Lewy Body Dementia

Cheslinl

New member
Dec 9, 2019
7
0
My dad is currently in hospital, awaiting transfer to Enhanced assessment Bed in a care home. During his time at the care home (upto 6 weeks), we as a family need to decide what to do about his care. He is currently on a low dose of Atypical anti psychotic to calm him down as prior to hospital admission he was agitated and wandering all night, my mom exhausted finally called an ambulance and he ended up in A&E. We are in absolute turmoil because we don't know what to do, have him home and end up in the same position again or place him in a home. Its the psychiatric symptoms of LBD that are so difficult to manage but am hoping the medication will help with that, anyone else going through this / has been through this ?
 

silver'lantern

Registered User
Apr 23, 2019
208
0
When things get to this level I think personally the needs of the main carer need to be considered and over rule the wishes of the PwD. There comes a time to move to the next level of care and it becomes far to much for one, even with others popping in. Mum calling for an ambulance show she is needing more help. Her needs are now priority.
I don't mean that in a heartless way. Or disrespect for your Dad, but care/nursing home might be the best for all.
 

Mandy76

Registered User
Jul 25, 2019
50
0
We are in the same boat with my mother with LBD. Physically she is okay but psychologically it is getting impossible for my dad to manage. I work full time so am only available in the evenings and weekends to assist him with her. We have had her on every medication available but nothing has worked. She is on rivastigmine patches, diazepam, trazadone, quetiapine (anti-psychotic) - nothing makes one bit of difference.

She is distressed for many many hours each day - terrified of attackers, rapists, accusing my dad and me of stealing and harming children. She is constantly looking for her mother and thinks my dad is her own dad (he was a beast of a man so she is angry that he is there) and she thinks I am her sister, or a stranger. She just sits and cries in terror for hours and hours, and we cannot console her as she does not recognise us.

The memory clinic are considering taking her into hospital for assessment, but we know that she will refuse to go. We just don't know what to do - my dad cannot cope as she is verbally abusive to him and blames him for all her fears. Last night she accused me of kidnapping my younger self! She was howling about her young child (me) being stolen by me (a stranger). We could not console her at all.

No real advice for you, sorry to say, but you are not alone in your struggles with this. It is a terrible situation, it really is. My heart goes out to all affected by this condition.
 

Linton

Registered User
Jul 27, 2019
166
0
I am also dealing with my OH with Lewy body dementia... It is really soul destroying to watch a loved one going through the terrible effects of hallucinations.. At the moment we have it under control... But I feel it won't last like this... I feel so much sympathy for all who are going through this... Love to you all
 

Cheslinl

New member
Dec 9, 2019
7
0
Could I ask what Meds there loved ones are on and mg.....also did your GP prescribe them or did you have to go through neurologist.....dad is only on AS at moment.
 

Mandy76

Registered User
Jul 25, 2019
50
0
Could I ask what Meds there loved ones are on and mg.....also did your GP prescribe them or did you have to go through neurologist.....dad is only on AS at moment.

My mother got her medication prescribed from the doctor at the memory clinic. She gets 4.5mg patch of Rivastigmine - she cannot get the higher dose due to a slow pulse rate. She also gets 12.5mg of Quetiapine in the morning and 25mg of it in the evening. These came from the memory clinic, and her GP prescribed Trazadone 3 times a day when she went completely delusional one night trying to leave the house to "go home". She had diazepam for a month or so prescribed by an emergency doctor who we called one night when she thought I was my dad's "fancy piece" and she went totally wild. She has been taken off these diazepam now though. Not sure what the dosage was.

None of it makes any difference to her though - she seems unaffected by the medications and is getting worse every day in terms of delusions and living in an alternate reality.
 

Linton

Registered User
Jul 27, 2019
166
0
Hi @cheslini..we were recommended to a member of the elderly mental health team from our local authority.. My OH has Rivastigmine daily but now has Quetiapine and that has.. So far.. Made a great difference.. The hallucinations happen but he is so much calmer and happier.. Sleeps better also... Hope this helps... All the best xx
 

Cheslinl

New member
Dec 9, 2019
7
0
Dad unwell again, now on 25mg Quetiapine in the morning and 50mg at night, have a home assessment with mental health team next week hoping they will prescribe rivistigmine as we are not happy about just increasing quetiapine.Just wondered how everyone else is getting on X
 

Linton

Registered User
Jul 27, 2019
166
0
Hi cheslinl... My OH just getting over another bout of UTI which makes hi more anxious... But on the whole the meds are doing well.. Sleeping till 5or6 in the morning and coping with the hallucinations and not getting too anxious.. Sometimes askes me where I am... But on the whole not bad... The parkinsons side of LBD is bad and balance and mobility has meant a few falls.. Luckily no injuries but I have to get help to get him up.. I know things will get worse.. but for now we get by... Love to all going through this xxxx
 

Cheslinl

New member
Dec 9, 2019
7
0
My mother got her medication prescribed from the doctor at the memory clinic. She gets 4.5mg patch of Rivastigmine - she cannot get the higher dose due to a slow pulse rate. She also gets 12.5mg of Quetiapine in the morning and 25mg of it in the evening. These came from the memory clinic, and her GP prescribed Trazadone 3 times a day when she went completely delusional one night trying to leave the house to "go home". She had diazepam for a month or so prescribed by an emergency doctor who we called one night when she thought I was my dad's "fancy piece" and she went totally wild. She has been taken off these diazepam now though. Not sure what the dosage was.

None of it makes any difference to her though - she seems unaffected by the medications and is getting worse every day in terms of delusions and living in an alternate reality.
Hi there wondered how you are doing.
 

Mandy76

Registered User
Jul 25, 2019
50
0
Hi there wondered how you are doing.

Sorry for the late reply. My mother is now in a care facility. She became totally delusional and was inconsolable, so we had to get the memory clinic nurses to come to the house and take her to the hospital. She was there for 5 weeks, then transferred to a dementia unit where she has been since the end of January. She will never be back home again.

She is in a state of constant delusion and no medication has helped at all. Yesterday when I visited she was trying to get a bus home and was talking about going to a Christmas church service, and earlier when my dad was visiting, she thought she was at the butchers and went ballistic because her 'groceries hadn't been delivered'.
 

Sujay

New member
Aug 28, 2020
1
0
We are in the same boat with my mother with LBD. Physically she is okay but psychologically it is getting impossible for my dad to manage. I work full time so am only available in the evenings and weekends to assist him with her. We have had her on every medication available but nothing has worked. She is on rivastigmine patches, diazepam, trazadone, quetiapine (anti-psychotic) - nothing makes one bit of difference.

She is distressed for many many hours each day - terrified of attackers, rapists, accusing my dad and me of stealing and harming children. She is constantly looking for her mother and thinks my dad is her own dad (he was a beast of a man so she is angry that he is there) and she thinks I am her sister, or a stranger. She just sits and cries in terror for hours and hours, and we cannot console her as she does not recognise us.

The memory clinic are considering taking her into hospital for assessment, but we know that she will refuse to go. We just don't know what to do - my dad cannot cope as she is verbally abusive to him and blames him for all her fears. Last night she accused me of kidnapping my younger self! She was howling about her young child (me) being stolen by me (a stranger). We could not console her at all.

No real advice for you, sorry to say, but you are not alone in your struggles with this. It is a terrible situation, it really is. My heart goes out to all affected by this condition.
We are in the same boat with my mother with LBD. Physically she is okay but psychologically it is getting impossible for my dad to manage. I work full time so am only available in the evenings and weekends to assist him with her. We have had her on every medication available but nothing has worked. She is on rivastigmine patches, diazepam, trazadone, quetiapine (anti-psychotic) - nothing makes one bit of difference.

She is distressed for many many hours each day - terrified of attackers, rapists, accusing my dad and me of stealing and harming children. She is constantly looking for her mother and thinks my dad is her own dad (he was a beast of a man so she is angry that he is there) and she thinks I am her sister, or a stranger. She just sits and cries in terror for hours and hours, and we cannot console her as she does not recognise us.

The memory clinic are considering taking her into hospital for assessment, but we know that she will refuse to go. We just don't know what to do - my dad cannot cope as she is verbally abusive to him and blames him for all her fears. Last night she accused me of kidnapping my younger self! She was howling about her young child (me) being stolen by me (a stranger). We could not console her at all.

No real advice for you, sorry to say, but you are not alone in your struggles with this. It is a terrible situation, it really is. My heart goes out to all affected by this condition.
Hello, I’m new on here.
My dear Mum of 81 has just been diagnosed with LBD and reading your description sounds like my Mum.
The hallucinations were her first obvious symptom and have plagued her ever since. She started off with seeing “a plane crash in her garden, out of which came many people who then took over her back garden to perform nightly shows for people to watch”. She quite enjoyed them at first and was very animated in her detailed description of what the show was. But then “the people started to dig tunnels in her lawn and were coming into her house. The people have their mouths stitched up and their eyes are hanging out on bloody threads. Some of them have fish coming out of their peeling back scalps with maggots in the fishes mouths”. My poor Mum was terrified so we moved her in with us but they followed her and everyday we have to “get rid of the snakes in her room, shoo people away who have big knives, clear dead people and babies out of her bed” She lives in a terrifying world. She now takes Lorazepam and this seems to have taken the edge of the hallucinations but she still sees them. She has become paranoid accusing her partner of having an affair and crying inconsolably about this. She thinks that there ore 2 of everybody and often asks if I’m“ the real one“ or “the other one”. She doesn’t recognise me, despite living here (She thinks it’s a care home) and often asks me if I know her daughter or will say “ you remind me of my daughter”. One thing that really soothes her that we came across by accident is Baby Annabell dolls. She cuddles them pretty much all day. They go everywhere with her and sleep in her bed. She talks to them, is constantly kissing and petting them, the fact that they have batteries and can “babble” back is the icing on the cake. She absolutely adores them and the comfort she gets from rocking and holding them has been so beneficial. She wakes very early and when I go in to her in the morning the beautiful smile she gives me just melts my heart.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Hello @Sujay welcome to DTP
it’s a fiendly and knowledgable place to exchange views and knowledge
I hope now you have found the forum you will continue to post
 

Mandy76

Registered User
Jul 25, 2019
50
0
Hello, I’m new on here.
My dear Mum of 81 has just been diagnosed with LBD and reading your description sounds like my Mum.
The hallucinations were her first obvious symptom and have plagued her ever since. She started off with seeing “a plane crash in her garden, out of which came many people who then took over her back garden to perform nightly shows for people to watch”. She quite enjoyed them at first and was very animated in her detailed description of what the show was. But then “the people started to dig tunnels in her lawn and were coming into her house. The people have their mouths stitched up and their eyes are hanging out on bloody threads. Some of them have fish coming out of their peeling back scalps with maggots in the fishes mouths”. My poor Mum was terrified so we moved her in with us but they followed her and everyday we have to “get rid of the snakes in her room, shoo people away who have big knives, clear dead people and babies out of her bed” She lives in a terrifying world. She now takes Lorazepam and this seems to have taken the edge of the hallucinations but she still sees them. She has become paranoid accusing her partner of having an affair and crying inconsolably about this. She thinks that there ore 2 of everybody and often asks if I’m“ the real one“ or “the other one”. She doesn’t recognise me, despite living here (She thinks it’s a care home) and often asks me if I know her daughter or will say “ you remind me of my daughter”. One thing that really soothes her that we came across by accident is Baby Annabell dolls. She cuddles them pretty much all day. They go everywhere with her and sleep in her bed. She talks to them, is constantly kissing and petting them, the fact that they have batteries and can “babble” back is the icing on the cake. She absolutely adores them and the comfort she gets from rocking and holding them has been so beneficial. She wakes very early and when I go in to her in the morning the beautiful smile she gives me just melts my heart.

Hi Sujay - sorry to hear what you are going through. Your poor mum! What horrible hallucinations!

My mother also thought people had duplicates and thought her house was a duplicate of her "real" house. It's called Capgras Syndrome and it can involve people, places and objects. My mother thought that me and my dad were identical impostors who had kidnapped the "real" us and were now trying to kill her.

Funny that you should mention the doll that has helped. We got a robotic cat for my mum that moved and purred and miaowed and it made a big difference to her.

She is in a care home now and I haven't seen her in 5 months due to the lockdown but I have an appointment to go tomorrow night for a 30 minute outdoor visit. I hope she recognises me!
 

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