How I’m Coping with the Grief of Chronic Illness

When I was about eight years old, I had Scarlet Fever. I remember being in bed for days and the health department putting a huge QUARANTINED sign in front of our house. Scarlet Fever damaged my heart and I developed a murmur. As the years passed, the leaking valve became worse, and two more valves began to leak.

A few months ago, I became extremely short of breath. Then I started having rapid heartbeats (atrial fibrillation). Three trips to the emergency department of the local hospital confirmed my erratic, racing heartbests. After some tests, I was admitted to the hospital and had a cardiac conversion procedure to restore my heart to its normal rhythm.

“You’re in heart failure,” a cardiologist explained. Subsequent reports from my health care team said I was in acute heart failure, three words I didn’t want to see.

In a few weeks I meet with a heart valve specialist. My hunch is that he will recommend surgery. Would I survive an operation? I’m my disabled husband’s caregiver. Who would care for him if I died? Though I’m grieving for the diagnosis of chronic illness, I’m taking proactive steps.

I’m following doctors’ orders. Donna M. White writes about responding to the diagnosis of chronic illness in her article, “Tips for Coping with Chronic Illness,” posted on the Psych Central website. Her first tip is to get involved with treatment and I did this instinctively. This involves getting checkups, a diet with no caffeine, very low salt, weighing myself at the same time each day, and keeping a weight log.

I’m learning more about heart disease. “The Mayo Clinic Health Letter,” in an article titled “Living with Heart Failure,” says keeping risk factors under control with medication and lifestyle changes can help patients maintain a good quality of life, slow the progression of heart failure, and prolong life.

I’ve hired extra help. Each morning, a paid caregiver comes for two hours to get my husband up for the day. I just hired evening help to assist me with getting my husband ready for bed. The paid caregivers also do light cleaning. Every two weeks a professional cleaning person comes to our home.

I’m updating past research. Five years ago, we researched assisted living communities, and two appealed to us. We put our names on their lists and paid deposits. The one community that seemed to be a good fit, turns out not to be, so we’re focusing on the second community and may eventually move there.

I’m tracking my grief. I’ve experienced anticipatory grief and the grief of multiple losses, but the grief of chronic illness is an odd form of grief. Crazy thoughts come to mind, such as “I will miss me.” My husband and I live with the fact that we’re approaching the end of our lives. This makes each day more precious than the last.

I’m living mindfully. Awareness of the moment is ingrained in my soul. Today, I am living more mindfully than ever before. This time with my husband is a gift. John keeps telling me, “I fall in love every day.” My reply is always the same, “I do too,” and I savor each moment, each breath, each heartbeat. I am alive.