Hospice nurse and social worker, Katie Ortlip, came to her writing partner’s, Jahnna Beecham, aid when her father was dying. The two wrote the bookLiving with Dying: A Complete Guide for Caregivers as an instruction guide to understanding the dying process as a caregiver. Read an excerpt of Jahnna’s story below to dive into a firsthand account on the struggles and realizations about personal caregiving.
When I was suddenly thrust into the job of caregiver for my 90-year-old father whose long dormant prostate cancer had metastasized to his bones, I wanted to run. I’d already spent the previous eight years visiting my parents four or five times a week, going with them to every doctor’s appointment, including them in family dinners, outings, and celebrations, and sitting diligently by their sides when they were each in the hospital. Wasn’t it my brother’s turn?
I dove head first into the role of full-time caregiver and instantly became a frazzled lunatic. Dad was in pain, Mom was upset and confused, and I didn’t know how to help. The drugs Dad was given just made him loopy—he kept trying to leave the house through the fireplace. His regular doctor was on vacation, so I was frantically racing from new doctor to new doctor trying to get him some relief. He endured X-rays, MRI’s, and visits with cancer specialists while on heavy meds that made him unable to walk, get on the X-Ray table, or transfer from a wheelchair to my car. And still he was in pain.
I ran from my house to my parents, to my work, to school to get the kids, to the grocery store, to the drugstore, to my parents again, and back home. I had now added another full-time job to my day and in an effort to find more time, I cut out everything in my life that made me happy and healthy. I gave up my morning walk with my friend, weekly yoga class, and fun time with my kids. I grabbed handfuls of chocolate, potato chips, peanuts, and crackers (Mom’s five food groups) from her kitchen and gained 15 pounds, shouted at my parents and kids, and made no one happy.
Lucky for all of us, when Dad was put on hospice, my friend Katie Ortlip became his hospice social worker. Within 24 hours, he was assigned a wonderful nurse, his meds were adjusted (added 4 advil every 8 hrs. and reduced opioid dose), the equipment we would need for the next six months arrived, and Dad was finally pain free. I stopped panicking. Besides taking care of Dad, Katie O (as she is called in the hospice community) talked to me about the importance of taking care of myself. That included starting walking again with my friend, taking time to eat right, taking time for my family and friends, and hiring help.
Katie also gave me some quick tips to help me “Be here now.” Take Time to breathe––inhaling on a count of six, holding it, and then exhaling on six. Always sit when visiting my parents (This says, “I have time for you.”) Make sure the chair is close enough to my hard-of-hearing parents so I don’t have to shout, which automatically tenses your body. Bring a healthy lunch or snack. Take time to eat, sitting down. (Notice the constant advice to “take time?”) Identify my father’s true needs—a driver for appointments and someone who will take time to listen to their concerns. Those simple tips helped me through Dad’s last months, days, and hours, giving me time to just be with my father. With the help of Katie and hospice, my father died in his own bed, surrounded by those he loved.
As I write this, I’m now caring for Mom, who is 93 and has dementia. She has moved in with my husband and me, which adds a whole new set of challenges, but this time I’m taking time to breathe and eat right (I’ve lost 30 pounds). And this is what I now know to be absolutely true:
- Your loved one’s illness will never happen at a convenient time.
- You won’t have enough time or money to help out the way you would like.
- Just when you think you’ve got all the caregiving solved, something will happen to make it all fall apart and you’ll have to start over.
- You will probably quarrel with a close family relative about how to give the best care possible.
- At times you may feel overwhelmed by grief.
- There will be moments when you will probably feel resentment followed quickly by enormous guilt.
- You will start sacrificing your health for your loved one’s.
- You might reach a point where you are burnt-out and absolutely certain that you cannot go one more day.
- And if you don’t reach out to your community—friends, relatives, doctors, church, community center, and hospice, you will risk destroying your own health.
It truly does take a village. My village was, and still is, my husband, my friends, hospice, and Katie Ortlip.
Co-author with Katie Ortlip, RN, LCSW
Living With Dying: A Complete Guide for Caregivers
Available: Amazon.com and Livingwithdying.com
Bio: Jahnna Beecham most recently edited National Geographic’s Science Encyclopedia, which was released in the fall of 2016. Under the pen name Jahnna N. Malcolm, Jahnna Beecham and Malcolm Hillgartner have written more than 130 books for juveniles and young adults for Scholastic, Simon & Schuster, Random House, HarperCollins, Bantam and others.