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Parkinson's disease

6 replies

DutchOma · 28/08/2008 18:49

A dear friend and neighbour is in hospital with this. He is in turn very agitated and talking nonsense like "I'm being conned by the Jesus people" and totally lethargic. He is quite immobile. His wife is desperate to have him home since he is not being very well cared for in hospital (left in a dirty 'nappy' and no help with feeding unless she does it), but there is no way she can cope with him unless she has a lot of help. None is in place. They are waiting for a through the floor lift, but it will be three weeks before that is installed.
Has anybody got any thoughts/experience with this?

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penona · 29/08/2008 09:15

Have you tried the Parkinson's disease society? I don't know where you live but they have local support groups who your neighbour could speak to. They provide practical and emotional support. Often a local group can provide a carer to help your friend until the lift etc is installed.

Hope that helps. Good luck.

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toadette · 29/08/2008 09:40

Like penona says, Parkinson's Disease Society would be helpful contact for advice.

Sounds like he requires his care needs assessed for discharge home to see if he needs any equipment or services. Could his wife speak to one of the nurses or the ward manager to see if there is possiblility of referring him to the hospital multi-disciplinary team (OT, physio, social worker etc). If ward has access to team like this they can help prepare for discharge by assessing mobility, ability to do certain tasks, home circumstances etc. Sometimes meeting the hospital consultant or one of the medical team to discuss medical situation, home circs and discharge can be helpful. Again might be good to seek advice from the nurses about this and also ask about how to contact med team (likely through phoning consultant's secretary to arrange appt to see them).

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Lilymaid · 29/08/2008 09:44

My mother had Parkinsons and it is a desperately sad illness. She spent time in hospital after falls and each time came out worse than before. My father used to take her food every day as there was no evidence that she was eating - and the staff could not tell him. Confusion is sometimes due to a urinary tract infection and or dehydration, so it is important that he drinks as much as possible and is tested for UTIs. In my mother's case, home care was available but was not very useful - someone mid-morning to get her up (and make her bacon sandwiches - something she would never have considered eating when well) and at 6 pm to put her to bed, so my father cut this down to one morning visit a day. In their area support was very poor, hopefully it is better where your neighbour lives.

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DutchOma · 29/08/2008 17:32

Thanks everybody. The trouble is that my friend feels she is not getting anywhere. People just seem to 'humour' her and nothing happens. I know it has only been a few days but there is this feeling that nothing is happening which is very frustrating.
I don't thinnk the Parkinson's Society has been very helpful to them, I think they tried when he was first diagnosed, but didn't find it very useful

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penona · 29/08/2008 22:11

Am sorry to hear that the PDS weren't that helpful. I don't know where you live but do they have a local group there? I know someone with Parkinsons and the local group has been much more helpful than the national one, they know more about specific hospitals etc.

I can imagine how frustrating it must be for your friend to see things move so slowly. Is there anyone at the hospital she can talk to? Can you support her there? It must be hard dealing with her husband's practical needs when she must be all over the place emotionally too.

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DutchOma · 30/08/2008 10:09

Yes, of course we support them as best we can, but I think the problem is that things have progressed so much more quickly than anybody expected. And things have not gone their way much, for instance they ordered a through the floor lift about 8 weeks ago and were promised that it would be in, in about 4/5 weeks. Now they have been told it won't be in till the 16th September, which may well be too late.
I'm not sure about the PDS, I'm sure they checked it out when he was first diagnosed, but can't remember what the outcome was. She has tried to talk to people at the hospital but feels they are brushing her concerns under the table.
My fear is that 'they' know there is not much hope for her husband and she is trying to achieve something that is unachievable. That is the sadness of it.