Lewy Bodies Dementia experience please

[Meppershall]

Hi everyone

My dad has LBD, now currently ensconced in a NH and safe. I was new to LBD until last May when he was diagnosed and he has declined rapidly, frighteningly so. Those of you with LBD experience, do you recognise massive swings in mood and symptons ? My dad swings between placid, happy and sociable to very aggressive, moody, uncommunicative, spiteful and downright nasty.

He has been given Lorazepan for his really bad days, but these are also the days that he refuses his medication so they can't always get it into him. He also a Rivastigmine patch to assist with his bad nightmares - which he never refuses.

Also, when I saw him on Tuesday evening, although he was confused and hallucinating (which I have become used to and this doesn't concern me anymore), he was okay in himself. When I went to see him yesterday evening he was slumped in a chair, could barely raise his head, was talking complete nonsense, had difficulty eating his tea, was dribbling constantly and needed help drinking and eating his pudding. I was there for over an hour and a half just trying to be of some comfort to him. At no point does he have difficulty recognising me though, he knows exactly who I am, that's why he is able to insult me so badly when he is having a bad day (If you were a stranger seeing him for the first time yesterday, you would think he was in the later stages of dementia).

If I had found him like this at home I would have called a Dr out to him, but these sort of symptons don't faze the NH and I don't know if I am worrying un-neccessarily.

Is this all normal ? I know there is nothing 'normal' about dementia but I'm sure you will all know what I mean (I know that all dementia patients are individual and that symptons vary from person to person).

I just need to know if this is how it should be/will continue to be, so that I can stop stressing myself out about all of this, or if I should get him reviewed. He is due a visit to the memory clinic on Monday but if he is still like this I will go on my own. It really is difficult to get myhead around the massive differences from day to day sometimes.

Many thanks for any help

 

[marionq]

My husband's cousin had LBD and in the early days could tell me about how she dealt with hallucinations - she just told the people to go away! Her deterioration too was very dramatic and the aggression and nastiness which were utterly foreign to her true nature plagued her later years. I would love to be able to say something positive but there isn't much about it to support that.

I can say she was a lovely wee person and that's how I'll remember her.

 

[Meppershall]

Thanks Marion x

I can come to terms with all of the symptons if I know that they will vary so wildly from day to day, it's just not knowing how I will find him every time I go to visit, he's always so different.

If this is how it's going to be then so be it, I just don't know if this is normal for LBD or if at the minute ther might be something else going on (progression?). The home did a urine dip at my request but found no infection

Thanks again for getting intouch x

 

[Meppershall]

Oh Kassy x thankyou for your comment, this is exactly what I am finding at the moment, and I also believe he is the only one with LBD at the NH he is at because nobody else seems to be demonstrating the same kinds of behaviour as dad.

What makes this more distressing is that on his very bad days the NH call me and keep telling me that they don't think he is in the right place so I have that hanging over my head every time he plays up - which in itself is causing me stress, though I do completely understand the safeguarding responsibilities they have for all residents and not just my dad But then I wonder how much experience they have of LBD and if they are finding it difficult because it's new to them also ?? Just clutching at straws really

I'm sorry that you had to go through this, it's horrible isn't it, selfishly I hope this doesn't go on for years because on his lucid days he does seem to know whats going on and I think he is scared and embaressed. So difficult to deal with

 

[nitram]

As with all dementias no two people are the same.

There is a regular poster who has suffered with LDB for several years, you can read all the threads he has started describing how it affects him https://forum.alzheimers.org.uk/search.php?searchid=7840948

My wife had LDB with all the symptoms you describe. Very early on she could only recognise people as somebody she knew but could not name them or understand any relationship to herself. She could not verbalise and then became mute. The most effective drug regimen to control her outbursts was Memantine and Sodium Valproate.

The time from diagnosis of some form of dementia to death was relatively short
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2700&pageNumber=4

 

[Meppershall]

Hi nitram, thankyou for the links, I will definitely have a look at these and see what they say. I will mention the drungs that you have detailed to the memory Clinic on Monday and see if they might be of any help in my dad's case.

Thanks again

 

[nitram]

You also might be interested in
http://www.lewybody.org/

You have to dig around a bit to get the level of info you require, for instance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181810/ includes 'Clinical criteria for DLB'

 

[Bill Owen]

Lewy body

hi everyone

my dad has lbd, now currently ensconced in a nh and safe. I was new to lbd until last may when he was diagnosed and he has declined rapidly, frighteningly so. Those of you with lbd experience, do you recognise massive swings in mood and symptons ? My dad swings between placid, happy and sociable to very aggressive, moody, uncommunicative, spiteful and downright nasty.

He has been given lorazepan for his really bad days, but these are also the days that he refuses his medication so they can't always get it into him. He also a rivastigmine patch to assist with his bad nightmares - which he never refuses.

Also, when i saw him on tuesday evening, although he was confused and hallucinating (which i have become used to and this doesn't concern me anymore), he was okay in himself. When i went to see him yesterday evening he was slumped in a chair, could barely raise his head, was talking complete nonsense, had difficulty eating his tea, was dribbling constantly and needed help drinking and eating his pudding. I was there for over an hour and a half just trying to be of some comfort to him. At no point does he have difficulty recognising me though, he knows exactly who i am, that's why he is able to insult me so badly when he is having a bad day (if you were a stranger seeing him for the first time yesterday, you would think he was in the later stages of dementia).

If i had found him like this at home i would have called a dr out to him, but these sort of symptons don't faze the nh and i don't know if i am worrying un-neccessarily.

Is this all normal ? I know there is nothing 'normal' about dementia but i'm sure you will all know what i mean (i know that all dementia patients are individual and that symptons vary from person to person).

I just need to know if this is how it should be/will continue to be, so that i can stop stressing myself out about all of this, or if i should get him reviewed. He is due a visit to the memory clinic on monday but if he is still like this i will go on my own. It really is difficult to get myhead around the massive differences from day to day sometimes.

Many thanks for any help

hi im bill..lost my wife to l/b/d back in march 2016.yes a lot of what you say my wife had .i will not mix my words .has this is going to be tuff for you . (you will need help on the way s/worker can help you .) if you are looking after you dad on you own . You can get (p i p) this is money per month so look into it) do not let it go its there for you .you dad will not be.able to swlow over time will not want food . Sorry im dislix so bare with me . I went to saynbry store for smoothe drinks. Thay are very good. Mash potto. Ice crame rice padding.all helps . Has yyou know this is not dad fault its the bl........ Illness. Love him cwtch him he all he got now . Bat keep strong you self . Mast have some me time has well . Bill

 

[Meppershall]

Thankyou Bill x I'm sorry you lost your wife to LBD, it can't have been easy for you.

Dad is in a NH thankfully, I was finding it hard to cope earlier in the year and he was admitted to hospital after an infection and then went to the home, so I don't have to deal with his day to day care but still visit as often as possible. I was never very close to my dad growing up and I must admit that depending on what mood he is in I either hate him, with a passion, or feel utterly heartbroken at the situation, which I never expected - it's such a manic roller coaster.

I will learn to deal with this I'm sure, it's just taking longer than I expected xxx

 

[Meppershall]

You also might be interested in
http://www.lewybody.org/

You have to dig around a bit to get the level of info you require, for instance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181810/ includes 'Clinical criteria for DLB'

Thanks again Nitram, I had looked at these some ago and again today as I was looking around for info. These are very useful but sometimes can be very technical, and although I consider my intelligent I don't always take the information in lol That's why TP is so good because I can get first hand knowledge, it really is the best place to come for information x

 

[KathyKL]

My husband had Lewy Body dementia.

Hi!
I registered here just to try and answer your question and offer you some support.

My husband had Lewy Body Dementia. We were fortunate to have a neurologist that was familiar with it but we did run into many professionals that had no clue so I set out to educate everyone we came in contact with

The symptoms you are concerned about with your dad sound very similar to those of my husband. Lewy has been referred to as the rollercoaster with good reason. The ups and downs, the normal the confused. All of these, I'm sad to say, seem very common.

I would suggest that if your fathers symptoms are a dramatic change having him evaluated for a urinary infection would be in his and your best interest. Much of the time infection of any kind can cause significant immediate mental changes.

Lewy Body dementia is an insidious disease. Unlike some of the other dementias our loved ones retain much memory but lose many life skills.
I hope this was able to set your mind at ease a little bit. The journey is not easy, for your loved one or for you. You're doing a great job seeking advise and ways to give your loved one a better quality of life. Nobody can ask for more.

Kathy

 

[Meppershall]

Thankyou Kathy for your kind words xx

We have eliminated the UTI, we've experienced this previosuly and it does send his confusion off the scale, but this time round it doesn't seem to be the culprit. I'm wondering if some of the problem (some !! ) is his constant refusal of medication, I found out yesterday that he has been refusing his rivastigmine patch, so that hasn't helped.

We went to the memory clinic yesterday and the Dr there wants to try a different tack, but this is dependant on him drinking adequate fluids, we go back tomorrow to find out how we are going to manage this. The NH are now expressing strong concerns that they don't want to care for him anymore (becasue he is so challenging and I don't think they much experience of LBD), which in itself is going to be a nightmare should he have to leave as I simply don't have the funds to facilitate the move to another NH - so at the moment that worry is almost taking over concerns about his illness. It is all becoming a mess again, he went to the NH to give me a break, I used to go to his house twice a day to see to him, now I am going to the NH daily to see how he is, and spending more time with him there than when he was at home.

I can only describe this as a recurring nightmare - for him and for me !

Onwards and upwards

 

[Bingowings80]

Hi there Meppershall

A lot of what you say rings true to my experiences with my dad, I think both your dad and mine were diagnosed in the same month (May 2016). His mood will go up and down from minute to minute, hour to hour, day to day, he could be relatively (I hate this word) "normal" one minute and then the next he accusing me or my children/husband of stealing things from his bedroom and trying to put his hat on his foot thinking that it is a sock, even making a cup of tea can be problematic.

I never know which dad I'm going to get today/tomorrow, it is draining and my heart goes out to you.

I'm sorry I can't offer any advice with the CH/NH side of things as I/we haven't had any experience of that - yet.

But I just wanted to let you know you're not alone in experiencing these wildly fluctating changes in mood with LBD. BIG virtual hugs for you and your dad xx

 

[Meppershall]

Thankyou Bingo xxx You're right, it was May 16 that we got the diagnosis,and although I realise he had been suffering from this for longer than any of us were aware, the actual progession of symptons in the last few months seems to have gone at lightning speed.

I, like you, don't know which dad will greet me and it's this that I find so exhausting. I have found out today that the memory clininc Dr is going to try a combination of memetine and another drug (I can't remember which one - will know tomorrow), so I am crossing everything that this combination will work, the downside of this is that it has to be taken orally via fluids which is okay as long as he doesn't refuse to drink - so we shall see how we go The positive of this is that it also appears that the Dr has said that the NH cannot just give up on him so easily and must try all avenues before requesting a move to a mental health assessment facility, so for now that's some good news).

I hope you are managing with your circumstances, I never really had a great relationship with my dad but all of this has upset me much more than I ever thought it would. I sometimes think it would be better if he did forget who I was but the fact that he knows exactly who I am seems to trouble me

 

[DesperateofDevon]

You also might be interested in
http://www.lewybody.org/

You have to dig around a bit to get the level of info you require, for instance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181810/ includes 'Clinical criteria for DLB'

Thank you for this post!
Really helpful