After three bouts of living with an irregular, rapid heartbeat (atrial fibrillation), I was diagnosed with acute heart failure. Though I knew I was having heart problems, I didn’t think they were life-threatening. Heart failure was bad enough, but the word acute really bothered me. I wasn’t prepared for the emotions that surfaced in response to this diagnosis.
For a day or two, I was in denial. Things couldn’t be that bad, could they? But a series of tests, including having a camera inserted in my throat to photograph my heart valves and cardio conversion—electric shock to restore my heart to a normal rhythm—banished denial quickly. I searched the Internet for more information on the grief of chronic illness.
Some authors compared this grief to the five stages identified by Elisabeth Kubler-Ross: denial and isolation, anger, bargaining, depression, and acceptance. While parts of this comparison work, I don’t think all the stages apply to the grief of chronic illness. For me, anticipatory grief is a better comparison.
I devote a chapter of my book, Smiling Through Your Tears: Anticipating Grief, (Lois Krahn, MD, co-author), to the symptoms of anticipatory grief and they include:
- Nervous, restless behavior
- Ongoing anxiety and dread
- Mood swings
- Poor concentration
- Feeling vulnerable
- Poor eating habits
- Interrupted sleep or sleep deprivation
When I was in the hospital I couldn’t sleep because I was reviewing my life and facing my mortality. Already stressed, my stress continued to build. I am my disabled husband’s primary caregiver. Paid caregivers come to our home every day and stay for two hours to get my husband up. I take care of everything else—medication management, medical appointments, emergencies, haircuts, and recreational activities.
What would happen to my husband if I died before him? I worried more about my husband than myself. Years ago, we registered with two assisted living communities and paid the deposits. Now it was time to re-think these decisions. We thought the newer community might suit us. A friend convinced us otherwise. She had researched the facility thoroughly and said, “They don’t have real nursing care. The other one does.”
As with anticipatory grief, my fear of acute heart disease was tempered with hope. According to “Living with Heart Failure,” an article in the “Mayo Clinic Health Letter,” heart medications and lifestyle changes can prolong patients’ lives. I was responding well to new prescription meds and eating heart healthy.
I was also hopeful when members of my health care team explained non-invasive procedure that involved entering a vein, going into the heart, and clamping the valve that was leaking the most. A church friend had this surgery and was home from the hospital in a day and a half. His story also gave me hope.
You may have been diagnosed with chronic illness, yet there are steps you can take to help yourself. Learn about your disease. Watch for symptoms of anticipatory grief. Update your will. Get a will if you don’t have one. While you’re doing this, get Power of Attorney and an Advanced Directive. Live mindfully and make the most of each day—a miracle in action.