C - Caregiver Role Expanded

BE PROACTIVE

Recruit others to read in this book about the issues patients encounter coming off the starting line and through the near corner so you all can help your patient deal with feelings of denial, fear and anger by asking questions as well as being a sounding board. Some disappear into themselves and a black hole of sour feelings and need to be drawn out to understand and process all they are feeling. Help them put a face on their fears (faces of the dragon) to give them a  target to deal with.  Keep your fears to yourself, they don't need them.

COMMUNICATIONS WITH FAMILY, FRIENDS AND TEAM

Start a blog or register on www.caringbridge.org , a website for connecting people when someone is ill and make posts regularly. It gives your patient a voice when they are too tired to keep up with phone calls and visits and serves to keep everyone up to date including those afar - especially close family who may be called on to participate in care or decisions. It enables everyone to be processing the realities as they emerge and provides a conduit for them to express their concern and affection which a patient can choose to receive on their own schedule.

FAMILY DYNAMICS

When cancer strikes someone, it strikes a whole family. The dynamics will change. It is like one person in a small lifeboat has shifted positions; everyone else has to be paying attention to move around and change roles/positions to keep the boat from capsizing. It all needs to be done while honoring their needs without tripping over pity, and without disenfranchising the one who is sick or turning them into a control monger. Assist them in retaining as much of their identity as possible, until they can redefine and reinvent themselves, separate and distinct from their disease

Be aware that there are a lot of commonly accepted roles that patients find themselves forced into: the brave, the cheerful, the godly, the good patient, the non-complainer, the fighter-particularly within their family. There is nothing wrong with any of these roles unless they are a role assigned by others or a smokescreen to hide fear and insecurity.

Most everyone can benefit from a confidant outside the family who can be a safe place where real feelings can come out in the open free from the interpersonal spousal or sibling politics. If you can be that person just listen. It is probably wise to hold off on giving guidance until asked.

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