Louise and Marion sitting outside with a cup of tea wearing gloves and enjoying a conversation

Caring for my mum with Lewy bodies dementia after Dad died

Louise lost her dad at the start of the pandemic a week before her mum, Marion, received her dementia with Lewy bodies diagnosis. After leaving her job to be a carer, and with mental health problems of her own, Louise is trying her best to help her mum live well with dementia.

2020 was a terrible year for a lot of people and I can relate to that. While dealing with difficult family matters, we also suspected that Mum had dementia. We could spot the signs as her dad had died from Alzheimer’s disease.

Mum’s dementia assessment and diagnosis

Mum had a memory assessment in January, followed by an MRI scan. She was only 70 but her score was particularly bad for someone of her age.

She had an appointment booked with the consultant in March for the results and diagnosis. We arrived at the appointment, but we couldn’t go in as lockdown was just starting.

Mum and I were turned away and told that the consultant would contact us by telephone. Two weeks later, my mum was diagnosed with Lewy body dementia.

Our dementia advisers are here for you.

Supporting Mum since losing Dad

The week before my mum received her dementia diagnosis, my dad, Peter, died. 

I was heartbroken. We were unable to have any contact with him at all for the couple of days Dad was in hospital. He died with no-one by his side.

It became clear that Mum needed someone to care for her.

Mum was unable to do hardly anything for herself, extremely confused and hallucinating. I was furloughed from my job as a Pre-school Special Educational Needs Co-ordinator, so I resigned to care for Mum.

What followed was a pretty harrowing few months as we were totally cut off from any professional help at all during lockdown.

Louise and Marion smiling wearing summer clothes outside in the sunshine

Louise resigned from her job in order to care for her mum.

Difficulties with caring for Mum

My life has totally been turned upside-down. I also have mental health problems. There are different things that have happened to me in my life which finally resulted in me being diagnosed with intrusive thought obsessive compulsive disorder (OCD) and anxiety.

Whilst I believe that the things that I have experienced and lived through have in some ways made me stronger, the nature of the illness means that I will never be completely well again. 

My demons are always there in the background. It is a constant battle, and enormous effort to keep them at bay using the techniques that I have learned through therapy and counselling just to be able to function “normally”. 

People tell me that I need to look after myself as I won’t be able to care for Mum if I am ill. I am acutely aware of this, but it is difficult to find time to do the things I know that I need to do to keep myself well. I hardly have a minute to myself.

How dementia affects a family

Dementia destroys other family members as well as the person who has been diagnosed with it. You carry the responsibility for another person’s life and wellbeing on your shoulders 24/7 and 365 days a year. 

Because of the nature of the illness, there isn't often anyone willing or able to support or help you. It can be a lonely existence where you feel torn between the person you are caring for and your family.

Dementia can bring about earth shattering revelations when people relive their past, which you will never be able to properly discuss with them or know if it is true, even if your gut feeling says it is.

Also, the implications of having someone with dementia think that you are somebody else and treat you as though you are, can be extremely traumatic for the carer.

It is so all-consuming. Alzheimer’s Society reminds me that I am still a person in my own right with other commitments such as being a mum, wife, and grieving daughter. They remind me to look after myself physically and mentally and help me work out how to do this.

Marion with her colouring and Louise holding a chicken

Louise finds that being a carer can be a lonely experience.

Lessons I’ve learnt about dementia and relationships

What I’ve learnt from my own experience and from listening to others is that everyone has different starting points in their dementia journey, from the existing relationships that they have with their family as well as their own physical and mental health. 

My Alzheimer’s “family” understands this. They have made me feel that both Mum and I are cared about. It’s like they envelop you in a protective blanket. Some people have never experienced that in their lives before and it gives you the strength to carry on.

While our Dementia Resource Centre was closed during lockdown, they tried to run as many things as they could through online video calls. I attended a few carers meetings on Zoom and I had telephone appointments to speak with my Dementia Support Worker, Grazi.

Lots of people have said (and I agree) that Zoom is better than having nothing at all, but it’s just not the same as being able to attend things in person. It is my lifeline.

Members of the groups are all at different stages on their journey, but we all support each other by being there, listening, crying, and laughing together. We talk about what has worked and what hasn’t and help each other to be prepared for what is to come.

I always feel comfortable to be myself and let Mum be herself knowing that we won’t be judged.

I think that holistic support would be extremely helpful – people who are aware and knowledgeable about both the dementia patient and the mental health patient.

That is yet another reason why Alzheimer’s Society staff are amazing. They are dealing – and supporting people like me – with past issues, on top of the job that they are there to do.

Why I support dementia research

A few years ago, Mum’s mum had been diagnosed with paranoia and taken to a secure unit. Doctors now think that what she had was undiagnosed dementia with Lewy bodies. 

I’m pretty sure from what I have since read, that the anti-psychotic medications they were trying to get right eventually caused her to die from heart failure. 

I take comfort from the fact that, in the time between my nan dying and Mum being diagnosed, research has been done to enable Lewy Body dementia to be recognised and treat it correctly.

I have taken part in various dementia research studies now myself.

Louise sitting next to Marion in her armchair smiling with colouring stationery in the foreground

Both Louise and Marion benefit from attending local dementia services.

Focusing on brief chances of happiness

Coronavirus robbed me of the chance to say goodbye to Dad and give him the death that he, and everyone, deserves as a fundamental human right. 

Dementia also robs people of a chance to say a proper goodbye with the person that you once knew. It is a long, harrowing goodbye interspersed with brief chances for happiness. 

I am trying my hardest to help Mum to live her best life possible under the circumstances.

Alzheimer’s Society is helping me to do this by acknowledging me and giving me a voice.

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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

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Hi Nicolle,
Thank you for leaving a comment for me.
My heart goes out to you. I don't know you, but I know one thing without a doubt - you are definitely not a failure. What you have done for your Mum with everything that you have had to go through is nothing short of amazing. If you could have your "old Mum" back she would be so proud of you and so grateful. I know nothing that I can say will stop you from feeling guilty or heartbroken but please, please be kind to yourself and take care. xxxx

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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.

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Hello Esther,
Thank you for leaving me a comment.
I cannot imagine what it would be like to care for a partner. I'm so sorry you found it lonely and difficult. You are such an amazing person to turn your negative experience into a positive one for others by creating Lewy Buddies UK. I'm going to look it up! I'm sure your husband would have been so proud of you.

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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.

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Hello Denice,
Thank you so much for leaving me a comment. I'm so sorry your Mum has been diagnosed at such an early age.
I know just what you mean about all the tears! My Mum had a little dog who died a few weeks after Dad, so I bought her some guinea pigs as I knew they would be safe when Mum was on her own. At the moment they are in the garage as it is cold outside. I spend so much time out there crying with them and giving them a cuddle. I think they help me as much as Mum.
I hope your social services assessment comes through soon and that you benefit from it.
I also wish you lots more priceless moments. Take care and don't forget to be kind to yourself.

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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.

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Hello Karen,
Thank you so much for leaving me a comment. My heart goes out to you. It's so harrowing to have one parent suffer from dementia, let alone two. I know that everyone's dementia journey is unique so I hope beyond hope that your Dad's one is not such a dreadful one. I hope, like you that we continue to learn how to understand dementia in order to help find a cure. It's people like you who will help this to happen. Take care

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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 ❤️

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Hello Aleks,
Thank you so much for your lovely comment. It meant the world to me and has helped to give me strength. I am so sorry that you lost your Mum. What you were able to do for her must be such a comfort to you. What an amazing person you are. You are right that the bond between a parent and son/daughter is a unique and special one - you were the best person to know how to care for your lovely Mum. She proved this with the way she responded to you. Take care

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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.

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Hello Sally,
Thank you so much for your lovely comment. It meant the world to me. I am so very sorry to hear about what happened with your Mum. My heart goes out to you. Take care

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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.

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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.

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