Hope. It was the one thing I searched for during my journey as a caregiver. My husband, Steve, had a rare, progressive, debilitating neurological disease that would eventually destroy his autonomic system and also required 24-hour care. Every time I came to that point where I thought I couldn’t go on, I still had hope. Each day that I had no energy left, no patience, no desire, and no strength to go on even one more hour I searched for the hope that I could go on. Yes, I said all of those words out loud - no patience, no strength, no energy.
As a caregiver, I had only whispered those words to myself. I would mumble under my breath sometimes about how hard it was to keep doing it. I was too ashamed to admit to anyone how I was really feeling. No one tells you that loving someone can coexist in your heart with not wanting to be their full-time caregiver at the same time.