been on-duty for two years. His breaks are brief and few. Laurel, Marty and Kelly live in Seattle, Chicago and San Francisco, respectively. The family plan entails Rick caring for Marianne at home - for as long as possible. On a tour of their bedroom and bathroom, Rick highlights design changes he made in preparation for Marianne’s hospital release. A series of dining room chairs stretch in a curved path from Marianne’s bed to an open-plan bathroom around the corner. Rick says his makeshift trail is “kind-of ‘Rube Goldberg’ - the nurses probably wouldn’t like it” - but it’s a real boon. Marianne gets up four to five times a night. Over the early months of her recovery, Rick woke up to help her every time. (No nurses.) Severe sleep deprivation caught up with Rick fast; he wasn’t functioning well by day. Now, Marianne steadies herself, gripping the chair backs, maneuvering all the way to the bathroom. And Rick has a shot at sleeping through the night. I ask Marianne what she thinks about the changes at their house. “Oh, it’s fine,” she says politely. “It’s just not home. You know, my home is far away. It’s not exactly the same. But it’s a wonderful place to be with the family, with the children and their children.” WHERE ARE THE KIDS? None of Rick and Marianne’s children has children. Delusional thinking and memory loss are two major facets of Marianne’s dementia. Laurel, the Rayburns’ eldest child, says it manifests in her mother’s constant preoccupation with “the kids.” Over the course of the day, Marianne asks, “Where are the kids? Are they okay? Are they hungry?” Or even, “Where is our baby?” It’s a particularly poignant fixation. Marianne was a teacher who captivated school children for more than 25 years. In her Sacramento school community, she was renown for her talent at inspiring youngsters to fall in love with reading. This morning, as every morning, Rick prepares a hearty breakfast for his wife. Eggs, toast and jam. “We’re trying to keep Mare’s weight up,” Rick explains. He sneaks her pills into a dish of “Tahitian” mashed bananas. He plies Marianne with fruit tart the way a grandmother might coax a child to try one, last tiny bite. Laurel’s in town, so this day stands out from Rick’s interchangeable string of days. About every six weeks she travels from Seattle to Sacramento to spend the weekend with her parents. Rick banters with Marianne and Laurel as the trio plan a day trip to Newcastle, a town in the Sierra Nevada foothills. After breakfast, Rick washes Marianne’s hair in the extra-wide shower stall he put in. He lays her clothes on the bed and helps her dress. They hit a few roadblocks along the way. “Sometimes she says, ‘I don’t know who you are!’” says Rick. “‘What are you doing in here? I’m trying to get dressed. You shouldn’t be in here.’” This is happening more and more. Marianne knows Rick’s family but she doesn’t comprehend they’ve been married 42 years. When Marianne balks, Rick pulls the “walk away” strategy and takes a five-minute break. That often diffuses the tension. Rick says he encounters as many as 25 conflicts on any given day. Most are small, some blow up. He says they’re Marianne’s attempt to maintain a sense of agency, some bit of control over her life. Next, Rick sits Marianne in front of their bathroom mirror. Armed with a straightening iron and brush, he styles her hair. Then, one by one, like a surgical nurse, Rick hands his wife her powder compact, blush and lipstick. Rick makes sure Marianne starts her day wearing two matching earrings. “She had a great line this morning,” he tells me. “I was getting Marianne fixed up to go out and she was all done except the earrings. I gave her the earrings and said, ‘Do you want any help putting them on?’ and she said, ‘No, my ears are very cooperative. They just sit there.’ ” Rick’s laughing, occasionally singing, as he navigates their morning rituals. Even now it’s clear the couple have a sweet and teasing rapport. Laurel thinks her parents’ shared humor is partly why they fell in love in the first place. “He was really funny. (And) she’s very quick to smile.” Rick’s humorous sensibility helps preserve his sanity. He texts the kids Marianne’s most memorable lines - like this bit from the previous night’s dinner conversation. “She was asking where my brothers were,” recalls Laurel, smiling. “It was just the three of us, but she always thinks there are going to be a lot of people (at dinner). She said, ‘Well, where are the boys?’ And I said, ‘Well, Kelly’s traveling and Marty’s in Chicago.’ And she said, ‘Ok, but what about ‘BONZO’?’” For a moment, Rick wonders if other people find it “sacrilegious” to joke about your wife’s delusional quirks and dementia mishaps. Then again, Rick says he really doesn’t give a damn. No matter how gregarious Rick can be, there’s simply no way to spin dementia. Its signs and symptoms vary by type and person to person. But the manner in which dementia spreads suffering and loss is indiscriminate and brutal. THE DARK SIDE OF THE CLOCK Rick’s day: Sixteen hours, very little adult conversation. It’s lonely, boring and heartbreaking - sometimes all at once. Marianne’s type of dementia causes her to fixate on a particular question, repeating it over and over. At 8:00, she’ll ask: “What time is it?” Imagine hearing that same question at 8:03, 8:07, 8:11... It’s unnerving and disorienting when your life partner (and contemporary) drifts into delusional thought. And if mornings are a bright spot in the Rayburns’ life together, evenings tend toward the dark side. Rick’s awareness of their social isolation really hits home after dinner. He’s stuck in the house, resentful of the couch and TV - reminders of the monotony of their unwelcome nightly routine. “We’re like an 80-year-old couple now,” says Rick. Rick can’t read or work on his own projects since Marianne’s not capable of joining in or entertaining herself. And if she’s not engaged in an activity or in a conversation tied to the present, she wanders into a delusional realm. Improvising, Rick tapes Sacramento Kings games from the TV. Marianne’s a huge fan. She’s animated while her team plays - keeping score, tracking players up and down the court. If it’s a win for the Kings, Rick keeps the tape in circulation. “Last week we must’ve watched the same Kings game three times!” Rick laughs with exasperation. Evenings are also difficult because that’s when Rick and Marianne most often get into conflict. It’s past 10:00, their bedtime routine is dragging. “It’s when I’m at the end of my rope,” says Rick. Sometimes he loses patience with Marianne and raises his voice. Then “she wants to leave - to get away from me. The best way is to pack up and go home, she doesn’t recognize this as home,” Rick explains sadly. “And what is she packing to take ‘home’? A brooch, a camisole, a pair of socks, nothing real big - then she walks out the door.” Rick’s curious about where Marianne would go next. But he can’t afford to find out. After the encephalitis and complications from a painful nerve inflammation, she’s still at risk of a fall and could hurt herself badly. Rick must restrain Marianne from leaving home. The struggle leaves them both distressed and exhausted. ABSENCE If you ask Rick whether it hurts him that Marianne no longer realizes he’s her husband, he says “No.” Rick clarifies his feelings. He says it is upsetting Marianne can’t grasp the arc of their life together, but not because he lost his place as her husband. What Rick finds crushing is that Marianne no longer finds solace in her own life story. The good, the bad and the ugly - now it’s simply gone. He says he constantly wonders what’s going through Marianne’s mind. “That’s one of the most emotional things - because you don’t know what it is and you just hate to think of someone who was once really brilliant - just so narrow and confused. I get upset when Marianne’s going through pain and she doesn’t call out for help. She deals with it herself, which she never would’ve done before. And I think she thinks she’s all by herself, as if she doesn’t know I’m in the next room, and if she would just call out I could come and help her. She fell a few times...and never once did she call out for help.” For all Marianne’s lost, she is now wholly unaware of what’s missing. There is no such forgetting for Rick. Every morning, the moment his eyes blink open, he says it all comes flooding back. The person who was his wife is gone. In her place, a confused child. RESPITE Witnessing their father’s ceaseless effort, Laurel and her brothers express deep gratitude. “I’m actually not worried about my mom - she’s got a great caregiver,” says Laurel. “I’m worried about my dad. My dad has no one.” Laurel worries about her parents’ involuntary isolation more than any other stressor of caregiving. Rick agrees it’s crucial to get outside and see people living their lives. He keeps a weekly coffee date with a neighbor. It’s a chance to talk about politics, travel - anything but dementia. In addition to her father’s isolation, Laurel wonders if his approach to caregiving may be his downfall. Knowing his personality she’s afraid he may not be capable of going off-duty. She sees his health potentially undermined by the accumulated stress of unending caregiving. Rick tells me his sons, Marty and Kelly, also urge him to make his own health a much bigger priority. Rick knows “caregiver burnout” is a very real concern. So he’s trying to lose weight. He works out at the gym three times a week, but his vertigo has worsened over the past six months. He gets dizzy just walking, let alone stepping onto an elliptical machine. Rick says he knows he needs rest, exercise and healthy food. But to follow that prescription and maintain his mental health, Rick needs several hours away from Marianne every day. And he doesn’t get that. Access to respite care is critical to Rick’s continued caregiving. But, Marianne was suspended from a local adult day care program. After a period of relative calm, she grew agitated and her respite caregivers couldn’t provide the one-on-one care she needed. Then Rick lost his back-up caregiver. She would stay with Marianne at the house for a few hours so Rick could go to the gym. He trained the caregiver for twelve weeks, helping Marianne adapt to a newcomer. And then the caregiver quit. Rick doesn’t complain. He says he’s fortunate to have resources to cover respite care whatsoever. &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;nbsp; He attends a monthly men’s caregiver support group. And he’s noticed most of his peers have no access to respite care. Many simply can’t afford it; others find it hard asking for help. Most of the men’s spouses have dementia, although their conditions vary. The support group is a place where Rick picks up survival tips and cautionary tales. One member of the support group says he had a heart attack after he neglected his own health. Rick hopes the group may have solutions for his current quandary - Marianne’s refusal to let him help her bathe and dress. GROUNDHOG DAY In the morning, when Marianne is eager to head out for a day of teaching, Rick stops her by telling her “It’s Veteran’s Day, Mare - we’ve got the whole day off!” “Yeah,” Rick laughs, “my life is a lot like Groundhog Day.” “You can get depressed when you wake up at 6:30 in the morning and every day is the same. It’s really Groundhog Day at its most mediocre. Your day is like oatmeal. It’s like, ‘Ok, I have to get my wife bathed and showered and pick out the clothes. There’ll be an argument over the clothes. The same argument over the medicine. The same deal. How can I do this seven days a week?’” After brooding for a second, his answer is, “Quit feeling sorry for yourself.” He says he’s lucky he has such strong feelings for Marianne and their three great kids. Rick circles back to the meaning of his new identity. “Well,” he says, “For the rest of your life - your legacy is really going to be about caring for this very special person that needs to be cared for 24 hours a day.” Rick’s to-do list keeps growing. One important item - Marianne’s jewelry box is full of mismatched earrings. He’d like to buy several new pairs for her. &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;nbsp; Looking back at their lives, Rick says it took him a long time to appreciate little things about Marianne, like her good taste in jewelry and clothing. He remembers now how she’d gently steer him away from wearing plaids and stripes. Rick confesses he’s a different person now. “You’ve got to delight in small things.” FEEDING THE DUCKS Back at the breakfast table, Rick serves Marianne steel cut oatmeal with bananas. He tells her their plan for today - they’re heading out to a favorite spot on the American River, packing stale bread to crumble and feed to the ducks. Marianne says she’s game. A few moments later, she tells Rick she's feeling tired. Bewildered, she turns to her husband: Marianne: I look at something like the 'car-ladle thing' and I don't know how to take that into organization, because I don't know what the cars are, and I don't know who has them, and I don't know how we're going to organize that. Rick: Well, you're in luck - because I know that stuff and I like to help with that. Marianne: Then you'd better stick around me! Rick: My main job is to support you in all those things. So we can take care of them. And I've done that before... so it's pretty easy. Marianne: Ok. Thank you. Rick: Should we go and feed the ducks? Marianne: Sure... Is that our next thing to do? Photos by: Andrew Nixon / Capital Public Radio Hear the 5-minute feature from Capital Public Radio's collaboration with NPR.