Spouse or Caregiver?

Husband? Wife? Caregiver?

 When we take our vows, “In sickness and in health,” how often do we really consider the implications? There a no guarantees or caveats offered when we marry. A perfectly healthy spouse one day, can become a person who needs constant care the next. Broken bones heal. Heart disease, COPD and Diabetes can often be managed with varying degrees of caregiving and self-care. As partners, we make adjustments and act appropriately. But what happens when you receive the worst kind of news; a diagnosis that basically gives your marriage an expiration date?

When my husband, Steve, was diagnosed with Stage 1A Lung Cancer at 63, we were told that he had the type of Cancer that recurs; that surgery was going to extend his life significantly, but we would need to stay on top of things to nip further occurrences in the bud. No prognosis was given. No promises were made. Over the six years he was sick, we faced five surgeries, countless scans and MRI’s, chemo, radiation, an ablation, collapsed lungs and dementia. It was a difficult time, but through it all, our relationship thrived. I can’t give you an answer as to how I did it, but my role was that of wife (first and foremost) and caregiver by circumstance.

Caregiving came naturally to me. We were together for twenty-six years prior to his diagnosis, and in our relationship, he needed constant reassurance that he was well. Steve was a hypochondriac, and much of my life was spent convincing him that he wasn’t dying. It was an exhausting role for me, but I chose to do it. When he had a motorcycle accident, we knew his injuries would heal; he returned home after two surgeries and I took on the role of nurse. I’d come home from work on my lunch break change his dressings. The wound was “powerfully ugly” but nothing fazed me. This was temporary. When he was hospitalized with Diverticulosis, our bedroom became a sterile hospital room. Again, it was temporary. He was diagnosed with Cancer when he was rushed to the emergency room with severe stomach pains. The initial diagnosis was appendicitis, but the surgeon did a CT scan that was aimed a little high, and as they reviewed the film and found a perforated diverticulum; they also spotted a tumor on his lung that they would never have seen if the camera had been properly placed. Well they took care of the first problem, which had become Peritonitis, and waited until he had healed to give us the bad news.

Two years later, Steve’s mother was diagnosed with Lymphoma when she was eighty-nine. She came to live with us and it may sound odd, but my having to care for his mother reinforced my standing as a wife. He knew I was doing all of this out of love for him; I wouldn’t have had it any other way. He saw it as confirmation of our partnership. My stock as his wife went up every time I tackled something new, which as a caregiver was pretty much daily.

A comment on our website that “A spouse is a partner…a two-way relationship…physically, mentally, spiritually, emotionally, sexually and financially. A caregiver is closer to a one-way relationship. The give and take is now unbalanced.” Others wrote there was little difference, because they were caregivers out of love; that they do what they have to do because of love. One gentleman cracked me up writing, “When you’re a spouse, you ask ‘How do I get her into bed?’ The caregiver asks, ‘How do I get her out of bed?”

Steve has been gone for three years now and my heart is full, knowing I did everything I could to make him happy and comfortable. In the last weeks of his life, he developed dementia—that was something I knew I couldn’t handle alone. I called on the woman who had been his mother’s companion during her last days. This made him feel secure and allowed him to give me something I needed.

As his wife, for the six years following the Cancer diagnosis, I was preparing myself to be his widow. At least I was getting ready to accept the fact that it was a distinct possibility. He never knew about that. One of the worst trials I faced was that of having to envision what my life would be like without him. There were so many things we shared, but there was no way I could share my feelings about this with him. It was the healthy thing for me to do. As a caregiver I was beginning to think of how I’d fill the hole that would exist once I no longer was caring for him.

Preparing myself to be without him has not lessened the grief or sadness I feel daily. What it did do was help me see there would be a life without him. I knew that what I anticipated and what would actually occur might be very different, but “feeling” prepared allowed me to feel safe. I had taken care of him. I had cared for his mother. I had even managed to care for myself—the small things like check-ups, flu shots, dental appointments and keeping in touch with friends. My life since Steve is gone has been challenging, but I just need to look back on all I’ve already done as a caregiver to know I can do almost anything.