Living with dementia is one of the toughest challenges any family can face. Emotions become raw and brutally exposed, and the constant question of, “Why did our loved one develop this?” is a harrowing, often daily, exercise in trying to understand that which cannot be understood.
Amongst the many families I have met going through their own unique dementia journey with a loved one, some common emotional themes have developed, five of which I am going to explore in this blog. Interestingly, given that many people feel dementia takes away the closeness they once had with their loved one, all of these emotions are common in the person with dementia too, so maybe we are not so far away from each other when it comes to the deepest feelings after all.
The early stages of dementia are, for many people, all about hoping that what they think is happening is not actually happening at all. They want it to be a figment of their imagination, an over-reaction to some erratic, worrying behaviour that they have experienced, a normal part of ageing, or a case of the person in question being far too educated, important or active to develop dementia.
The belief that this happens to ‘other’ people can become a huge obstacle in seeking help when someone is struggling with symptoms that are affecting their daily life, but it must be borne in mind that this disease is no respecter of background, education, career attainment or personal success. From the wealthiest, most influential people, to those who have struggled all of their lives to makes ends meet; dementia can strike anyone. There is no shame in it, and no reason to hide no matter how much pride you feel.
My father went 10 years without a diagnosis, but at a very early point when his symptoms became evident to a non-medical lady who clearly knew far more than we did, her view was that he was in the early stages of Alzheimer’s. Our reaction was something along the lines of, “What on earth is she talking about?” followed by, “She can’t possibly be right.”
LACK OF UNDERSTANDING
Denial often goes hand-in-hand with a lack of understanding about what exactly dementia is. When dad’s diagnosis finally arrived in many ways it joined up the dots, and everything that had happened in those previous 10 years suddenly had an explanation attached; except that we still did not really know what on earth dementia was.
At that point you then find yourself reading up and trying to understand, questioning the professionals charged with your loved one’s care, and almost secretly hoping that they are wrong and everything will go ‘back to normal’.
Of course that does not happen, your understanding slowly grows over the years, and your ability to spot the early signs of dementia in others (just like the lady who thought that dad had Alzheimer’s) becomes very finely tuned. A true grasp of dementia, its twists and turns, vagaries and anomalies, frustrations and yes, even joys, only comes with the time the journey with this disease takes.
Families often put off getting a diagnosis out of fear for what dementia will mean for the future. Fear of the disease is one of the biggest obstacles in tackling it because it feeds stigma, prevents understanding, and leaves people feeling helpless and not in control; effectively it puts you in a vicious circle.
Confronting your fears by seeking a diagnosis is not easy. You may not even have a choice in the end – we didn’t. Dad’s diagnosis came by chance when he had been admitted to hospital after collapsing at home from a stroke. At the time our fears were for his physical condition; we were coping with the shock of finding him on the floor and the worry of whether he would get better.
After all that, in some ways a diagnosis was a relief but the fear does not automatically go, in fact it often gets a lot stronger. Once you realise that dementia is a journey you will be going on whether you feel prepared (you won’t) or not, fear can regularly creep into your everyday life. For me, however, as dad’s dementia progressed, fear of the disease was replaced by fear of the phone call to say that he was ill with a chest or bladder infection and needed urgent medical care.
A SENSE OF LOSS
This is one of the most common, reoccurring, and troubling emotions that families going through dementia with a loved one experience. You feel you are slowly losing the person you knew, you cannot communicate or do the things together that you used to, and you are effectively grieving for your loss whilst your loved one is still alive. It is all the more distressing when you confront the realisation that as dementia is a terminal illness you will, at some point, grieve all over again.
It has been said that in dementia the mind passes away long before the body does. It is a profound statement but one that does not take into account the power personalised, compassionate care can have in helping those living with dementia to express themselves and maintain the bonds that they have with their family. Even when you become accustomed to dementia, if indeed you ever do, I won’t pretend that dark days do not happen when you feel overwhelmed with sadness, grief-stricken and helpless, but care that enables your relative to feel reassured, loved and valued will bring many more happy days than sad ones.
This is an emotion that so many families experience if the time ever comes when their relative needs to go into care. At this point families have often been struggling on at home, trying to care for their loved one, or a crisis point has occurred that means residential care is the only viable option.
Whether you have been caring for your loved one day in day out, or you have lived miles apart and been wracked with guilt that you have not been able to do more for them, moving someone so precious and loved by you into a communal establishment can feel life-changing. It can also seem like the final step in accepting that your relative is battling a disease that means that they need an extra level of care, and that this may well be their final home.
The guilt that you cannot care for them for whatever reason can be very troubling, and often goes side-by-side with massive concerns about whether you have done the right thing, and how your loved one will adjust and be cared for. As in all things related to dementia, however, I have always felt that the disease persecutes enough, without adding additional punishment on yourself. Never be hard on yourself or your nearest and dearest; you will need each other and all the strength you can muster in the weeks, months and years ahead, and crucially, your loved one with dementia will need everything you can give them too.
Until next time…