Self-care guidance for caregivers

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Looking after yourself when you are caring for someone else

As a parent or caregiver, you play a big role in helping look after someone with cTTP and making them feel better, but it’s all too easy to forget that you need support, too. After all, it’s difficult to look after someone if you don’t feel great yourself.

Caregivers, including parents, of someone with a chronic condition sometimes experience chronic stress, negative emotions, and physical health issues.1–3 If you are the parent of a young child, you may well worry more about your child’s condition than they themselves.

A woman wearing a yellow top and grey tracksuit bottoms bends over smiling as she plays with two small boys. There is a large potted plant and a shelf with a plant and some books.

The good news is that there is a lot you can do to make sure your needs are met too and there is support available to you. You can find useful guidance and information below that may help you as you continue to support and care.

Caring for children with a long-term condition can considerably add to the stress of parenting, sometimes leading to burnout. Many parent carers wait too long before seeking management for their symptoms of burnout, which often results in a prolonged recovery.2,3

Help when you need it as a parent or carer

  • Talk to your general practitioner (GP)/family doctor who can direct you to other resources.
  • Set aside time in your day to care for yourself. Engage in activities that rejuvenate and energize you, whether it's exercising, reading, listening to music, or a hobby you enjoy. Self-care is important in maintaining your resilience and ability to provide quality care.
  • If you can, take breaks or holidays away from your home situation whereby you can shift your focus to entirely new surroundings.
  • Don't try to do everything alone, accept help. If you can, ask family members, friends, or community organizations for assistance with tasks such as meal preparation, household chores, or respite care.
  • Reach out: consider joining a support group, or charity either in-person or online, where you can share experiences and learn coping strategies from others in similar situations.
  • You may find that counseling or therapy helps you to process your emotions and develop healthy coping mechanisms.
A man and a woman are sat on chairs facing each other. The man looks sad and has his hands on his knees. The woman looks more relaxed, has her legs crossed, and is holding a clipboard.

Caregiving can sometimes be a lonely and isolating experience.4,5 It is important to seek emotional support. Charities, websites and forums can be really useful sources of support. A list of such resources can be found here.

Further reading

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Visiting your cTTP treatment center 

Prepare and support the person you are caring for when you travel.

A woman wearing a green top and pale blue blazer jacket is reading a brown book with a small boy wearing an orange top.

Connecting with others

It can be all too easy to become isolated when caring for someone with cTTP. 

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The information provided on this website is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any concerns or questions you may have regarding your medical condition or treatment.

References

  1. Schulz R, Sherwood PR. Am J Nurs. 2008;108(9 Suppl):23–7; quiz 27.
  2. Lappalainen P, et al. Internet Interv. 2021;24:100382.
  3. Grycuk E, et al. Int J Geriatr Psychiatry. 2022;37(6):10.1002/gps.
  4. Hajek A, et al. Int J Environ Res Public Health. 2021;18(22):12101.
  5. Wellness Everyday. Ventura County Behavioral Health. Available at: https://www.wellnesseveryday.org/caregiver-loneliness. Accessed August 2024.