Before his recent death, my father was in the hospital for the better part of four months and the experience was both agonizing and illuminating. My family had been through a number of health issues with my father, but none so long, drawn-out and chronic as the most recent one. We are fortunate in that the majority of his care was almost entirely covered by Medicare, so the financial effect of the illness was limited. But the emotional drain was enormous. Throughout the process, my family developed a number of coping techniques from which I hope others can benefit. These ideas are not new, but they are good reminders for families who are facing illnesses and their friends who want to support them.
Create and maintain notes for the patient: It is helpful for one of the caregivers to take notes at doctors’ meetings. Invariably, someone new comes on the scene, asking for a brief history—one that provides more than just the data on a medical chart. Additionally, while patients and loved ones are present during medical consultations, their minds are often racing, which makes it difficult to retain important details. The notes provide a way to review what transpired later, when they are able to absorb the information. My sister and I alternated the note-taking role and maintained a lengthy document, with every doctor’s name and contact information, which was instrumental in staying on top of the process. It was a way to exert just a tiny bit of control during an out-of-control time in our lives.
Take off a day from time to time: It was hard for my mother to not be in the hospital, but sometimes my sister and I had to step in and plead with her to take off a day and to rest. The grueling emotional demands on a caregiver can have a physical impact too. Be sure to check in with all of the caregivers and encourage them to take care of themselves too.
Communicate with each other: From logistics, like who is going to be at the hospital and when; to larger issues about important medical decisions, it is important to make time to talk to one another. If you have a larger family, you will need to determine the best way to do this -- a friend told me that she and her siblings would conduct weekly conference calls to catch up! Regardless of the method, the point is to make sure that everyone is on the same page, including the patient.
Ask for help from friends: We have a small family, but my parents have two sets of best friends, who were unbelievable in every way you could imagine. They would help with mundane tasks like driving and meal planning and were also the beacons of emotional support that we needed. They helped disseminate information to other friends, relieving my mother of the burden of having to be on the phone constantly.
Thankfully, the larger circle of friends checked in on us, but not in a way that made us feel like we had to respond to them. In this way, technology is wonderful: A simple text or e-mail that says “I’m thinking about you and sending lots of good energy” is great. Conversely, it is tough to field questions like “What’s happening?” A good rule of thumb to think about when sending a note to caregivers is to try to express your concern, without requiring them to do anything in return.
Use the medical community: My father was cared for at New York University Hospital, a large city institution. While many would think that the size of a place like NYU would be impersonal, we found the opposite to be true: The doctors, nurses, social workers and aides were incredibly caring, helpful and collaborative. We did not hesitate to ask for help, but here’s the key: we always expressed our gratitude for everything that they did for us. These professionals are generally overworked and stressed, so a thank you, a plate of cookies or a smile was always appreciated.