When Mike’s wife Pam was diagnosed with a rare type of breast cancer at age 50, the pair was thrown into uncharted waters. For Mike, a busy tech executive and devoted husband of 30 years, the diagnosis left him feeling bewildered and ill-equipped to be a caregiver.
“My wife and I are both very capable people, so this change was something completely out of the ordinary and very hard to manage,” said Mike. “By nature, I’m not really the caregiver type, so I felt very alone and unable to support my wife. The attention to detail that’s required, dealing with meds, organizing things – none of this comes natural to me. To watch Pam go from being able to handle anything and do so much to not being able to do much of anything after a treatment was hard to grasp. I had a hard time recognizing what she needed, or even what I needed, so I ended up not doing a very good job of taking care of either of us.”
The couple’s two kids in their 20s live close by, but their own busy lives, along with the stress of their mom having cancer, put limits on how much Mike and Pam felt they could lean on them for support in the situation. Inevitably, the early days were fraught with apprehension and stress.
“After recovering from surgery (a lumpectomy), Pam began chemotherapy treatments. After the initial treatment, they sent her home with just Tylenol for the pain. The side effects of the chemotherapy drugs, along with the immune boosters, caused pain and sickness unlike anything she had experienced before. The bone pain she was experiencing was more than we knew how to handle … it was brutal. If it wasn’t for her sister coming to stay and help during the first chemo treatment, I don’t know how I would have coped or been able to figure out what to do,” said Mike.
Wellspring Supports Caregivers
As Pam wrapped up treatment, Mike’s unsettling emotions were taking a toll on him, and he decided to take a brief leave from work.
“I constantly felt guilt and shame, not knowing what I ‘should’ be doing, and feeling like no matter what I did, I would be letting someone down or be judged for what I did or did not do. I was often frozen, where I could not do anything due to being so overwhelmed with everything that was happening,” said Mike.
Meanwhile, Pam immersed in treatment, was finding refuge in the support of Wellspring, and she encouraged Mike to join programs too. Finally, with work on the back burner, he signed up for the COMPASS for the Caregiver program, where he found a safe space for processing his feelings, and was given validation and tools for coping.
“Right from the very start, it was a situation that was meaningful to me. I didn’t have another environment where I felt like I could be myself and say what’s happening inside of me, even the horrible thoughts and feelings that I did not know how to deal with. Friends, family, clergy are there, but they don’t really get it,” he said. “To know that I’m not alone, other people are having similar experiences, allowed me to sort through a lot of those negative feelings, address my needs, and feel better enabled to support my wife as a result.”
Mike was especially moved by The Caregivers Bill of Rights: a declaration of self-care, assertion of agency, willingness to seek help, and acknowledgement of difficult emotions. For Mike, the information resonated, helping to regain balance and restore his center of gravity.
“Caregivers, especially those who do not come by it naturally like myself, are not prepared for what will be expected of them or how to manage those expectations. Balance, if it ever was there, is lost, and so life just feels like driving on ice with bald tires. No ability to speed up, slow down, course correct, or avoid obstacles in my path. Compass gave me the ability to slow down, stop, and get some grip so that I could feel more in control of myself and the situation,” he said.
Now, back on solid ground and with cancer behind them, Mike has boldly offered to share his story, with the hope that other caregivers might benefit.
“It’s hard to see your loved one in a vulnerable state, and it’s even harder if you’re not a caregiver by nature. But this program made a world of difference for me. It made me realize what I needed to do and that I could do it. If my experience helps others find their way to Wellspring sooner, then that matters to me,” he said.
