l The New Year of 2005 started with some difficulties. Tony's doctor had recommended, in December, that a synthetic pain-killer patch be applied, because he said Tony was complaining of pain in his lower back. The patch, however, sapped Tony of all his strength and vitality. He wouldn't lift his arms or use his hands. He drooled, hung his head, and slurred his speech. He gagged on foods - even liquids - and stopped eating altogether. Tony's family requested that the patch be discontinued, and a hospice nurse who visited Tony afterwards concurred that Tony seemed to speak of occasional discomfort, not all-out pain.
l After the patch was discontinued, staff members reported - especially at night - that Tony was fidgety, more often delusional, and screaming out in pain. If asked, however, Tony would say that he never felt tremendous pain, just discomfort when in the same position for too long. Although Tony was being given pureed foods only, he rebelled at being treated like a baby, and requested normal food. Within a week after the patch was removed, Tony no longer gagged, he was able to use his arms and hands to feed himself, and he once more enjoyed visits by participating in conversations and interacting with staff and family members. The family believed he was doing well, but the staff disagreed and called a special meeting.
l Early in January, a group of key staff members convinced the family that a fast-acting liquid morphine should be used "prn" - that is, as needed. This would give the staff some options when they detected that Tony was in pain, although he might not verbalize it as such. They felt that pain is often manifested in behaviors, such as fidgetiness, delusions, and depression. Shortly before this, Tony's anti-depressant medication was increased slightly, because Tony was calling out in ways that showed he was experiencing emotional upset. The family knows, however, that Tony has always gone through a depressed emotional state from November through April. His mental state has always seemed to coincide with the season - extreme winter blues! Tony admits this freely, and longs for summer.
l Tony has continued to enjoy visits, eat the parts of his meals that he favors, and complain about winter. Apparently, when he does receive a dose of liquid morphine, it has been at night, which also helps him to sleep. He does not experience any grogginess from the morphine during the daytime, as it is metabolized out of the system quickly. He speaks of wanting to buy a moped for the summer, wanting to move to Florida, despite hurricanes, and feeling as though he should get up and exercise so he doesn't feel so stiff and fatigued.
l Early in February 2005, Tony's doctor phoned the family and said that he was decreasing Tony's diabetes medicine, as his blood sugar levels had been running low. He also expressed his delight that Tony is apparently doing very well. The doctor indicated that he had initially thought Tony's condition would deteriorate rapidly, but this is not the case.
l The Hospice social worker phoned the family on February 11, and said she thought it might be wise to rescind Tony's hospice benefits until a time when it was obvious he needed them. Apparently, Tony doesn't look, act, and progress as a dying person is expected to! She also said Tony is enjoying the visits of a hospice volunteer named Conrad, who engages Tony in conversations and spends time with him weekly. Tony has always enjoyed the companionship of certain men at Epsom Manor. He misses Tom Heald, who used to be the social worker at the facility, and who organized a men's chat group. Now he enjoys the friendship Conrad offers.
l The hospice group never did rescind Tony's benefits, because as it turned out, things changed rapidly. All of February, Tony requested that he get a chance to go out, despite cold temperatures. He wasn't eating much, enjoyed mere bites of his weekly jelly donut, and asked for only outings. On February 19th, Tony was disappointed that the ice races on Northwood Lake were cancelled, but enjoyed driving around with Bill on errands the whole day. The following Saturday, he spent more than four hours watching the stock and modified autos zip around the ice track. When Liz asked him if she could get him anything, he replied, "I have all I could want or need."
l The next night, Sunday the 27th, Tony slipped into unconsciousness. He awoke briefly on Tuesday, and on Wednesday the 2nd of March he fell asleep in death, quietly and peacefully, Liz holding his hand and whispering to him.
l A couple of weeks before, Tony had been eating pancakes, but only a tiny amount. When a nurse asked him if he would finish the last piece of his pancake, he said "When you're done, you're done."
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