According to the dictionary, the meaning of the word “organize” is to form as or into a whole consisting of interdependent or coordinated parts, especially for united action. I don’t think that skillful organizing is a wellness practice in and of itself. But it certainly comes in handy when living through the crisis of a terminal diagnosis or a chronic, debilitating illness. Getting organized can set the stage for more graceful navigation through the rough waters of serious illness and hospice care.
First, a bit of background about why “O” is for Organization in our ABC’s for Living Well. My mom tells me that I was a great little organizer from the jump. As the eldest kid on the street where we lived, I would organize fabulous events for the neighborhood kids. Think “Alice in Wonderland Tea Party”, 4th of July Parades, sidewalk art shows, kickball matches, fashion shows, and such. My room was always in order, and I alphabetized my story books. I know, “nerd alert.” Being an organizer is just a natural quality for me and it serves me well in personal and professional endeavors. I have learned from experience that this quality is not intrinsic to all beings! In this post, I will share some simple practices that will help you to get organized while caring for yourself or others.
In 2003, when Wayne was diagnosed with a glioblastoma, my organizational skill set went into high gear. As his power of attorney (POA) for health care, it was my responsibility to understand his medical choices, support, and uphold them. As his friend, it was my honor to walk alongside as he faced treatments that often left him feeling sick and exhausted. I helped him to organize his legal and medical paperwork, daily schedules, weekly medication boxes, and his travel backpack for trips to Phoenix for treatment. Because of my participation in the integrative health community, I found myself organizing a variety of practitioner visits to support his quality of life. He became the poster child of an integrative approach, utilizing both conventional medicine (surgery, chemotherapy, radiation), and alternative (supplements, Reiki, massage, etc.) treatments.
I learned from Maria Nemeth that there is a difference between doing things with ease and having things be easy. It was a busy year, and it was not what I would call “easy.” It did, however, unfold with a certain grace and ease. This was due in part to me being an organizer and to Wayne for his outsized attitude of gratitude that was always mutually beneficial. My service to Wayne is what sparked Further Shore’s mission and at this point, almost two decades of service to others with similar needs. If you are in the middle of a medical crisis or caring for someone who is, take a deep breath. You are not alone and hopefully some of the following information will help you to improve the quality of life for everyone in your household.
Whether a care recipient is mobile or immobile, living in one room of the home, or the entire home, there are some organizational actions to take that will provide a safe, streamlined space.
- Arrange furniture to accommodate safety and ease of mobility for the care recipient and caregivers. For hospice patients, if adding a hospital bed, choose an area that is comfortable for the patient and provides easy access for caregivers to tend to the patient and refresh bedding. I have listed several ideas for using Nature’s Nurture to improve and uplift the environment in general and when caring for someone with limited mobility.
- Keep the care recipient’s personal items nearby the bed or within easy reach. Some items to consider are: pillows, blankets, tissues, waste basket, cell phone, reading materials, remotes (for TV or music), water, snacks, hand sanitizer or wipes, lozenges, lip balm, lotion, basin, bedside commode, toilet paper and wipes (if needed), thermometer, heating pad, ice pack, bandages (ace or sterile).
- Mitigate trip hazards by removing scatter rugs and small items like children’s or companion animals’ toys. Install grab bars near the toilet and in the tub or shower areas to avoid falls.
- Designate specific areas for any needed assistive devices such as hearing aids, eyeglasses, wheelchair, walker, grabber tools, or crutches. Return those devices to the same place each time so that patients can retrieve them, or caregivers can easily access them if needed.
- If you or someone you care for faces a serious illness, consider arranging a Share The Care (STC) meeting to establish an STC group. This amazing nonprofit organization has helped thousands to move more gracefully through difficult times. The website offers FREE downloads of instructions and all the materials needed to set up a rotating care team so that the primary caregiver doesn’t burnout. It works! Feel free to ask me more about this.
- Whether or not using the STC materials, do designate a place for important paperwork. This may be on the kitchen counter or a desk. It should be easy for seasoned or new caregivers to locate and reference. Create a special binder or file to include:
- a statement about the medical diagnosis, treatment protocols, preferences for care
- a copy of the medical power of attorney, advance directive, and/or Five Wishes (including how to contact the POA in case of an emergency)
- contact information for the entire support team (family, friends, neighbors, doctors, therapists, pharmacist, anyone participating in your care and wellbeing)
- comprehensive list of daily medications (doses and times; with or without food)
- a list of any allergies and location of medications in case of severe allergic reaction
- a list of any eating, swallowing, toileting, bathing, or mobility limitations
- if the care recipient lives alone, include instructions on who to contact and/or how to care for companion animals in the case of unexpected hospitalization or death
- While it is more common for folks to schedule and track appointments on a cell phone or computer, keeping a paper calendar in the area with the binder can help care recipients with a one-page visual reminder of what is happening. This also helps caregivers to arrange transportation if needed. Use a pencil to note medical appointments, social visits, shopping needs, physical therapy, etc. Caregivers, as a kindness to yourselves, be sure to schedule some time on that calendar for respite.
- Daily supplements, vitamins, and medications can be hard to keep track of, especially if energy is low or one is feeling ill. Filling a weekly pill organizer (AKA medication box or pillbox) is extremely useful. They are affordable, come in various shapes and colors and will save time every day.
- Be prepared for visits to the doctor’s office! Have a written list of medications and questions. Care recipients may want to bring a friend, family member, caregiver, or advocate to the appointment to provide moral support, take notes and help stay on track with questions. In most cases it is permissible to record doctor visits to reference later. Ask ahead of time if that is permissible. Remember, the time for a normal visit with a primary doctor is approximately 16 minutes. Make the most of that!
Engaging in some, or all of these practices can help to improve the quality of life for caregivers and care recipients alike. However, when a crisis becomes overwhelming, it is often hard to think clearly and get organized. . I have experienced how difficult that can be! Take a tip from Share the Care creator, Sheila Warnock, that says, “you don’t have to go it alone”! The key is to become willing to ask for and receive assistance from those who want to help. Taking a little bit of time to discuss challenges with helpful allies can be restorative and offer up solutions to put ease back into the situation.
Of course, these organizational tips do not address the emotional or spiritual concerns that come along with serious illness and at end of life. Those concerns and the myriad of feelings that go hand in hand with them cannot be “organized” or compartmentalized; and neither should they be. In those times, it is useful to take a breath and seek out the beauty in nature, the grace in friendship, a courageous heart, or the empathy of those who understand.
May you and yours find ways to gather and organize the interdependent or coordinated parts of life into a more unified and healthier whole.