Caring for a Loved One
If you are caring for a loved one with a serious illness, you should be aware that there is help available to you. Caring for a loved one with a serious illness can be exhausting and challenging.
You might not know what to expect or do; however, there are resources available to you. Consider the following as you determine a caregiving plan:
- Learn about your loved one's illness. Knowing about the disease and your loved one's prognosis can help you anticipate your loved one's needs and make you feel more capable and in control.
- Learn about common treatments for pain relief.
- Have the name and contact information of your loved one's doctors and healthcare team handy so you can call when you have questions.
- Focus on your relationship with your loved one. You'll have a lot of time together, so make it quality time. If you can, do activities you enjoy together. Cherish the here and now as much as possible. Take one day at a time. Tell stories and talk about hopes and dreams.
- Understand your loved one’s wishes and plan to live well.
- Determine what additional needs there might be if you are caring for a seriously ill child.
- Consider how and what to communicate with family.
- Talk to your employer about your situation. Some companies offer reduced hours or flexible schedules, or you may wish to take a temporary leave. If you qualify, the Family and Medical Leave Act (FMLA) allows you to take up to 12 weeks of unpaid leave and retain your job.
Caring for Yourself
Caring for someone with a serious illness is hard, stressful work, and you need to keep your own health and well-being in mind. The better you care for yourself, the better you will be as a caregiver. Consider these tips:
Get help. If friends, neighbors, or family offer to help, say yes and be specific about what they can do.
You may need a break or someone to run an errand, or your loved one might appreciate a visit or an outing. Local organizations such as churches and community groups may be able to provide help through volunteer programs. If your loved one is receiving hospice care, ask what the program can do. It is possible the hospice workers or volunteers can relieve you so you can go to the gym or church, run errands, get a manicure, or see a movie.
Take a break at least once a day.
Read a book, go for a walk, or meditate. Find and practice whatever it is that refreshes you.
Take care of your own health.
Schedule regular checkups. Get enough sleep. Exercise and eat right.
Get support from other caregivers.
Read caregiver newsletters, join a support group, or follow blogs. All can be helpful, not just to lend a compassionate ear, but also to share information and resources. This is especially important when you are caring for a seriously ill child. The emotional roller coaster can be overwhelming, and help in the form of counseling and support groups can be particularly beneficial. You may also want to visit Caring Bridge, a site created to connect family and friends of patients dealing with a serious illness.
Additional Caregiver Resources
You can find more caregiving advice and support, including information about physical care, how to make the home safe for your loved one, and guidance for taking care of yourself, on the following websites:
- Learn about how you can care for a loved one if you live far away in this blog post on the AAHPM blog.
- Caring Connections
- Family Caregiver Alliance
- Share the Care
- Children's Hospice and Palliative Care Coalition
- American Hospice Foundation
To learn more about the patient perspective or specific caregiver experiences, read a patient story.