Lewy Body Dementia Awareness Week - a personal story

Kath Cotton

June 11, 2021

This week is Lewy Body Dementia Awareness Week^[1]. Despite my Dad having had LBD I had no idea the awareness week existed. I guess that’s why we need to raise awareness. Lewy Body Dementia, for those of you who don’t know, is the second biggest cause of dementia in the UK and is basically the delightful double whammy of Alzheimer’s disease and Parkinson’s disease rolled into one.

An article^[2] on my university alumnae page about LBD Awareness Week drew my attention – a personal essay by author Jane Sigaloff about her Father’s journey with LBD. The essay calls for people to share their own stories with the aim of raising awareness and support those who are currently going through it. Like with so many conditions, change starts with awareness, so, with the approval of my Mum and sister, I am sharing my story too.

On reading Jane’s essay I was immediately struck by the similarities between her Dad’s story and mine. First it was the spooky coincidences – her Dad was also called Peter, also diagnosed in 2015, also died in 2019 and also at the age of 76. That was weird, but reading on there were so many other parallels in the way she described her Dad’s journey with LBD that it really struck a chord. We were never given a lot of information and certainly whenever we asked what we could expect we were told there was no set path and therefore we had nothing to support or prepare us for how things would evolve over the coming years. That is certainly something that needs to change.

In recent months I have found myself thinking about Dad a lot more. I’m not exactly sure why, maybe it’s just how grief has panned out for me, maybe it’s because of the pandemic and endless lockdowns, maybe it’s because I have recently moved house and feel like I want him to be a part of a home that I know he will never visit. Almost immediately after Dad died I found it hard to remember what he was like when he was ill. Like I immediately erased those few years and was finally able to remember him when he was well, which I struggled to do in the last years of his life. Jane’s article reminded me of so many things that I had already forgotten.

Things started a good few years before he was diagnosed. There were silly things, like not being able to remember where he’d put his cup of coffee, words stubbornly stuck on the tip of his tongue, or accidentally calling Kidderminster, our nearest big town, ‘Swindon’, the town we had lived near to 30 years previously. Things we all do sometimes, but it became a regular occurrence. On these occasions he would give a little sideways glance, curl the corners of his mouth up slightly and acknowledge with humour that he was ‘having a bit of a senior moment’. These smiles were lovely to see as his facial expressions had started to become a lot less animated, even a little empty and vacant at times. Always a keen walker, he started to become a bit flat footed, not so steady on his feet. Then came the little things that we couldn’t quite put our finger on. Tiny, insignificant things that weren’t wrong but just not quite his usual behaviour. Like he was ever so slightly different to how he had always been.

Then the night-time wandering started. As with so many men his age he had been bothered by his prostate for several years, but his waking gradually became more challenging. He would wake up disorientated, opening the curtains or wandering down the landing in search of the bathroom that had been in exactly the same place for the last 30 years. On holiday once, a cruise, he opened the cabin door instead of the bathroom door and was left wandering around the corridors in his pyjamas in the middle of the night trying to find his way back.

He didn’t worry too much about any of these things, he took them to be nothing more than normal ageing. But we knew it was more than that. I had run campaigns for dementia brands in the past and had obviously taken to Google to try and piece together these symptoms, so I suggested that Mum speak to their GP about it to see if there was any sort of early assessment and intervention we could try. While the GP listened and made notes, all they suggested was to call him in for a general health check. Clean bill of health later, we were no further down the line and it felt like we were just waiting for the inevitable decline before any action could be taken. We were totally helpless.

There was one really defining moment. Away on another cruise (these extravagant holidays were severely lacking in my childhood!), my parents were sitting up on deck after dinner, watching the sea go by and drinking a G&T. Mum said ‘well, I guess we should think about heading back to the cabin’ at which point Dad appeared outraged. ‘You can’t come back with me!’ he announced, shocked at her proposition. A long debate ensued, during which it became apparent that Dad didn’t realise that Mum was his wife. His wife of over 40 years in fact. Now the general advice for dementia is to go along with the delusions, because to the person experiencing it they are totally real. It’s like trying to argue with someone that the sky is in fact green when they can clearly see it is blue. Easier said than done when you are in the middle of the Indian Ocean and being faced with your husband having a psychotic episode and being refused access to your bed for the night. Eventually, after showing Dad her passport, he conceded to let her in but was still very unhappy about it. I can’t begin to imagine how it made Mum feel – anxious, scared, vulnerable, alone, and much more I’m sure. She didn’t even tell anyone until they got home two weeks later.

Totally out of nowhere, he had suddenly mistaken his wife for an identical imposter. That might seem like a random thing to be confused about, but it was actually the key to his diagnosis. This seemingly preposterous and highly specific delusion is often listed as a common symptom of LBD, and so helped us re-start the conversation with his GP and reach a diagnosis.

But it certainly wasn’t straightforward from there. There are no approved treatments for LBD, the best you can do is try Alzheimer’s and/or Parkinson’s medication and see what works. The dual nature of LBD means that all too often you end up having to make a choice between body and mind, as the treatments that help one will often worsen the other. As things progressed he needed a stick to walk. Then two sticks, then a frame, then a wheelchair. He slept less and less at night and more and more in the day. His independence drifted away from him, along with his ability to judge time, space and reason. He became agitated, stubborn, obsessed with making plans (okay, so he was always a little bit like that, but this was a whole different level). We had to run through detailed plans for everything – even a trip to the supermarket – several times over in the days leading up to it. It got to the point where we stopped telling him about things in advance for fear of him becoming obsessed with planning. He became unsteady on his feet, his left foot in particular being reluctant to lift off the ground. He fell a few times, nothing major, but enough to frighten himself (and us).

After receiving his diagnosis he was told he would have to re-sit his driving test if he wanted to keep his licence. We all knew his driving hadn’t been great for a while, a big thing for Dad as it had always been such a big part of his life. From buying a de-commissioned black cab with his mates in the 60s and driving it across Europe, to family days out in the 80s ‘going for a drive’, to his retirement job delivering new cars all across the country for the local Vauxhall garage, driving was always something that made him happy. While we all hoped he would decide not to sit it, he of course was adamant. He sat it, and he failed. He spent months complaining about how the examiner had got this wrong and that wrong and about how he was going to appeal the decision, but over time he got used to being chauffeured around by Mum and I think also lost the desire for it as his body and mind continued to decline.

His walking became incredibly slow and laboured. His behaviour became increasingly difficult, even aggressive. My Dad was certainly not an aggressive man, in fact at his funeral I lost count of the number of people who described him as a gentle man, with a cheeky sparkle in his eye. So to see him shouting, calling people names (especially my Mum, his primary carer) was hard. He had a string of UTIs that each marked a significant decline in his mental and physical health, every time dropping him a notch further towards incapacitation. He became incredibly hard to manage, refusing to take his medication, spitting it out, often taking an hour to be persuaded to take one tablet, which clearly requires the patience of a saint (in the form of my Mum). Mum, by this time, was doing everything for him. She would be awake all night as he tossed and turned, and even when he slept she found it hard to do the same for fear of what might happen if she wasn’t watching him. She would spend the whole day looking after him and dealing with however he expressed himself that day. She had to make sure he took his medication, he ate a decent meal, he drank fluids. She had to lift him up every time he stood, support him every time he walked, help him as he got in and out of the car. The strain on the primary carer, mentally, physically and emotionally, is immense.

He also started experiencing more and more hallucinations and delusions. He would often talk to people who weren’t there, having full conversations. Or imagine there were dogs or spiders in the bedroom at night. One common one was that the entire Welsh rugby team were hanging out in the bathroom. Almost like dreams, it fascinates me to think about why he produced these particular things to obsess about, what was going on in his mind that popped these particular realities in there for him? He also moved backwards through time, initially thinking he was back at work and talking about invoices and having to do things on the computer. Then he went further back, talking often about someone he worked with briefly many years ago. Again, I have no idea why this particular colleague became such a fixture.

One day, in spring 2019, he fell while in the waiting room at the local GP surgery. Just a little trip, nothing significant. Three of the staff came to help, but they couldn’t lift him. He had so little control over his body that he was like a dead weight, so they had to call an ambulance to lift him up off the floor and into an examination room. Everything seemed to be fine, he was talking, aware of what had happened, and even a little embarrassed at all the fuss. After a little while they helped him out to the car and Mum drove him home. She managed to get him as far as the dining chair by the door while she made dinner, then to his chair in the living room after they ate, but from there he refused to move. He fell asleep and in the end she had no choice but to leave him there for the night. Next morning she called the GP to explain what had happened, and they sent another ambulance out. This time he was taken to hospital and that night in the chair was the last he spent at home.

He had an infection, and like all the UTIs beforehand it knocked him badly. Despite his initial lucidity immediately after the fall, within a few hours it was a different story. That was the last day he walked, last time he spoke any sense. He spent a week in hospital and was then discharged to a care home for two weeks’ rehab before coming home. In those two weeks he developed another infection, had another stint in hospital and was then discharged, bedridden, back to the care home. I’m not sure if we ever said out loud to each other that he was never coming back home, but I think we knew it. He didn’t really know who we were anymore. We would visit him and sometimes he would show vague recognition, sometimes he would barely acknowledge we were there. Only once in the 8 months he spent in the home did he call my Mum by her name. But, he was content. He seemed calmer there, more compliant certainly for the team of carers than he was for Mum at home. Less agitated, less aggressive, more at peace with where he was and who he was. Maybe he did recognise us because he always made more of an effort for the less regular visitors! His sister, a neighbour, and old friend, he always seemed more alert and aware when they visited, like he was playing host and had to make an effort.

He communicated very little by now. He would mumble so quietly you could barely hear him, and what he did say never made any sense. Music is known to trigger good responses in people suffering from dementia and Dad was no different, while he could barely speak, he would sometimes sing along to music that was playing in the background, especially good old 60s rock. The last time I saw him my kids had made him birthday cupcakes. They took them in, so excited to give them to him. We put one in his hand and he scoffed the lot, I think I even saw a flicker of a smile as he licked his lips. That was a good day.

On 17th December 2019 we got the call. He woke up in the morning but was barely awake, they knew straight away that things weren’t good. Mum went over but arrived just a little too late. My sister and I didn’t really get to say goodbye. Although, as is almost always the case with dementia, he had really gone long before. There never is a chance to say goodbye as you can never define the moment when they are ‘gone’. It happened over a number of years, in Dad’s case fairly swiftly, and there is no one moment you can look back on as being your last. There are memories, moments, conversations and of course a connection that will never be gone.

While the loss of a parent is never something to be thankful for, we could take solace in the fact that he was no longer trapped, no longer suffering, and no long a shell of his former self. That’s almost what it was like by the end, a shell with no way of knowing what, if anything, was going on inside. I am comforted to know that the day before he died was a good one. He was in high spirits and had been bright and relatively chatty with Mum, my niece and his carers. When he was getting ready for bed he started singing ‘Let It Be’, by the Beatles. So his carer looked it up on YouTube and played it for him, and he sang along to every word. I like to think he fell asleep happy, and maybe ‘Let It Be’ was a final message to those of us he left behind.

These days, we have plenty to remember him by, and to make us smile. He pops up in unexpected places too, like finding that my new garden is full of forget-me-nots, the flower of dementia. My Mum and my sister have taken some back to plant in their gardens at home.

Why am I sharing all of this? Like I said, change starts with awareness. Awareness of what this condition is, what we can do and how we can help. There is still so much stigma around dementia, which needs to change. Access to good care, and residential care especially, desperately needs to improve. There is so little known about LBD, and that certainly need to change. We need to start exploring LBD – what are the causes, the triggers, are there any ways we can slow or prevent it, can we develop treatments for it, even a cure one day. Why not? But until there is enough awareness and conviction to change, nothing will happen.

LBD is hard. And it’s amazing to believe that it is so common and yet, for some reason, still so unknown. If this can help spread a little more awareness, and in turn help lead to more support, recognition, funding and research, then it is worth sharing. I hope Dad would agree.

I am running a half-marathon this Sunday in memory of my Dad, and if anyone feels able to contribute you can find the link at the bottom of this page³.

Thank you for listening.

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