Community Spotlight: Benevilla National Caregivers Month

Written a while ago, but now posting it. The non-profit I volunteer for, Benevilla, is a support network for dementia and Alzheimer's patients, as well as their family members and caregivers. I wrote a series a few months ago for National Caregivers Month, when Benevilla featured a different family who participates in the organization's programs and services.

The articles could feature an adult taking care of a parent, a spouse acting as caregiver, or a grandparent acting as caregiver to their grandchild. This first article was quite a story. It was an honor to help this man tell it.

In appreciation of National Caregivers Month, Benevilla chose a different member of the community each week in November highlighting the enduring devotion and love of caregivers around the world. The support these caregivers show their loved ones is an example to all that with a little help, family members with various conditions can live rich, happy lives surrounded by those they love.

John S. loves his wife, Janelle, with a passion. After years together, they had been through so much, and their love just grew deeper. But after a number of life-changing tragedies, one after the other, John made the decision to stand by that love, showing just how much family really meant in his heart.

It began when Janelle began having back pain in bed while she was sleeping. It got worse for a couple of months, and when the doctor’s antibiotics didn't work, she went to the urgent care clinic for a CAT scan.

“She got the call to come back to the clinic right now… and bring your husband,” John said. “The scan had found cancerous tumors. That was quite a day.”

The next step for the couple was to work on the cancer diagnosis with the physician, to figure out what kind of cancer it was, and what their options were.

Meanwhile, Doris, Janelle’s mother, was also a large part of their lives. While Janelle was going through chemotherapy treatments, Doris fell and broke her leg. Soon she moved into an assisted living facility, where John and Janelle visited her a few times a day.

“Up to that point, Doris had been pretty independent,” John said. “But when she had her accident, not only did she break her leg, but now she had to move. Then we had to manage her old apartment, all while battling this cancer. It was pretty hectic for a while.”

John said when Doris was in the assisted living facility, they noticed everyone there wore Depends, because when someone needed help to go use the restroom, the staff didn't always respond in time.

“After that, we decided assisted living was not a great option for us,” he said. “And there wasn't really room at our place. But Janelle had the idea that we rent a place together. So we did. It was the three of us, going through that process together.”

And so the routine went, four months of chemotherapy, every third week of the month, leaving Janelle’s body to heal in between, as well as battle the nausea and side effects. At the same time, Janelle’s mother, Doris, lived with them, needing help to get around. They also had help from family, like from a daughter in Tucson.

“There was an awful period after the first of six chemo rounds,” John said. “ We were waiting to give the chemo a chance to work, and give her body a chance to recover. We had another scan, and later the doctor came back in, visibly affected by the news he had to give. He said, ‘I’m sorry, the cancer is still there, still an issue. You’re going to have to do more, and I’m not going to be able to help with that.’”

They soon turned to a lymphoma specialist at the University of Arizona in Tucson, as well as visiting a clinic in Houston. They spent four months there in an apartment with Doris.

In December 2011, Janelle passed away.

“After the funeral services, it was just Dory and I,” John said.

And as time went on, John grew more aware something was different with Doris. Later testing showed extreme challenges in executive functions in “command naming,” such as remembering the names of different items, as well as changes in her short-term memory.

Doris had developed dementia.

“She was pretty functional until then, but one day, she turned to me and said she didn't know how to turn on the cold water,” John said. “That was the real jolt.”

John called around and got help from the day program at Benevilla, which gave him more time every weekday to run errands, while making sure Doris was still cared for.

John said Doris’ dementia came with many challenges, to the point where she once grew sick, then forgot she was sick, and did not mention the problem to John. She grew worse, and soon was admitted into the Emergency Room for observation.

“If you have no short-term memory, and your pattern is changed, you don’t know the difference,” he said. “Everything is new.”

Over time, Doris’ dementia grew worse.

“She got quiet,” John said. “She didn't want to talk or read or watch TV. She just really regressed a great deal.”

Doris could no longer go to the bathroom at night, for fear of her falling. So John installed a remote doorbell in his own room, with the remote to set the doorbell off in the shirt pocket of Doris’ pajamas. After a while, this also seriously drained John’s energy and sleep.

John found her a placement in a group home, where they can help her with whatever she needs around the clock. But when a person with dementia changes homes, it can be very rough on them, he said.

“But she still knows who I am, and I still take her out every week for her hair appointment,” he said.

John said when he found Doris had dementia, and she got involved in the Benevilla day program, the pair truly found a great support with the groups.

In Doris’ case, she has progressed through the stages of dementia quickly, while for others, the process can take years.

“I found many have been caring for their spouse or loved one for years,” he said. “I couldn't help thinking, is this going to be my life? What will become of me? I was very concerned.”

But he said no matter what the question or concern a caregiver may have, Benevilla groups can help you find answers. He said they taught him about Care Pro, which provides training and discussions focused on the caregiver.

“Caregivers can suffer from major stress, shorter life expectancy, and reduced ability to care for the person you care so much about. It’s a huge demand, being a caregiver. This person you care about, it’s a 24-hour-a-day job, but they’re less and less present. If they get up at 3 a.m. and light the stove and put a pot on and go back to bed, you've got to be ready.”

John said back when Doris was not yet diagnosed, it was still obvious that something was wrong, but he still tried whatever he could to help her get better.

“But now I know, she’s not going to get better,” he said. “The hard news is, it’s a one-way street… you get worse and worse. Sometimes you take a step forward; they speak better or have better memory, but then another step back. The recovery seems to never be all the way back to where it was before.”

John said it does get frustrating, going through so much in such a short time.

“It’s just the two of us, after Janelle,” he said. “And now she’s almost not present. It’s called anticipatory grief: you know where this is going, but you have no one to talk to or vent to about what you are going through.”

But that is why John feels the support group at Benevilla is so important. A caregiver may be facing a very tough time, but the person next to you is facing huge challenges, as well, he said.

 What pushes John through these tough times? He says it’s the sense of doing the right thing.

“You don’t want to leave any unfulfilled needs,” he said. “You want to, you MUST, do the best you can for that person, leave no regrets. If you lose a parent, and there are unresolved issues, are you going to carry those around for the rest of your life? Or are you going to address them now? My wife and I had decided we were going to do all we can. That’s how we've done that. …That’s how I've done that.”

Dementia in a family member is a life-changing experience, for all involved, but John wants everyone to know that if it happens in your family, you don’t have to go through it alone.

“Connect with others who are doing this,” he said. “There are different support groups for different stages, whatever spot you’re in. That’s huge. Have a sense for what’s coming, and how to handle it. There are a handful of certain behaviors people with dementia often show… You need to know how to handle it.”