Caregiving is Difficult: How to Do It Well
Under the best of circumstance, caring for someone who is ill can be a daunting task. During cancer treatment, the person you are caring for has needs that can change daily, sometimes hourly, and even minute-by-minute. That is why it is critical that you, as the caregiver—a member of the cancer care team, find ways to stay organized, healthy, and restored to avoid burnout or your own illness. As caregivers are often deeply and emotionally connected, such as a spouse, parent, sibling, adult child, or close friend, meeting your own emotional and physical needs is just as important as that of the person you are caring for.
If you are new to this, learning to navigate the world of cancer treatment can be overwhelming and feel never-ending. It may seem that everywhere you turn you receive more information and have new skills to master. Everyday tasks that were once easily managed may become too much. The patient may no longer be able to manage their own personal care, whether temporary or on-going, which can initially create another level of anxiety for all. Finding food they can tolerate, managing chemotherapy appointments and side-effects, dispensing medications, and keeping life as normal as possible, in an anything but normal time, are all daily challenges. In some situations, add to that the needs of children, transportation demands, household chores, managing work, and financial worries, and it’s no wonder you may be feeling some distress.
Sometimes, caregiver situations occur out of necessity and can create feelings of resentment. Even the best of days can be challenging days, and you may feel you’ve been thrust into this role. In these times, it’s important to remember the person you are caring for has also been thrown into this as cancer can’t be planned, and you may be all they’ve got.
While you may be tempted to just stack all those papers and folders you get from doctors, hospitals, and treatments in a corner and “deal with them later”, keep in mind they were given to you for a reason, Yes, some information may be repetitive, but that means this information is likely very important for you to know.
Set aside some time the day you get information to read the paperwork that was provided. It is helpful to have a highlighter or sticky notes for things that grab your attention such as new regimens, when to call the doctor, side effects, and medication schedules.
You may receive multiple business cards or appointment reminder cards. There are business card page protectors or file boxes that are good for organizing the business cards. Add appointment reminder cards to a small calendar you can carry (or in your phone) to keep life a bit more organized as schedules can become crazy. Place the written reminders somewhere prominent like on the refrigerator or a cabinet door.
Remove financial documents and maintain them in a separate file from information.
If you weren’t provided a folder, purchase a binder and tabs to keep information easy to locate.
If there is a page you feel you should see regularly, again place it somewhere prominent like on the refrigerator.
Revisit information periodically. When possible, read it when your attention is not diverted elsewhere.
There may be many ways you find yourself in need of help as a caregiver. Locate resources and keep a list handy.
While there is a plethora of information available on the internet, know that many sources may not be from legitimate organizations and may provide misinformation. Plan to stick to internet sources like The American Cancer Society, National Cancer Institute, NOCC (National Ovarian Cancer Coalition), your physicians’ offices, and other reputable sites.
Seek a Survivor Bag from Arkansas Ovarian Cancer Coalition at https://arkansasovariancancer.org/survivor-kits.
It is unrealistic to provide 24-hour care 7-days a week. We all need a break. Compile a list of people who have offered to help (really, if they make an offer, take them up on it and never feel bad about this!). Even having someone do a load of laundry, clean a toilet, walk the dogs, pick-up groceries, or carpool the kids can be life-changing. Make a list of things you are having to neglect and enlist a friend to help.
Locate and interview reputable caregiver sources in your area for when the need arises. Do this ahead of the need as life, as you know, is full of the unexpected. You may be seeking professional personal caregivers, sitters, housekeepers, meal delivery services, or respite care.
Connect with the social worker/s available through medical care. While many people have limited ideas about what a social worker does, know that in the medical field they provide a broad array of services that can include counseling, financial planning and Medicaid assistance, arrangements for necessary home health services, medical equipment, and other assistance.
Some cancer patients benefit from palliative care to manage and control pain. Should the cancer diagnosis become terminal, seek support of hospice services and their caregiving team.
As the caregiver, it is common to de-prioritize your own health needs. If you are ill or incapacitated, who will take your place? You must place an emphasis on your own care while being a caregiver. Think of it like this… when you are an empty vessel, there is nothing to pour out to help others.
While it seems like common sense, eating nutritiously and exercising are even more important now. Cargegiving demands a special kind of endurance. If your body misses these essential things, it is less able to deal with the usual lack of sleep and additional physical and emotional stress. Think of these things as preventative.
Have an outlet to deal with emotions. Do things you still enjoy and schedule them. Get your hair done, get a massage, eat out with a friend, or just enjoy some solace time outdoors. Can’t leave the house often? Engage your brain in reading, drawing, doodling, or writing in a journal. Prayer and meditation are wonderful ways to relieve stress and attend to your spiritual needs. There are many apps for your phone, like the Calm App, to get a daily dose of me-time without having to leave home.
Continue to see your own physician for any new or ongoing healthcare concerns.
Seek professional assistance when needed. Be aware of danger signs in yourself such as becoming easily irritated, emotional outbursts, or if you feel in danger of harming yourself or others. It’s amazing what having someone to talk through your feelings with can do, and there is no shame in seeking support! While there is often a stigma surrounding mental health, it is just as important as your physical health. You wouldn’t ignore an open wound, a broken bone, or an ongoing stomach issue. Why would you ignore your all-important mind that is the center of all other functions in your body?
Sleep schedules can become erratic. When sleep time is precious, sleep when the patient is sleeping just like you would with a baby. Leave the chores and non-necessary things for another time instead of thinking you have to do it all.
Practice deep breathing (breath in deeply to a count of four like you are smelling a rose; let out the breath to a count of six through your nose feeling your shoulders and body relax; repeat three times). This affects both your parasympathetic and sympathetic nervous systems to help reduce tension and stress and increase resilience.
Join a support group. For many people, sharing experiences and challenges with others, those that have been in the same trenches as you, can make all the difference. For appropriate groups throughout the state, call Alesa Garner at New Outlook Cancer Recovery Program at CHI St. Vincent, 501-552-399 or 800—446-7341.
A cancer diagnosis and the ensuing treatment can create a wide variety of emotions and behaviors for all those affected. Sometimes these new ways of feeling and acting can be very out-of-character and leave people not knowing how to deal with these changes.
Try to understand how scary this can be. A worry about death or future functionality is not uncommon. Allow the person to tell you how they feel and talk freely without fear of judgment. Listen more than you talk, and realize that everything they are thinking, even if it seems inconsequential or petty, is of the utmost importance to this person at this point in time.
When starting conversations, ask open-ended questions. Instead of just, “How are you?” find ways to get something more than just a short answer. Engage them in discussion about a particular thought or event.
The patient may be feeling very out-of-control in this new situation where everything is happening so fast. Because of this, they may also seem demanding. Be sure to include the person in all decisions as autonomy and dignity remain very important in care. Ask them how they feel about a particular treatment, or even lack of or ceasing treatment, when changes are presented.
Don’t feel you always have to be strong or right. It is just as important for you to walk with the person in their journey. That may mean you are a ball of nerves or reduced to a bundle of tears at times. It’s okay. You are human.
Keep a notebook of questions for medical professionals. Write them down as they come up to be sure everything gets addressed at the next call or visit.
There will be times when you are both feeling frustrated. Keep in mind that the situation, not the person or their requests or the medical team, often creates these feelings. When you are feeling overwhelmed and need a break, say so and make it happen; even if for a few minutes.
For more information on caregiving, visit The American Cancer Society for an all-inclusive Caregiver Resource Guide: Caring for a Loved One with Cancer at https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/american-cancer-society-caregiver-resource-guide.pdf. They also have a Caregiver Support Video Series at https://www.cancer.org/treatment/caregivers/caregiver-support-videos.html.
About the Author:
Simone Brock is a Bereavement Specialist at Arkansas Hospice in North Little Rock. She is also a former teacher and funeral director, has one adult daughter, and resides on a small farm in El Paso, Arkansas, with her husband and two dogs. She is an ardent supporter of death, dying, and bereavement education. She feels connected to ovarian cancer education due to the death of her own grandmother from ovarian cancer at age 41.