Dementia The Devil Within.

The reason I decided to write this emotive piece is because my family, had the privilege of welcoming a gentleman into our own family, he was the companion of my partners late mother, he is a wonderful man, very kind very caring, and a true gentleman. Originally from South Africa, coming over to the UK in the 50s, he was never short of a story or two, he is a big chap 6ft in height and a strong man, but gentle with it. Prior to my partners mother passing away suddenly, we all noticed some changes in his behavior forgetfulness, not remembering things he was doing, mood swings and persona differences. After numerous visit’s to his GP as well as other agencies the diagnosis was early onset Dementia/Alzheimer, to me the worst case scenario based on my limited knowledge of the illness, we all knew that his life moving forward would never ever be the same again, it was a shock to us all, but to him, he did not understand what the diagnosis meant and how his life was going to significantly change forever.

So What Is Dementia/Alzheimer’s etc.

So what exactly is Dementia? I’ve taken the following information from the Dementia UK website, easier to give you the actually facts of what it is removing my emotion from the explanation.

Dementia is an umbrella term for a range of progressive conditions that affect the brain. Each type of dementia stops a person’s brain cells (neurones) working properly in specific areas, affecting their ability to remember, think and speak.

Doctors typically use the word ‘‘dementia’’ to describe common symptoms – such as memory loss, confusion, and problems with speech and understanding – that get worse over time.

Dementia can affect a person at any age but it’s more common in people over the age of 65.

There are over 200 subtypes of dementia. The most common are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia.

By 2025, it’s estimated that over one million people in the UK will have a diagnosis of dementia – and almost all of us will know someone living with the condition. 

Alzheimer’s disease is the most common type of dementia in the UK. It’s caused by a build-up of proteins in the brain which damage the brain cells’ ability to transmit messages.

The symptoms of Alzheimer’s disease tend to get worse over time. They include:

• difficulty remembering recent events (often retaining a good memory for past events)
• poor concentration
• difficulty recognizing people or objects
• poor organizational skills
• confusion
• disorientation
• slow, muddled or repetitive speech
• difficulty performing everyday tasks such as cooking, paying bills, and shopping
• problems with decision-making

There is no cure for Alzheimer’s disease, but medication is available to help slow its progression.

Vascular dementia is the second most common type of dementia. It’s caused by problems in the supply of blood to the brain, commonly due to strokes or ‘mini strokes’ called transient ischaemic attacks (TIAs). This causes areas of cell damage in the brain.

Changes in a person’s condition as a result of TIAs or a larger stroke are often sudden and then plateau (level off). But the damage caused often means the person never functions quite the same as they did before.

Vascular damage can also take place in the smaller vessels of the brain (‘small vessel disease’) and symptoms may be more gradual.

The symptoms of vascular dementia are often similar to Alzheimer’s disease, such as memory problems, disorientation and difficulty with communication.

However, symptoms can depend on which area of the brain has been affected and may include specific problems with:

• language
• reading
• writing
• sudden changes in mood
• walking

Prior to my job as a funeral director, I really didn’t know very much at all about Dementia, Alzheimer’s, Vascular Dementia etc. I heard of it but hadn’t really stopped to absorb what exactly the illness was and is? Dementia is a cruel nasty illness that robs a person of their life effectively, it does not discriminate it just occurs without prejudice, it attacks the brain slowly taking our loved ones away from us, it changes peoples entire persona’s sometimes in a manner not indifferent to Jekyll & Hyde, they become almost complete strangers, when this vile disease takes hold, for a family watching the decline of a loved one is completely devastating, it stabs at every emotion we have causing sadness, anger, frustration, devastation, confusion etc. the frustrating thing is we know so little about it and how to control it? Yes there are medications out there to try and slow the illness as well as meds to make the person calmer, and able to manage a little better, but nothing cures Dementia once it has wrapped it’s claws around the person, the outcome sadly is all to familiar! If truth be told once someone is diagnosed with this cowardly illness it really is terminal!

His Life Stolen From Him

From the day of the diagnosis we knew his life was going to change, not for the better but for the worse, things were never going to be the same ever again. He was a fiercely independent man, driving himself around, going out for coffee’s with friends, weekly trips to play table tennis etc. For his advancing years he was actually very fit and healthy, few minor ailments but nothing of any concern whatsoever. He’d worked all his life and was quite rightly enjoying his retirement living his life his way, his rules on his terms, unfortunately his future horizon was darkening with cruel dementia clouds that were slowly building ready to consume him and steal his life.

Little indicators had started to present themselves to us, from around mid 2021, he started getting a little forgetful, which hey is something we all experience from time to time, but this slowly became worse he was forgetting more sometimes getting confused with the easiest of things which then initiated frustration in him, whilst still able to drive he reversed his car into a concrete post at his residence, but had absolutely no idea how it had happened or in fact he had done it? Signs now showing that something was wrong and concerns were being raised, the car incident was the last time he ever drove sadly! More and more indicators started to present themselves, showing that potentially more than just old age had crept in, this culminated when he was on his own in his apartment, his breakfast and lunch had been prepared as his companion was going out for the day, he acknowledged where his food was, and listened to all the instructions, he was still in his pajamas but perfectly able to shower and dress himself as normal, sadly once his companion had returned home he was sat in the same place, still in his pajamas without touching the food and drinks left for him. This indicated that he was no longer able to safely be left alone in his apartment, a decision was made, that he needed to be cared for, so he moved to our property.

Dementia as I’ve said is cruel, it does not discriminate it just manifests within somebodies brain where it takes hold, as it grows it takes elements of the person away forever, in the gentleman in question, it was his memory first, quickly followed by his ability to perform everyday tasks such as getting his own food and drinks, remembering where exactly he was and why he was there. Then came his mood swings one minute he was happy smiling and being very affectionate, then the next minute his face would change and he looked angry and frustrated, which incidentally he never showed towards me or any other male only towards women? Then followed the constant hugs and wanting to touch you, he did give men a hug and still does, but with women you could see by his mannerism changes, he wanted to inappropriately touch, make comments etc. I questioned this behavior in my own mind? “Is dementia digging deep to a part of his life buried?” or is it Dementia’s cruel way of tormenting him and creating a monster from within?

As Dementia tightened its grip within the gentleman, the further from reality he drifts, only tiny fragments of the person I remember is evident and only every so often, he barely remembers names, but we are always greeted with big affectionate smiles, he has no control of his functions when it comes to the bathroom, a once proud man unable to know now when he needs the toilet or even when he’s done it! He loves his food but needs to be shown what he’s eating only then will he devour it, when it’s placed in front of him, he’ll just sit there looking at it, his brain not telling him to eat, even when he’s hungry or drink because he’s thirsty, just another cruel blow Dementia is inflicting on him. Bed time is a disturbed occasion I think the comprehension between night and day no longer functions, to him its just a moment in time, he knows not what or where that time is, he’s just there in that fragment of time wandering aimlessly, when he is a sleep he hears nothing as without his hearing aid he is completely deaf.

To watch the deterioration occur before your very eyes is both heartbreaking as well as generating anger, you ask questions such as; Why Him? What’s he done to deserve this? Why can’t it be treated? etc. Sadly these are undoubtedly all questions every family has asked themselves, throughout every single Dementia/Alzheimer’s diagnosis! I sit with him and look into his eyes and wonder what he sees back? What does he actually see when he looks at us? What does the world look like through his eyes or that of anybody suffering from this awful disease, why do people who have lived such different lives from each other across the world end up living the same nightmare? After so many year of diagnosis do we seem to be no nearer knowing the what’s and the why’s of this illness, all we can do is try and make somebody we love or care about as comfy as possible.

Dementia Statistics

The statistics above are alarming I personally did not know just how many people are being taken from us by this cruel illness, if these figures are indicative of those that have actually died, then just how many people are living with this disease? How many families both here in the United Kingdom and across the globe are living through this nightmare. Dementia/Alzheimer’s is on the increase its expanding, taking hold further and further a field, just how many people in the developing world have suffered and died due to this illness, that we don’t know about? How many people during Covid passed away but was only given the death diagnosis of Covid rather than Dementia or Alzheimer’s?

Closing Conclusion

I’ve learned a lot from meeting families through my job role, my understanding and perspective about Dementia/Alzheimer’s has significantly changed, this was due to firstly hearing the harrowing stories from different family members on just how different their loved ones have become through the illness, many have no idea who their families are anymore, many have become aggressive, angry and abusive, many swear horrifically, then there are many that become sexually aggressive as well as sexually inappropriate, for many they lose the ability to speak and communicate as well as losing the ability to perform everyday functions such as eating, drinking, bathing and utilizing the bathroom, they start to need 24 hour care which can be exhausting for a working family or a family with children, as I discovered when looking the gentleman. No matter how Dementia/Alzheimer’s has affected your loved one, what I saw through the countless families I spoke to was, how incredibly hard for the families it has been, the stress and anxiety of watching someone close to you change is heartbreaking, and the pain of knowing that the final outcome is all to familiar is crushing, very often the families are forgotten about, but their/our own turmoil leaves lasting scars which rarely ever heal, all time does is hide the pain it does not extinguish it.

As I move forward the gentleman I cared for is now comfortable in a wonderful care home, who can provide the 24 hour care he so desperately requires, he wants for nothing and is warm and comfortable, some days he remembers us others he doesn’t. Very often he has a big smile on his face and is pulling tongues or on other days he’s grumpy, angry and Gnarly. We get calls now and then that he has put his fists up but never really hurt anyone, but as his dementia eats away at him, his condition worsens his moods are far more up and down, he’s becoming more aggressive to the point we have involved social services and the mental health team, if his behavior carries on spiraling we maybe forced to move him to a facility better suited for his needs, think for myself the lowest point I’ve seen with the gentleman was a recent episode where I received a call from the care home advising that Dan had gotten hold of a resident by the neck, the staff had intervened but he was very gnarly, they took the decision to contact the police! When I arrived at the care home I was greeted with three police vehicles scattered across the carpark as though they were attending an armed robbery, on approaching the floor where the gentleman resides, i was greeted by the view of an elderly man in handcuffs with burley police officer holding the cuffs, there was three other officers there, as well as staff too, he looked afraid, confused but most of all he looked so small and humble for a big man, in my anger I ordered the cuffs off, to which they did, he then proceeded to give me a hug and pull a tongue at me. He pointed to his wrist where the cuffs had marked him, he kept pointing and saying “oooooooh” it was an awful awful scene to see not one I’d ever like to see again or wish upon anybody, just another cruel twist in Dementia hold over him.

There maybe points within this piece you disagree with, as well as maybe agreeing with some of my thoughts, but I think we can all agree that Dementia/Alzheimer’s is cruel, it’s debilitating, it’s a thief stealing somebodies life from them, its indiscriminate, it does not differentiate between the sex of a person or the race or religion, it just manifests itself then consumes. I hope in my lifetime that research into this illness progresses and hopefully one day there maybe a way to suppress or even eliminate it! but in the meantime we must care for our loved ones, continue to talk about our experiences but above all never give up hope that maybe one day we can kick Dementia/Alzheimer’s into touch!