Prepare for 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 "That Clear and Certain Sound"

2. Hospital Beingness

3. The procedure

4. After-care

5. Caregiver roles

1. Read "That Clear and Certain Sound":

This book is about truth, clarity, connection, integrity, and being alive, by Pamela Haines, someone whom I adore. 

“A bell can’t ring true when it is covered or padded or stuffed. To hear the ring of truth in our lives, it can help to strip down. What clutters our minds? What messages have we taken in – from our childhood, from advertising, from society at large – that muffled the truth?”

Patricia says just identifying that we want to spend time with “that which rings true” is a big step forward: “counting up the minutes that ring true in our lives - just two minutes this day, maybe seven the next - and then reaching for more.”

The goal is to figure out how to create those moments more reliably and dig away at the stuff that muffle them. Creating clarity and truth in our lives.

2. Hospital Beingness:

Beingness is the fundamental quality of existence, simply being rather than doing or having. The trick is to be aware of my beingness, my essence, with a deep presence, which I will feel as peace, aliveness, or inherent worth.

All of this day will be akimbo and free, so it's a great opportunity to practice Being:

• Remember to stretch, breathe, drink water, all day long.
• Find someplace to sleep mid-morning. Put in earplugs and crash out.
• Go for a walk outside in the sunshine!
• Drink green tea or an N-R-G drink, and eat a protein snack (yogurt or cheese).
• As I eat, pay attention to the Me inside the chaos of noise around me - Say the mantra: Being Me: Mindful, loving, and present.
• List 5-Things to do: Call a friend, read a book, make some notes, progressing to one creative, hands-on priority project. Do the simplest, smallest step on that project.

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.

Questions to ask the surgeon or health care team after your pancreatectomy 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 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.

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.