Caring for Transplant Survivors
The patient isn't the only person involved in a transplant. No survivor reaches recovery alone; they have help in the form of a caregiver. In factFoundation for Accreditation of Cellular Therapy caregivers play such a vital role in a patient's recovery that most transplant centers will not do a transplant unless a designated caregiver is available to care for the patient after transplant.
Caring for a patient at home is difficult, but it is also a true demonstration of love, and many caregivers discover a new closeness with those they care for. Nonetheless, caregiving can be stressful and frustrating.
Assuming responsibility for the patient's care after he or she leaves the hospital will seem overwhelming at first. You will be responsible for monitoring the patient for signs of complications. You'll learn how to change dressings and flush the central lineCentral venous catheter.. You'll need to administer numerous medications at the correct time, drive the patient to doctor appointments and much more. This can be stressful and leave you feeling exhausted.
You may also need to temporarily assume the patient's responsibilities. This can add to your fatigue, and it can be frustrating if the patient is unable or unwilling to help out with tasks you think he or she is capable of doing. It is common for spouses to feel different about their relationship and marriage for a time.
Your ability to engage in social activities outside the home may be limited, and this can leave you feeling alone and isolated. It helps to make time for yourself - to get away from the caregiving duties for awhile - so that you can relax and renew your energy. It's also important to find ways to get support just for you, either through friends, family connections, a spiritual community or a professional counselor.
Often, caregivers try to hide their worries and feelings from the patient. They don't want to burden the patient. The result, however, is that both patient and caregiver end up feeling worse, and their relationship can become strained.
Keep the lines of communication open, and understand that your emotional health is every bit as important as that of the patient's.
A recent study found that caregivers of adult transplant survivors often experience as much fatigue and memory problems as the patient during the recovery period. The incidence of depression among spousal caregivers is equal to that of survivors as well. Yet caregivers are less likely to be receiving help for their depression than patients. You can learn more by viewing a webcast by Dr. Michelle Bishop, author of the study, on our website.
You can't be a good caregiver unless you take care of yourself. Caregiver burn out is a common problem in the months following a transplant. Give yourself permission to take time for yourself. Take care of yourself physicially, emotionally and socially.
BMT Support.org is an online chatroom where caregivers can share information and gain support. The Association of Cancer Online Resources' electronic mailing list for BMT patients and family members (BMT-Talk) allows caregivers to exchange information about the caregiving experience.
BMT InfoNet's Caring Connections Program can put you in touch with other caregivers who can provide emotional support and answer questions. BMT InfoNet's patient handbooks contain more information on caring for a transplant patient, including stories by families about how they managed the caregiver experience.
Consult our online Resource Directory for more resources on being a family caregiver.