Real stories

Caring for my mum with Lewy bodies dementia after Dad died

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.

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.

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.

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.

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.