This is Danzal or Dan as we like to call him, he is in his late 80s and sadly suffers from Alzheimer’s/Dementia which is progressing as each week goes by, we know we cannot stop this cruel disease, just make sure his quality of life is the very best we can make it, he lives with us and through a combined effort of myself and my family as well as some fantastic carers, we are working as hard as we can to give him everything he needs and try to let him experience as much of life as he can before the disease consumes him completely and he eventually disappears before our eyes. I will share when I can how Dan is connected to us and why we care for him, but that’s a story for another time, what I wanted to do is try to share insights into his days as best I can, to try and document as real as possible how he interacts with what’s around him, and how he embraces the world.
Now I feel it’s necessary to share some science bits on this disease as taken from the NHS official website, it’s important to understand what it is and just how cruel and life stealing Alzheimer’s and dementia really is! Alzheimer’s disease is the most common cause of dementia in the UK. Dementia is the name for a group of symptoms associated with an ongoing decline of brain functioning. It can affect memory, thinking skills and other mental abilities. The exact cause of Alzheimer’s disease is not yet fully understood, although a number of things are thought to increase your risk of developing the condition, increasing age, a family history of the condition, untreated depression, although depression can also be one of the symptoms of Alzheimer’s disease lifestyle factors and conditions associated with cardiovascular disease.
Alzheimer’s disease is a progressive condition, which means the symptoms develop gradually over many years and eventually become more severe. It affects multiple brain functions.
The first sign of Alzheimer’s disease is usually minor memory problems. For example, this could be forgetting about recent conversations or events, and forgetting the names of places and objects. As the condition develops, memory problems become more severe and further symptoms can develop, confusion, disorientation and getting lost in familiar places, difficulty planning or making decisions, problems with speech and language, problems moving around without assistance or performing self-care tasks, personality changes, such as becoming aggressive, demanding and suspicious of others, Hallucinations (seeing or hearing things that are not there) and delusions (believing things that are untrue), low mood or anxiety . Alzheimer’s disease is most common in people over the age of 65.
The risk of Alzheimer’s disease and other types of dementia increases with age, affecting an estimated 1 in 14 people over the age of 65 and 1 in every 6 people over the age of 80. But around 1 in every 20 people with Alzheimer’s disease are under the age of 65. This is called early- or young-onset Alzheimer’s disease.
How Alzheimer’s disease is treated
There’s currently no cure for Alzheimer’s disease, but medicines are available that can help relieve some of the symptoms.
Various other types of support are also available to help people with Alzheimer’s live as independently as possible, such as making changes to your home environment so it’s easier to move around and remember daily tasks. Psychological treatments such as cognitive stimulation therapy may also be offered to help support your memory, problem solving skills and language ability.
People with Alzheimer’s disease can live for several years after they start to develop symptoms. But this can vary considerably from person to person. Alzheimer’s disease is a life-limiting illness, although many people diagnosed with the condition will die from another cause. As Alzheimer’s disease is a progressive neurological condition, it can cause problems with swallowing. This can lead to aspiration (food being inhaled into the lungs), which can cause frequent chest infections. It’s also common for people with Alzheimer’s disease to eventually have difficulty eating and have a reduced appetite. There’s increasing awareness that people with Alzheimer’s disease need palliative care. This includes support for families, as well as the person with Alzheimer’s.
Onwards with Dan
Through the job that I do (funeral director) I’ve spoken to so many families who have sadly lost loved ones to Alzheimer’s and Dementia, when speaking with these bereaved families I’ve learned so much about this cruel illness, how people with it forget who they are or forget their closest loved ones and friends, they can become aggressive lashing out or attacking loved one’s or attacking carer’s, they can become sexually aggressive speaking and acting like they never have before, which is both shocking and tormenting for the families that have to live with it, there are so many other forms and actions that it causes, which can be so devastating to the family living through it. I think when I speak with the families in question they very often have lived through such harrowing times with this illness, it’s sometimes forgotten that the person with Alzheimer’s or dementia sometimes do not know they actually suffer with the disease, or cannot recollect the actions they take? They just keep moving through life, being entertained or stimulated, consoled or managed, being cared for and keeping going as best they can. But for the families it’s devastating, they suffer immensely from both physical and mental anguish as they watch their loved one slip away into a shell, sometimes not knowing who they are speaking with, but most often not remembering the personal things of that moment, many remember all the finer details of their former lives right back sometimes to their childhood or other points of their lives, but the immediate moment they forget, either where they have been? Or what they’ve eaten that day? Who they have seen? Or what they’ve done?
Dan is no different he can talk to you about his life in South Africa 60 years ago, but does not know what he ate for breakfast? Dan knows who people are in black and white picture’s, but cannot tell you what movie he has just watched, when he does go out by during the day by teatime he has no recollection of where he has been or what he’s done. It makes us smile when we try to get him to embrace life as much as he can, to enjoy as much as possible
whilst there are glimmers of memories left. Seeing him laughing and smiling is a reward in itself, knowing he has got the most from his day, is all I can ask for, when he’s home and settled seeing him drift off to sleep knowing he’s shattered after his days exertions, we know our job is done and we’ve fulfilled another day of his life. It’s not always going to be like this, we know his condition will worsen and as time goes on he will only get worse! Maybe he will forget who we are altogether? Maybe it will consume him and take his very existence away? Perhaps he will see those around him as enemies and want to defend himself aggressively? We do not know what will become of him, we can only live each day at a time, small steps only no major plans or planning ahead because we have no idea just how bad it eats away at him.