[This is the fourth 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, The Sneaky Progress of Dementia, and Driving.)
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.]
Missing. Such a small word, but with so many meanings: My keys are missing; I miss seeing the kids; my husband has been gone five years and I still miss him; I miss my husband even while he is sitting beside me enjoying a beer – there is no conversation, I don’t know what’s going on in his head.
Missing something or someone is a kind of loss. It may be a small thing, or it could be big, but it is a loss nevertheless. And how do we respond to a loss? Through mourning and grief.
Grief. Such a small word of huge and wide-ranging emotion. When we lose a close family member to death, we grieve, a deep, crushing, distress creating a hole in your heart that stays forever. For the family of someone on the Dementia pathway the loss is a paradox: He is still with us, but he is not ‘there’. We grieve nevertheless.
My husband Brian, a young 70, is in stage 5 Dementia (with Frontal Temporal presenting, likely Alzheimer’s). I experience the paradox of loss being a part of the dementia journey with my loved-one, and I grieve. But I also live another sort of paradox: When I’m with him I maintain a positive attitude, my usual manner, engaging, upbeat; but privately I surrender to my tears.
Some people build alternate realities to manage their emotions when a family member is diagnosed with Alzheimer’s Disease, mostly denial. This is to be expected – they are feeling the loss too – but they don’t live with it daily as the caregiver does; and sadly, these individuals often profess that they are there for you and want to help, when it is simply not the case. Some, with ideas of their own, will take steps, wittingly or unwittingly, to undermine the primary care provider, oblivious to the dangers they precipitate.
Usually, with the death of a spouse or close family member the heavy initial grief gradually declines over the ensuing two or three years. In Brian’s case, as his disease progressed over a period of four years, I lived in an increasing state of loss – my husband was less and less available to me. And, like a widow, the loss is coupled with a rapidly shrinking social circle.
I became more and more aware of what was going on in Brian’s brain as he gradually lost his mental and emotional capacity for self-control. I came to understand that Brian himself, in his non-comprehending mind, was struggling with loss too; and in his efforts to deal with his increasingly unfamiliar environment he was daily experiencing mental and emotional fatigue. I began to realize that upon waking, Brian’s brain was already becoming overloaded as he made efforts to comprehend what was going on around him, and struggled to have a dialogue of sorts with me. To maintain some pattern of normalcy with Brian we would often venture out of the house – on errands, car rides, go out for lunch at a favourite spot – and all would be well. By about 2:30 or 3:00 in the afternoon, his brain was exhausted and he would slump in a chair and stare off into space. This loss worsened when he would rouse from his stupor and begin to ask me a litany of questions: ‘Who are you?’ ‘What are you doing in my house?’ ‘Whose house is this?’ ‘Do you work here?’ ‘How old are you?’ ‘Where was something…?’ This would carry on for several hours. It was exhausting. I began to recognize patterns of what would trigger ‘responsive behaviour’ (curious term, that, more like reactive behaviour); I devised clever processes for de-escalation and most of the time I could allay his concerns.
If he wanted to do something rather dangerous – driving – my response had to be a ‘no’; too often my diversionary tricks didn’t work and his oppositional aggression would escalate, quickly. I did everything under the sun to keep the conversation light but about once a week or so, my escape plans had to be implemented. There were times I had to get help to re-enter the house: I’d contact his son to make the ‘distract to diffuse’ phone call, or in more serious instances, I’d have to call the local police to de-escalate the situation.
His family rarely experienced what I lived with and simply couldn’t comprehend what I would describe when I called for help. Only his son provided me with a few hours of relief once a month. So, organizing for Christmas (2023) for the family became a protracted planning exercise – explaining risk, keeping it simple, that Brian did best with lunch, only a few visitors – and then it would be truly wonderful for everyone. They weren’t happy with these arrangements – they wanted to have Christmas like they used to have. Brian was the king of Christmas. He loved Christmas and all the accoutrements – fun with lights, decorations, family, music and entertaining. Who could blame the family for resisting this loss? And, really, ‘Brian’s not that bad’, they insisted. I was finally able to gain their commitment to a plan that distributed the family gatherings over three gentle days: Christmas Eve lunch with his son’s family, Christmas Day lunch with my two children, and then Boxing Day lunch with his daughter and sister. My hope was we could have a gentle visit without incident; this was about as good as it could ever get. I was happy with these arrangements, but Brian was not. He didn’t want to have anything to do with Christmas.
On Christmas Eve morning, at about 10:30, Brian said he was going for a drive. I said that his son and family were coming for lunch at 11:00 and asked that he not go. To no avail, Brian didn’t want to have anything to do with Christmas and he wanted to leave. To avoid escalating, I said “OK how about a nice short drive down to the pier, look at the lake and come back?” It was easy and something we did often – straight down the road one kilometer, look at the lake for a bit, back home – 20 minutes, tops – he knew the way – perfect. He was over the moon happy – I remember effusive thank-yous and off he went.
Twenty minutes later, his son arrived – “where’s dad?” “He went down to look at the lake and will be back just about now.” I responded.
An hour later – hmmm. He isn’t back. I checked the tracking tag I had hidden in the glove compartment – it showed he was at the Beer Store.
Another hour passed. I said to his son “I’m calling the OPP (Ontario Provincial Police)”. He suggested we wait a bit longer; I said “no, it is time to call it in.”
I called the OPP – we are ‘known to the police’ – I reported that Brian had been missing two hours and twenty minutes. They said they’d make some calls and get back to me.
Twenty minutes later the OPP Officer was at my door with the Missing Person Kit. The local Police Officer arrived moments later “ah yes, he is known to us…”
Missing Person information included photos, and everything from what he was wearing to what brand of gum he chews. This information is distributed to every CCTV, every gas station, corner store, police forces – it is thorough. Brian was ‘missing’, but I knew he was lost. I asked the OPP to please take him to hospital once he is found as I knew there was an available space for him in the Geriatric Assessment and Behaviour Unit. In consultation with the GAIN (Geriatric Assessment and Intervention Network) Team, I had been holding off until a significant risk event required police support for a medical intervention. I took a deep breath and thought this just might be the critical event.
By 3:00 in the afternoon of Christmas Eve – Brian was an all-points bulletin missing person, and I was on the phone to his family.
I was terrified. They were terrified. Friends were terrified.
As it turned out, Brian was missing for 27 hours – that’s right, 27 hours.
Being new in Cobourg and living a ‘closed’ life, had me in a most vulnerable place of helplessness. I wanted to join in the search – canvas the usual places we visited – but I stayed in the house in case he’d just show up; I was on the phone to the OPP, local Police detachments, family, and friends constantly. I coordinated all the search parties trying to relay information from the tracking device, and I had to console his family – some of whom were still living in their unique false reality about the progression of the disease. “Why don’t you just phone him and tell him to come home…?”. Great idea – he didn’t take his phone with him. “Why didn’t you put a tracking device in the car?” “There is one, it needs to triangulate to work.” (I had given another one to the OPP to see if it would pick-up a signal – nope.) “Why didn’t you stop him from leaving – after all it’s Christmas Eve”. Sure. Good idea…
The search continued. We reviewed all frequented locations – his favourite pubs, our bike routes, favourite places; no stone was left unturned. We had to find him.
At 4:AM Christmas Day, in a moment of panic desperation, I sent a note out to my Facebook page private local knitting circle with the OPP bulletin – “I know this is not about knitting, but my husband is missing, and I need your help – he has dementia and is Lost Within His Lost. He will not be able to go into a gas station and say he is lost – he will not be able to say where he lives, he will not be able to tell you I am his spouse, he will not be able to give you a phone number – you must call the OPP Missing Person Alert number.” Knitting circle friends mobilized – checking every license plate, driving country roads, driving the lakeshore, sharing on their Facebook pages, simply amazing. ‘Yarnies’ are amazing.
Friends and family everywhere called and took time away from their families on Christmas Eve and Day, and went looking for Brian, a joint effort by OPP, local Police, volunteers, and an army of friends, family and strangers. It was someone from that private local knitting group who spotted him and called it in. Brian was found safely on Christmas Day at 1:30 in the afternoon – he was just outside of town. (When I got the car back the gas tank – always kept full – was empty. A month later a speeding ticket for a Scarborough location arrived in the mail, and multiple 407 toll charges for getting on and off the expressway as far as the 410 toward Brampton.)
He was calm when the Police apprehended him, and rather surprised by all the reported family hullabaloo. He had no awareness that he had been missing for 27 hours. The Police didn’t take him to hospital as I requested, and, for some reason, they didn’t contact me but another family member, and because he was calm – and it was Christmas Day – they turned him over to that family member (who didn’t want him taken to Hospital) who brought him home to me. Needless to say, the Christmas plans were cancelled.
There are no words that can effectively capture the outpouring of care, effort and support from all these people who helped find the missing Brian – people I knew well, people I knew a little, and total strangers who just wanted to help. There are no words of thanks great enough to express my gratitude.
But I knew that Brian’s condition had worsened. How much longer could I manage before he grew violent again, or went missing again?
Six weeks later, a neighbour called 911 reporting that I was being assaulted. Brian was taken to hospital by the local Police where he was declared Form-1 under the Health Act. He stayed in that secured geriatric unit for nine months waiting for an opening in a qualified Long-Term Care facility. October 1st, he transitioned to a specialized unit in a wonderful Home in Oshawa. He is safe and receiving outstanding care. I commute from Cobourg several times a week to visit him, he usually recognizes me and once he said my name. I know Brian is lost to me and I am starting to rebuild my life without him. But I am missing him.
Catherine Mossop, reporting to you from Cobourg, Ontario
© Catherine Mossop & AFS Publishing
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