Although highly trained medical professionals will care for you during treatment, most centers require that you identify a family member or friend who can serve as your caregiver 24/7, particularly after leaving the hospital.
If you develop symptoms such as fever, confusion or disorientation, it is critical to have a 24/7 caregiver on hand to alert the medical team and get you help quickly.
Caring for a loved one who is recovering from CAR T-cell therapy is a big job. Caregivers must juggle many tasks including:
- assuming some of the medical duties that were provided by nurses while the patient was hospitalized
- ensuring the patient follows the treatment plan prescribed by the medical team
- acquiring and dispensing the medications the patient needs daily
- scheduling and coordinating transportation to the clinic and specialist visits
- monitoring the patient for new or worsening symptoms
- communicating any change in the patient’s condition to the healthcare team
- protecting the patient from sources of infection
- preparing nutritional meals
- providing the patient with emotional support
- managing usual household chores such as paying bills, childcare, home maintenance, running errands and work
Managing Neurological Problems
While recovering at home, the patient may show signs of neurological problems such as:
- memory loss
- feeling disoriented
Observing these changes can be very worrisome for a caregiver. It's important fto write down any neurological problem you observe, including when it began, so that it can be accurately and promptly reported to the doctor. Caregivers often recognize there is a problem long before the patient.
While the patient is experiencing these difficulties, it helps to keep your home well-organized, and daily activities as simple as possible until the problem resolves. Try to:
- establish a daily routine and make as few changes each day as possible
- create reminders about when certain tasks need to be done or events will occur
- use automatic timers to turn appliances and electronic devices on and off
- keep rooms well lit and free of clutter
- put important items in the same place after each use so that they can be easily found
- report any symptoms of neurological problems to the medical team promptly
Caregiver's Physical Well-Being
It’s important to make plans to take care of yourself, as well as the patient, so that you remain well and strong through the weeks and months ahead.
To be an effective caregiver, you will need to keep yourself in good physical condition. This includes eating well-balanced meals, getting daily exercise and getting sufficient sleep each night.
Although it can be hard, pay attention to your own health care. If you have any health issues, don’t ignore them or put them off. Remember, if you become ill, you will not be able to care for your loved one.
Try to create a daily routine, with time built in to do things that will keep you strong and healthy, both mentally and physically. Think about ways to ‘burn off' stress with physical movement, such as walking or yoga, and ‘turn off’ stress with meditation or prayer, journaling, spending time in nature or listening to music. Even simple things like a favorite snack midday, five minutes on your favorite website or two minutes of stretching can help relieve stress.
Gather a Team of Helpers
Don’t try to go it alone. It is hard to do all the things you need to do for the patient as well as address your own needs. A good support network is very valuable.
People are often eager to help if they know exactly what you need. Make a list of all the activities that could be done by someone else like shopping, meal preparation or yard work, and then reach out to family and friends to see who can help. Build in ongoing support if you can, so that you don’t have to keep asking.
Ask a family member or friend to organize the help for you. There are many programs available online that make it easy to organize volunteers to provide meals and other help for people with health issues. Some to check out include:
Being the caregiver can create a different type of relationship between you and the patient, at least for a time. If you are caring for a spouse or partner, you may find yourself in a nurse/patient role instead of being equal partners. It’s common for differences to arise over how much care you should be providing or how much you should be pushing the patient to do various things, which can lead to frustration, resentment and anger for both parties.
Communication is key. Bottling up frustration is not healthy. Try using ‘I’ statements such as ‘I am feeling frustrated’ rather than ‘You’ statements such as ‘You make me mad’.
Think about caregiving as ‘care-partnering’. Work together to name challenges and problem-solve them together.
Encourage the patient to do what he or she can without help, so you both maintain as much independence and self-identity as possible. Don’t forget to spend time together doing things you enjoy that are not medical in nature.
Caregiver's Emotional Well-Being
Caring for someone who is recovering from CAR T-cell therapy can be stressful. Fear of the unknown, unexpected complications, frustration over things like getting appropriate medical help, wanting support from family and friends and just plain exhaustion can put your emotional health in jeopardy.
Don’t ignore your feelings. If you don’t deal with them, they will deal with you. Find a person with whom you can honestly express your feelings and discuss your worries. This could be:
- a trusted family member, friend or religious counselor
- another caregiver of a CAR T-cell therapy recipient (find one through BMT InfoNet's Caring Connections Program)
- a Facebook group
- a mental health professional (find one in BMT InfoNet's Directory of Mental Health Providers)
Give yourself the credit you’re due. You are a vital member of the healthcare team working to help your loved one recover. Acknowledge the hard work you are doing and take pride in mastering the many tasks that you once may have thought you’d be unable to do.
Sometimes, despite your best efforts, problems like an infection may occur, or things don’t go as planned. It can be easy to question yourself and wonder if something you did caused the problem.
Resist the urge to blame yourself. Like everyone involved in patient care, 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.
Next: Financial Considerations
Updated August, 2022