Wednesday, 23 January 2013

Caregiver Wednesdays--Why am I a Caregiver--pt.2

            Taken on our thirtieth anniversary, two months before Bill died

Have you ever looked at a beautiful clear sky, and noticed one wispy white cloud? The next day is a violent storm, and looking back, you realise it started with the innocent cloud.

Have you ever had that happen in life?

It started with a phone call.

I was visiting my sister in Winnipeg, when my husband called. Casually in conversation, he mentioned he'd been to the doctor. He'd had some shortness of breath, which was not unusual for him as a chronic asthmatic. However, the puffers weren't helping, so he checked it out. A leaky heart valve.

What did that mean?

Not much apparently. Medications, blood tests, a cardiologist appointment. Nothing that couldn't be managed.

For several years, the situation remained stable.The changes were so subtle that they became the new normal before we realised they were changes.

One of our frustrations was a GP and a cardiologist that didn't communicate. Through much prayer, a miracle and the intervention of a friend, we were able to get in with a wonderful GP at the same local hospital as the cardiologist. He was willing to talk with us and answer questions. Even the hard ones, like "What is this called?" and "What's the prognosis?"

It was called idopathic cardiac myopothy. Idopathic because they didn't know why Bill's heart had grown to several times normal size, and was now floppy and inefficient at doing what hearts do. (The doctor said the idopathic part meant, "It's because the doctors are idiots.")

The prognosis was death, without a heart transplant.

That was the point at which I became his caregiver. I worked full time, and he went on disability. Stability was a thing of the past, and it seemed that every few weeks we had a crisis. Hospital stays, new symptoms, appointments, appointments, appointments. The caregiver role is especially tricky when you have another role as well. I was still his wife, and trying to get answers and make decisions and get him to agree was a struggle.

Because his heart wasn't pumping well, it affected all of his organs. His kidneys began to fail, and his skin developed purple welts that required dressings. The most frightening for me was when the blood would not pump to his brain efficiently, causing dementia-like symptoms. Once, he phoned me at work. I was surprised to hear from him, as he was supposed to be in surgery at the time he called. I discovered that the surgery had been bumped, but he accused me of conspiring with the doctors to keep him in the hospital. He said he was going to leave the hospital and sit in the subway tunnel in his hospital gown. In a panic, I phoned my daughter, who was able to reason with him. He did come home from the hospital that day, but had forgotten about his conspiracy theory when he got home.

Another time, the visiting nurse phoned me at work, saying that he was close to cardiac failure, but had refused to go to allow her to phone an ambulance. (He hated hospitals by that time) I rushed home from work, and my daughter and her two-month-old baby met me at the station. I knew his response would be softened with the baby there. I told him as gently but firmly as I could what we needed to do. Somehow, we got him up the stairs and into the car. That was his last time at home.

Two weeks, five surgeries, fervent prayers and no new heart later, he died.

As I walked this difficult journey, I was helped by many people who emailed me, telling me they were praying for me, and encouraging me. Every night, after a full day of work and time at the hospital, I would open my email and be encouraged. I began to realise the encouragement wasn't reaching Bill, who was spending long days alone. I printed off all the emails and made a scrapbook that I took to the hospital each night. He was stunned by the support and love. We heard from people we hadn't talked to in 30 years! Knowing others who loved us were holding us up made it possible to continue the journey another day.

This time grew in me a compassion for family caregivers. It's a difficult road, with potholes everywhere.

Don't try to walk it alone.

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