I find LWD very difficult to explain to people. Friends will say "Oh he is quite good today, he remembered my name etc". Memory is not the main issue with LBD, it is more disorientation etc. We are now finding co ordination a huge issue. I need to help him dress but have to physically put his foot into his sock and shoe etc. He doesnt understand when I simply give instructions on where things are etc.
New Lewy Body Dementia
- Thread starter Larker
- Start date
Mixed dementia- you name it Mums got it ( almost!!!)
Memantine to be prescribed- respite care sorted for Mum so she can visit my fading Dad
Me I’m numb what with own health & Dads rapid deterioration, like jack & jill - mum will go following after!
Life’s bittersweet at the moment!
Need to get myself into gear!!
But my vavavoom has vamoosed!
Somethings you just can’t get on amazon!
Va va voom is one of them!!!!!
Memantine to be prescribed- respite care sorted for Mum so she can visit my fading Dad
Me I’m numb what with own health & Dads rapid deterioration, like jack & jill - mum will go following after!
Life’s bittersweet at the moment!
Need to get myself into gear!!
But my vavavoom has vamoosed!
Somethings you just can’t get on amazon!
Va va voom is one of them!!!!!
Hi Larker... Me too.. Dressing and undressing a big challenge.. Lifting his feet or arms on request is impossible.. Now eating is becoming a problem.. Cutting his food and getting fork to mouth... Each day brings more challenges... Can't think about the future.. Today's a bad day.. Tomorrow might be a better day... Can but hope...... Xxx
My husband will come to me and ask me to do up a button, or fasten his belt, or put his watch on his arm for him. I also remove the odd t-shirt or jumper and put it on the right way round. I do all these things for him but I wonder about he must feel about this. He doesn't say.
Hi
just signed up today. My husband has also just been diagnosed with lewy body dementia. He is having a bad day and of course hes blaming me. I recently had a joint fusion in my foot this has been the hardest few weeks. I am sure I can cope but it must be scary for my husband too but I am getting tired of being the blame and then I feel guilty so hoping this forum can help. So sorry to hear your husband is going through the same its a dreadful illness. It changes everyones life. I have no family and at times like this you know who your true friends are. Take care xx
Welcome to DTP @karenand benny
Please keep posts as you’ll get lots of support here. You may find this thread helpful https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Hello @karenand benny and welcome to DTP sorry you needed to join the forum but I’m sure you will find it a friendly and supportive forum.
If you are caring on your own please keep an open mind of getting outside help when things get overwhelming.
SS will do a care assessment for your husband and a carers assessment for yourself if requested maybe something for you to think about
Now you have found us I hope you will continue to post
If you are caring on your own please keep an open mind of getting outside help when things get overwhelming.
SS will do a care assessment for your husband and a carers assessment for yourself if requested maybe something for you to think about
Now you have found us I hope you will continue to post
Hi everyone.. My OH has LBD. And have gone through really tough times with the hallucinations.. Especially due to urine infections... Some respite now as meds prescribed by syciatric doctor from mental health team from local authorities are really proving helpful.. Don't know how long this will last...but so glad of the 'managable'.. Just situation.. Strength to all going through this nightmarexxxxxx
Dear Linton and everyone else
I hope you survived Christmas.
I would be interested to know what medications you now have for the LBD problems.
My husband had LBD and right now he is seriously bad. he has been in hospital since 20th and if anything he is getting worse. He can’t be discharged unless there are 2 full time carers in the house. I’m speaking to an agency who are assessing tomorrow. But this is scarey. He is lashing out shouting spitting biting and punching. Hospital making things worse but trying to organise over christmas very hard. Can anyone help with with advice. No abnormal bloods or infections.
Hi banabarama.. My OH has Quetiapine one at bedtime.. From being anxious and demanding I ring the police to tell the men in the house to go... He was afraid they were there to hurt me.. And we had to sit in the bedroom from 4 in the evening till bedtime. (they never appeared in that room).. He is now really calm... If the man appeared he takes it in his stride and most of the time ignores it.. Don't know how long it will last.. But for now we enjoy a more relaxed existence... All mu good luck to youxxx
Thank you Linton. I wasn’t sure there were any drugs which were safe to use with LBD, other than the rivastigmine my husband uses. Sometimes I think I misunderstand the medics, my mind is in such a fug with all of this!
Hi .My dad also has LBD.He had rivastigmine patches and quetiapine, both of which helped in the early stages.After bouts of aggression , these were both increased. He’s in hospital with a chest infection at the moment and they have sedated him with lorazepam (after hitting a nurse and having 2 security guards hold him down)Everything is magnified when an infection is involved.His hallucinations are horrid and frightening for him as well as others. I agree it’s hard to explain to people what LBD is.We can’t find what triggers dads outbursts.When it happens it’s like he’s not seeing what we are.Its like a switch is turned on and he’s in another world.So quick to start and then afterwards he can be aware of what he’s done which really upsets him .Untill this dreadful disease, I was like most people, thought dementia was just forgetting things.How wrong was I. I want to wish you all well and please , please get help .Dont struggle on especially if aggression is involved. Dad had to go into a carehome as I struggled and had carers breakdown.There is only so much we can do and then others who don’t care 24/7 ,need to take the strain. Virtual hugs to all ,going through this horrible illness.
Hello Juliennatch my Dad had his diagnosis of LBD confirmed on 23 December as the consultant was unsure if it was AD with LBD or not. Dad had an MIBG scan. He has had some hallucinations which I would say are mild eg seeing children calling out for Tommy to help him when I was trying to get him sorted for bed and seeing Marvin the ghost who looks like us thank goodness. Though in November I found Dad sitting on his bedroom floor at 6 am after he called out. he had fallen over but his bedroom looked like a bomb had hit it. Bedding all over on floor and bed drawer pulled out so not sure what had happened and if it was linked to LBD.
Dad sometimes is challenging when getting ready for bed (needs to take wet pull ups off) and has hit out. When I have told him later that he had hit me he said never in the world, sorry about that.
I just hope Dad doesnt develop bad hallucinations or becomes more aggressive. He wouldn't get showered or washed this am for the carer so I was called upon to help. He wanted to go downstairs ( with no clothes on) and get washed. Eventually he got washed by the carer in the bedroom with a dish of water. He is seeing a Care of the Elderly consultant this afternoon as he has been falling a lot so hope he stays dry or goes to the toilet.
Dad isn't on meds for AD or LBD. He was given two different drugs, first one made him wee more and the second- Galantamine when the dose was increased Dad had a seizure (thought it was a stroke) and was rushed to hospital in the summer. Now the consultant thinks the seizure maybe due to LBD He cant be given anymore AD drugs because of the seizure.
Dad does fluctuate during the day. I have been exasperated and in tears at times when trying to get him to bed undressed. Though he is still a lovely Dad underneath and has other health issues too. I never thought 2019 would turn out like it did. But we are lucky compared to some. Sorry for the long post.
Dad sometimes is challenging when getting ready for bed (needs to take wet pull ups off) and has hit out. When I have told him later that he had hit me he said never in the world, sorry about that.
I just hope Dad doesnt develop bad hallucinations or becomes more aggressive. He wouldn't get showered or washed this am for the carer so I was called upon to help. He wanted to go downstairs ( with no clothes on) and get washed. Eventually he got washed by the carer in the bedroom with a dish of water. He is seeing a Care of the Elderly consultant this afternoon as he has been falling a lot so hope he stays dry or goes to the toilet.
Dad isn't on meds for AD or LBD. He was given two different drugs, first one made him wee more and the second- Galantamine when the dose was increased Dad had a seizure (thought it was a stroke) and was rushed to hospital in the summer. Now the consultant thinks the seizure maybe due to LBD He cant be given anymore AD drugs because of the seizure.
Dad does fluctuate during the day. I have been exasperated and in tears at times when trying to get him to bed undressed. Though he is still a lovely Dad underneath and has other health issues too. I never thought 2019 would turn out like it did. But we are lucky compared to some. Sorry for the long post.
Dear tea and toast.. You have my dearest sympathy.. Dealing with L B D is the hardest thing.. Watching you're loved one going through the horrendous hallucinations is unbelievably difficult.. In another world which to us is unseen is so upsetting.. And their distress when they remember what they have been like is soul destroying.. Can only give all the support you can muster... For as long as you can... And at the same time try to keep a sense of your own sanity... All my thoughts are with anyone dealing with this... Love to all of you
Hello Linton, thank you for your kind words. My heart goes out to you and all the other carers. I am glad you and your OH are having some peaceful times at the moment due to medication. Long may it continue. I can't imagine how hard it is for you to have an OH with LBD when you would be thinking of growing old together and doing lovely things together. It has been quite a good day (Friday). The hospital rang to ask if I could take Dad earlier than appt time as folk had cancelled. I said I would try as Dad has dementia and it takes time to get him sorted. We got there early managed to get parked and its great I had got Dad a wheelchair to take him out so could get him into the hospital quickly and without tiring him out.
The consultant was lovely. Dad had to have his height measured and lying to standing blood pressures done before seeing the Dr. It was hard for Dad to get his height measured and the nurse and I got Dad up as quickly as possible to measure his standing BP. So a bit of a change in Dad. The consultant said the falls were most likely due to Dads illness progressing I asked if there could be a problem with inner ears but he said no and it wasn't good to try and out Dad though balance tests. He explained about the falls and also went on to talk about Dads food intake and what can happen.Though Dad has been referred to physio to see if they can help. He went to falls prevention classes a couple of years ago when diagnosed with postural hypotension. Bloods were also taken to see how Dad blood sugars have been in case they have dropped too much.The consultant asked about home, what help I had, was I coping ,that I need to look after myself , resuscitation......
Dad went to bed too without any bother. so happy.. Despite this I've had a bad food day. Walking helps me Linton and singing in a choir.
However only did one walk with the club last year and the Memory walk as a challenge for me. Need cover for Dad to go away walking until the evening. One sibling helps the other does very little. I missed a lot of choir last term as was too tired to go or Dad was visiting A n E. So hope to get back on Monday. I went to the choirs Christmas concert rehearsal which was great. Back to work next week too. Take care and sending a hug.
The consultant was lovely. Dad had to have his height measured and lying to standing blood pressures done before seeing the Dr. It was hard for Dad to get his height measured and the nurse and I got Dad up as quickly as possible to measure his standing BP. So a bit of a change in Dad. The consultant said the falls were most likely due to Dads illness progressing I asked if there could be a problem with inner ears but he said no and it wasn't good to try and out Dad though balance tests. He explained about the falls and also went on to talk about Dads food intake and what can happen.Though Dad has been referred to physio to see if they can help. He went to falls prevention classes a couple of years ago when diagnosed with postural hypotension. Bloods were also taken to see how Dad blood sugars have been in case they have dropped too much.The consultant asked about home, what help I had, was I coping ,that I need to look after myself , resuscitation......
Dad went to bed too without any bother. so happy.. Despite this I've had a bad food day. Walking helps me Linton and singing in a choir.
However only did one walk with the club last year and the Memory walk as a challenge for me. Need cover for Dad to go away walking until the evening. One sibling helps the other does very little. I missed a lot of choir last term as was too tired to go or Dad was visiting A n E. So hope to get back on Monday. I went to the choirs Christmas concert rehearsal which was great. Back to work next week too. Take care and sending a hug.
Hi Tea and Toast.. Music is a must... One of our children got my OH an 'alexa' for his 80th birthday last week.. Its so good for him.. Playing music whenever he wants... For me it's a mood changer whenever I feel the pressure.. Your choir will be the same for you.. Hope you can continue.. I've stopped thinking about what we saw as our future.. And what life used to be like... Now I've accepted this is our life now and all we can do is to make it as good as we possibly can... Not easy but no use giving into thinking only of the bad things.. For now it works... A day at a time.... Xxxx
Hello Linton I hope your OH had a good birthday. The Alexa sounds a great idea.I think I need to listen to more music at home. Choir starts back tonight (Monday)It does make you forget about things when you sing. I've had a bad night with Dad and also on Saturday night when Dad went to bed at 2 am. He wouldn't wake up for the carers coming to see him on Sunday morning so I showered him etc. Tonight had to deal with incident and get him in the shower.Dad said I must be joking when I told him what had happened (an hour later) I do try to hold onto the nice moments but was upset tonight by Dads behavior.I will take a leaf out of your book Linton. We did have a nice Sunday lunch for tea (takeaway from a pub for change) and one of my friends rang for a chat so that was nice. Dad didn't want to go for a run out a shame as it has been quite a mild but breezy day. Nice sunrise too.
Just had some tea and toast so better get to bed. Not sure if I will get to choir but one of my friends would really love me to go.
Re music sometimes Dad has a bit sing to himself. The 12th of Never is a favourite of his.xx
Just had some tea and toast so better get to bed. Not sure if I will get to choir but one of my friends would really love me to go.
Re music sometimes Dad has a bit sing to himself. The 12th of Never is a favourite of his.xx
Hi tea and toast... I really hope you get to the choir.. You must try to take any break you can.. For your sanity.. Just been to my sons house to try to get his son to go to school.. He's having a bad time at the moment at school.. And it gives me some fresh air and exercise as they live near.. Just means leaving my OH for an hour.. Which is just about managable... Hope you have a better day today xxxx
