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Part 2 of Care giving (Important)

Part 2 of Care giving:  

The Caregiver also needs to stay well and balanced, physically, emotionally, mentally and spiritually.  This may require that they need a break.  Who would be able to come in and help?  Can I trust just anyone?  Asking for help or letting others help can take some of the pressure off you and allow you to take care of yourself.  Family and friends often want to help but may not know how or what you need.  Here are some tips for working with family and friends that have helped me and other porphyria patients:

  1. Look for the areas that may need help, buy making a list.
  2. Hold a regular family meeting to to keep everyone up to date. Very important to include the patient and let them express their wishes and concerns.
  3. Ask family and friends when they are able to help and what jobs they think they can do.  Be clear about what you need help with.
  4. When you do hear back from them, note it on your list and make sure they haven taken care of what was needed.
  5. Also show your appreciation to all family and friends for their continued support and help.


One thing that I have done with many people including myself is when sick and others help I keep a notebook by me who called, came to visit or help, and what he or she did, so that while it is fresh in my mind I can go back at a later time when i'm well to Thank them specifically for what they have done.

But, What if I mess up?.......

Stay tuned for my next blog
                                                    "Remember....Research is the key to your cure!"


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