Dad's Discharge from Hospital

Trich

Registered User
Aug 16, 2007
31
0
France
Hi, I have posted prior to my visit to England (I live in France)and have just returned after 10 days visiting dad in hospital. Dad was taken to hospital recently after being found in a bad way at home (he lives alone). He was eventually diagnosed with Lewy bodies dementia and has been put on medication. We are not very happy with the type of medication but have to say it has improved his condition and he is more stable and does not suffer the horrendous hallucinations he was having. He is still confused and rambling and does still 'see things' but my dad is still in there and he said it was lovely to hear some laughter on the ward. I know he will deteriorate and even in his current state would be totally unable to fend for himself at home anymore. Unfortunately, having thought long and hard nobody is in a position to take dad home with them. Everyone is at work for long days and it would be dangerous for him to be alone for long periods ( he left the gas on in his old house), Luckily we were all able to attend the meeting with the various 'professionals' at the hospital. The first option was to send dad home with a care package and wait for the next 'incident'. Well the answer to them wouldn't be printable! We argued long and hard against that and so came the next option Sheltered Accommodation. I don't feel this is appropriate. The accommodation they are offering is a flat next to stairs which has an exit. Staff are not allowed to restrain and can only practice 'distraction techniques'. Dad was wandered at home but was never brought home by police (apparently a vital distinction as we cannot prove he did it). He also wandered in the hospital and they lost him one day. He was found in the maternity ward but apparently this is classed as 'institutional wandering'. Even after 6 weeks in hospital he couldn't find his way back to the ward although we took him for walks several times a day. The social worker has told the manager at the sheltered housing place that dad is not a wanderer. He cannot take care of himself and even with with care packages in place there is a period of 4 hours day when no staff are on site. This kind of accommodation is really for people who can live independently and make their own way about. Plus they have very mininal training in dementia care. We have found a residential care home that specialises in dementia which is near to my sisters who would visit regularly. This is obviously more expensive than the sheltered housing so is being discounted. Dad has no house and not much money so I think they would have to pick up the tab. They want dad out of the hospital so are throwing anything that is available at us even if it is not appropriate. I have had my fill of trying to argue with these people but surely they can't force us to choose something that we are not happy with. Does anyone have any similar experiences and actually won! This is so hard anyway coming to terms with gradually losing my dad to this horrible disease. We just want him to be safe and comfortable and leaving him anywhere is going to be hard enough. I thought I had calmed down but the anger and tears are back.
Trich
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,442
0
Kent
I`m really sorry Trich, I wish I could help but have had no experience in this area. When my mother went in a home in 1997, it was all so much more straightforward.

Hope fully someone with more experience will be able to advise you.

Take care xx
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Well if you really want to put a spoke in the works, tell the manager of the sheltered housing facility the truth: that he is a wanderer. I'm reasonably certain that that would put a stop to that particular plan.

Ultimately, I'm afraid to say that you as his children have little or no rights in the matter. So, theoretically they could place him wherever is "suitable". However, the issue is "suitability". How mobile is he? I think it's a lot easier to make the unsuitable argument when it comes to physical disabilities than mental one, unfortunately. If he has any history of falls, those stairs would be a bad idea.

Are there any private occupational therapists in the UK? I'm thinking that if you feel this stongly about it, another independant evaluation of his needs would be something to beat them over the head with.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Incidentally, what area (local authority or PCT) is your father in? These things can be very specific to local authorities.
 

Trich

Registered User
Aug 16, 2007
31
0
France
Thanks for your replies.
I had the same idea as you Jennifer. I rang the home to ask some questions and did mention about the wandering and the visit to the maternity ward. I have voiced my concerns to the social worker and he has acknowledged them and wants my dad and brother to visit tomorrow. At the moment dad has reasonable mobility but the combination of the drugs and the gradual deterioration which is expected with this condition would mean that the stairs are an accident waiting to happen. The assessment which the OT did was very positive on our side and she voiced her concerns over a number of areas in dad's house. Many of these concerns would apply wherever he was, particularly the stairs. It has given me an idea though - maybe we could use areas of the report to support the need for a safer environment than that which is being offered. I just don't know what they will do if we refuse to take up the placement. What is classed as a reasonable objection. I know that the social services are being charged by the hospital if dad stays after Friday so perhaps if they get desperate to offload him they might agree to our choice of home. Won't hold my breath though! Any suggestions gratefully received.

Trich
 

Trich

Registered User
Aug 16, 2007
31
0
France
jenniferpa said:
Incidentally, what area (local authority or PCT) is your father in? These things can be very specific to local authorities.
Dad comes under the London Borough of Newham.
Trich
 

Trich

Registered User
Aug 16, 2007
31
0
France
Thanks for your replies.
I had the same idea as you Jennifer. I rang the home to ask some questions and did mention about the wandering and the visit to the maternity ward. I have voiced my concerns to the social worker and he has acknowledged them and wants my dad and brother to visit tomorrow. At the moment dad has reasonable mobility but the combination of the drugs and the gradual deterioration which is expected with this condition would mean that the stairs are an accident waiting to happen. The assessment which the OT did was very positive on our side and she voiced her concerns over a number of areas in dad's house. Many of these concerns would apply wherever he was, particularly the stairs. It has given me an idea though - maybe we could use areas of the report to support the need for a safer environment than that which is being offered. I just don't know what they will do if we refuse to take up the placement. What is classed as a reasonable objection. I know that the social services are being charged by the hospital if dad stays after Friday so perhaps if they get desperate to offload him they might agree to our choice of home. Won't hold my breath though! Any suggestions gratefully received.

Trich
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
I wonder from reading your post if the hospital is putting this unacceptable alternative to you in the hopes of avoiding full funding for your poor dad.

Has your dad been onto an assessment unit yet - you don't say which type of ward he is presently on? If not I think you should ask for this. My husband is on an assessment ward and has Lewy Body Disease. His consultant told me at the last assessment meeting that over 90% of the patients on the ward were LBD and that this particular form of dementia presented very challenging behavioural problems.

If he is sectioned under the Mental Health Act section 3, this gives him many automatic rights, one of which is that the hospital and social services will be responsible for fully funding any aftercare package. If he is presenting behaviour which shows clear danger both for himself and others and he cannot be kept in hospital voluntarily, then he will be sectioned. From what you have mentioned all of these criteria seem to apply to your father's behavioural difficulties.

Your dad's long term needs are at stake and I wish you all the best in your fight to get the correct care put into place for him. xxx TinaT
 

tartbag

Registered User
Sep 1, 2007
3
0
Bradford, West Yorkshire
Snap!

Hi Trish,

We seem to be going through the same, My MIL Has deteriorated in a big way over the last 2 weeks, even though we have found out she has a UTI and has now finished the course of antibiotics something just isn't right after 5 sleepless nights we couldn't decide how to tackle it. We know she is unable to stay alone in her flat which is in sheltered accommodation but we feel guilty because we can't give her the care she needs. Eventually on sun eve she was taken into hospital but discharged on Mon as there wasn't anything more they could do. Much to our disbelief we were back to square 1. Back to her own doctor Mon afternoon explained everything thats been going on (when even the doc shakes their head at her being discharged then it makes you wonder whats happening with the NHS) Thankfully after speaking at length she arranged for the memory doc to visit her today to assess her which has got things moving, she then came and spent over an hr with us all this afternoon and she has been admitted to an assessment unit. What a weight lifted off our shoulders just knowing that they can give her the care we want for her and then we can decide from there what is the best option for her. The hallucinations are so frustrating knowing how to reply to her, we've tried showing her there isn't anybody there, tried agreeing with her, distracting her. If anyone has any ideas we would be greatful!!!
I'll keep you posted
Take care

Rachael
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
I think the pertinent point is in Newham own guidelines for eligibility for sheltered housing "Able to live independently with the support of staff available on-site". The very big question I would have is could he, and even if he could, for how long? I think you're going to have to keep hammering the point that he has a progressive and degenerative illness: not only is he not going to improve, he's not going to be stable.

The other possible track to take is that the assessment conducted in the hospital is inadequate. If a formal review is requested, I believe the clock stops until that review has been carried out. The PALS department should be able to tell you what needs to be done in order to request that review.
 

Trich

Registered User
Aug 16, 2007
31
0
France
Great News!!

I think my e mail to the social worker yesterday must have made him think again. He e mailed today saying that after a 'sleepless night' (we all know about them) he had decided to reassess dad and was going to recommend to the panel today that a Residential EMI place would be more appropriate. Yipppeeeee!! What a relief for us all. Of course, I am blubbing again but tears of relief this time. It seems there was a heart there after all and also he knew we were all going to fight him every inch. I just feel so desperately sorry for all those who do not have anyone to fight their corner as I now know what happens to them. We now have the task of finding somewhere and I know there will be many more bad days but I just have to repeat it Yipppeeeee!
Thank you all for your support, it's such a minefield and there is such a wealth of information and caring from you all. It really does help.
Trich
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Good news indeed Trich. I'm assuming that what he says to the panel is what the panel will agree to. Of course, as you recognise, now starts the next slog: finding an appropriate and available place for your father.

Best wishes
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,442
0
Kent
Good news indeed Trich.
Well done for fighting your father`s corner, and good luck in finding a good home for him.
Love xx
 

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