Caregiving

Caregiving is not my forte. I'm not patient with weakness, and I am generally selfish with my time. Also, my Patient is not the best patient! He will be crabby and he will push my buttons. But we love each other and love will carry us through this.

Today, as I wait in the hospital, I'm gearing up for the stresses I will face in the days ahead.

Agenda:

1. Read "Comfort with Uncertainty"

2. Generosity

3. The procedure

4. After-care

5. Caregiver roles

1. Read "Comfortable with Uncertainty":

I'm looking again at "Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassion", by Pema Chödrön (2002). The last time my world fell apart this book caught me and saved me.

The theme throughout this book is training in tenderness for life, called bodhichitta. "We train in the bodhichitta practices in order to become so open that we can take the pain of the world in, let it touch our hearts, and turn it into compassion."

Chapter 6 is Loving Kindness and Meditation. She talks about our expectations that we will improve ourselves - with meditation or any other spiritual discipline. But loving-kindness is an acceptance of who we are, exactly as we are, with no expectation of change. Meditation practice is about "befriending who we are already. ... That's what we come to know with tremendous curiosity and interest."

I am challenged to be gentle and good-hearted towards my self; precise - not afraid to see the truth about myself; and open to whatever I find.

2. Generosity:

On the third day of the waning gibbous moon, I practice a love meditation, and then journal about generosity with time and attention. I start with ideas for being generous with myself, then my family, my neighborhood, community, and the earth. I might decide to give money or a gift, or simple acts of helping and sharing my time. (Even though my world has been narrowed by crisis, I can still find small ways to be outwardly generous.) 

This month's generosity plan:

1. Sharing my "hospital retreat" time with family.
2. Take over the responsibility for cooking most meals.
3. Grandson pocket treats and projects.
4. Outline a plan for autumn wildlife care.

When I'm motivated by the desire to give, just the intention to offer my help, and my willingness to listen, will begin to lessen suffering in the world.

3. The procedure:

The first advice for caregivers is "Educate yourself. Learn as much as possible about your loved one’s cancer type, treatment options and potential side effects. Ask your loved one’s doctor about patient education materials and supportive resources. The more you know about the disease and what to expect, the more confident you and your loved one will feel about treatment decisions.

Radical nephrectomy (nuh-FREK-tuh-me) is a surgery to remove all of a kidney. Most often, it's done to treat kidney cancer or to remove a tumor that isn't cancerous. The doctor who does the surgery is called a urologic surgeon. Nephrectomy is often a safe procedure. But as with any surgery, it comes with risks such as: Bleeding, infection, injury to nearby organs, pneumonia, and rarely, kidney failure.

Questions to ask the surgeon or health care team after your nephrectomy include:

• How did the surgery go overall?
• What did the lab results show about the tissue that was removed?
• What's next with the cancer?
• How often will he need tests to track his kidney health?

4. After-care:

Immediate after-surgery care will include:

• Diet: After anesthesia, begin with clear liquids. If no nausea, you may then eat and drink what you like. Drink plenty of water and avoid heavy meals. Eat plenty of vegetables and fruit to avoid constipation.
• Activity: Be sure to walk at least six times per day. This helps prevents blood clots in the legs, which can travel to the lung and become life-threatening. You may tire easily with minimal activity.
• Foley catheter: A plastic tube is typically left in place overnight to drain the bladder and is usually removed the morning after surgery. Once you have urinated or in the afternoon, an ultrasound is used to check how much urine remains in the bladder. This is called post void residual or PVR. If you are unable to urinate or unable to urinate completely, the Foley catheter will be replaced. This is typically left in place for a few days to give the bladder time to recover. You will then return to the office in the morning for catheter removal and come back the same day in the afternoon to check residual urine.
• Bathing: Shower daily. Let the water to run over the incision then pat dry. Avoid submerging in water until incisions have healed completely, about two days. You may place over-the-counter gauze and tape if there is oozing or spotting.
• Medication
• Pathology report
• Postoperative appointments: Skin staples are typically removed at a nurse visit 1 week after surgery; also you will need to review the pathology report with your surgeon.

And then he'll need to take care of his remaining kidney

• Stay away from contact sports, such as hockey, football, martial arts and soccer. These activities raise the risk of hits to the body that could damage the kidney. If you choose to play any of these sports despite the risk, wear extra padding and be careful.
• Eat a balanced diet. Try not to take in too much food that's high in sodium or salt. And drink plenty of water to stay hydrated. You can ask your doctor or a dietitian to help you come up with a meal plan.
• Stay at a healthy weight. Make smart food choices and get regular exercise to lose any extra pounds.

5. Caregiver roles:
"About 17 million adults are living with cancer in the United States today. For each patient, a caregiver is sharing in the cancer journey. Caring for a cancer patient is an important job that plays a fundamental role in that patient’s recovery. Being a caregiver comes with its own set of challenges. It’s a role for which most people feel unprepared. It takes time and understanding to adjust to the changes."

The many hats I will wear:

• Medical advocate, navigating the medical system, attending appointments and overseeing paperwork
• Nurse, taking care of the patient’s physical needs
• Counselor, providing emotional support
• Household manager, making meals, laundry, paying bills
• Caring for grandchildren, maximizing love and minimizing stress

I could face caregiver burnout, anxiety, depression, irritability, and resentment. On the other hand, this could bring us closer and strengthen our relationship, and I may learn some new strengths: Forgiveness, compassion, and courage.