POWAY -- Charles and Linda Brettel have filled their home with memorabilia from their 28-year-old marriage: lamps, mirrors, sculptures, clocks and photos of their children. But perhaps the most significant item is the one they didn't want: Charles Brettel's motorized wheelchair.

The wheelchair gives him mobility, but it's also a reminder of his limitations since he became unable to walk. Since then, the Poway couple have had to learn how to live together all over again.

Linda Brettel added to her roles as wife and mother the title of caregiver. Things that they took for granted, such as going out to see friends, became exhausting ordeals robbed of much of their joy. And they learned that society isn't set up to accommodate couples with one able and one disabled partner.

"Nobody, unless they're in this situation -- they just don't have a clue," Charles said. "Even your friends, they just don't understand the day-to-day battles."

Things are better for the Brettels now. While Charles' physical condition hasn't improved, they've got more help. A home health service agency visits them regularly. The Brettels have more time to spend together as a couple, not as caregiver and patient.

"Once we started to get home health care, Joanne (Hann, a social worker), at least she understood what Linda was going through being the primary caregiver, and she understood what I was going through," Charles said.

Two lives disrupted

A former salesman, Charles liked to have his time alone after work.

"I used to tell my wife, 'I want to pull in the driveway, walk in the front door, pick up a beer, walk out the back door, and I don't want to talk to anyone for a while,'" Charles said, smiling at the memory.

"I'd been talking to people all day, half of it lies, half of it truths, trying to remember which part I'm going to have to remember for who, and I just needed some de-stress time. Then I'd watch the news, eat pretzels with my daughter, whatever."

That unremarkable routine changed after Charles had a series of back surgeries. His legs became weak, then he became unable to walk or stand at all. He became incontinent and had seizures. Linda's workload increased by the need to care for her husband. That was about two years ago.

Charles' paralysis also ended the Brettels' well-honed practice of dividing holiday tasks between them. Suddenly, Linda had to do everything: cook the turkey, prepare the house, care for Charles and work.

"The holidays are the hardest time," Linda said, shaking her head and ticking off the problems with her fingers. "You've got everybody coming, you've got the kids, I'm still working -- and suddenly he is out of commission."

And even after the holidays, there was no letup. The guests were gone, but the constant demands of Charles' disability continued.

"It was over and over again -- the seizures -- we were just begging for help," Linda said, closing her eyes. "They kept medicating him. I couldn't keep him dry, and he developed bedsores … where do you go to get those disposable things, who do you ask? It just was nonstop."

Comments from well-meaning friends sometimes didn't help.

"I have a friend of mine who says, 'You're a great example to the Christian community,'" Charles said. "I said, 'I'm tired of being a great example!' What I want to be, is not having medical problems for a few years, so I can just enjoy being.

"They just don't understand. Once I got into that (customized) wheelchair, I had to spend $20,000 for a van so I can go places."

Their children visit periodically, but they are spread across the country, Charles said. The closest one lives in Los Angeles.

"And you have to understand that they all have their own lives," Linda said.

Help arrives

Overwhelmed, Linda asked for help. She called Sharp Rees-Stealy, which handled their health care. Sharp sent a case manager who looked at their needs -- Linda's as well as Charles' -- found out what services would be covered by Medicare, and put together a team.

"We had a social worker, we had physical therapy, we had nurses," Linda said. "They put a catheter in him, and then it began to roll … the burden was taken off of me."

"I can't praise Sharp enough," Charles said. "Everything we wanted, they did, or tried to do."

Linda put it more starkly.

"By the time Sharp came in, I was ready to lose my mind," she said.

More than anything else, she said, it was the continuous accumulation of tasks and details that she needed help to unravel. These details are just what a home health professional is trained to do.

Social worker Hann helped the Brettels find the specially equipped van that now carries Charles' wheelchair, for example, after Linda dropped Charles in the parking lot.

"I was lifting him myself," Linda said. "He couldn't walk. We didn't know about transfer boards. We didn't know all about that stuff."

"Everything we learned about came from Sharp's people," Charles said.

They also got help fighting bogus billing, a perennial plague to those who have large health care expenses. Charles' insurance was paid through Medicare, but that didn't stop some providers from demanding more money.

"When we got a case manager, she would whip these people into shape," Charles said. "It turned out they were billing the wrong code."

The nurses and other home health professionals also gave the Brettels a new social routine, one that provided the couple fresh faces to talk to and an uplifting attitude.

"I had a nurse named Herman, and Herman is like sunshine when he walks into a room," Charles said. "No matter what kind of a day it is, Herman is always up, optimistic, and that meant a lot to me.

"We bonded very quickly. For one thing, I would always watch sports, and he knew the games, the scores, everything that was going on. Then we would have conversations about the games and what we felt was going to happen. And it turns out that Herman, although he was born in the Philippines, he spent a lot of time in Canada, and he gets real excited over hockey … he also shared my excitement over the Chargers. Over that, he was always just very professional about what he did."

That human touch extended to impromptu marriage counseling.

"We're like every couple, we have fights," Linda said. "I'm under stress. The physical therapist set us down and said, 'This is what's going on. This is how you're feeling, and this is how you're feeling, and here are some solutions. And that was wonderful."

What friends should know

The most important thing people can do when a friend becomes disabled is just to remain friends, Linda said. Extravagant gestures that create a sense of obligation or add responsibilities to the recipient are a bad idea. Check with the recipient first.

"Don't cook meals," Linda said. "Please don't cook meals."

"I'm so picky about my own food that my own wife doesn't usually cook for me," Charles agreed. "I'm just particular, and I cook because I want it cooked the way I want it."

"There were days Chuck didn't eat, couldn't eat because of the medication," Linda said. "He's lost 50 pounds since this whole thing started. I work often 10-hour days, because I work second shift. I'm usually at work, so the food sits. There are only two of us."

"People will say, 'Can I take him to the doctor?' And I say no, because he needs to be with me. We need to be with each other. You go through this together," Linda said.

When one partner becomes disabled, socializing with others changes dramatically, Linda said. Everything depends on accessibility.

"There are no groups that I know of where one partner is physically able and one isn't, because it changes your whole relationship," Linda said.

"I have asked, and asked, and asked, 'Where is there a group where we can go and have social interaction?' " she said. "How many homes are made for a wheelchair? Chuck and I cannot go out to our friends' house like we used to. We can go out to dinner."

If any such groups are available, Linda said, she'd like to find out.

Contact staff writer Bradley J. Fikes at (760) 739-6641 or bfikes@nctimes.com. Comment at nctimes.com.