Monday, 5 October 2009

Extract from travel diary

The crazy day in Osaka - 17/9/09

Keiko and I are up early and on the way to Osaka. I will observe her at work with HIV patients. She warns me that the first house is shockingly filthy and the second patient has dementia as a result of HIV infections - the man is blind and confused but has much of his emotional capacities intact. I feel very naïve.

amyotrophic lateral sclerosis - We are at the first patient's house. It is not shockingly filthy but it is filled with towels and boxes, and there is lots of dirt on the cupboard and walls. Keiko says the wife is very depressed - she wants to escape but she can't divorce her disabled husband because they come from the same island where everyone knows each other. The man here is completely incapacitated and needs 24 hour care - he cannot even open his eyes now but can hear and think normally. The boredom and frustration must be intense. He is on a respirator, need eyedrops to keep his eyes moist, and must have his bowels emptied by a nurse, but there is no medication that he can take. It is bleak and miserable. There is no point in writing more here. I am trying to hold back my nausea as they help him with a bowel movement as I sit here in the kitchen. I wonder if I were married to someone with this - would I step up and be gutsy, think of interesting entertainments, turn it into a game? Or would I withdraw into myself and wish I was dead? Both maybe. This man has children, I can imagine that would give a wife strength to keep going but I really know nothing. The youngest was 5 when he was diagnosed, he's been ill for 14 years, completely paralysed for 9.

We listened to 80s music and I sang along and danced a bit - did he enjoy it or was he annoyed? Is it best to assume he had fun and it was a good change for him? I don't know. Maybe he was lying there praying it would end... my voice isn't great. He has full feeling, hearing and thoughts - only muscles affected.

progressive multifocal leukoencephalopathy - Then we went across town to the second patient. He is a 39 year old HIV victim who is paralysed on his left side, blind and suffering from dementia as a result of an infection. His mother first discovered he was ill when she rang him in Tokyo - he didn't answer, they found him in his flat. He was first diagnosed with depression, and it wasn't until he had an MRI scan that his dementia was discovered and they realised he was HIV positive. His parents are ashamed, and only his sister knows he is ill, they moved to Osaka to escape their neighbours' and family's questioning. We went up in a lift in a nice block of flats with two other carers. The apartment was normal, except for one room with the patient in a hospital style bed. His working arm was tied with a flannel strip to his bed so he couldn't lash out. He became agitated when Keiko tried to help him shave and later when they helped him move and brushed his teeth. He shouted Japanese swear words again and again, but whispered when Keiko spoke softly to him. She says he gets hyper from human contact because it scares him - he is confused and blind. His left side shook and trembled. He asks Keiko and the other carers the same questions over and over every day - they must answer the same answer otherwise he gets anxious. He says to his mother again and again - "I have AIDS, I have AIDS. I cannot be cured. I am sick. It is hopeless" - but Keiko does not know how much he understands.

There's more but that is enough for one post. The next day I went to the Panda nursery and played cookery games with a little girl who is too ill to eat, and has to be fed directly into her stomach. I was cutting up plastic food with a little girl who can't even eat real food, and is too ill to speak but can understand much.

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