Our Dementia Journey Begins
Why is it that so often we give places names or titles that are the very antithesis of the function that the place in question is known for or provides? Take the name ‘health centre’, for example. Was there ever a less apt name? Surely the main reason for going to a health centre is because at the very least you feel less than healthy and at the very most you feel the exact opposite of it. Perhaps it is a classic example of how, as a society, we always tend to accentuate the positive at the expense of being honest about the reality.
Sitting in a such-named health facility in our local town, I was struck by the herculean efforts the health care providers of this centre had made in their interior design approach to mask the reality of its function. Gone were the clinical white walls and institutional hard chairs that scraped across polished concrete floors of such places in the last century. In their place, there were soft individual seats of various heights and sizes, covered in complementary colours of soft heather and green fabrics that sat against pale lemon and sky-blue walls, grounded by office–quality durable carpet tiles. Gone also were the garish posters that would have adorned those walls in previous decades, proclaiming to all who had the misfortune to be waiting for whatever health – or more aptly, sickness – care was their allotted portion that day. They illustrated the benefits of healthy eating, gave dire warnings or even apportioned blame for not washing your hands after having been to the toilet… and then, of course, there were those special ones. Discreetly tucked away in one corner, they often, in allegory or even in cartoon fashion, issued even starker warnings about the risk of sexually transmitted diseases. No, now the walls were, for the most part, clear of any adornment at all, save a carefully positioned framed print of a sailboat heading out into a vast, still ocean, and an abstract print of a vase of flowers beside which sat a pot of tea and two cups and saucers. All the place needed was a plate of bourbons on the ubiquitous square occasional table sandwiched between two chairs at a corner of the waiting area and we could nearly all join in the required illusion of health and normality, if not utilitarianism and boredom.
But of course, the reality was far from the wannabe picture suggested by this waiting area. The only reason any of us were sitting in this politically correct, décor-neutral and background music-free space was the flip side of the façade presented. It was because we were there to be told, or for some to be told more, about the impact of the lack of health in our own or our loved ones’ lives. For me, it was finally to face the fear that had been creeping up on me for the last months and even years, if I were honest. It was to meet the giant that had been waiting in the background of our lives; to look him square in the eyes and bow beneath the enormity of his presence, and to finally come to a place in my life where I would have to accept that he would now be ever present in our future.
Our first appointment
As I sat there on that warm sunny March morning in 2017, the enormity of what our date with destiny here would bring lay heavily on my shoulders. I looked around at the others waiting there like us, and saw in some of them what that destiny might look like. For the most part, people were sitting in pairs, some of similar ages to Ralph, whom I took to be couples, and others more likely to be an ageing parent and child combination. One of the pair was, in the main, reasonably to very well dressed; the men in coordinating shirt and jumper and the women similarly colour matched, perhaps with a necklace to complement the outfit – possibly a special birthday or even a wedding present that was undoubtedly aired on all special occasions, of which this definitely qualified as one. Today, however, the necklace was worn underneath a gaping collar that evidenced a thinner and more wrinkled neck than at the time of the gift or purchase. Then, of course, for both genders, there were good, solid shoes. The sort you would never have been seen dead in at the height of youthfulness, but now of necessity providing both safety for shuffling feet and security for the one sitting beside them.
That person was, in this setting, now labelled the carer. The one who provided that steadying arm for, or hand on the back of, the client, as we now had to refer to the patient, as they steered their rollator or Zimmer frame through life. This person, the carer, unlike their partner, the client, was frazzled and uncoordinated and had the appearance of living life in a constant rush. They wore a hastily donned jacket or coat, hiding wrinkled sleeves of a shirt or blouse, as an unexpected toilet run had been required by the person they now sat beside before leaving for this not-to-be missed appointment, meaning that there was no time to check appearances in a mirror, let alone go to the spare room to get the sports jacket or coat that would have been the preferred dress in which to attend the doctor’s appointment. In my case, it meant no lip gloss, and grabbing the first coat that my hand connected with in the cloakroom, which signalled to all that I was expecting a downpour and was ready for it in my full-length waterproof.
As I sat there looking at the other people around us, who also sat quietly waiting in this place we had all been summoned to, I wondered what they saw when they looked at Ralph and me sitting opposite or alongside them. We were definitely a couple, as I sat there holding Ralph’s hand while we waited to be called, and occasionally he would look at me and smile his beautiful smile. We had always held hands, even from the first time we went out together.
Amazingly, that was virtually a blind date. Ralph had got my phone number from a friend, phoned me and, to my great surprise, asked me out for a meal. I was in my early thirties and single. I was happy in my career in the health service in Northern Ireland and had absolutely no thought of considering looking for a boyfriend, let alone a husband. I was content to be single and had no expectation that that would ever change. As I was to discover on that first date, Ralph was a widower with five grown-up children and four grandchildren, but that didn’t concern me any more than the obvious age gap between us. What did concern me on that first date was whether he had a Christian faith, as I couldn’t contemplate a relationship with any man if he were not a Christian. Fortunately, it didn’t take long on our car journey to the restaurant where he had booked a table, for both of us to find out, through some subtle questions to each other, that, as we would say in Northern Ireland, we were both ‘well saved’. Ralph had committed his life to Christ in his early twenties and had continued to attend Brethren Assembly meetings in Gospel Halls. I was from a Methodist family and had committed my life to Christ as a young child. Our shared faith was the rock on which our relationship began and continued to be the foundation of our life together.
In the middle of my musings, while I tried to ready myself for the meeting with the doctor, Ralph was blissfully unaware of the significance of this appointment. We could have been in a coffee shop or our local shopping centre for all he knew, and probably that is where he did think we were, as it was his default for when I said we were going out. As long as I was there, Ralph’s world was safe and secure. He just got in the car when I said we were going out, and sat quietly until I took us to where we were appointed to be on this or any morning.
I spoke quietly to him to say we were early for our appointment and we would just wait until we were called. He just smiled back and held my hand. It struck me then that his life would be like this from now on. Waiting. Waiting for appointments, waiting for me and on me to be with him. In the quiet that was the waiting area, apart from the usual comings and goings of such a place, I had a sudden frightening thought that perhaps he was in fact waiting to die, but I quickly put that out of my mind. I told myself firmly that we were both waiting together to see what the next phase of our living would be like.
As time flicked by on the digital clock on the wall – another sign of the times that the healthy silence was not even interrupted by the ticking of a clock – individuals and couples shuffled or sped up and down the adjoining corridor. It was not hard to recognise the professionals with their purposeful walk, heads bowed and arms full of papers and files going in and out of rooms without knocking or asking, and equally not hard to identify the others – the ones here to be seen. The patiently waiting, the problems, the case studies, and then the newbies like us. We were the clean, pristine slim files, yet to be filled with reports of assessments by a range of professionals we had still to meet; files that would be filled with the results of blood tests and scans and myriads of copy letters to GPs and other interested parties, all of which would be circulated widely to everyone but us.
Eventually our turn came, or rather Ralph’s turn, as I was to be sidelined initially while he was taken away by a nurse. I was advised I would be called to see the doctor later. Even though we were in this special place, where Ralph and others like him received special care and attention by professional individuals specially trained to provide it, I worried for him and about him, as he was now alone, with strangers and without me; that is when I really began to consider the enormity of why we were here; the reality of what this hour in this place would mean and what our lives would become. Because here Ralph would get his label, his diagnosis, his destiny, and it would be that most fearful of all labels, to me even more fearful than the cancer label. It would be that cancer of the mind: dementia. Oh, he would get a definitive label, I knew. It would have a clinical subtitle, an unspellable name, but it would be his destiny and, by covenant, my calling. Ralph would have the dementia and Carolyn would have the working out of it; a skewed partnership, where the greater would become the lesser, the leader the led and the provider the receiver. We would for his evermore be defined as the cared for and the carer, and wait together for others and each other in the shrinking world that would become our lives.
Eventually it was my turn to be shown in to see the doctor, who looked more like an A-level student than a doctor well on the way to being a consultant; to sit in a smaller version of the waiting area and look into the eyes of a much younger woman who had spent all of her morning looking into the eyes of people like I had now become. A carer, a person to be contacted, spoken to and with about the cared for. Someone who in essence would take over Ralph’s life, would speak for him, stand up for him, protect him from others and himself and, in turn, be defined by my connection to him. As I sat and listened, she outlined what she had asked Ralph in terms of questions posed time and time again in initial and repeat appointments in this place. I learned from what she said to me that there had been a significant deterioration since he had been seen in the assessment clinic three months earlier.
And at last, from this doctor I had never met and might never meet again, I heard the label’s name. Actually, two names, as I was to discover. For Ralph, the double challenge of having mixed dementia (Alzheimer’s disease and vascular dementia). A double portion of confusion. Two parallel lines of decay travelling at different rates but ultimately reaching the same destination. We were now officially diagnosed, defined and dispatched on the dementia journey; a well-travelled if meandering path that would take us both to places that we never would have willingly or intentionally sought and which would ultimately lead Ralph away from me into his own unique world. The file in front of her would begin to be filled up and grow fatter with papers all about him, and various files with his name would now be opened in several offices across the service providers we would interact with in the future. We would be in filing cabinets and spreadsheets, on contact lists and desktop computers, and our personal details would now become shared property. Shared with people we would never meet and never know.
The giant was now unleashed and in the room. As I listened to the doctor go through what she and the team had planned in terms of future tests and appointments, I had an oppressive feeling of a heavy weight bearing down on my shoulders. She talked and I did listen, but I could not recall later any detail of what she said. I heard words like ‘medication’ and ‘therapies’, ‘stimulation’ and ‘maintenance’ and felt numbed by it all. I only felt an overpowering dread that this weight would get heavier and heavier in the coming days, weeks and months.
All this time Ralph was in another room, waiting for me to join him. The doctor said with a smile that he hadn’t wanted to go back up to the waiting area but wanted me to come to him. I was really pleased to hear that. In some sad way it justified my presence with the doctor and my status with the system I was all too aware I was now entering. As if on cue, she then changed tack entirely and started to talk to me about me and my needs – as a wife, a carer, a point of contact, an enduring power of attorney. We talked about practicalities, about legalities, about services and support. In a clinical and logical way, we agreed some processes and timelines for Ralph and for me.
We were in and running. The system would now overtake us, if not take us over, and I had a flashback to something a young person had once said to me many years before when I asked them about their experience of health services. They said they felt that services had an opinion about them without even knowing them; they felt they were just a file passed round offices. I hoped that decades later, my experiences would be more positive. After all, this was a health centre and well-being was the name of the game we were all playing.
As we left the health centre, the sun was shining. It was such a beautiful spring day with trees in leaf. We could see some flowers with their happy colours of yellows and purples brightening up the roadside. As Ralph and I walked slowly back to the car, it was lovely to feel the gentle breeze on my face and sense the weak sun trying to warm what was a cool morning. I felt encouraged and calmed by the fact that what had been, to some extent, an unpleasant experience was ending with a memory of a bright and beautiful spring day.
Ralph was tired after all the walking up and down corridors and having people ask him interminable questions, so I got him into the car and told him we were going home. I had planned to take him for a cup of coffee after the appointment, but it was all a bit too overwhelming for me, let alone what he might be feeling. I just wanted to get us both back to the safety and sanctuary of our home.
As we drove, I asked Ralph what the doctor had said to him. He thought for a moment and then said that she had just asked him a lot of questions. I asked if he had been able to answer them. He just looked out of the car window and was quiet.
I debated with myself long and hard as to whether I would talk with Ralph about the diagnosis and what it was all likely to mean, and decided I would. As was the ability of his understanding so must be the level of our discussion, and as both were on a downward trajectory, it was either now or never.
Later that night, I asked him if he knew what the doctor had said was the matter with him, and he replied, ‘No, not really.’ So I told him that the doctor had said his forgetfulness was caused by dementia and that she had diagnosed that he had both Alzheimer’s disease and vascular dementia and that he was going to get new tablets for it, and we would go back and see her in a few weeks. He just said, ‘Oh.’ Then he said he was tired, so the both of us lay down, side by side, on the bed and were quiet.
Dementia – my giant
When I was a child, church and Sunday school were a central part of my life. I was raised on Bible stories, parables and prophets, sin and redemption, failure and forgiveness. I particularly remember the Old Testament stories we were taught. The fall in the Garden of Eden; the almost-sacrifice of Isaac; Joseph’s coat of many colours; the battles and victories; Samson and his long hair; the love story that was Ruth; Esther’s wooing of a king to save her people and, of course, the forty-year wanderings the children of Israel had to endure in the desert because of their disobedience. They all faced their giants: literal ones, like David with Goliath, or perceived ones, like Moses, an unwilling leader. Yet they all overcame them. How? By an absolute belief that God was bigger than the giants that were in front of them, and by their living out of that belief in the actions they took. They accepted that while without God they could only see giants, with Him they were enabled to see that these giants were actually just mini characters in God’s plan for their and their nation’s lives. They came to realise that those giants would or could never prevent or stand in the way of them achieving God’s will.
I realised that night that Ralph’s dementia was my giant, both literal and metaphorical. Over the previous months it had been this looming presence in my life, influencing my thinking and actions. I knew that just like those Old Testament heroes and heroines, I needed to accept that I could never defeat this giant by myself, but I most certainly could vanquish its hold over me with God on my side. I determined not to try to hide from this giant of Ralph’s dementia so that it was always at my back, lurking and hovering. Rather, I would keep it where I could see it. Face it and have it face me. I didn’t know how I was going to do that, but I had an unswerving feeling that God knew, and as long as He did, Ralph and I would be alright. I determined that from now on, Ralph and I would use the ‘D’ word in conversation. That we would accept his forgetfulness and decreasing awareness of what was happening in and around him, and we would endeavour to live every moment of every day as best we could. I drew great encouragement from words that Paul wrote to the church at Philippi:
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.
We would face this giant together. The three of us: Ralph, Carolyn and God. I prayed that wherever this journey would take us, Ralph and I would be given grace to find contentment where we were and strength to live each day, even in this new unknown, uncertain world of dementia.