Lewy Body disease

[CarolW]

My dad was diagnosed with Lewy Body dementia about 18 months ago. At the same time my mother was in hospital after fracturing her pelvis and she has Alzheimers, so I had to stay with dad and try to look after him. The hospital refused to discharge mum to go home, so I had to find a care home where they could be together...

 

Unfortunately, dad was there only 2 days when he hit another resident and a care worker and was promptly despatched to the Mental Health Unit at the local hospital, where he contracted pneumonia and died 3 months later.

 

It's a very nasty condition - I found that dad became quite violent on occasions, threw me out of his home several times. He tended to be awake during the night and then went to sleep in the day (!!!) He was trying to phone people in the middle of the night.... When I went to my home for a wash and brush up, sometimes, I'd get the police calling me saying that he'd been on the phone saying he's lost his wife!!! After he threw me out once, I had to sleep at home and the police called me to say he'd been found wandering the streets at 4 am..... I had to go look for him a few times!!!!

 

He had to stop driving after driving up the motorway to a service station and trying to book a hotel there with no money and the police had to bring him home!!!!

 

He didn't remember anything about it and thought someone had stolen the car....

 

Short term memory loss is a bit of a problem!!!!!!

 

He would shuffle around as he couldn't walk properly and if he tried to concentrate when using his hands, they would shake badly. If he became upset, he would shake very very badly!!! He couldn't swallow very well, his food had to be cut up into small pieces for him to chew

 

He was given Aricept as a trial for 3 months but there was no improvement, so that didn't continue and the consultant said that was the best drug available and if that didn't work there wasn't anything else he could try.....

 

All I could do was try to keep him calm and interested in life and be as patient as I could.... which was very difficult under the circumstances!!!! He simply couldn't be left on his own at all.

 

You should be able to receive Attendance Allowance for him at the higher rate, you can call the service on 08457 123456. It's about £70 - £80 per week. Find out what support is available from the local authority and social services, Age Concern and the Alzheimer's society were a great help - they filled in the Attendance Allowance forms for me and it was through in a couple of weeks!!!!

 

If he hasn't made a Power of Attorney, you may have to go through the Court of Protection to have legal authority over his affairs - this is what I'm having to do for my mum at the moment as she simply doesn't have the capacity to make decisions for herself any more.

 

Keep your chin up!!!! It's hard to cope with, but there is a lot of support out there!!!

[JC02]

Hi i was wondering if anyone on here knows or has ever known someone who has been diagnosed with this?

for those who do not know what this is, its a form of dementia and parkinsons disease that affect the brain causing it to slowly deteriorate. motor control is also affected similar to syptoms of parkinsons.

My Dad was diagnosed on friday after almost 2 years of testing. ive read many articles on the internet and got quite a bit of information.

was just wondering if anyone could shed some info from a personal perspective.

thanks

 

my uncle's just been diagnosed with parkinson's. I'm not sure how advanced it is, though his symptoms were classics signs... his hand and leg shaken etc but I don't think it's too advanced because it seems he isnt having any signs of dementia as of yet which I believe is an indication of how progressive it is . However I haven't seen him for a very long time. I'm not an expert on parkinsons, it's interesting you say that your dad has had 2 year of testing, according to my mum they both went to the doctors after complaining of the symtoms i mentioned, 6 weeks later he went to have a scan and saw the neurologist and confirmed it was parkinsons.

 

Here's the thing with me, I'm not sure if its idiopathic parkinsons because my uncle when he was younger was hit by a bus and had severe head and body trauma and had brain damage. Upto now although he has brain damage he can do normal things and is independent, ie lives on his own and can generally live a normal life. But about a year ago he had a nasty accident when walking home and smashed his head on the kurb which was nasty and he had to have an opperation (i think)... so im not sure if it was idiopathic or it was cause by head trauma.

 

One thing you do need to be aware of is the cognitive problems which can occure... but i think that occurs later. Sorry I can't provide you with a person account on it, im going on what my mum has said. It's difficult to give a comparison with my uncle how he his now and how he was a few year ago becasue of other problems he's had. I dont think he's doing too bad though, we just have to keep an eye on him.

 

I know there are different types of dementia, one is with lewy bodies and the other is called frontotemporal dementia which effects personality and behaviour, lewy bodies like you said effects your motor and memory amongst others but i guess it depends on age and the individual.

 

I hope your dad is ok!

[scousemouse]

I had never heard of this before. It sounds horrendous, I am so sorry for your father. We never know as we get older what illness will befall us.

[Twitcher]

I have first hand experience of DLB....

 

First of all, I want to say how sorry I am about this for you, you have my sympathy as it a terrible condition which my poor father had, he sadly passed away just over a year ago now. Please feel free to PM me anytime if I can help. It was sad as you lose them twice, once to dementia and then eventually when they do pass away, you kind of mourn twice and I feel bad about telling you this as watching my Dad deteriorate was the saddest, hardest thing I have had to face. No one told us or warned us what what happen, especially in the end.

 

I'll start by saying it took at least 2 years to get dad diagnosed which is shameful of the NHS and then it wasn't until I looked into this further that I approached his consultant and suggested it might be DLB when it was confirmed.

 

What made me think he had DLB was the fact he had hallucinations regularly which nearly always involved children or animals, plus the way he shuffled in a strange manner.

 

His consultant gave him aricept readily and I am not sure if it helped or not maybe maintained his deterioration a little but not greatly. Dad was diagnosed at the age of 72, though he had had symptoms for maybe 3 years prior to this.He died at the age of 76, two years prior to this he would think nothing of cycling 35 miles around Derbyshire each Sunday, that's how fit physically he was so to lose him to this was awful.

 

First signs, forgetfulness and then he had difficulty signing his name, at this point I had to go to the bank to make sure I could oversee (but not act out) his financial affairs. We had already thankfully put POA's in place years ago. As time went on he was unable to remember birthdays and important events and then as time went on he would go out and come back with strange items of shopping, also come back from the shops with the shopping basket. Fortunately our local shops knew him well. Towards the end he would 'wander' off and we had the police involved one winters evening I remember we found him freezing walking the streets. He would tap things constantly with his fingers and become agitated easily, one thing I will say is he was never aggressive or violent until the very end when this was minimal just down to his fear of being in hospital bless him.

 

It's awful to see your Dad sit and cry as he often just sat there with his head in his hands my dad's problem was compounded as he could not make himself heard as he had a prior condition which meant he could only whisper so communicating was a problem too. You just feel so helpless.

 

Unfortunately Mum had very little help or support in caring for him (save for the attendance allowance) she managed alone, right till the end when he kept falling as his mobility became very bad as he stumbled a lot. Social services were supposed to find him some day care but it came through the a few days after he died so don't hold out any hopes there. Mum got 3 hours support via crossroads who would take Dad out while she had a little break but to be honest after she got a bus into town it was time to come back. In the end she could not leave him alone for fear of him falling or getting out of the house.

 

I feel for you and what you are about to go through, I am not saying it won't be for a few years as it can be slow but with DLB the life expectancy seems to be shortened than other forms of dementia which believe me is a release at the end. It wasn't until I looked at the alzheimers website until I realised my Dad had reached the final stage and he was quite so bad.

 

If I can help in any way or you have any questions, please get in touch.

[esha88]

Hi Twitcher, thank you so much for your reply. Firstly i am so sorry to hear about your Dad.

Reading your post i can already see a lot of these things happening to my dad, he does the tapping thing and the shuffling. He also took to burning his arms as he believed he could see a man in our house that was making him do it. this im assuming is the hallucinations. Dad also quite often wanders off to the shops and comes back with the wrong thing or without his wallet etc.

He has become very short tempered although has thankfully not yet been violent. The hardest thing to accept is that my Dad is only 55 and is still quite young. as i read this condition is usually diagnosed in people 70+.

As much as it isnt nice to hear i'm glad you have told me a bit more about it, as at least now i know what to expect.

[Twitcher]

Hi again

 

I'm a bit shocked to hear you dad is very young, but it does happen.

 

I found the alzheimers website useful, although I'm afraid it's not very nice reading about the 7 (I think) stages.

 

The deterioration happens very slowly, so you don't realise on a daily/weekly basis, it's only when I look back now I can see better, and I can even remember Dad having signs long before diagnosis, I know how frustrating those long memory tests take and it's way too long. On the plus side I think Aricept works better the earlier it's diagnosed, we didn't have to fight for this drug but some do, if it stabilisers your Dad fight for it though with him being relatively young I would have thought they would help more and it shouldn't be a problem.

 

Let us know how you get along with the consultant which will probably be at 6 month intervals.

 

Thinking of you....

[CarolW]

I have first hand experience of DLB....

 

First of all, I want to say how sorry I am about this for you, you have my sympathy as it a terrible condition which my poor father had, he sadly passed away just over a year ago now. Please feel free to PM me anytime if I can help. It was sad as you lose them twice, once to dementia and then eventually when they do pass away, you kind of mourn twice and I feel bad about telling you this as watching my Dad deteriorate was the saddest, hardest thing I have had to face. No one told us or warned us what what happen, especially in the end.

 

I'll start by saying it took at least 2 years to get dad diagnosed which is shameful of the NHS and then it wasn't until I looked into this further that I approached his consultant and suggested it might be DLB when it was confirmed.

 

What made me think he had DLB was the fact he had hallucinations regularly which nearly always involved children or animals, plus the way he shuffled in a strange manner.

 

His consultant gave him aricept readily and I am not sure if it helped or not maybe maintained his deterioration a little but not greatly. Dad was diagnosed at the age of 72, though he had had symptoms for maybe 3 years prior to this.He died at the age of 76, two years prior to this he would think nothing of cycling 35 miles around Derbyshire each Sunday, that's how fit physically he was so to lose him to this was awful.

 

First signs, forgetfulness and then he had difficulty signing his name, at this point I had to go to the bank to make sure I could oversee (but not act out) his financial affairs. We had already thankfully put POA's in place years ago. As time went on he was unable to remember birthdays and important events and then as time went on he would go out and come back with strange items of shopping, also come back from the shops with the shopping basket. Fortunately our local shops knew him well. Towards the end he would 'wander' off and we had the police involved one winters evening I remember we found him freezing walking the streets. He would tap things constantly with his fingers and become agitated easily, one thing I will say is he was never aggressive or violent until the very end when this was minimal just down to his fear of being in hospital bless him.

 

It's awful to see your Dad sit and cry as he often just sat there with his head in his hands my dad's problem was compounded as he could not make himself heard as he had a prior condition which meant he could only whisper so communicating was a problem too. You just feel so helpless.

 

Unfortunately Mum had very little help or support in caring for him (save for the attendance allowance) she managed alone, right till the end when he kept falling as his mobility became very bad as he stumbled a lot. Social services were supposed to find him some day care but it came through the a few days after he died so don't hold out any hopes there. Mum got 3 hours support via crossroads who would take Dad out while she had a little break but to be honest after she got a bus into town it was time to come back. In the end she could not leave him alone for fear of him falling or getting out of the house.

 

I feel for you and what you are about to go through, I am not saying it won't be for a few years as it can be slow but with DLB the life expectancy seems to be shortened than other forms of dementia which believe me is a release at the end. It wasn't until I looked at the alzheimers website until I realised my Dad had reached the final stage and he was quite so bad.

 

If I can help in any way or you have any questions, please get in touch.

 

This sounds sooooo familiar!! Dad was diagnosed when he was 72 and died at 73... The police had my home, work and mobile phone numbers - the phone calls I used to get !!! My brother realised much earlier as dad first became violent towards him (I didn't take too much notice, as I often felt quite violent towards my brother!!! :hihi:)

 

I know what you mean about "losing them twice" - I had to go and see a counsellor through occupational health where I work - and she told me that she thought I was mourning both parents, not because they'd died, but because they weren't the same people I'd known all my life.

 

esha88, it sounds as if your dad may have been diagnosed quite early if he's only 55 - in which case ,the Aricept may help slow the deterioration.

 

Where dad was concerned, the diagnosis came too late for him, he was already a long way down the line. I think he was probably suffering a lot earlier than we recognised. We were concerned about his shaking and memory loss, but he refused to go to the doctor's and get it checked out, so we were stuck. It was only when he had to be brought home by the police after driving the car up the motorway that I was able to persuade him to go to the doctors... Because of the long wait for the scan, I took him to the consultant at a private hospital for the scan and assessment - he then referred us to the NHS Mental Health Unit and it took nearly 4 months to get an appointment with the consultant.

 

I realise my earlier post may have sounded very negative, but that's the way it was for me..... It's probably good for me to get it out of my system, as all this happened last year and I'm still coming to terms with it all!!!!

 

Take care of yourself and get as much "Me" time as you can!! You have to look after yourself as well....

[girlyblonde]

Hi, i work with dementia patients in a private home, i do have some experience if i can help at all then feel free to ask, .

[CarolW]

How are you coping now??? How is your dad doing?? Please let us know!! :)

[tinfoilhat]

Carols last paragraph on her other post is vital if you are the primary carer, look after yourself. Aricept made a big difference on my dad early on so get on that quick. Social services - find as many day centres as possible, they help stimulate and give you a break. Respite care - do your best to get it regularly LBD is a 24/7 and it grinds you down, social services can help with that, but bear in mind it doesn't move quickly.

 

Be prepared for their speech to suffer, but not there long term memory as much as you think. It's definitely not like alzheimers is depicted on the telly. LBD is a totally different animal.

 

Probably the best advice I can give is look out for little infections, a cold or a chest infection for example as that can really knock them back and advance the illness further, and there confusion and immobility can treble (often temparily) and could put them in hospital for months. If doubt, go down the doctors. If it's the weekend, get an emergency doctor, if they won't come out go to A & E. Be as diligent as you can.

 

And when it really, really gets to much, look at nursing care before you become overwhelmed, do not be made to feel guilty for it.

 

That jumbled up post is pretty much it as I've found it. I can't offer a sunny side, there isn't one. Ask for as much support as you can.