Caregivers are important resource and asset to anyone with a serious illness. Caregivers are vital to a patient’s recovery and yet they often go unnoticed and under appreciated in the glare of the spotlight that’s shining on the patient.
A good caregiver will:
- Be a compassionate, caring and helpful partner on your journey
- Be your event coordinator making sure you get to your appointments and keep a calendar of events.
- Be a second set of eyes and ears at important consultations.
- Be your second best advocate (YOU should be your own best advocate).
- Make sure you receive the appropriate dosage of medications at the right times.
- Help with basic living tasks when needed
- Check on you routinely if you are in a medical facility, nursing, nursing home or under other professional care.
- Assist or manage maintaining accurate information on medical bills and “insurance explanation of benefits”.
- Ideally a caregiver should have a vested interest in your health and survivorship (spouse, sibling, children).
Important note to caregiver patients:
If you have someone assisting you through your journey whether professional and especially if they volunteer please remember someone’s providing their time their time and energy trying to assist you! No matter how bad your feeling DO NOT take it out on you caregiver! They’re trying to help YOU SURVIVE!
Resources for caregivers of PCNSL patients:
"You need to learn ways to take care of yourself. Because if you're not taking care of yourself, you can't take care of anyone else. Don't be afraid to ask questions. Don't be afraid to ask for help."