Being a caregiver is no easy task. It often demands sacrifice. You might be caring for children and a partner while also caring for sick parents.
Lynn Schnapp, M.D., ATSF
President, American Thoracic Society
You might be enrolled in school while making treatment decisions for an ailing parent. Your spouse may be battling a serious illness while you negotiate with insurance providers, medical equipment suppliers, and a host of other people. It gets even more complicated if you also have health concerns. As a caregiver, you may at times have feelings of anger, frustration, resentment, and sadness.
Being a caregiver is not for the faint of heart. For caregivers whose loved ones were recently discharged from the hospital, doctors have noted that the burden is “common, persistent, and causes suffering
One study of patients who were given mechanical ventilation showed effects lasting for up to 12 months after the caregivers’ loved ones were discharged. The study also found that many caregivers had to stop working in order to provide care.
The numbers are even more stark when it comes to elderly caregivers caring for a spouse. One study showed that these caregivers’ risk of death was 63 percent higher than adults of similar age and background.
Finding balance
So, as a caregiver, how do you make your role easier to tackle without sacrificing yourself in the process?
The American Thoracic Society is an international society whose members are interested in all aspects of respiratory medicine, from conducting basic research that leads to new treatments to caring for patients.
Part of what makes ATS unique is the way it utilizes patient perspective in our member’s work. Not only are patients and patient advocates integral to the society’s activities, they also help to inform the research priorities of our members.
ATS provides a number of resources for patients and caregivers. For example, Patient Voices is an ATS publication that shares the experiences of patients diagnosed with lung disease. This year, in Patient Voices 10, we feature two perspectives: that of the patient and the caregiver. Rarely is the patient story just their story alone — it often includes a network of individuals or one individual; the caregiver who has assumed the role, whether by choice or obligation.
Here are some tips to keep in mind if you or someone you know is in a caregiver role. Many of these come from the caregivers who shared their stories in Patient Voices 10:
- Take advantage of your family’s and friends’ offers of support, and do not feel guilty asking for help.
- Make lists and charts. Staying organized will help you manage your day with a clear head. You will be less flustered if you can reference your notes throughout the day instead of trying to just remember all the small details.
- Engage a formal palliative care program early in the illness, rather than creating your own patchwork system to address pain and discomfort issues. This will help keep loved ones out of the emergency department or hospital, and support your decisions regarding care.
- Find ways to lighten the mental load. If you like inspirational quotes, paste one on the bathroom mirror, etc. Consider joining a support group.
- Carve out time for daily exercise (e.g., a short walk, yoga).
If you are looking for information on respiratory diseases, please visit the ATS and check out our Patient Information Series. And remember to take care of yourself while you’re taking care of others.