A stem cell transplant is not a procedure patients can navigate alone. In order to move forward with transplant, most centers require that patients identify someone to serve as a full-time caregiver, particularly during the recovery period.
Typically, a close family member serves as the caregiver. For some, it may be necessary to reach out to extended family members or friends for help. Some patients assemble a team of caregivers or hire temporary help.
Why You Need a Full-Time Family Caregiver
While you undergo treatment, you will be too ill and weak to manage your medical and household affairs on your own for several weeks or months. A full-time family caregiver is needed to ensure that you promptly get the medical attention you need, and that your household is a safe environment.
While you are in the hospital, your caregiver will be responsible for:
- telling the medical team about any changes in your condition
- providing you with emotional support
- advocating for your needs and helping with decision-making
- communicating with family and friends
After you're discharged from the hospital, your caregiver will assume additional responsibilities including:
- transporting you to the outpatient clinic daily or weekly
- keeping track of your medical appointments
- making sure you take your many medications according to schedule
- taking care of dressings and your central venous catheter
- reporting changes in your condition to the medical team
- protecting you from sources of infection, such as visitors with colds or those who have been around sick people
- preparing nutritious meals for you
- helping you move around safely
- cleaning and cooking according to the guidelines provided by your transplant team
- in some cases, providing you with intravenous medications
Being a Caregiver is a Stressful Job
Close family members often see caregiving as a normal part of their relationship with the patient, and don’t identify themselves as ‘caregivers’. But it is important to recognize that doing all of the caregiving tasks is like adding a part-time, or even a full-time job to your everyday life.
There are some strategies to help make the experience go as well as possible for both the patient and caregiver.
Gather a Team of Helpers
Friends and family are often eager to help but aren’t sure what to do. Most people are unfamiliar with stem cell transplantation and don’t understand that support may be needed for weeks or months after transplant.
It can be hard to ask for help, but remember it makes others feel good to be able to do something.
Help them help you, by being specific about what you need. Make a list of all the activities that could be done by someone else and then provide that list to family and friends to see who can do what. Designate someone other than the caregiver to coordinate volunteers.
Try to build ongoing support so that you don’t have to keep asking for help. For example, have a neighbor mow your lawn routinely until such time that you feel ready to take back that task.
Take Care of Your Physical and Emotional Well-Being
To provide the best possible care for the patient, you need to take care of your own physical and emotional well-being as well. Taking care of your health is easy to say, but it isn’t easy to do.
Often the caregiver’s needs tend to go to the bottom of the ‘to do’ pile. But even small things can make a difference.
- Go for a short walk before your patient wakes up in the morning to move your body and clear your head.
- Ask someone to sit with your loved one while you attend your own medical appointment.
- Let someone else make dinner, clean your house or make a phone call for you so that you can have time to rest or attend to your own physical health needs.
“Even though you may not want to or think you need to, getting away from the caregiving world, for even half an hour, is important. One person, even a workaholic, can’t handle this situation alone.”
Set up a System to Update People about the Patient's Progress
One task many caregivers find draining is keeping family and friends informed about the patient’s progress. Consider delegating this task to one of your helpers and/or using technology to make it easier.
You can create a free personal web site at CaringBridge or use Facebook or Twitter to keep friends and family informed.
Some caregivers record a new message on voice mail every few days to let people know how things are going.
Communicate with the Medical Team Daily
Communicating with the medical team will be an important part of your role. It is important to ask questions if you don’t understand something or need reassurance.
During the patient’s hospitalization, it is important to get information from the patient’s doctor on how the patient is doing. Try to find out when the doctors make their rounds every day, so you can be there.
If you can’t be there, ask when and how you can contact them during the day.
Be Flexible and Patient
As it is with many things in life, each transplant evolves in its own way. There is no way to predict exactly what will happen.
You will need to be prepared for ups and downs during treatment and recovery. Complications can occur, and recovery sometimes takes longer than expected.
After the patient returns home, there can be setbacks. It’s common for a transplant patient to develop infections and other complications that may require hospitalization.
Plan all you can but expect the unexpected. Plan to be more tired than you can possibly imagine. Take things one day at a time or, if necessary, one hour at a time, and hang in there
Give Yourself Credit
You, the caregiver, are a vital member of the healthcare team that is working to help your loved one recover. Acknowledge the hard work you are doing and take pride in mastering the many tasks you may have once thought you’d be unable to do.
Sometimes, despite your best efforts, problems can arise or things don’t go as planned. It can be easy to question yourself and wonder if something you did contributed to the problems.
Resist the urge to blame yourself. You are doing your best and not everything is within your power to control. Try to show yourself the same compassion as you would for a friend.
Watch a video about caregiving
Helpful Resources
BMT InfoNet’s Caring Connections Program:: connect with another caregiver who can share experiences and support you.
Caringbridge create a personal web page fo communicate with others about the patient’s progress and seek support.
LotsaHelpingHands: organize volunteers to provide meals and other types of help.
MealTrain: organize delivery of meals prepared for you by others.
(To view this page in Spanish click here)
Next Page: The Transplant and Early Recovery Period
Updated June 2024
