Caregivers often become overloaded with responsibilities, caring for the transplant recipient, and most likely taking on extra responsibility for managing the house, kids, finances, etc.
As a caregiver, your experience can be just as intense as the person who received the transplant. Your lifestyle, values, priorities and relationships may be changing, too. You need your own support and plans for how to cope.
It is not unusual for caregivers to disregard their own needs. Making one's own life a priority might seem selfish. But it is essential for caregivers to maintain their own health and well-being in order to help loved ones pursue their goals and achieve their dreams. You can be a good role model by asserting your own independence and taking steps to improve your own quality of life.
Remember that you are responsible for taking care of at least two people: your loved one and yourself. If you become exhausted, you have taken away the patient's main resource. That is why taking care of yourself is a top priority.
Tips for self care
- Do things that relax and refresh you.
- Accept people's offers to help.
- Ask for specific help.
- Take some time out for yourself every day.
- Don't ignore symptoms of stress.
- Set priorities based on your own values.
- Simplify your life.
- Seek out a support group and/or professional counseling.
Maybe you and your loved one can benefit from the same activities, like exercising or meditating together. Or, you may have different approaches. Seeing visitors might make your loved one feel better. You might prefer quiet time alone. It's important to value the differences and pursue the course that is right for you.
Your county or other public agencies may also have a respite caregiver program of trained volunteers who could stay with your loved one while you take some time for yourself.
Caregivers have their own path to follow
As your loved one continues to recover, he or she may find a new lease on life. Even though some challenges remain, it is not unusual for transplant survivors to feel optimism and gratitude for their second chance at life. Some survivors describe their lives as being better for the experience.
Many caregivers share this positive attitude, but the number of caregivers who feel this way is significantly smaller than the number of survivors who report such a positive outlook. While you might share in your loved one's sense of relief, or gratitude, it is likely that you still have your own challenges to deal with.
Your roles and relationships may have shifted. You might have had to relocate, learn new skills and new ways of coping. You have had to do things you never thought would be asked of you. You might have lost or changed jobs as a result of your caregiving responsibilities. In many significant ways your life has changed, too.
Caregivers have their own path to follow. Many caregivers are so focused on the immediate situation for the first year or more that they hardly have time to think of how the experience is affecting them. You may want to reflect on the caregiving experience and start to plan for the future by asking the following questions:
- How has my life changed for better or for worse?
- What parts of my life have been on hold?
- What have I had to give up?
- What have I gained?
- What new goals would I like to set for myself?
- What steps can I take to begin working toward my goals?
- How can I balance my role as a caregiver with other parts of my life?
A caregiver support group can be a safe place to share fears and frustrations without being judged or misunderstood. People who have been through a similar experience can understand in ways that others cannot. Your transplant hospital might be able to refer you to a caregiver support group. You can also find some support groups at marrow.org/resources.
Find other caregivers
Your loved one's transplant center may be able to put you in touch with a local support group and/or with other transplant caregivers.
Join a support group online. One possibility is BMT-Talk, a large support group of transplant patients and caregivers at all stages of the transplant process. Join at http://www.acor.org/index.html. (Look for BMT-Talk in the Mailing Lists section of the site.)
Get connected with another caregiver through the Blood and Marrow Transplant Information Network (BMT InfoNet) - http://www.bmtinfonet.org (see the Helpful Services section).
Remember the power of choice
You did not choose this situation, but you do have choices about how
you react to it. You can choose to accept help. You can choose to ask for support. You can choose to talk to friends. Choose to join a support group. Choose to get away, to cry, to be angry. You can choose to live in the present. Choose to let things go. Remind yourself over and over, that you still have the power of choice.
Monitor your own health and well-being
Just as you have been asked to keep track of your loved one's health and well-being, you need to keep a record of how you are doing and take the steps necessary to keep yourself well. It is not uncommon for caregivers to experience physical side effects brought on by fatigue, stress and depression. Take care of your own physical and mental health. Ask your advocate to help you monitor how you are doing. You may want to see a counselor or join a support group for caregivers.