Caregiving for a loved one with PNH

Living with PNH

A caregiver is anyone who engages in caring for a family member, friend or neighbour to help them in times of need. As a caregiver, you can be a great source of encouragement and support. There are different ways of being a caregiver and also, many different kinds of care that can be provided.

How you care

Support with physical and hygienic care

Providing more support when your loved one wants to move around, such as get out of bed, bathe and get dressed.

Social support

Helping your loved one get out of the house to meet others, attend their commitments or appointments.

Emotional support

Being present for your loved one and listening to their feelings can foster a deeper emotional connection and help them feel seen.

Household support

This includes fulfilling regular household functions, such as grocery shopping, doing the laundry or mowing the lawn.

Taking care of yourself first is key

Remember, before them there is you – practicing self-care and love is important, especially as a caregiver. Self-care and love are an investment in your emotional, physical and mental health and has been shown to build resilience.

Tips:

  • Engage in activities or hobbies that energize you
  • Make yourself a priority and practice self-care
  • Try relaxation and mindfulness techniques to help you slow down and recharge (e.g., breathe deep and slow for three minutes)