Caring for anyone is difficult, even in the best of circumstances. If you’ve been called on to care for a chronically ill loved one, the following recommendations can help you fulfill your responsibilities and care for yourself:
Get organized. File paperwork under key topics: medical care, benefits, resources, assisted living, and nursing homes.
Keep the person’s medical history and medication list handy. Store them in a binder in which you log conversations—to whom you spoke, when, and what was suggested. Highlight tasks you’ll handle yourself and those you’ll ask others to do.
Coordinate medical care. Ideally, one health care provider should do this, but it may be up to you to keep everyone in the loop. Each health care provider should know what the others suggest and what medications the person is taking.
Learn from the experts. Have a visiting nurse spend some time at your home to teach you how to do tasks such as feed, bathe, and dress your loved one.
Be assertive in getting the information you need for your loved one. Consider taking a list of questions to ask the health care provider. Don’t leave until you receive understandable answers you feel confident you can share with others.
Supporting a chronically ill friend or relative can take a toll. These ideas can help you manage your own well-being and emotions:
Join a support group for friends and families of chronically ill people. Doing so can help you process your feelings. Check with local hospitals and health organizations and do an online search to find family support groups.
Ask for help. Friends, family members, neighbors, and coworkers may offer to help. Accept it if they do and assign people specific responsibilities.
Avoid isolation, which may lead to depression. Invite a neighbor or friend to take a daily walk, or join a club. Don’t cut off ties to activities not related to caregiving.
Contact a social worker to help arrange for a home health aide or respite care, which can free you to take care of personal needs without compromising care.
Finally, don’t neglect your needs. It’s important to eat right, take breaks, and get some exercise and time for yourself. You can help your loved one only if you maintain your own physical and mental health.