A prostate cancer diagnosis takes its toll not only on the patient, but on those who care for (and about) him. While patients can have several different sources of support, there is usually one person who becomes the primary caregiver. This person could be a sibling, parent, or close friend, but it’s often a spouse.
When a partner witnesses their loved one suffering and also experiences a shift in the relationship dynamic – where one is now more dependent on the other – it can be an emotionally painful and difficult challenge requiring reserves of courage and strength. In supporting a prostate cancer patient, a caregiver has their own transformative journey with their loved one’s cancer.
Barbara and her husband, Charles,1 navigated Charles’s yearslong prostate cancer journey together, as caregiver and patient. In 2018, he displayed symptoms; in 2019, doctors diagnosed him with stage-four prostate cancer. Charles experienced several years of subsequent chemotherapy and radiation. Unfortunately, he received an unexpected diagnosis of stage-four esophageal cancer and died two weeks later, at age 73.
Looking back on her experience caring for her husband, Barbara said, “I really felt purposeful. I felt like I just was a 100%, 24/7 caregiver. I felt good about what I did. I don’t have any regrets.” But, she added, “from very early on, we shifted from husband and wife to caregiver and patient. So basically, very early on, I lost my husband.”
In November 2018, Charles had cold/flu-like symptoms and began to have eye problems. He was given medication for an eye condition, but his health continued to deteriorate. In March 2019, Barbara took him to the emergency room, where a traveling nurse happened to be working for the day.
After examining him, the nurse ordered a CAT scan and an MRI, which revealed a tumor at the base of his skull. As doctors began to discuss possible treatment options, Charles mentioned that he couldn’t stay much longer because he had an appointment to get his PSA checked.
The doctors decided to check his PSA level then and there. It was abnormally high. Bob’s brain tumor was, in fact, metastatic prostate cancer.
A caregiver’s path during treatment
The couple spent the next four years taking regular trips to the hospital for Charles’s treatment, where the care team was “stellar,” said Barbara. But the process was, of course, exhausting.
During this time, she focused solely on caring for her husband, and other important details fell by the wayside. This is commonplace; caregivers often forgo taking care of themselves. Barbara usually prioritized being impeccably dressed and groomed before leaving the house, but “once he got sick, I would put on an old buttoned-down shirt of his. I wasn’t cutting my hair; I didn’t have on makeup. I didn’t do the things that were important to me. Somebody else may not care about makeup, hair, all that stuff. I cared about it. And let all of it go. Because I had a focus. I was just taking care of my husband.”
“And I was upset. I was just upset all the time,” she added.
Although Charles had been responding to treatment, in 2022 he started telling Barbara, “‘I feel like something’s changed.’
“By late August, early September,” said Barbara, “he started saying things like, ‘I feel like my throat is getting smaller.’” After an esophageal endoscopy, doctors found stage-four esophageal cancer in addition to prostate cancer. Bob died a couple of weeks after the diagnosis.
Coping with the aftermath of loss
After her husband’s death, Barbara felt the full impact of her loss and her years of caregiving.
She was devastated and utterly spent. “I was basically horizontal,” she said. “I was so exhausted when he died, that I literally couldn’t stand or sit up. I was laying down all the time.” So she “called up a lot of friends locally” and asked that they come and simply sit with her for emotional support. It was something “I never have done in my life,” said Barbara. “I’ve never ever asked anybody for help.” The response surprised her—”So many people responded and responded repeatedly. And they would just come and sit here while I lay on the couch crying.” It helped.
Soon, Barbara began grief counseling and joined a bereavement group to cope with her loss. She remained plagued with insomnia, however, so she turned to exercise. “Because I wasn’t sleeping at all, I just thought, okay, I’ve got to calm down,” she said. “So I started back to doing yoga every day. And then as soon as I could do that, I added in walking, and then I started swimming. I was trying to get myself to calm down so I could sleep. Physical activity was a huge, huge first step.”
Eight months after her husband’s death, Barbara said she feels “like I’m building a new life,” but admitted, “I feel a little bit of guilt that I’m building this new life.
“I have good part-time work doing what I love doing,” she continued. “And I have wonderful bosses. And I have a wonderful family, and I have wonderful friends. And I live in a wonderful town. And there’s only one thing missing …”
How things are different now
When asked how her husband’s illness changed her, Barbara chooses to view the experience as “ultimately positive” and is grateful she was able to commit so much time and energy taking care of Charles.
As a caretaker, she took on work traditionally delegated to her husband. “In our relationship, we each had different roles,” she explained. “Some of the roles that he played were roles that I didn’t feel comfortable with, like banking and managing our property. I had to just dive in and take care of it all, figure it out…. I have more confidence [now]. I always felt professionally very confident, but with some of the stuff I’ve had to deal with, I didn’t feel as confident, and now I do. I feel like I’m managing things.”
The most marked difference with her current life, Barbara said, and her biggest challenge, is “I never lived alone. Never. And we were together 50 years. So it was very hard to learn how to live alone.”
A caregiver’s conclusions
When asked what advice she would give to other caregivers, especially spouses, Barbara emphasized the importance of being prepared for the changes that can come with some treatments. For her, it meant a sudden end to sexual activity with her husband, which would be a huge adjustment for any couple. It also meant lapses in Charles’s memory and the loss of some cognitive abilities.
“The memory just was leaving him,” Barbara said. At first, I tended to be like, ‘Did you not realize that I said that?’ And after a while, he was like, ‘Could you stop doing that?’ So anytime any of those memory-loss things happened, I didn’t ever mention it to him. But that only makes it more clear who’s caregiving and who’s the patient.”
She also emphasized how important it is that caregivers continue their self-care activities. She’d thought it was simply a cliché, that caregivers neglect caring for themselves. Then she realized that, while she assumed she was OK during Charles’s illness, she was not. After his death, “I was shocked,” she said. “It wasn’t like I wasn’t doing my nails on a regular basis. I literally wasn’t going to the eye doctor. I wasn’t going to the dentist.” She wasn’t taking care of her own health.
To someone who is hesitant to get screened for prostate cancer, Barbara doesn’t mince words: “Would you like your diagnosis to be stage one, two, three, or four? Which one do you want? And if you prefer to have it be stage four, wait around, don’t get tested.”
Barbara wishes she would have been more informed about prostate cancer screening and screening guidelines early on. She felt that if they had been more educated about the disease, it might have made a difference in their testing decisions early on. Barbara would also remind caregivers that a prostate cancer diagnosis is not a death sentence, especially if it is detected early.
Be proactive about knowing your prostate cancer risk. If you are 40 or older, discuss your family history and screening options with your doctor.
Learn more about
1 Not their real names.