What happens when the caregiver is not available to do the care? Planning ahead for the absence of the caregiver is of utmost importance. The desperate impact on the care receiver and other family members can be lessened by developing a specific plan.
My worst nightmare became a reality: my husband was diagnosed with mild cognitive impairment. My decision to complete a hip replacement was set. The transfer from the hospital to a rehabilitation site went smoothly. My husband called that our daughter had been taken by EMSA to the hospital (we provide her care). Her issue was solved and she returned home.
The day after Thanksgiving, while I was still in rehabilitation, our daughter’s phone call announced that my husband had fallen resulting in a broken upper arm. His arm/shoulder surgery would not be scheduled until a week later. He suffered an extensive hematoma. My own inability left me helpless except to offer reassurance. All three of us experienced serious health issues requiring hospitalization and rehabilitation; we hired temporary help.
My friend visited the rehabilitation center bearing four helium balloons and a stuffed bumble bee. She listened to the story sympathetically. Each of us had become a burden to ourselves. That meant depending on someone outside the family. I was forced to let go of guilt and control about the whole situation.
The stuffed bumble bee reminded me that I would not be buzzing around doing things for everyone else. My first responsibility was to take care of myself. The rotating balloons were a great source of comfort and spiritual insight as I watched them each day from my bed.
Four insights came to me. Red stood for courage, smiley faces for cheerful support, a blue petal for comfort, and pink for compassionate nurturing. All three of us had become a burden to ourselves and each other. Now we were forced to allow others to share bearing our burdens. Because our culture embraces strength and not weakness, independence is the badge of honor. Most everyone will need assistance at some time in life.
Being dependent requires courage. Every culture displays physical symbols of courage: an eagle, lion, lotus, dove or bull. The praying mantis lacks chemical weapons to survive. It displays a posture of prayer and courageous control “knowing what not to fear” (Plato). Illness denies us some of the means of healthfulness and may leave us never to be the same.
Anais Nin said “Life shrinks or expands in proportion to one’s courage.” Illness threatens to intimidate, distress, unease, weaken, or “white feather” (make us surrender) us. Courage is the grit to endure with bravery, grit, and resolved fortitude. While concentrating on my own rehabilitation our other two family members could not help me because their recovery required outside assistance. Red meant taking small increments of success as small badges of courage.
Cheerful faces on the second balloon represented supporters assisted my recovery. The attending physician brought students to listen to my needs and offer solutions. Those who delivered my pain medication were a welcome sight. A nurse coordinated my care plan. Nutritious foods provided strength to pursue exercise. Dining partners shared their stories of their need for support beyond what could be provided at home. The activity director offered comforting music and manageable activities to healthfully distract my mind. Therapists paced my stretching exercises to meet the goal of walking without an assistive device. A social worker made discharge plans. My husband visited until his mishap. Friends dropped by asking if there was anything I needed and offer moral support; they also offered to help the other two at home.
I devised six self-encouragement words, one for each of the petals on the flower of the third balloon. This was not a sprint but a marathon. Temperate but regular effort would reward me with the ability to walk again without assistance. Peace needed to my constant companion as I wondered daily how each of my other family members was progressing in their care. Gentleness with others when getting my needs met was delayed spared them an angry attitude. Joy during convalescence sped the process and displaced depression. Finding random acts of goodness lifted my spirit. Exercised faith reminded me that God had not left me an orphan.
Pink is assertive without being aggressive. Compassionate care persons considered my needs and wants. During these carefree days from assuming others’ care, I could receive it. Pink encourages action and confidence as well as reduces erratic behavior when one is ill. It means awareness and giving hope. It also stimulates happiness and joy; it encourages friendliness to help us get back “in the pink” of health. A scent of pink is used in aromatherapy to chase away offensive odors.
This story is meant to stimulate readers to prepare and update their paperwork. We have a medical emergency packet in the entry closet. It includes Advance Directive, Durable Power of Attorney, notification of Revocable Living Will, current medications and allergies, and all medical providers as well as family, friend and clergy providers. Who will provide care and transportation when needed after hospitalization: specify facility, medical and domestic support persons or friends.
Family caregivers can avoid burnout by taking breaks. Specific substitutes alleviate stress of trying to find someone in a hurry when they are not available. Shared physical, emotional, social and spiritual care makes the load lighter and the illness bearable when we are a burden to ourselves.
Courage, Part Four
Courage was never designed for show,
It isn’t a thing that can come and go;
It’s written in victory and defeat
And every trial a man may meet.
It’s part of his hours, his days and his years,
Back of his smiles and behind his tears.
Courage is more than a daring deed:
It’s the breath of life and a strong man’s creed.
Edgar A. Guest