CAR T-cell therapy: tips for carers, from carers
If you’re caring for someone going through CAR T-cell therapy you are not alone. Other carers have shared their experiences to help make your journey a little easier.
Don't be afraid to ask questions
CAR T-cell therapy is complex. It is important that you understand what is happening at every stage so you feel more confident about the care you provide. Your hospital team will help you understand what is needed at various stages of treatment.
As your situation changes, your team will give you more information to support you but don’t be afraid to ask questions.
I was worried about my mum’s emotional health and it helped to know that she was getting emotional support alongside her treatments. Knowing she was getting much-needed help helped me cope better too.
Share the load, if you can
Remember, depending on how your loved one is doing, your caring roles will change daily. You will do less when they’re in the hospital and under the care of their hospital team. But when they get home, there will be lots to do.
Having a backup carer or someone you can share the load with can make a huge difference. It will help ease the pressure and make caring less overwhelming. Don’t hesitate to ask friends or family for help. You may be able to delegate non-urgent tasks to them.
Some people are unable to rely on friends and family, or sometimes, they may need additional help. If this is you, our page on caring for someone having CAR-T has some resources you may find helpful.
Retain some of your own life
It is important to have some “me” time outside of the hospital and your caring responsibilities. Whether you visit friends, keep up with a hobby, or just take a walk, doing something for yourself can be incredibly refreshing.
It's okay to get a break, and it will make you a more present carer.
I play badminton with my friends every week. I continued to do so while my husband was recovering. Of course, there were times I didn’t make my badminton hour, but knowing that I could retain my life outside of his cancer treatment helped.
Set up a way to update friends and family
Keeping friends and family updated on your loved one’s progress can be a lot to manage. You will often not have the time or energy to make individual calls or write individual messages. Consider creating a WhatsApp group, Facebook group, or similar, to share updates with everyone.
You may also need to set down boundaries like asking people not to call every day or avoid visiting if they have a cough or cold.
If the person you’re caring for is feeling well enough, they can update people often, but this may not always be possible.
Take care of your health
Your physical and mental health are just as important as the person you’re caring for. It’s important to take some time out to care for yourself. Make time to eat well, exercise, and rest when you can.
I took a yoga mat to stretch while my partner was asleep in the hospital. I also took my laptop with me so I could work or watch TV while I was there.
Take steps to avoid burnout
You may want to do everything for your loved one, but be realistic about what you can manage. Trying to do too much can lead to feeling burned out, and will affect the care you provide. Not everything needs to be done, done perfectly or done immediately. Sometimes, “good enough” is okay.
Pay attention to when you’re doing too much or are stretching yourself too thin. Learn to let the small stuff go (at least temporarily). You can get to it later or delegate some items to friends and family.
Keep in touch with “your” people
It can be easy to isolate yourself when focusing on someone else’s needs. But staying in touch with friends and family, even through quick phone calls and messages, can help you feel supported. Maintaining these connections will remind you others are there for you too.
Caring for someone else is a big job and can leave you feeling a lot of emotions. Remember, you are doing the best you can. When the times seem rough, try to take it one day at a time.
We have other helpful resources on our website, including a checklist, to help you manage the practical and financial aspects of CAR T-cell therapy, caring for someone having CAR T-cell therapy, and a support page for parents supporting children having CAR T-cell therapy.
About this information
This information was developed in partnership with Anthony Nolan and has been accredited with the PIF TICK, the UK's only quality mark for trusted health information.
Last full review 2024. Next full review due 2027. We make factual updates to the information throughout this period.
Thanks to clinical nurse specialists Charina Ocampo and Maia Collins for checking the medical accuracy of this page.