Help From Family and Friends
Many transplant patients and their caregivers assume that a transplant is simply their own problem to manage. But going through a transplant and maintaining a household at the same time is more than most people can handle.
It can help to set up a network of volunteers to help you with chores while you focus on getting better. Choose a close friend or family member to be in charge of your volunteer network. Make a list of things people can do such as shopping, preparing food, child care, yard work, transporting you to doctor or clinic visits, or household chores.
There are many other ways that friends and family can help. They can help organize fundraising events, keep the patient informed about activities at work, and send cards, letters and videos of support. Sometimes co-workers will donate their sick time or vacation days to help a caregiver who needs to take time off to care for the patient.
It may feel awkward at first to ask for help, but keep in mind that family members and friends usually really want to help. Your suggestions will make it easier for them to do something that is truly useful. Free online tools like Lotsa Helping Hands can help your volunteer coordinator organize tasks and manage your volunteers.
Friends and family often show their concern by calling to see how a patient is doing. It can be exhausting to talk with each and every well wisher. Consider recording a message every few days on your voice mail or answering machine to update friends. Some caregivers find email is a good way to keep many people informed at once.
CaringBridge is an excellent way to keep family and friends updated. The web site allows you to create a free webpage where you, or a member of your volunteer network, can post updates on your progress. Visitors to the site can also leave messages for you.
When to Say No
Sometimes well-intentioned family members or friends say or do things that are not helpful. They may tell you stories about someone else they knew that had the same disease and had difficulties with their treatment. They may call too often or ask personal questions about your medical condition that you feel are inappropriate.
It is OK to tell people that you're sorry, but you're not ready to hear certain information, or that you'd rather not go into more detail about your condition at this time. Most people will understand, and you can mimize your stress by doing so.