When Cancer Hits Home — Who Cares for the Caregivers?
It Takes Stamina, Creativity — and Humor — for Patients’ Families to Cope
“When I was being treated for cancer, my room was filled with get well cards and stuffed pink animals,” said 59-year-old Denver cancer survivor Lynda Larsen. “But not one person sent a thank-you note to my husband, Steve, and he endured as much stress as I did.”
The role of cancer caregivers, typically a husband or wife, is often overshadowed by the plight of the cancer survivor. After all, the cancer is in many cases a life-threatening event. But for those who have to hold down a job, take care of the kids and provide assistance to a loved one dealing with chemotherapy, surgery and radiation treatments, the challenge to keep it all together can be overwhelming.
“I’ve spoken to many women whose husbands simply leave them,” said Larsen, who is a fifth-generation breast cancer survivor.
“They can’t handle it and simply give up.”
Larsen’s husband, who owns and manages a Denver-area coffee roasting company, admits it isn’t easy. “I won’t be dishonest. I’d rather have her the way she was,” he said. “But I would never even think of leaving her.”
Larsen was diagnosed with stage three breast cancer in August 2005 and began treatment within days of her diagnosis. She had 14 lymph nodes removed and two radical mastectomies. She was treated with chemotherapy and radiation. “I was pretty far gone,” she said. But she credits her family — especially her husband — for helping her maintain her will to live.
“My husband is absolutely the reason I survived. He is a very positive caregiver. I had a super support system, and that’s critical,” she said.
“But it was an enormous struggle for my husband.”
Steve Larsen agreed. “There’s some nastiness involved in taking care of someone being treated for cancer. The tubes, the lack of mobility, the bodily waste issues all have to be dealt with. But you have to suck it up and do some nasty jobs,” he said.
The strain also took a toll on managing his company, Café Cartago. “There’s a lot of time away from work,” he said. “I was with her in surgery. I took care of her basic needs at home. You have to juggle a lot while providing that care and holding down a job. I run my own company, and I have people looking up to me for leadership and direction. You have to do double duty, and that creates a lot of stress. But it’s not as trying as what Lynda was facing. She’s involved in a life and death situation.”
For the Larsens, providing physical care was one challenge, providing emotional support was equally important.
“The No. 1 thing is to do everything you can to keep spirits up,” said Steve. “I wouldn’t allow Lynda to get into this poor me, why me, death, the C word, what’ll happen to the family when I’m gone attitude. Emotional support is important, and it’s sometimes difficult when you’re running around paying bills and taking care of the business.”
Larsen was particularly concerned about losing her hair during her first chemotherapy session. Steve came up with an idea.
“I didn’t tell her what I was going to do, so it came as a shock when I showed up at her first chemo session completely bald. The shock value of shaving my head added so much levity to the moment that it completely changed the subject matter away from ‘poor me,’ ” he said.
Other cancer survivors interviewed for this article said they tried to downplay the seriousness of their illness and treatments in order to shield their families.
Deb Martin, a 44-year-old manager for Verizon Business in Denver, has survived her cancer since it was first detected in 2001. She has endured a modified radical mastectomy, removal of lymph nodes, chemo and other drug therapies. Two years ago, the cancer metastasized in her liver. A year ago, an MRI revealed brain and bone cancer. She conquered the brain cancer with radiation and is currently receiving treatment for the liver and bone cancer.
“My kids understand I have cancer but not the seriousness of it,” she said. “I try not to let it affect them. They have not really been impacted except to miss breakfast occasionally when I have to leave the house early for treatment.”
Martin said she has handled a lot of the treatments without assistance, preferring not to burden her children and husband, Bill. “I’ve done it mostly without my husband’s help. My mom helps out, but my husband has to go to work. He’s a contract programmer for Verizon, and he can’t get away from his work.”
Sometimes it’s impossible for her to keep the reality hidden.
“They see me hanging over the toilet and throwing up when I have a bad reaction to the medication,” she said. “My kids ask me if I’m OK, but you know what, they’re going with the flow.”
Does a discussion about mortality ever arise?
“We don’t talk about death with my kids. I think about it when I’m alone and what it will mean to them if I’m gone and I sometimes break down, said Martin. “It scares me because I want to be there when they graduate from high school and when they get married. But I’m trying to treat cancer like it’s simply a chronic condition that will never really go away. I still work, chase the kids around, and go to soccer games and scouts.”
The Martins have three preteen children — Kirsten, Sara and Cole. “My two girls cut their hair and donated their pony tails to Locks for Love, which is a support group that makes wigs for kids with cancer,” said Martin. “I told my husband not to cut his hair — his head is not all that attractive,” she said with a chuckle.
Martin said her cancer is “always in the back of my husband’s mind. He’s in a state of denial. We don’t talk about it. I don’t think he’s ready to face it.”
In contrast, the Larsens are not only facing Lynda’s cancer, they are capitalizing on one aspect of the treatment. “We’ve introduced Bald Lady Coffee,” said Lynda. “It’s a means to raise money for cancer organizations and services,” she said.
“I work for a dental supply company, and previously I was a dental hygienist. It’s difficult for me to be cared for. But one of the things I can do for those who care is say, ‘yes,’ I need your help. It’s actually a gift back to them to have them involved and contributing.”
- CDC: 1 in 20 Americans Is Cancer Survivor (abcnews.go.com)
- Ranks of cancer survivors growing fast, CDC says (seattletimes.nwsource.com)