Our friend Stan* lost his wife Julie* after a six-year courageous and exhausting battle that started with a diagnosis of breast cancer.
About a year after Julie’s death, when a group of our friends got together for dinner, Stan talked briefly about the last stage of his wife’s life. He said, “If I had it to do over again, I wouldn’t have allowed it to go so far.”
I wanted to know more, so I asked him if he would be willing to get together with me for a cup of coffee and talk about his caregiving experience.
When we met, Stan opened his heart and shared his feelings about his caregiving journey, and he graciously allowed me to write about our conversation in hope that his experience could help other people who are in the process of losing someone they love.
Stan’s Caregiving Journey Begins
Julie was 60 years old when they were told she had breast cancer. The doctor was confident that she could be treated and that the cancer would be defeated. Stan said, “I assumed I would help her, she would get better, and everything would work out okay.”
The thought of losing her was inconceivable. He confidently told himself, “I can do this! It will take a year – maybe two. She’ll be fine. We’ll still have plenty of time when she’s recovered, and it won’t be a big deal.”
Unfortunately, it didn’t work out that way. Julie went through surgery and chemo, and then in progressive, tiny increments the messages from her doctor became less optimistic. Instead of saying, “We’ve got this!”, he started saying, “We’re going to keep fighting this together, but I think we need one more round of chemo.”
After two-and-half years and five rounds of chemo, Julie was diagnosed with Amyloidosis, a rare disease that was affecting her kidneys. At this point the recommendation was to stop treating the cancer and go after the Amyloidosis. It was a grueling process that involved a stem-cell transplant followed by massive chemotherapy treatments.
Stan slept on the bench in Julie’s hospital room every night for six weeks straight. At this point he started to wonder if she could survive the treatments, let alone the disease. He also acknowledged that their relationship had changed. He said, “The wife I knew and the relationship that we’d had was gone. Not that I wasn’t loving and caring, because I was. But she was gone. Ninety percent of her energy was self-directed into her own survival.”
When Stan took Julie home after she was dismissed from the hospital, it would have made a lot of sense for him to bring in help. However, Julie told him she didn’t want people parading in and out of the house.
Life Before Cancer
Before her illness, Julie was a warm and gracious woman who had a gift for entertaining. Stepping into her home, was like getting embraced in a warm hug or being wrapped up in one of the beautiful quilts she had so painstaking stitched together for family and friends. Julie took tremendous pride in her home and her skills as a hostess. Once she reached the point that she no longer had the emotional or physical energy to put on her “game face” for guests, she rejected the offers of support that came from friends, and the idea of hiring help was out of the question.
Eventually Stan got desperate and asked Julie’s closest, long-time friend to come and stay for a few days. He had hoped that she would offer to take over so he could get a physical, mental and emotional break from his caregiving duties. To his dismay, he discovered that having a guest in the house was more work than help. Once their friend left, Stan completely gave up on the idea of bringing in any kind of help, and he went back to shouldering the entire load alone.
Julie’s Final Instructions
One morning shortly before Julie died, she managed to step outside of her own needs and think about what Stan’s life was going to be like after she died. She asked Stan to go get a pen and a piece of paper so he could make a list. She said, “I’m not going to be around long, and I know you’re going to do all of these things once I’m gone, but I’d feel better if we made the list together now and you had it down on paper.”
He pulled a chair up next to her bedside and said, “What do you want me to do?”
Julia said, “You’ve been wanting a new car. In February, after you’ve paid all of my medical bills and burial expenses and you know where you are financially, you should buy it.”
She went on to list the projects around the house that needed to be completed. She suggested activities he should do with the kids and grandkids. And then she said, “Stan, I want you to go on living after I die. If you meet someone and you have a chance to not be sad and lonely the last twenty years of your life and you don’t take advantage of the opportunity, I will be really, really pissed.”
Stan’s New “Fake” Life
Stan said his new “fake life” began the day after Julie died. When I asked him to explain what he meant by that, he said, “We’d been married for 43 years. Julie wasn’t just my wife – she was my best friend. We loved being together, and for all of my adult life, if I was going to go play with someone – it was her. We had a strong union, and although the last six years weren’t fun, they were filled with purpose.”
He said, “After she was gone, I’d get up in the morning, shower, shave, look at myself in the mirror and ask, ‘What the hell are you going to do today?’ I had to create a new rhythm, a new pattern to my days and weeks. I was starting a new story, but I didn’t have a plot line. I had no sense of direction. I was just living day to day.”
He said he took a lot of tiny, rapid, baby steps. He tried one thing after another. He never knew whether going to the movies, out to dinner with friends, or driving to the beach for the day would be the right thing or wrong thing, but he kept himself active, and week by week he whittled away at projects on Julie’s list.
Reflections on Six Years of Caregiving
When I asked Stan what had been the most difficult part of his caregiving experience, he said, “It was the loss of our relationship. Everything is directed at the care receiver. There’s nothing coming back to the caregiver. We were no longer intimate – emotionally or physically. I was keenly aware of how much I missed that connection, and it took a hell of a lot of self-talk to maintain my energy and keep my own mental and emotional machinery running.”
When I asked what he would have done differently, he said, “I would have brought someone in so I could have gotten at least one good night’s sleep a week.” He proceeded to say he’d always thought of himself as a “man of steel”. He was strong, healthy, and fully capable of going full-bore 12 hours a day. He’d never taken on a project that he hadn’t finished, and he always left things better than he’d found them. But with caregiving, he discovered that even he had limits. Not getting enough sleep wore him out physically, mentally and emotionally.
He added, “I would have taken better care of myself. Since I could only leave her long enough to run to the grocery store, I stopped going to the gym. I gained 25 pounds, and I allowed my own health to suffer. That wasn’t smart.”
He said, “Julie and I tried to do everything on our own, and I now know that was a mistake. I should have talked to someone.” He went on to say that he’d been reluctant to talk about what was happening to everyone who asked, because he didn’t want to become the talk of the town. Then he added, “I would advise other caregivers to find one or two people you can trust and talk to them about whatever you are feeling. I think that could have helped relieve a lot of emotional stress.”
The End of Stan’s Fake Life and the Beginning of a Revised Life Story
Two things helped Stan end his “fake life” and start living again: Julie’s “To-Do List” and seeing a professional grief counselor. Julie had given him six months’ worth of unfinished business to complete. Stan said checking a task off of the list each day kept him centered. He had lots of things to do, but he didn’t have to overcommit himself to a project or a time frame.
Working with a grief counselor helped him open up about his feelings of loss. In the beginning, when he expressed his doubt as to whether he really needed help coping with his grief, the counselor said, “You are a strong, smart man. You will get through your grief. If you come see me on a regular basis, you will get through it more quickly.”
He took her advice. In the beginning he went to counseling once a week. As he moved through the process, they met every other week. About nine months after Julie died, his counselor said, “Ok, Stan, I can see you’re fake life is ending. You’ve started to develop a pattern. It took you six months to get through the list, and now you’re doing things on your own. I think we can go to once a month or once every few months.”
Last spring Stan was introduced to Angela by a mutual friend. Angela is a lovely woman who also lost her husband to cancer. Stan said that starting a new relationship when you’re in your 70s is a lot different than when you’re in your 20s. He has different priorities now and a different strategy for how he’d like to share his life with another person. He doesn’t know if this relationship will lead to marriage, but he does know that he enjoys Angela’s company, and he does not want to spend the last chapter of his life feeling sad and lonely. He’s learning to laugh again. He’s going places, doing fun things, and he’s giving himself permission to feel happy. If he and Angela decide to get married, he knows it will be with Julie’s blessing.
Stan will tell you that being a caregiver was the hardest, longest, and loneliest road he ever walked. He didn’t do everything perfectly, but he did the best he could, and he has no regrets. As he revises what he thought would be the final chapter of his life’s story, he’s learning to let go of the past, enjoy the present, and embrace whatever the future brings.
Elaine K Sanchez is an author, caregiver speaker and co-founder of CaregiverHelp.com, a video-based program that helps family and professional caregivers cope with the emotional stress of caring for those who can no longer care for themselves. She and her husband, Dr. Alex Sanchez, have developed a number of online continuing education courses for mental health professionals. The courses are hosted on PDResources.com.
*Names and identifying details have been changed to protect the privacy of individuals.