Caregivers

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:

  1. Be a compassionate, caring  and helpful partner on your journey
  2. Be your event coordinator making sure you get to your appointments and keep a calendar of events.
  3. Be a second set of eyes and ears at important consultations.
  4. Be your second best advocate (YOU should be your own best advocate).
  5. Make sure you receive the appropriate dosage of medications at the right times.
  6. Help with basic living tasks when needed
  7. Check on you routinely if you are in a medical facility, nursing, nursing home or under other professional care.
  8. Assist or manage maintaining accurate information on medical bills and “insurance explanation of benefits”.
  9. 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:

Books:
1. A Caregiver’s Story: Coping with a Loved One’s Life-Threatening Illness
2. The Power of Two - Surviving Serious Illness with an Attitude & an Advocate
3. Helping Yourself Help Others: A Book for Caregivers by Rosalyn Carter
4. A Caregiver's Survival Guide: How to Stay Healthy When Your Loved One is Sick

Online resources:

The Brain trust has an online peer-to-peer support group for caregivers at http://www.braintrust.org/btcaregivers.htm
C1ancerCare and the Brain Tumor Foundation are offering online support group for people caring for a loved one with a malignant brain tumor.
1 A support group for Cancer related Direct Non-professional Caregivers at http://www.parallelpaths-caregivers.org/
The Family Care giving Alliance at http://www.caregiver.org/caregiver/jsp/ho me.jsp.
1 Family Care giving 101 at http://www.familycaregiving101.org/
The National Alliance for Care giving at http://www.caregiving.org/
From the national cancer institute http://www.cancer.gov/cancer topics/coping/caring-for-the-caregiver/page1
From the national cancer institute: http://www.cancer.org/Treatment/Caregivers/Care giving/index

"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."