[This is the third in a series of articles from Guest Writer Catherine Mossop narrating her husband, Brian’s, journey with the dispiriting effects of dementia, likely Alzheimer’s Disease. (See, A Journey With Dementia, and, The Sneaky Progress of Dementia). It’s a heart-wrenching story, intended to inform, yet written with a light touch and the occasional bit of humour. 

It is important to note that up until about five years ago, Brian was a consummate professional, an accomplished, multi-talented, loving and generous man, but then as his disease progressed, largely affecting his prefrontal lobes governing his executive functions, his behaviour deteriorated into a frustrated, aggressive and violent man. It is the disease, not the man. This is his story, and Catherine’s story.]

“Hello, Catherine? This is Victim Services calling…, we have been provided your information by Police Services when there has been a domestic incident…”

I’m speechless. “Thank you” I responded. “But, I’m not a victim.”  

I find it perplexing that this brief encounter has stuck with me for the better part of two years. Maybe I am a victim? I just didn’t think of myself as a victim. I am the spouse and care provider of a person on the Alzheimer’s journey – where on this journey did I transition to victim? I don’t have an answer. I will say that the circumstances that led to the call are disturbing and warrant a serious look, but at that stage of Brian’s decline I had no idea how government services handle situations involving domestic violence. Anyway, at some point in Brian’s illness, we became ‘known to police’.

What was the tipping point in this transition from cognitive decline to dangerous dementia, from spouse and care-giver to vulnerable ‘victim’? The events that led to this call from Victim Services appear simplistic – natural and gradual progression of his disease – but the responses of the dementia patient can be sudden and dramatic. Those living in the twilight zone of dementia – the individual and the care-giver – frequently deal with an agglomeration of perplexing variables that present a true paradox: capable professional demeanor on the outside, seething non-comprehending frustration, known as ‘responsive behaviour’, hiding under the surface until something triggers violent behaviour. I recall reading articles about the inspired leader as having the capability to navigate paradox – I don’t think the writers were referring to the volatility of those on this type of dementia pathway. 

And what was the triggering event? Brian lost his driver’s license. 

In earlier posts, I described that Brian experiences Anosognosia – the inability to recognize or have self-insight to mental incapacity. It also means Brian can go from complete fun and calm to rolling-boil in less than a nano-second. I had become increasingly aware of Brian’s cognitive decline – disoriented, unable to make decisions, uncertainty about where he was, and how to get back home. I was worried that he no longer had the capacity to drive a car. But how do I get him to acknowledge that he was no longer capable and was a risk to himself and others? Among other things this anosognosia resulted in incredible difficulty getting him to agree to obtaining medical attention as he was otherwise healthy and simply refused to go to the doctor. But a genius idea came to me one morning, 4:00 a.m., that Brian would never question! – ‘I‘ needed to go to the doctor to get signed forms for a mammogram. ‘Ah-ha’ I thought to myself, ‘I can lever this mammogram need to get Brian to accompany me to the clinic’. Except it wasn’t the mammogram clinic we went to. Instead, the appointment was with our GP to conduct the Dementia Assessment for Brian. The line that convinced him to come along, was that I would be delighted if he would please drive me to my appointment. 

While in the office, I whispered to the doctor, very calmly, that I was not safe. He gave me the thumbs-up sign and I felt tremendous relief – he heard me. No further explanation needed. 

Brian cooperated with the dementia assessment, perhaps because he thought it was part of my mammogram procedure, or maybe he was just not fully aware of what was happening; or maybe he had his public mask on, or, it was like a game. 

Our family doctor experienced the roar of the lion when he told Brian that his driver’s license had to be suspended.

He might just as well have told Brian he was to have his fingernails extracted. There was NO WAY in this lifetime that he would ever stop driving, P.E.R.I.O.D., full stop. Brian loved driving. Driving here and there and everywhere; to drive with purpose, or drive for fun, he simply loved to drive. Do anything to him – just don’t tell him he can no longer drive. 

A person with anosognosia, and who loves to drive, is not going to willingly give up the keys to his car.

Doc recognized the escalation so to appease him, he said, ‘if Catherine was in the car, and it was just for errands, it would be temporarily ok to drive’. As Brian readied himself to leave, coat, hat and keys in hand, the doctor held me back and told me to hide the car keys. Easier said than done. In my circumstances, this was singularly unhelpful advice. For the sake of our, and community safety, I did hide the keys, and even disabled the spare key. 

OH MY FREAKIN’ ANCESTORS !! My wonderful man turned into Angry Bird (Angry Bird plush toy that screams). Missing keys unleashed hours of vitriol, and efforts to search all corners of the house and garage. By lunch time the steam would run dry for a bit, only to begin again with accusations, swearing, threatening, stomping, more threats, slamming me into the wall, raised fists, and kicking me out of my house… and this became a regular occurrence. 

Alas, it didn’t end there. It took a turn for the worse a few weeks later when we were referred to the Geriatric Assessment and Intervention Network clinic in Port Hope. Brian drove, I navigated – it was easier that way. Brian was diagnosed with Alzheimer’s with Frontal Temporal presenting and the team informed him he would be no longer licensed to drive; this would be reported to the Ministry of Transportation. World War III broke out. Attempts to de-escalate resulted in a quick end to the GAIN Team meeting. I did gather that we were now clients of the Alzheimer’s Society, and I would have a team of support. 

The GAIN clinic assigned a Visiting Behaviour Nurse Specialist to us and upon her first visit I was instructed to re-organize all furniture in such a way that Brian could not grab me from behind, and every item in the house that could be used as a weapon was to be removed. But how do you go about that when the prime suspect is listening, watching, questioning, glowering?  

From that point on, that nurse, and all other health providers, and friends, were not allowed into our house – he would bar the door, escalate and threaten harm. The only people permitted to visit were his children, and our sisters. 

Life now became a perpetual state of high alert and self-preservation; it is exhausting and the effects touch everything: how I responded to sudden movement, how I speak to him, how I position new information, how I make decisions, constantly on guard not to trigger him. But this unrelenting anxiety has far-reaching effect. 

One day, with my own safety at risk, I had to make an insanely difficult judgment call, and I caved: I gave him the keys and off he went for a drive. I had hidden a tracking tag in the car so as soon as he left, I mustered the courage to report him to the OPP (Ontario Provincial Police). I guess people don’t usually drop in at the OPP station. The folks at the front desk were quite taken aback when I asked them to find and arrest my husband, cuff him and impound the car. I dissolved into an uncontrollable flood of tears. They sent me home with the phone number to call dispatch and a card for Victim Services. I sat shaking for the next two hours talking to dispatch, describing where the tracking locator indicated where Brian was – to no avail. The OPP were not successful locating him, nor were the local police services; the tracking tag was not effective in identifying precisely Brian’s location, or maybe I couldn’t report it accurately, or Brian had moved on from that location by the time the police got there. Hours later, Brian returned home happy as a clam. He reported he had gone to his old neighbourhood pub, had a pint, hopped back in the car and returned home – but that’s not the tale the tag had told. “See, I can drive! That Doctor is an idiot, you are an idiot, nothing is wrong with me. You are all insane!!” 

That was the first time I had to call the OPP, but not the last. After a subsequent incident requiring the local Cobourg Police, I was informed that my spouse would not likely be arrested, and if he were to be taken to Emergency, and he conducted himself calmly with the Emerge Doctor on call, he would be released back to me, placing me at greater risk. As a result, under standard procedure, at that point nothing could be done about Brian. But I was deemed ‘at high risk’, and so marked on the file. 

‘And what am I to do the next time he wants to go for a drive?’ ‘Just let him go and call us.’ 

The police also advised that when Brian gets violent, call 911, and they would respond right away. This  may have been the best the police could do but how ludicrous; just imagine how that would unfold: I grab the phone to dial 911, wait an eternity for them to answer: Police, Fire, bla bla bla – then wait on the line seemingly forever for police dispatch… just wait 15 minutes while my husband tries to strangle me. 

The better option from that point was having an escape plan ready: I packed an overnight bag and hid it in my car, I kept my car keys on my person, I always made sure I could get to an exit. 

Oddly, I did take comfort in being ‘known to Police’. 

Catherine Mossop, reporting to you from Cobourg, Ontario

© Catherine Mossop & AFS Publishing

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