Skip to main content

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!"


Popular posts from this blog


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!