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 I'm from the UK 
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Joined: Mon Feb 20, 2012 9:34 pm
Posts: 2
Post I'm from the UK
Hi Everyone,

I live in the UK and have been tapping into this forum on and off over the past few years. My dad is 84 and had a diagnosis of ? lewys 4 years ago. His current doctor thinks its pretty certain it is LBD and possibly vascular too. He managed living on his own for nearly 4 years but gradually declined to the point he wasn't safe as he kept leaving the house in the early hours and wandering along the streets until he fell over. He was lucky as each time he was found and taken to hospital. It got so bad I was pleading with our social services dept and his GP (general practitioner) to section him but they refused to do it. Eventually he ended up on the right ward in the hospital and deemed he needed respite care so was taken to a care home.

The social worker eventually said he wasn't really safe to go home even with carers as his wandering tendencies at night put him at risk. We moved him to a care home near us so we could visit every day. He was very confused to start with but we persuaded him it would be a good move to be looked after at least until the spring when the weather improved, but of course we knew he wouldn't be going home. He went into the care home a week before Christmas, spent Christmas day with us which was fantastic and he really enjoyed himself.

Over the past few weeks he seemed to become more settled but his ability to communicate with everyone became more difficult. He was using the wrong words and it was very difficult to understand what he meant. He had hallucinations - seeing trains in the corridor, animals, old cars on his bed and was very delusional. All to be expected as he was in a strange place. Last week he had 3 falls, the third splitting his scalp. This was patched up by the paramedics.

Last Sunday he had difficulty rising out of his chair and walking. Monday he was completely off his legs and couldn't even stand . The care home aren't geared to care for people who can't weight bear so we are having to transfer him into a nursing home where they have hoists etc. We have enough experience of lewy's by now to know there are declines and some improvements on a regular basis but this total lack of mobility is a shock. We had hoped he could have spent at least a year or two in this home which is lovely but have to accept it has come to an abrupt end after 2 months.

I have just read a couple of posts that could almost mimic what's happened to my dad - the sudden decline when he seemed to be doing relatively well. The care home wanted him to go into hospital but the doctor didn't feel it was the right place for him and neither did we. They are looking to try a patch (can't remember the name of it) instead of donezipil to see if that will help. Dad has only been able to tolerate 5mg.

We are hoping he will pick up again but his appetite is not as good as it was so he will probably lose weight. So very devastating to see such a huge decline in a few days. Even the care home can't believe how quick it has been.

Thu Feb 23, 2012 5:57 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm from the UK
A warm welcome to the forum. So very sorry you have to be here but it is comforting to be able to communicate with others whose LOs share the same dreadful disease. God bless you.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Feb 23, 2012 6:01 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: I'm from the UK

Sorry to hear about your dad. Is there any explanation for the recent decline such as UTI? Or do you think it's due to the change in environment?

Have you been in touch with the Lewy Body Society in the UK (

Probably the patch is rivastigmine. It's in the same class of medications as donepezil but it's actually been tested in Parkinson's Disease Dementia.

Good for you that you were able to get your dad moved to a care facility and now a nursing home. We've heard from others from the UK on the Forum how hard that is to accomplish.


Thu Feb 23, 2012 6:11 pm

Joined: Mon Feb 20, 2012 9:34 pm
Posts: 2
Post Re: I'm from the UK
Hi. He's had blood tests and has been on antibiotics in case it was a UTI. Bloods came back clear. I think it may be a combination of the move plus the falls that's led to his decline but reading other posts I am hopeful with the new drug and some physio he will pick up again. Moving him again will probably lead to a further decline but unfortunately we don't have a choice as his current home can't cope.

A matter of wait and see I suppose.

Thu Feb 23, 2012 6:20 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: I'm from the UK
Welcome Rosanna. We dealt with a huge and very sudden decline also, so I know what you are going through. I hope he tolerates the next move and that doesn't cause more decline, but be prepared in case it does. All the best to you during a very difficult time. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Feb 23, 2012 6:52 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: I'm from the UK
Hi Rosanna,
welcome. I have been where you are now several times. It is so hard to know what is going to happen next in this awful disease. My Dad is now in a nursing home since last August, and I have to say, though it was extremely difficult at the time, it is the best thing we could have done for him. I had exactly the same experience as you are dealing with now. Dad had declined so suddenly and we thought he was going to die (he was annointed in August). His walk completely went, he made no sense whatsoever when he spoke and was really out of it. Today, he is more like his old self, but is bed-bound and can still have some off days, but we all call him Lazarus, as we have been called in so many times thinking he was dying, only to have him sit up in bed and look for foood. :lol: Dad is 86 now and holding his own. I do hope you will have a similar story to tell us in the not too distant future. Take care of yourself and you are welcome to contact me any time - I live in Ireland, only across the water from you,
Good luck and keep us updated,
Ger xx

cared for Dad who passed away on January 28th 2013 R.I.P.

Fri Feb 24, 2012 5:56 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I'm from the UK
A welcome to you also here at the LBDA forums, I am glad you have been using the forums for some time now and its nice that you have joined in , Good Luck with all that you have deal with

Irene Selak

Tue Feb 28, 2012 5:01 pm
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