by Pat Taylor, CKN Caregiver Section Editor
When a friend or family member receives a cancer diagnosis, you are tossed into the role of first time caregiver on the spot. Your “normal” routines turn inside out and sideways. Even as you are still reeling from your own shock and fear over your loved one’s news, questions begin jockeying for position in your already-full mind. What do I do now? How can I help? What role does the caregiver actually play? What’s the next step?
Good questions! I went to the “experts”, people who have lived in the topsy turvy world of the first time caregiver, and asked them for some helpful hints. Although their experiences as caregivers varied widely, some of their suggestions were the same across the board:
1) Get involved in some sort of support group or on-line support organization that will match you and your loved one up with someone experiencing the same kind of cancer or caregiving role. Dealing with cancer (whether as a patient or caregiver) can be very isolating; support from others who are on a similar journey can help a lot.
2) Sit down with your loved one and a notepad or recorder in hand; make note of questions or concerns you each have before and during doctor visits. Organize and keep those notes in a special file so you can refer back to them and be reminded of things you want to address.
3) Familiarize yourself with the type of cancer and different treatment protocols your loved one will be facing, so you are better prepared to advocate on behalf of the patient.
Some Other Useful Tips:
Jackie Herigodt, Caregiver to Mother, Aunt and others; Connection Specialist, Imerman Angels (www.imermanangels.org)
“Register with Imerman Angels. I know – I start right off with this, but I am serious. I very much wish I had had someone to talk to who was going through these experiences, or someone to direct me who had gone through them. I remember when my mom was sick, calling the local pharmacist at 2 AM and talking to her. She was so sweet. She knew I needed an ear and someone to advise me on the different medications.
Find out what you can about the cancer and the different treatments. Don’t overwhelm your loved one with all that you know (you don’t want to scare them), but make it known that your are well informed or will be, and you have their back.
Get a pill box that is separated. It is great to lay the needed pills out ahead of time, when you have your wits about you, separating them to make it easier to administer all the different pills correctly. This was a huge relief after I figured that out. If you have a nurse come in, you can have them verify what you have put out is correct.
Take care of yourself; get support for you the caregiver. I joined the Relay For Life, which provided a healing to me that I cannot describe well enough in words and that is how I heard about Imerman Angels.”
Cherri Chiodo, Caregiver to daughter Lauren, age 15
“The caregiver is often forgotten. It is great to have a recognized voice. My son was 15 when Lauren was first diagnosed. I had to quit my job and my husband had to work.
The caregiver is thrust into a world where they need to learn medical terms, do research and offer day to day care of the loved one diagnosed with cancer. I am a diabetic so I am familiar with the medical world. That helped me. Lauren was being treated in a pediatric cancer ward. The day she was admitted for treatment, I thought we were just going in to hear the results of her latest tests. I wasn’t prepared to spend the night or longer.
Go to the hospital prepared with items you might need to make your stay and your child’s stay more comfortable: Pillows, blankets, mattress eggplate pads (for sleepovers on hard surfaces/cots), soft towels, wash cloths, microwaveable food and dishes, cutlery, toothbrush, entertainment, games, books, and music. I take three suitcases with me to overnight visits with Lauren.
Doctors are not “gods”. Advocate for yourself, politely but firmly; the Caregiver deserves respect.
Advocate for your child. Make sure the medical professionals speak in terms that you can understand. Get a second or third opinion.
No matter the age of your child, make sure you discuss issues of fertility, the short term and long term effects of treatment that will effect their future lives (vaginal dilators, egg/sperm harvesting prior to treatment, stunting of uterine growth, etc.).
You might feel like crawling into a hole and staying there, but I preferred to project, keep in the loop, becoming part of an awareness campaign around the under-funding of AYA cancer programs and research.”
Grace Barber, Retired RN, Breast Cancer Survivor and Caregiver to husband Graham
“During my own cancer journey, a friend came to see me at the hospital and brought me a big stuffed rabbit. Who would have thought a grown woman would need a stuffie…but I loved it, and kept it with me always.
Arrange for friends/relatives to help prepare and deliver meals, clean the house, drive to appointments, walk pets, and do the shopping or just visit with the patient, to offer relief to the primary caregiver.
Keep your General Practioner in the loop so they can become part of your backup support and meet some of your informational needs during and after your loved one’s cancer experience.
Arrange for homecare, nurses and physio before the patient comes home, if needed.
Journal your experiences. You can write out what you are truly feeling without worrying that you are hurting or upsetting your loved one. Also, this will help you to keep track of your own progress throughout the process, which can be enlightening and helpful.”
Final Tip from Pat Taylor, Caregiver to daughter Sara:
Every caregiver’s needs are as unique as the needs of the loved one you are caring for. You will need to find your own balance in the topsy turvy world of the first-time caregiver. My own suggestion (from my experience as a caregiver) is to be sure to give yourself time to stay engaged in those parts of your life that are not all about cancer. It is okay to laugh, live life and re-energize! You will be a better caregiver for it.
Jackie Herigodt became a first time caregiver at age 13, to her grandmother who was dying from bone cancer. In the 24 years since, she has had to say goodbye to her mother and beloved aunt, both of whom suffered from lung cancers. Most recently, Jackie has helped with her best friend’s mother’s passing from breast cancer, all while taking care of her daughter as a single mom. To help heal herself, Jackie joined the Relay for Life, where she heard about Imerman Angels for the first time. Imerman Angels welcomed Jackie into their organization as a Connection Specialist, where she uses her personal experience as a caregiver and her natural talent for listening, supporting and inspiring others to find matches for caregivers with similar experiences. Imerman Angels’ mission is that “No one should face cancer alone”. Jackie has dedicated her life to making it so.
Cherri Chiodo is a self-proclaimed hipster soccer mom(cologist) to an 18 year old son and 15 year old daughter, who was diagnosed with sarcoma in December of 2009. Through social networking sites like Facebook and Twitter, she is a tireless advocate for children, adolescents and adults, focusing on such things as nutrition, fertility and whole body wellness.
Grace Barber is a retired registered nurse, who has spent a lifetime caring for others. As a breast cancer survivor she created and ran Treasure Chest, a support group for women with breast cancer in Vancouver, for seven years. One of Grace’s proudest life achievements was participating in the original “A Breast in a Boat” Dragon Boat team. Grace and her 22 team mates raced in British Columbia, the United States and New Zealand. To this day Grace continues to offer support to survivors and caregivers whenever the need arises.