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CHAPTER 12


supported to help them understand that the patient nearly always ‘knows’, to conceal the truth rarely helps. I always tried to remember who was in charge -- the patient, if awake and lucid. Sometimes a dying person can stay awake and be able to talk until almost the final moments, but this is unusual rather than the norm, so it’s important that everyone says the things that they want to at an early stage. Sharing the truth and your fears and feelings will help you face the future together. It’s normal to have feelings of sadness, anger, frustration and loneliness -- as well as lighter moments of happiness and laughter.


End of life care is not easy for anybody --


doctors, patients or families. You may laugh, you will probably cry; maybe together, maybe on your own.


Early contact with Macmillan Units or the hospice, where these are available, is helpful as well as discussing where you would like to die. This helps to reduce anxiety about the future, and lets you get to know the staff if you opt for hospice care in the last days or weeks. Usually, all necessary care can be provided at home if that is what you wish. Extra nursing can frequently be provided by Marie Curie nurses who will sit with you all night if needed to give families essential rest. Ask your doctor for a DS1500 form (Attendance Allowance or Disabled Living Allowance if you are under 65) to help with care needs or maybe to rent a special piece of equipment (such as an air mattress, wheelchair or bath lift). These may also


be available from your local Social Services department. Make sure that you have plenty of painkillers before weekends or public holidays as it may not be easy to get these from deputising services if you run out.


As people come closer to death, they get weaker and won’t be able to get out of bed; sleep becomes deeper and patients often drift in and out of consciousness and experience confusion. Although patients may not respond, those close by should keep talking. Hearing may be the last sense to go, and the perception of someone near is comforting. A carefully managed combination of drugs and attention to small comforts


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