Caring for your loved one after transplant
When your loved one comes home after transplant, your role as a caregiver will change. You may find the return home is the first time you need to provide care for the patient on your own, without nurses in the hospital. You may feel ready for your lives to be more normal, but the patient’s recovery can take a long time. You will continue to support your loved one’s health, finances and emotional well-being. The transplant center team and Be The Match® can offer support and resources. Contact us at 1(888) 999-6743 or email@example.com.
Caring for the patient’s health
In the hospital, most likely the nurses provided the majority of care for the patient. Now, the patient may be able to take care of themselves, but much of that care may fall to you. Before leaving the hospital, your patient’s health care team will teach you the skills you need to care for your loved one. Ask for specific instructions on what to do in case of emergencies or who to contact with specific questions. Depending on the patient’s stage in recovery and overall health, you will need to be prepared to:
- Be with the patient all the time, in case a sudden complication develops and help is needed.
- Watch the patient for new symptoms or problems and report them to the doctor right away. Waiting to report symptoms could cause serious complications.
- Make sure the patient takes the right medications at the right times.
- Care for and change dressings on the patient’s central line, if still in.
- Prepare food and encourage the patient to eat. Some patients won’t be very hungry, but they need to eat to gain strength. There may also be rules about what is safe to eat.
- Take the patient to appointments at the hospital or clinic – sometimes on short notice.
- Help to protect the patient from infections by preparing your home for recovery and making healthy choices.
For some possible side effects, such as an infection or graft-versus-host disease, the patient needs to be treated quickly. Be sure you know what symptoms to look for and the phone numbers to call during office hours, at night and on the weekends.
Managing financial issues
You and your loved one will may need to plan for returning to work and managing ongoing medical bills. If you took time away from your job to care for the patient, you may need or want to return to work now. In some cases, your loved one still can’t be alone. Other family members, friends or volunteers may be able to help so you can return to work. Keep in touch with your employer about how long you can be away from work and maintain health insurance and other benefits.
During the patient’s recovery, there will be additional costs and ongoing medical bills. For example, there may be co-pays for the many doctor visits and medications needed after transplant. The patient’s health insurance coverage should remain active during this time. If the patient loses coverage, it can be hard to pay for unexpected costs.
Resources that may help with transplant costs include:
Coping with emotions
Talk with other bone marrow transplant caregivers about their experiences. Be The Match Peer Connect puts you in touch with other caregivers to provide support and guidance to one another.
The return home can bring unexpected emotions, particularly when the patient doesn’t feel better as quickly as expected. Medications or feeling ill and tired can also affect the patient’s moods. It’s normal for both you and your loved one to feel frustrated if the patient is not able to do many activities, help with household tasks or be as active as before the illness. You and your loved one may need to adjust to the “new normal” of life after transplant. And this will take time.
Turning to a support group or talking to a professional counselor can help. You may also want to reach out to family and friends. Having a clear understanding of your loved one’s needs will help you, friends and family provide emotional support. Some questions to ask the patient include:
- Do you want to see visitors or prefer some time alone?
- Do you want to talk about what you’ve been through or prefer to talk about other things?
- Are there certain topics you don’t want to talk about?
Let family and friends know you still need their help after the patient returns home. Many people will be glad to keep giving you their support if they know it’s needed. And remember to take care of yourself while you’re a caregiver.
Be The Match patient services coordinators can answer your questions and provide support and education to help you and your loved one navigate your transplant journey.