It seems like a very long time ago that my dad first started showing signs of dementia. In essence it’s about twenty years, but since so much has happened subsequently it feels like a lifetime separates those experiences. With the huge level of knowledge and understanding that I now have about dementia, it seems inconceivable that I was once a teenager with no idea that my dad was living with a disease that would change all of our lives.
The more recent memories of dad’s dementia – the periods in hospital, the nine years in care homes and the heartbreak of his life ending – all live so much more vividly in my mind than the time that went before. I wish I could explain our naivety during those ten years, but in truth I know it was a lack of awareness, irrational denial and a simple hope that everything would be ok.
Yet nothing was normal. Dad’s dependency on us, given that he had previously been a very capable man, was so uncharacteristic. His decision making was devoid of rational thought, his imagination ran wild, and his ability to look after himself and his home persistently floundered. As a family we gradually began to plug the gaps for him, rarely questioning it and never realising we were, in essence, becoming carers for him.
In practical terms this meant trying to ensure that he ate properly and taking food to him (his diet deteriorated to a point where he would only want to eat bread and cheese – hardly the best choice for his vascular health – and he refused meals on wheels), helping him with his personal care (hair washing, bathing, cutting nails etc), changing his bed (and discovering all kinds of things hidden in it), cleaning (amid huge clutter), doing his washing, endeavouring to keep on top of the overgrown garden (an impossible task), trying to ensure post was read and bills were paid (dad would hide the post), booking his medical appointments (a logistical nightmare to get him to attend), arranging family meals and trying to maintain normality.
That was all relatively easy though, in comparison to the emotional toll. Dad would constantly phone up for reassurance, or because he had imagined something (like an intruder). He would have forgotten what you had told him, or would want you to come over when it was impossible for you to do so. He would go out, fall or become disorientated. He couldn’t handle upset or change of any kind, and would cut himself off by pulling out the phone line or putting bricks by the door. His world of imaginations and hallucinations became so vivid for him that it was impossible to maintain any sort of reality, hence conflicts over things like eating, taking medication or keeping washed and smart.
Gradually dad lost his ability to function in his home, and without that vital understanding we needed about his dementia and how to support him, dad hurtled towards a crisis point. It was also to be a point of no return, as health and social care professionals gave us no choice but to find him a care home given the nature of his symptoms at that time. I feel incredibly sad and full of regret that the last night dad ever spent in his own home was on a cold, hard floor having collapsed from a larger stroke. If we had only known he had vascular dementia and been given support and advice, I am certain that the grave nature of what happened that night could have been avoided.
Remarkably, none of the professionals charged with dad’s care over those ten years ever thought to mention that he had dementia, despite a consultant old age psychiatrist later admitting that he had known for some time. It is a cruel twist of fate that in order to reduce vascular deterioration you need to follow a healthy diet, take regular exercise and modify your lifestyle, all issues that become infinitely harder to tackle when someone has already developed vascular dementia through TIA’s, and as a result is struggling to look after themselves or, in many cases, accept the support offered by their family.
Even when a family has knowledge and awareness of dementia and correctly identify the disease in a loved one, it can be a massive battle to get help if the person themselves doesn’t recognise that they are experiencing problems, and they steadfastly refuse to accept assistance. Respecting how your loved one feels and what they say, whilst at the same time feeling constantly fearful for their safety and wellbeing, is an impossible juggling act. Trying to force them to seek help can often backfire, creating long-lasting divisions in families at the very time when everyone needs to pull together. Gentle persuasion may work, and I wrote tips for discussing dementia here, but ultimately for many families the passage dementia takes will determine how life evolves, independent of anything you do or say.
Most families fall into gradually providing more and more care for a loved one, either as a result of already living with them, moving nearer to them, moving in with them or trying to provide long-distance care and support. Whether you are near or far, however, the emotional rollercoaster is immense and for many, myself and my family included, the crisis point that you often come to is heart-breaking and life-changing.
You look back and wonder what you could have done differently, but often the simple answer is that you did your best at the time and you just have to accept that you cannot always bring about a happier outcome no matter what you do. If I could have those ten lost years with my dad back I would wish to have known so much more, understood and empathised in the way that I do now, and done everything possible to avoid that crisis so that dad could have remained in his own home for longer. There is no doubt that’s what he would have wanted and I wish we could have made that happen for him. Hindsight, as they say, is a wonderful thing.
Until next time…