“Last month, broadcaster John Simpson came out in support of assisted dying amidst a storm of recrimination. In a deeply moving account, Impact’s Kayleigh Renberg-Fawcett discusses the trials and indignities of the most cruel of diseases, dementia.”

Not so long ago, John Simpson, BBC Correspondent and author, announced that he’d been hoarding deadly amounts of prescription medication with a view to taking his own life. His reason? Dementia runs in the Simpson family and he’s all too familiar with its symptoms.

In a remarkably brave interview, he told the Telegraph, “I don’t want my 6 year-old son to have his only memory of me as a gibbering wreck. I’d rather take an early ‘out’ than just hang on.”

Simpson’s decision sparked both approval and contention, a comment perhaps on the complex relationship between those who suffer its effects and its survivors. Families of dementia sufferers often take on massive responsibilities, be that finding care support, or simply learning to live with a hollowed version of a close one. It can be particularly demanding, and emotionally exhausting.

I am, unfortunately, able to speak from experience.

Picture the prototypical grandmother. Wipe it completely off the slate. There was nothing sweet about Beryl apart from her apple and rhubarb crumble. In her later years particularly, my grandmother became increasingly outspoken and given to impulse. 99% of the time her thoughts were crude. If she thought someone had a big arse, she’d tell them they had a big arse. If she saw a lady pass by donning a mini skirt, a comment along the lines of ‘you can practically see her fanny’ would follow, aloud. She was adamant in the view that excessive facial hair compensated for a lack of pubic hair, and was no shy bird in saying so.

“She thought she was hilarious. Many did not. I among them dreaded going out shopping with my dear sweet granny… But this is how I came to know her, and I soon adopted a customary rosy cheeked complexion when with her, a symptom of the galling embarrassment she gleefully bestowed. I look back now and laugh; you could never say she was without personality.

“But then, not long after the death of her husband, dementia kicked in. In the initial stages of her decrepitude she became outwardly aggressive; her humour crass, often hurtful. If you called her out for being wrong she’d snap at you to shut up. She was still as feisty as ever.  Once, she walked out of an M&S store, a fully stocked basket of unpaid goods in her arms, and was chased by the security guards down the street. Her excuse? The queue was too long for her. Of course she was barred from returning to the store again. This vexed her. Her emotions, at least, were a sign of life.

“After some inclement weather on what had promised to be a superb British summer’s day, Beryl slipped on the steps to her apartment, breaking her hip. She was hospitalised for three months. In that time she’d grown to fear the floor, and whenever the physiotherapist tried to get her moving again, she’d lock-up and refuse to move. The floor was too slippery to walk on. Her doctors grew agitated and exhausted. It was hopeless. My dad was among them. He would spend hours after work just trying to convince her to put one foot back on the floor.

“Then dementia yielded its only miracle. She was sat up in her chair, and with a certain languor, wobbled back over to her bed and laid herself back down. The nurses and physios froze. She would surely walk again! They returned the next day to find that she had reacquainted herself once more with her fears. She hasn’t gotten out of bed since.

“Within the space of three months Beryl had gone from living in her own flat to being a prisoner in her own bed. We brought her up North to a local nursing home, where we could at least visit her more often. This was back when dementia was really able to bite. Her aggressiveness escalated. A slight movement would cause her excruciating pain. She’d lash out at the nurses, grabbing their arms or even pulling their hair if they tried to move her.

“Thankfully the nursing home was well-equipped for dealing with sufferers of dementia. But when she was referred back to hospital with an infection, my family and I found ourselves chasing up belligerent hospital staff who’d been subject to my grandmother’s rages. Often nurses were reluctant to treat her. She was a risk case. We tried to explain that this wasn’t her, that this was the disease, that she was experiencing discomfort… I know it can’t have been easy dealing with Beryl, but their lack of understanding made for an exhausting task.

“Invalid, with little physical and mental stimulation, Beryl soon quietened down. In a strange twist of fate, she became the sweet old granny that we’d always wanted. Her tone was less vociferous and her gesticulations less aggressive. The silence, however, was deafening for us. It was another step toward her mental decline.

“Now when I visit, I find her asleep or drowsy. Her pale blue eyes are often distant, glazed over with a film of tears or some new infection. She can’t remember most things. Rarely speaks. She is more fascinated by the collection of sweet wrappers on her bed-side table than passing judgement on the state of Prince Phillip’s receding hairline.

“The pressure has hit my father hardest. His efforts to increase Beryl’s quality of life are now written in the lines about his face. Our calls to the nursing home have, at times, become hopeless and soul-destroying. She does not remember our visits and prefers to gaze blankly at the television and engulf chocolates. The extended family come less frequently. Still, duty bound, my father and I make semi-regular trips to the home in the hopes that we’ll get a smile out of her.

“Dementia is a cruel game. It wears down its victims, their families. At times I fear the stress of it all could pull my family apart. It has threatened to do so many times already. Yet we persist. It has already been suggested that we start our grieving process. Beryl is no longer the grandmother I once knew; she’s just her hologram. All one can do now is watch, and wait.”

Kayleigh Renberg-Fawcett

If you have been affected by any of the issues raised in this article, please consult http://www.dementiauk.org/

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2 Comments

  1. Dave J
    July 19, 2012 at 18:45 — Reply

    As somebody with a relative with dementia (who has also had trouble with falls), this article definitely strikes a chord. It’s worth noting that dementia affects everybody differently – it doesn’t necessarily make somebody aggressive, for example.

    It’s tragic what can happen to us in our age. But there are enough cases of elderly people who have – often flying in the face of all odds – keep on surviving and keep on bringing joy to others, even when dementia is taking hold, to suggest that we shouldn’t be too quick to write a life off.

  2. July 23, 2012 at 00:36 — Reply

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