Unless you have a medical background, you’ll be learning all sorts of new vocabulary and medical processes when you become a new caregiver. You may be interacting with multiple doctors about varied medications and treatments, all of which you need to oversee. You may need to perform a litany of tasks at home, ranging from administering injections to monitoring blood oxygen levels, while also assisting with baths and other cleanliness tasks.
Sometimes the new responsibilities can slowly grow over time as with some Alzheimer’s patients, while other times a stroke or accident can mean sudden new responsibilities. And of course, you may also have to take on the role of advocate with doctors, nurses, and home healthcare workers.
“When you go to the doctor, you’re the one who does the talking now; they look at you,” said Diana Busby, whose husband has Alzheimer’s, heart disease and other issues. At home, she manages his pills, helps him maintain cleanliness and cares for varying new ailments that crop up with increasing frequency. “The other day, my daughter said, ‘You’re just like a nurse.’”
And you may feel like a nurse who has been thrust onto the hospital floor without any training. Regardless of your situation, the learning curve can be steep, long and disorienting. Here are a few tips to keep in mind as you navigate this new and confusing maze:
1) Take a breath and take your time
Caregiving is usually a long haul, so you don’t have to master everything immediately, even when it seems like you do. If doctors or nurses are giving you a medical machine to manage at home or asking you to perform other medical tasks like maintaining a feeding tube, make sure they don’t rush their instruction of the fundamentals. It’s okay to slow things down so you can fully grasp the instructions, address any confusion, and have the time to write everything down. It’s fine to ask them to watch you perform the required task and correct any issues, so you at least have one practice session.
Your loved one deserves adequate care, and if you’re going to be a de facto nurse, it’s vital that you have enough time to learn the needed skills.
2) Check your feelings
Do you have trouble getting shots, having blood drawn or wiping up bodily fluids? If you do, it’s okay. These tasks are hard for many people, and the job of caregiving may require things you do not want to do or perhaps can’t do. If so, take the time to acknowledge this and talk to doctors and nurses about options that may help you be a caregiver in a way that is feasible for you. Everyone is different, and how you feel and what you’re capable of doing is important to know.
3) Get help
If possible, find some help by hiring a home health aide or home nurse. If neither would be affordable, the Red Cross or another local agency may be able to help. Ask family members to take on some tasks if they live near enough to stop by, or if they don’t, perhaps they can provide financial support so you can hire some help each week. If you mainly need questions answered about a required medical task, your loved ones’ doctors, pharmacist and nurses should be able to provide some answers, and home technology companies generally have help lines, although as in everything, their responses will depend on who you happen to catch on the phone. However, new medical skills can be challenging to learn, so it’s important to ask for help.
4) Keep track
There are often a number of medical issues to organize and track for your loved one, including medications, lab tests, diagnoses, and symptoms. A personal health record can be helpful and would include not only a list of medications, but also copies of lab and radiology results, which can quickly be shared with varied doctors. This information can be stored either digitally or in a low-tech binder. A journal can also be used to write down new symptoms, track how often and how bad each symptom is, as well as jot down lists of concerns or questions to address at doctors’ visits. In addition, the journal offers a place to write down each doctor’s instructions or advice to take home with you.
No matter what else you do, remember to have patience with yourself. As a caregiver, you’re learning many new skills that you often have to practice in isolation. It’s a challenging task and a worthy goal. Bravo!