Real stories

Caring for my mum with Lewy bodies dementia after Dad died

my mum has vascular dementia, 74 dad her main carer died in January 2023 after 52 yrs of marriage.we cared for mum till May 2023 then she went into a care home. for a 4 week trial .she could not get her medication sorted out to calm her for 3 weeks .then she received her medication for 3 days.. of her 4th week trial .in this Time it was hard but she was settling getting used to staff ,noises leaving her home missing my dad .she even got her hair done ,she was looking well .then the manager put her upstairs to the secure unit .we are back to square one. she is catatonic again .she's confused and terrified again .I found her very lost n lonely. no socks on ..she was cold and a cut on her elbow with no plaster .I did say to the duty manager. now the manager wants to see me ,the manger says she is angry and upset at my! complaint ! mum did not act like this at home .she is not sleeping and lashing out .I was upset at seeing her bk to being so scared ,I just broke down .I thought 4 weeks trial ..wasn't long enough..no communication ! its heartbreaking I can't get mum out of my mind .sick with worry .

I don't know what to do, I believe my husband who is 94 years old though not diagnosed with dementia, I believe from a long while is suffering from dementia. He accused me of having men coming to the house, he gets very agitated, he does not eat from me all he does, he's got a driver who he asked to get him take out, he doesn't want me to be involved in his affairs, he's now accusing me of stealing from him, it is si fustrating, I am at my wits end. I can't lead a decent conversation with him. The most amazing thing is that he communicates well with outsiders. Than i find difficult to understand.

My husband was diagnosed with LBD at the beginning of the first lockdown, He was a bit forgetful at first ,then he started to have sleepless nights acting out dreams ,rather they were more like nightmares we were being bombed people were trying to kill us some were even more horrible. I took him to the doctors he said it was a water infection. he had medication for it,but of course it didn't work. We had so many sleepless nights,back to the doctors he did a memory test ,Derek answered almost all of the questions. Anyway time went on then he just couldn't have a wee,so I got him to the hospital ,tests were done MRI and CT scan,then we were told he had dementia,
He came home after that it just got worse no sleep properly for 6 weeks,bad nightmares walking about all night hiding things. He was put on medication but it did nothing to help.
He was sent for a DAT scan and this is where it was confirmed he had the LBD. It seemed like there was no warning of the Parkinson's or dementia it was like WHAM BAM there it i
He can't walk properly shuffles and needs help to walk sometimes he forgets how to ,many times can't feed himself hand eye co ordination is none existent. There have been times when he won't eat or drink i use a syringe to get fluids into him He doesn't recognise me most of the time ,calls our son another name,mhe does sometimes ask about our daughter by name . Each day you never know what you are going to get .Yesday was a bad day because of how he gets up and down you can't leave him on his own ,he was constantly getting up and down walking few steps and trying to sit down where there was no seat,this went on from 10am till carers came a 7.30,
I do have a sit twice a week for 3 hours and a all day sit every 2 weeks,I normally spend time with my daughter and granddaughter.
I know this seems more like a essay ,but Derek has gone from a healthy man where he ran about with the kids even when he hit his 70th birthday. Derek is now 74 and he has only had this for 2 years ,but to see his weight loss and his overall health you would think he has had it for years .

Derek is

I'm so lost my mum has dlb really hearing voices says it's mental cruelty hallucinations are bad she's so distressed my brothers want to put her in a home..it would break her heart I want to hold on to her as long as I can my dad is so nasty with her no patience he's a gambler so she's affecting his routine he wants her gone it's me against 4 males that don't understand or care 😢

My dad has Parkinson disease with Lewy body dementia he was diagnosed a few months ago so it’s early days Reading other people story’s really helps. Because I feel so lost with it all this may rob him but he will always be my dad x

Hi thank u for sharing your story ,
It’s similar to mine I detest dementia your 100% right .
My mum had lymphoma stage 4 cancer & had R-chop chemotherapy.
Mum survived 🙏 & beat the awful cancer , but the chemotherapy destroyed her good cells as well as the bad cells .
Heart failure, copd, Lewy body dementia crept in .
I cared for mum for 8 years but the Lewy body dementia kicked in it was awful .
On my birthday this year mum was took in a carehome for rest bite, her hallucinations uncontrollable ,mum would not eat ,mum would lash out .
(It broke me. )
When mum was in rest bite she set fire to the home , mum was assessed & said how on earth have I been coping .
The social asked for a emergency meeting & explained mum is not safe she needed to go in a carehome permanent.
I feel heart broken , guilty, A failure .
I wear a necklace around my neck with my name on so she may remember me .
If mum new what card she would be dealt with I think she would not of had the R-chop chemo treatment.
Mum weighs 6 + stone the dementia is taking over it’s awful to see .
Dementia is so cruel , please look after yourself xxxxxx

Thank you Louise for your story. I also had experience of caring for someone with Lewy Body Dementia - my husband - and I found it a lonely, difficult journey. Since his death I have created a Peer Support service for people affected by LBD called Lewy Buddies UK. As well as personal support, we hold support meetings on Zoom, hosted by RareDementiaSupport at UCL. It’s good to know that people with the diagnosis, and family caters, are not alone.

I know exactly how you feel, I bought my mum, who is only 65 diagnosed with alzheimers to live with me and my family. Services are very sparce and it takes a very long time to engage with the limited services that are available. I have 2 siblings who take my mum for a few hours when they can. I'm on a waiting list for a social services assessment. We have faced and are facing very difficult times and situations within our own family and some days I will just burst into tears several times a day. Each day is physically tiring , it's mentally draining and a complete emotional roller coster. It can of course be very rewarding and the good moments are amazing and priceless and remind you why you are doing what you're doing.
I wish you and your family well and I hope you all manage a lovely Christmas and New year.

I can empathise with your situation. My mum had Lewy Body dementia with awful hallucinations. My dad tried his best to care for her but she kept accusing him of all sorts of things, throwing him out of the house, angry and agitated. Eventually she was admitted to a secure unit, sectioned a few times and finally discharged to a nursing home on a mix of medication. Thankfully mum went through a more content stage for a couple of years and died peacefully after 5 years of torment in October.
My dad was diagnosed with vascular dementia a year ago and is still able to live independently.
You're right that it doesn't just affect the person with the diagnosis but those close to the person and alienates friends.
I pray constantly for a treatment/cure or something to make dementia have less of an impact to those affected.

Dear Louise, thank you for taking the time to share your story which I know will help and encourage others who may be struggling with their own journeys of caring for a loved one. My own mum died of an eventual stroke after living bed bound in my home for 4 months not understanding who we were but knowing we loved her. The reason I know this is because after spending 6 weeks in hospital following her previous stroke she was beginning to shut down. I knew she wouldn’t survive long in an unknown environment so decided to take her home and care for her myself. Within days she came alive again, looking around and responding and eating again.
My message to you is even though your mum may be unable to express her gratitude please know without doubt that in her heart she loves you more than you know. What you are doing for her is quite remarkable, against all the challenges you face you are still there for her. I wish you strength and resilience to get through this most difficult time, be proud of yourself, it is the greatest gift we can ever give a parent. You are a wonderful lady ❤️

Thank you for sharing your experience Louise. Having cared for my mum 8 years ago when she was living with dementia, I can't begin to imagine how difficult it must have been for you during lockdown with little outside support. We never had a diagnosis of which type of dementia my mum had, but, like you, I am now convinced she had Lewy Bodies. She was also sectioned, so I can empathise with your experiences. I also think my mum was drugged so much (understandably so) that her heart failed. Now really is the time to care for yourself, not so you can look after others, but just because you deserve it. Stay strong - you are amazing.

Thank you Louise for sharing your personal story about caring for your Mum who is living with dementia . I feel that it gives a real insight into how such a diagnosis can affect not only the person living with dementia but also those closest to them , who love and support them.
It is good to hear how the Alzheimer’s Society has helped you and your Mum with the various support groups available. You are truly amazing Louise. Lovely photos of you both.

You have written so honestly Louise, and your caring nature really shines through. Your Mum is really fortunate to have such a caring daughter, and even if she doesn’t or can’t express her thanks, she wouldn’t be able to cope without your constant help. The Alzheimer’s Society feels like a strong security net, and they are wonderful at suggesting solutions to the many problems Carers face. Keep smiling Louise.