An astonishing number of peers have difficulty in dealing with chronic disease patients. Many may even avoid meeting or interacting with your patient and yourself, confessing helplessness and fear.
Support and acceptance from your social network can be a boon. However, this is unfortunately rare. You may need to evaluate the people surrounding you and educate them in how best to deal with your patient. If necessary, speak to them privately and prepare them for whatever the present state and forthcoming condition is likely to be.
Encourage them to behave as normally as possible with the patient. Most patients prefer to have their disease referred to in a matter-of-fact way. Excessive emotion or obvious disregard, can both be equally disturbing. Such reactions can imply a whole host of negatives for the patient. It may increase the patient’s own fears and depression. Or it can be interpreted to imply fear, horror, “death sentence” or even revulsion, in case of visible symptoms or disease consequences.
Even if it sounds rude, it is better to warn your visitors not to discuss their favorite “medical horror story” with your patient. Learning about another’s miserable experience is hardly going to be a comfort to you both.
Others may not realize the huge efforts made by the patient and caregiver, to boost their optimism and confidence. Disturbing visits can undo weeks of intensive effort.
Instead of exposing your dear one to such negative influences, try and increase his interaction with the strong, positive and cheerful people in your community. Surround him with those who show acknowledgment and support, instead of fear, pity or sympathy.
Caring for a chronic patient, need not be conveyed by a display of sorrow and grief. Solidarity, enthusiasm, humor and thoughtfulness are far better means. Show him all the beauty in living, so that he is motivated to return to a state of well being.
If all that he sees is despair and despondence, there will be nothing worth fighting for.
Continue all possible social activity. If you can’t take him for a hike, but a walk in the park is still feasible, do that instead. If you can’t go out dining at restaurants, go over to family, who discreetly prepare the menu relevant to your patient’s diet. If you can’t go bowling, have friends over for a round of board games instead. Try and keep your patient and yourself, as connected as possible, to a normal social circle.
This alone can increase his well being and optimism, well beyond measure.