Amy Ruger of Vancouver left her job as a paraeducator to care for Daniel McLane, her boyfriend of eight years. (Photos by Amanda Cowan/The Columbian)Photo Gallery
“How’s your mom?” everyone would ask Christina Keys. She’d put a smile on her face and tell them her mother was fine, but still needed daily care after her stroke.
But no one ever asked how Keys was doing. If they had, they might have found out Keys was dying — maybe even faster than her mother.
“The doctor said, ‘We don’t even think you’re going to live six months. You would be lucky to live six months because your body is literally giving out on you,’ ” Keys said. “And that was from the stress of caregiving.”
Caregivers often describe their role as a labor of love, because that’s just what it is — laborious and loving. It’s somehow both challenging and the most rewarding experience of their lives, they say.
It’s also lonely, even though 1 in 10 Clark County residents are caregivers, according to Area Agency on Aging and Disabilities of Southwest Washington.
That’s why some caregivers have formed tight communities, reaching out to each other for guidance and lending an ear to grievances. Keys tried to fill this need by starting her own nonprofit to support caregivers called Loving Them Forward.
But caregivers also say they want other people to understand what their lives are like and remember that everyone needs care, especially those giving so much of themselves.
Whether it’s holding open the door for the person pushing a wheelchair, mailing a card, giving them a hug, or sending a text wishing them well, many caregivers simply want to be acknowledged, Keys said.
“I think just the biggest thing is we want to be seen,” Keys said. “We are not sharing the whole story with you about what our care journey is like and what it’s really like inside of us.”
The transition
Sometimes, it’s easy to point to a single moment when someone will need care — a stroke, a car crash or a hard fall. Other times, the realization is gradual, after a series of hospital visits or trips to a family member’s disarrayed home.
Amy Ruger used to work as a paraeducator at Mountain View High School in the English Language Learners program, where her mother had worked before her.
But after her boyfriend of eight years was diagnosed with kidney failure, she had to take more and more days off to care for him. Caring for him has become her full-time job as he awaits a new kidney. She spends around five hours four days a week helping him with treatment.
GET HELP
Loving Them Forward has a list of resources for caregivers at lovingthemforward.org/resources/ and can be reached at 360-524-3051.
The Washington State Department of Social and Health Services has resources for finding caregiving support groups at www.dshs.wa.gov/ALTSA/Resources.
A Caring Closet is a Clark County nonprofit that provides gently used medical equipment at no cost to those in need. It is located at 7500 N.E. 16th Ave. Suite 1C in Hazel Dell.
You can learn how to become a paid caregiver on the Washington State Department of Social and Health Services’ website.
In her Vancouver home, Ruger gingerly stepped over the tubes of blood connecting her boyfriend’s arm to a large dialysis machine. She moved with practiced grace as she plugged in bits and bobs on the intimidating machine.
Although she’s happy to care for the man she loves, she misses her old job and the kids she used to teach.
She has plenty of friends and family. Yet she still feels alone sometimes.
“As much as people can kind of sympathize with you, they can’t really understand what it is that you go through,” she said.
Ruger doesn’t get a chance to leave her house very often, so she joined online groups of caregivers.
“If there’s someone in your life who is a caregiver, just check in with them, because it can get lonely. People don’t understand, but sometimes you just want somebody to kind of be there and hold space for you. And just sometimes you just want to go meet a friend for coffee,” she said.
Keys understands that desire. After she started caring for her mom, going to the movies with friends didn’t rest upon whether she had to get up early or if she was interested in the show. She could only leave the house if someone could watch her mother.
Even when she did pay for someone to watch her mother, she’d have her hand pressed to her phone, feeling for a vibration in case her mom needed help.
“There’s a lot of anxiety and depression that comes along with watching somebody you love slowly decline and you are powerless to change that,” she said.
After a while, the invitations stopped. And although Keys understood she had to cancel and could never be fully present in the way she used to, it pained her.
“You feel lost and then you feel ashamed, like you’re doing something wrong,” she said.
She encourages people not to sever their relationships with caregivers, but instead reshape them. Rather than going out, she said, maybe ask to come over to their house and play cards or watch a movie. That reminds them they’re not alone, even though life looks different now.
Spending time with a caregiver may help someone understand what it’s like, she said.
“The fact is, most of us will either need care or have to care for a loved one at some point in our lifetime,” Keys said.
Never a day off
Watching a loved one struggle can be incredibly painful, caregivers say.
Matthew Philbrook’s mom was the person he’d go to when he needed something. So when she began needing help after developing Alzheimer’s disease, it was a difficult transition.
She moved in with him after Philbrook noticed rotting food and reminder notes everywhere in her home. And, although he works as a home care aide for children, nothing could have prepared him for that experience, he said.
“As much training as I had, as much knowledge as I had, as much research as I had done — it didn’t matter when it came to the experience of my own mom,” he said.
Alzheimer’s often comes with behavioral changes and unfounded suspicions about friends and family. Philbrook’s heart broke when his mother, who had cared for him so dearly, would accuse him of lying and stealing.
His mother moved into a memory care facility recently, where she and other residents share sweaters and switch glasses, happily not knowing whose items are whose. But Philbrook still remembers how hard the perpetual challenge of caring for his mother was.
“Any different response from my mom, other than her just generous love from before, was such a shock,” he said. “It was just every day of that. I mean, there wasn’t a day off. I didn’t have days off.”
Carol Simon-Perry knows what it’s like to yearn for a day off. She’s cared for her paraplegic son for eight years. Although she wants to be the one to care for him, she also wishes she could be like other 66-year-olds she sees.
“I want to retire and go on trips, but I can’t because I have to be here. I want to be like the other retirees that can go and come and go as they please, but you can’t,” she said.
Those feelings of despondence and frustration are why many caregivers have joined support groups.
One of those groups meets every Tuesday at the Unitarian Universalist Church of Vancouver. Marilyn Hill, who used to care for her elderly mother, has been part of the group for eight years.
Many in the group, like her, are no longer caregivers. They’re there to help others in the group navigate the process of caregiving. That means sharing tips about medical providers, insurance and strategies.
The group members also help each other through the emotional stages of caregiving, which shifts a person’s mindset and reality, Hill said.
“You can just feel like you’re the only one, and that’s not true at all. There are all kinds of lovely, wonderful people who want to help you through it,” she said.
If caregivers are overwhelmed by their responsibilities and feel alone, Hill recommends reaching out to a support group like hers.
“There’s a group of people that are on your side, that have your back,” Hill said.
Another hand
Loving Them Forward gives caregivers a chance to talk to other caregivers, not only to share resources but their stories, Keys said.
“Myself and other caregivers have gone through many points where we’ve been emotionally mentally, spiritually, financially and physically bankrupt,” Keys said. “It’s just part of the road of caregiving.”
The Loving Them Forward website also has a master list of services that includes dog walking, adult day care and financial support. (Some caregivers are paid by the state, but others face the financial burden alone.)
The nonprofit holds events where caregivers can be celebrated and receive care, such as food and massages.
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Keys now works for a similar service called caregiving.com, which shares caregivers’ stories and advocates for caregivers on a national level. Having someone help caregivers navigate resources can lift a heavy weight off their shoulders, she said.
“Because that’s the thing that led me to be in that place of fear, of being told I had six months to live. I was thinking I had to do it all on my own,” she said.
Although caregiving can be one of the most difficult life changes a person can experience, it’s also rewarding, Keys said. In a way, she saw her mother become even stronger in her wheelchair than on her feet, she said. Keys changed too.
“I became a stronger woman myself,” she said. “For any caregivers that are out there, they just need to know that there are like 53 million of us out there trying to do the same thing.”
Being a caregiver was one of the most amazing honors she’s ever had, she said. And when the care someone gives away is replaced by care from others, the experience can be so much less daunting, she said.
“It’s a tough journey, but it’s a beautiful journey,” she said.
This story was made possible by Community Funded Journalism, a project from The Columbian and the Local Media Foundation. Top donors include the Ed and Dollie Lynch Fund, Patricia, David and Jacob Nierenberg, Connie and Lee Kearney, Steve and Jan Oliva, The Cowlitz Tribal Foundation and the Mason E. Nolan Charitable Fund. The Columbian controls all content. For more information, visit columbian.com/cfj.
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