Position Summary: The Caregiver cares for the patient’s medical, physical, emotional, spiritual, mental, social-emotional, financial, organizational, and dietary needs.
Reporting to: This position reports to the patient, medical staff, the patient’s mother, other family members, friends, acquaintances, and the Lord.
1. Be or become an expert on the patient’s illness. This includes, but is not limited to: listening to, taking notes on, and comprehending all information given during appointments with specialists, asking insightful follow-up questions, and doing independent research on the topic, including weeding out what is an ad, a scam, inaccurate, not applicable, or outdated.
2. Stay up to date on breaking new research on the illness and/or any other illness that may, in some way, relate to this illness. This includes, but is not limited to staying abreast of all new publications and research in the field of medicine, cancer research, homeopathy, and anything else new that may have a connection of any kind to this illness.
3. Graciously accept and assess the validity of: stories (i.e., anything that begins with, “I once knew someone…”), links to buy probiotics in bulk, jugs of water purified to have the perfect pH level, leaves from the Holy Land, names of better doctors, documentaries on Veganism, articles on the benefits of walking barefoot in the grass, TED talks on the power of positivity, names of acupuncturists, marijuana in various forms, treadmills, yoga practices, newspaper clippings of someone else who was once sick and got better, to name a few.
With each submission, go through the following steps:
4. Assist patient with daily needs. This may include, but is not limited to: bathing, dressing, feeding, wound changes, laundry, shopping, cooking, cleaning, and dispensing medications.
5. Attend doctor’s appointments and medical procedures:
6. Assess unexpected symptoms, such as fevers, rashes, pain, confusion, etc., to determine what steps need to be taken, i.e. ambulance, ER visit, call to clinic, etc.
7. Create and maintain impeccable records of appointments, insurance, disability paperwork, contact information for medical team, medication inserts listing potential side effects, receipts potentially usable for tax purposes, medical research, etc.
8. Order, organize, dispense, and fight with insurance companies over medical supplies and prescriptions. This task occurs at least monthly. All battles fought the month before are considered null and void and will be asked to be fought again with each new month.
9. Build strong knowledge of and relationships with the health insurance field. You will have daily contact with billing companies, medical supply companies, bill collectors, etc. It is important to research each piece of mail received, as most of them are faulty, but not obviously so. Failure to do so in a timely manner will promote additional pieces of mail from bill collection agencies. Please note that this research takes time, patience, and epic battles with a flawed system. Within in this role you may decide, after doing a thorough cost-benefit analysis, that it is easier to pay the bill, however faulty, than to continue to fight the system.
10. Know when and how often to ask for help with meals, groceries, play dates for children in the home, etc. Ask for help only so often so as not to burn out friends and family. Ask carefully, sounding desperate enough to not be able to fetch your own groceries, but not so desperate that if you answer the door with a shirt that is half clean the gift giver will be confused as to why they are there. Make requests specific so that you don’t end up with 14 chicken casseroles or play dates for your child with strangers. Keep in mind that many of these tasks will come with interaction with well-meaning humans who often don’t know what to say. Before asking, weigh the benefit of the help against the time spent with humans.
11. Create an organizational system for the above-mentioned meals, groceries, and play dates. This is important to ensure that you don’t have tacos dropped off three nights in a row, ice cream treats left on your back step that go undiscovered for days, and your child doesn’t get dropped off in her bathing suit for a play date to the theater.
12. Update family and friends on latest information, providing them with enough information so they don’t worry, but not so many details that they have something to worry about. You will need to do so in an absolutely fair way, telling people the same information and in an unwritten but understood order of importance, keeping in mind which modes of communication are acceptable for which types of news.
13. Actively follow social media pages related to the illness. This will help maintain a constant level of panic and despair as you watch others with the same diagnosis struggle in ways you didn’t realize were possible.
14. Fundraise for a cure. Organize bake sales, send Christmas letters, and create inspirational videos to raise money, not for your own struggling family, but so that researchers can work to find a cure for this disease. It may seem as if you already have a full plate, but you need to do this if you want your patient to survive.
15. Join the hospital advisory board and attend monthly meetings. This is an important part of this role as it gives you practice driving to and from the hospital as well as a monthly opportunity to air the one or two grievances you may have encountered in your time as a caregiver.
PREFERRED DEGREES/CERTIFICATIONS include, but are not limited to:
*Please note: the ideal candidate for this position would have not one, but all of the above certifications.
SCHEDULE: This is a 24 hour/day, 7 days/week position.
You may sleep while on the job with the understanding that:
Please note that this position may sometimes require you to sleep at the hospital. This requires:
HOLDING CONCURRENT POSITIONS: It is expected that those who hold this position will concurrently hold other positions, many of which may be full time, such as Parent and/or Breadwinner.
VACATION: This position allows for two types of vacations:
COMPENSATION: There is no monetary compensation for this position. You will, however, receive:
ADDITIONAL INFORMATION: This position is on an ongoing contract, renewed automatically each year, until the time of the patient’s death. At that point, please see position description for Widow/er.
Serious illnesses do not discriminate on the basis of race, color, creed, religion, national origin, sex, marital status, status with regard to public assistance, familial status, disability, sexual orientation, or age.
This article was originally published by Allison Breininger at The Negative Space website in January 2018. Allison is the spouse of an individual with Fanconi anemia. Check out her website to read more about her family’s experiences navigating FA and her experiences as a caregiver, wife, and mother.