New Lewy Body Dementia

[Tea and. toast]

Hi Linton I hope you've had a good day and your grandson was ok going to school today. Hope he has some support plus the family. It must be a worry for you. I've walked to the local post office a couple of times during Christmas and round the doors. I would normally walk further afield for a few hours on a weekend or during the light nights but that has been curtailed.

I didn't get to choir unfortunately.I was set to go but whilst I was in the dining room emailing the choir director I heard a bgt clatter in the sitting room. Dad had another fall and was lying flat out. Dad and I managed between us and a dining room chair to get him up. He was feeling a bit ropey but nothing broken and he didn't bang his head..So then I didn't want to leave him until my brother arrived. I had been asking Dad if he needed the loo but he said no. Then after tea I knew he needed the toilet. So had to sort him clean up brother helped a bit. I showered Dad. So it has been..... well. Felt like crying twice in 24 hours. Dad seems to be losing his balance and falling backwards. Bro and I aren't sure if Dad is forgetting to go to the toilet sometimes or if he feels uneasy about going.

Hopefully we will have a quiet night and I may get to choir next week. Back at work tomorrow xx

 

[Linton]

Tea and toast I feel for you so much.. Its such a strain... We've had a few falls where I have had to ring one of our sons to help get him up.. Balance such a problem.. Like you so far no major injuries but its worrying.. We now have walking aids..walking stick and zimmer.. But he will resist using them... All the aids we have provided as still waiting for the assessment from social services...!!! Mean time we just get on with it.. Hope you get to choir soon. Xxx

 

[Tea and. toast]

Hello Linton thanks for your thoughts. Dad fell again but outside on Tuesday when I was at work. One of my neighbours rang me and said Dad had been found on the ground near another next door neighbours drive. They brought Dad in the house and administered first aid to a cut near to Dads eye. Dad has wandered a few times but not for a while and it was really windy on Tuesday so not the best day to wander. .

So left work and another trip to A and E. My neighbour offered to take us but didn't want to put them out. I told A n E that Dad had been complaining about pain in his hip area after Monday nights fall so he was xrayed. Nothing broken thank goodness, steri strips on cut other tests were ok though he does have a bit of irregular heart beat. On Wednesday Dad had a shiner but seemed ok so I went to a meeting but then the befriender who has just started to visit Dad, rang/ txtd me to say Dad had been drowsy and bit confused. So I went home and rang my manager who had said first thing do I need to be off work, Couldn't get through to 111 or A n E dept so just monitored Dad. His eye lid had become swollen and very bruised which had developed since early morning. Dad did perk up and ate his sandwiches when the carer came at 1 pm. His eye now has a bruise all round his eye. So will play it by ear later today. Not great for the first week into the New year.

I am saddened and surprised that you have had to provide your own walking aids and are waiting for an assessment from Social Services. Dad first fell in the street either in 2017 or 2018 when I was walking in Cumbria. He was ok and independent then, had a few memory problems but he thought he was fine and didn't want to be tested . Neighbours took him home and looked for contact numbers then found him on the floor later on and rang an ambulance. My neighbour found contact numbers and family came until I got home.I took Dad to A n E when I got home. A n E referred Dad to the Falls clinic. Dad was assessed had lots of tests, saw physio, went to classes and they provided a walking stick and special stockings for his postural hypotension plus meds. An OT also did a home visit and a grab rail was put in the bathroom and the fitter from Age Concern persuaded Dad to get an additional banister which is now a Godsend.

Dad started to change and develop other health problems in November 18 and I took him to the Dr who then did a memory test and the process began. Oh no I am writing an essay. Will stop. Adult social care got involved after a referral for me from a District nurse who visited Dad to take his bloods in Jan 19. So Dad got carers since Feb or March 19 so I could in theory get to work on time and not have to go home at lunchtime to encourage Dad to eat .Through the multi disciplinary team I was able to get Dad a bath seat in the summer last year after an OT visit. So I hope maybe you could get a referral through your GP to Falls Clinic to get additional help and/or resources?

I can empathize regarding your worry, frustration that your husband won't use walking aids. Dad wouldn't think to use his walking stick when wandering out ( a worry) or in the house. Another thing I did last May was ask the Nurse Practitioner at Dads surgery (after a bad fall) to make a referral to wheelchair services for a wheelchair for Dad so I could take him out as he gets tired walking. Eventually got one. It has been really useful to take Dad to hospital appointments as you will know how it is a process to get PWD ready and out to where ever you need to be.

Writing this has brought it home to me how much Dad has changed in just over a year and that a lot has been going on. But he is still doing ok considering. xx

 

[Banabarama]

Hello
My husband with LBD fell a few times on 20 December and I panicked and called an ambulance. He has been in hospital with delerium and now I’m told that he is unlikely to come out of delerium, which now could be just a further dementia stage. He hasn’t eaten for a long time now and doesn’t drink much. He is agitated unless just left and it seems he is dying. At least he could be much worse than before and is most unlikely to be able to walk or perhaps stand. It’s sudden, it’s cruel and it is devastating. But part of me thinks no I don’t believe it - he will come round. I don’t know what I’m asking here but if anyone is listening. Maybe I should have freshly posted.

 

[Linton]

Hi @Banabarama and Tea and toast .. We're all at different stages of this awful LBD illness.. And no idea when the next stage will start... My OH was diagnosed last February via referral to memory clinic.. After symptoms which I now think have been there for a few years.. On social service list for home assessment in July.. Still waiting and have been told it won't be long now!!!!!
Have no help other than family and so far cope most of the time... The future will be ever more difficult which we will have to deal with as it comes... A doctor came from the adult mental health team to check on his meds and was surprised he didn't have a physiotherapist coming... So will contact doctor to ask... No one tells you what you can do.. Or should have access to... Its the responsibility which I find draining.. Oh well... Keep going... Love to all on this journey...

 

[Banabarama]

G

Hi @Banabarama and Tea and toast .. We're all at different stages of this awful LBD illness.. And no idea when the next stage will start... My OH was diagnosed last February via referral to memory clinic.. After symptoms which I now think have been there for a few years.. On social service list for home assessment in July.. Still waiting and have been told it won't be long now!!!!!
Have no help other than family and so far cope most of the time... The future will be ever more difficult which we will have to deal with as it comes... A doctor came from the adult mental health team to check on his meds and was surprised he didn't have a physiotherapist coming... So will contact doctor to ask... No one tells you what you can do.. Or should have access to... Its the responsibility which I find draining.. Oh well... Keep going... Love to all on this journey...

The unpredictability is one of the hardest aspects of this disease. Today I looked back on my posts over 2019 and whilst I thought it had only got really bad in the recent months I call see there have been lots of really difficult times since I joined, and I’m not a regular poster.
As you say, love to all, and good luck to us all.

 

[Tea and. toast]

Hello
My husband with LBD fell a few times on 20 December and I panicked and called an ambulance. He has been in hospital with delerium and now I’m told that he is unlikely to come out of delerium, which now could be just a further dementia stage. He hasn’t eaten for a long time now and doesn’t drink much. He is agitated unless just left and it seems he is dying. At least he could be much worse than before and is most unlikely to be able to walk or perhaps stand. It’s sudden, it’s cruel and it is devastating. But part of me thinks no I don’t believe it - he will come round. I don’t know what I’m asking here but if anyone is listening. Maybe I should have freshly posted.

Hello Banabarama I am so sorry to hear your husband has become more poorly all of a sudden. It must be such a worry for you. There are other sections on the forum where you may be able to find either advice or support of your situation. How is your husband today? My dad was taken poorly last summer which was first thought to be a stroke then they weren't sure what was happening. They then said it was a seizure due to meds dosage being increased and Dad had Delirium too. Dads language was all to pot garbled he was restless all the time then he became quiet and vacant as if he was looking through me on the ward. It was a scary time, felt so alone despite having siblings and friends. The Delirium nurse rang me at home to see what Dad was like before the seizure had happened. Fortunately Dad came back. I hope your husband is comfortable and you have support. Sending you a hug.

 

[Tea and. toast]

Hi @Banabarama a

Hi @Banabarama and Tea and toast .. We're all at different stages of this awful LBD illness.. And no idea when the next stage will start... My OH was diagnosed last February via referral to memory clinic.. After symptoms which I now think have been there for a few years.. On social service list for home assessment in July.. Still waiting and have been told it won't be long now!!!!!
Have no help other than family and so far cope most of the time... The future will be ever more difficult which we will have to deal with as it comes... A doctor came from the adult mental health team to check on his meds and was surprised he didn't have a physiotherapist coming... So will contact doctor to ask... No one tells you what you can do.. Or should have access to... Its the responsibility which I find draining.. Oh well... Keep going... Love to all on this journey...

Hello Linton thanks for your reply. That is so unfair you have waited so long for a home assessment from social services. Do you have a Dementia support worker/ group in your area or a carers centre who can offer support, advice or perhaps act as an advocate for you if need be, to see what you could have access too? Or chat to your GP or your husbands GP? You will probably done this already so apologies if you have. When Dad was diagnosed he was given a book ( well it was given to me to look after called the Dementia Guide-living well with diagnosis by the Alzheimer's Society/NHS.

Before Dad was diagnosed or any carer help my manager advised me to go to the Carers Centre, just to chat to someone after having a bad time with Dad. I later came across the Dementia Support worker partly through my work. She was great and would do home visits or could meet you wherever it was convenient. Sadly she died in November. She gave me the book Caring for a person with Dementia a practical guide. Everything is trial and error looking after my Dad and after reading things on the forum I don't always get things right.Dad has been challenging going to bed a few nights this week so I need to handle that better. It does feel like a big responsibility at times.

I think finding out information can be hit and miss. My cousin told me that I could ask Dads GP or nurse practitioner for a wheelchair referral for Dad. A cashier at a supermarket whose husband had a stroke, told me to buy bed pads from the children's section as were cheaper and about. puppy pads.I hope you and your husband get the support you need soon. Love to you and everyone too. Some flowers to brighten up the day.x

 

[Banabarama]

Hello Banabarama I am so sorry to hear your husband has become more poorly all of a sudden. It must be such a worry for you. There are other sections on the forum where you may be able to find either advice or support of your situation. How is your husband today? My dad was taken poorly last summer which was first thought to be a stroke then they weren't sure what was happening. They then said it was a seizure due to meds dosage being increased and Dad had Delirium too. Dads language was all to pot garbled he was restless all the time then he became quiet and vacant as if he was looking through me on the ward. It was a scary time, felt so alone despite having siblings and friends. The Delirium nurse rang me at home to see what Dad was like before the seizure had happened. Fortunately Dad came back. I hope your husband is comfortable and you have support. Sending you a hug.

Thank you Tea and Toast. He’s definitely coming home now as the other option ruled out. But I do think we are quite near to the end.

 

[Linton]

Hi so sorry your OH has become worse... Its terrible how we never know when the next stage will happen... But we know it will come... And will have to cope somehow... My thoughts are with you and hope you find strength to keep going.. We're going through a managable period.. We'll compared with what has gone before... But I know it won't last... Hope you find any help you can get xxxx

 

[Tea and. toast]

Hello Banabarama as Linton has said, I hope you will have the support that you and your husband needs to bring him home and keep him comfortable.My thoughts are with you. Some flowers for you too.xx

 

[Banabarama]

Hello Banabarama as Linton has said, I hope you will have the support that you and your husband needs to bring him home and keep him comfortable.My thoughts are with you. Some flowers for you too.xxView attachment 61964

Thank you so much Tea and Toast. It’s still not happened - still in hospital - but hopefully Thursday or Friday he will be. back. I’m so nervous.

 

[Banabarama]

Hi so sorry your OH has become worse... Its terrible how we never know when the next stage will happen... But we know it will come... And will have to cope somehow... My thoughts are with you and hope you find strength to keep going.. We're going through a managable period.. We'll compared with what has gone before... But I know it won't last... Hope you find any help you can get xxxx

Thank you Linton. I only got growls yesterday. He’s very cross and scared. So hoping for more calm when he finally gets home. I still can’t quite get my head round this sudden drop from walking around and eating his meal sitting at dining table to bed bound and not being able to communicate in words only aggressive actions in such a short space of time. I can’t find anything to say this happens. When I thought it was just temporary delerium I was able to grasp it but now it’s most likely (although not 100%) a permanent state my mind cannot really process it.

 

[Ready Breck]

My partner was diagnosed with Lewy Body dementia in 2014 after several hospital stays with uti’s that occurred for a few years previous. I was told that water infections can contribute to dementia. He was 91 when diagnosed. He has had many health problems in his life and then in 2012 he had osteomyelitis in the ear which was very painful, life can be very cruel it is heart breaking to watch a loved one go through this torture. A nightmare for us all but worse all for him. He is such a fighter but his mood goes from being suicidle to being glad he is still alive. He is now nearly 97 can hardly hear or see, but he always says to me“night night God bless hope to see you in the morning.” This is my first post on this sight, good to read other carers stories.

 

[Shedrech]

hello @Ready Breck
a warm welcome to DTP
your partner sounds to be an amazing man ... I'm sure it's tough on you both ... but what a lovely way to end each day
now you've found us, do keep posting