My husband died of cancer and I was his caregiver for 42 months. As I have said previously, it was a rollercoaster of emotion, up and down. It was the hardest and the most beautiful time of my life, of our life together. From the time of diagnosis he kept a journal. I share this very special passage he wrote regarding my care for him. It warms my heart, he knew me so well.
Caregiving through his eyes
“I am now acutely aware of the important role of caregivers and am eternally grateful that my number one caregiver is my wife, the love of my life. I have had to learn to trust her in a new and different way. She is my guide, my brain. I relinquish control when mind and body are unable to do what is required. Waking up in the middle of the night to hear her crying is the most difficult experience of this journey. I notice this first not long after the open biopsy, and further during the chemotherapy treatment, with all its side effects.
The love rolls out in tears
“I lie quietly each time, not letting her know that I can hear; the sound is heartbreaking. She has her own experiences as we go down this road, and I feel helpless, unable to care for her in the ways she is caring for me. She cares because she loves me. It is a love filled with smiles and joy, and now fear and grief have been added.
Perceptions of control
“She tries hard to make me feel in control when I am not, giving me control when she can, and taking control when she must. It’s a difficult balancing act. I have told just about everyone, ‘It is the caregiver who suffers the most,’ yet it is the dying one who gets all the attention, sympathy, well wishes, and more; the one doing all the caring is someone offstage who has her own set of problems, but few notice. The caregiver’s reward is to be left alone, and it’s not fair.
“The roles Debbie has played are countless. To name a few, she has been my driver; medication manager; advocate; lover; friend; organizer of information (informing family and others about my ever-changing condition); mother to our children (particularly providing emotional support); accountant and bill payer; arranger of wills, trusts and powers of attorney; and while doing all this, holding down a full-time job with its own responsibilities. Hers is a Herculean job, and not surprisingly, many caregivers suffer so much stress that they too become incapacitated and sometimes precede their loved one to the deathbed.”
And we do it for Love
What an honor to have loved and cared for this man. Despite the burdens I have shared, I would not take back a moment. Make no mistake he was and will always be the love of my life.