Dementia does what is says on the tin; this cruel, unrelenting disease dements the sufferer and concerned relatives alike. From the initial stage of mild depression, possibly introvert behaviour and an absent mindedness that we all (without exception) display throughout our lives to full blown mental torment that indiscriminately robs the sufferer of happiness, independence and eventually, their sanity.
My first experience with dementia was when my paternal grandmother, no longer able to care for herself in her flat that was yards from our family home, came to sleep on our sofa while my Mother frantically sought the help that was needed. I can remember her waking up one morning, accusing my brother and I of keeping her awake all night with our noisy friends. We were barely in our teens at the time and we stifled giggles at the thought of our parents allowing us a riotous party, on a school night too! My Mother quietly hushed our mocking tones and explained we had to ignore her ludicrous accusations and incoherent ramblings as she really ‘wasn’t well at all’. My Nan was soon placed in a local nursing home, where we visited her until she died.
My maternal grandmother also became a victim to dementia. An immaculately groomed, proud woman evolving into a wild-haired runaway, fleeing in the early hours dressed only in her nightdress – desperately searching for some long dead relative, no doubt. She too was admitted to a nursing home and eventually lost her battle with the disease that took her mind and ultimately, her life.
Neither experience could have prepared me for watching the mental decline of my intelligent, funny father – his acerbic wit fought valiantly until the end as dementia and subsequently lung cancer, took him from us. Noticing how he arranged his pens, daily medication and glasses case each morning with military precision on the table beside his chair, it became increasingly obvious something was troubling him; on occasion you could see him staring at the items, frowning and then whistling nervously as he fought to remember if something was missing from the line-up. Then he would have an ‘Aha!’ moment and look in the drawer for his betting slips. Studying ‘the form’ on the racing pages of The Daily Mirror was an essential start to his day. His love of the Sport of Kings had spanned decades, not bringing any huge financial rewards but his modest flutters resulting in the occasional success that he felt warranted further investment! This daily task began to frustrate him and the hobby he once enjoyed only served to cause him distress, alerting him possibly to the fact that his concentration, dexterity and analytical skills were failing fast. Increasing confusion, verbal aggression and withdrawing from conversation followed. Yet somewhere locked inside the mental turmoil he was going through, my Dad would emerge with some witty remark and we would fall about laughing, welcoming the return of the man who we had all fussed over so much since losing our Mother. It is a complete irony that he succumbed to cancer so quickly; was it better that, than fading slowly away, becoming a shadow of his former self? The guilt at believing this to be so never goes away, yet I am resigned to the fact that it is true.
I’m now witnessing dementia with my feisty, strong and independent mother-in-law. The head of her family since the untimely death of her husband at 57, she adopted the role with fortitude and a no-nonsense attitude that stood her in good stead whilst setting her family the perfect example of how to overcome the hurdles that we all face in life – be it loss, ill health, emotional upset or just plain old misfortune. She had her own mother come live with her and looked after her until she died just a few months short of her 100th birthday. A mother of six, grandmother of eleven, great grandmother of twelve and great GREAT grandmother of two (nearly three), hard work never daunted her, she did it all without the necessity for praise and recognition. As I looked through the glass panelled doors of the hospital she was recently admitted to, waiting for visiting time to begin, it was difficult to see how the easy-going, strong woman I knew had become the frail, bewildered old lady shuffling along the corridor. A heart-wrenching moment for me, doubly so for her loyal family who are struggling to find the way forward to alleviate her mental suffering.
How are we meant to deal with this complex condition? This disease that doesn’t always present itself honestly, but rather creeps up on the sufferer with a cunning, merciless greed that eradicates all sense of self. Dementia stealthily shuts down brain cells with no sense of remorse until we are left with the shell of our loved ones. All we can do is watch, as they search aimlessly for whatever is troubling them at any particular moment. It could be a book, purse, coat – even a relative long dead and the home where they lived many years ago. We lie to them, we placate them with promises of returning to an address which possibly no longer exists. It feels as if we are patronizing them and we vaguely remember the brusque response and incredulous reaction we would have got before the disease enveloped their rational mind. Our soothing, lullaby-like reassurances may calm them initially – only for yet another problem to rear it’s head a day or, if we are unlucky, an hour or so later as they become anxious and fearful we aren’t listening to their plight. Paranoia prevails, we are all their enemy.
Not enough is being done. Not enough help is out there in the initial stages of this disease. Media campaigns are not enough. As more and more people are diagnosed (not just the elderly, either) we are going to have to invest in research and make sure we wipe out the scourge of Dementia once and for all.