If only one tear.

I have been with the Malta Dementia Society for 21 years now, but I never stop learning and this past week has been almost a game changer.

I was really sad on Wednesday morning because we have been trying to get a new activity off the ground without success and two of our favourite activities have just a few attendees. Basically, I was feeling sorry for myself and for the Society…. I really was down in the dumps and asked for guidance…how do I continue..please help me dear Jesus.

Thankfully, I am very busy with all we do and the day passes. I had not planned to join the Reaching Hands support group session the same day at 4pm but just after it started, I received a whatsapp message from one of our very faithful members. He said that there are 26 people online for the session and that must be a record! Oh wow..my heart skipped a beat …and then I immediately thought..thank you God …you sent me a very clear message not to give up. I joined the session and lo and behold, there they were..all those people..i was almost moved to tears. This time for joy. I am not the type to give up at all, but sometimes it is very discouraging. Which is really silly of me too because I know, twice over, how difficult it is to cope with family and a relative with dementia..I did it..I was there..and I was totally exhausted..and it is not something that ends in a few months..it takes years.

Today I treasure every moment I had with my mother and my aunt ..and my dad..and my in-laws..they are no longer with us..but I do treasure all the sweat and time and energy I gave them..the hole they leave can never be filled but the love they left behind is what I hold on to.

But the story doesn’t end here. This week, we had another big talk, not me this time, and one of us was really feeling incapable and nervous, which surprised me because this person is an expert and so calm and so patient. And I am so happy today because this person got the same response I did..an overwhelming one too..probably one of the best ever.

The lesson learned is never to give up, even with all the odds against you and even if you are the last man standing.

And I have also learnt over all these years, that even if we dry one tear, even if we reach one hand, even if we give one hug, it is enough for us. We do not need crowds, we do not need any praise or pats on the back..we just need to see the face of someone who feels the weight on his shoulder has been eased..we just need to see the tear dry up and a glimmer of hope appear in that same face of despair. Although there is no cure, hope can never be taken away. Not hope of a cure but hope of a journey that is taken together, holding each other’s hands, and moving forward as best as one can.

So, in this jubilee year of Hope, let us reach out to one another and dry each other’s tears. Let us walk together, even through the impossible. The passage may be rough but together we can do it. Whatever the outcome, hope is what we must cling to. We live today, day by day..this moment is ours and let us make the most of it.

Matthew 25:1-9

I have lit the oil lamp, and I am waiting for my spouse to take me home. This is what Matthew 25, verse 1 to 9 asks us to prepare for.

Whether we believe in the Catholic religion or whether we do not, we all know that death will come. We do not know when, what time and how. We can feel invincible and act as though we do not need anyone, as we see so many people do. Are we one of these people?

When you are young, you never think about your last day on earth. And why should you? You are young and have a whole life ahead of you. Every new day brings something different, something exciting perhaps. You have energy, strength and vigour. (Apart from the sick of course).

However, as you get older and less naive, you start to realise that hardships come our way more than we would like. We wake up every day hoping to enjoy a carefree time, with no worries or hassles. We do not want to face unpleasantness and try to carry on oblivious to whatever is around us. We put our head up high and pretend that nothing bad can reach us.…until our bubble bursts and we come crashing down.

Dementia is one of those bubbles that ram us into the ground and wake us up to the real world and maybe the end of the world.

Dementia is just one of so many conditions, illnesses, problems that we, as a human race, face. If it is not dementia, it is cancer or ALS or MS or a million other conditions. And yes, our world comes crashing down. Suddenly, life is not beautiful anymore. If only we had not placed our feeling of invincibility so high in our lives and thought that we were immune to the real world and all that it brings. Maybe the thump to the ground would not be so hard.

We know not when, what time and how we will depart from here. Earth is just a stepping stone, a journey that we must take, however long or short it may be. We are faced with countless decisions and trials that shape our lives and take us on different paths. Do we lose our way? Yes, we certainly do. Some people lose it for many years, perhaps through the influence of drugs, alcohol and a wayward life. Yet, at one point, we hope that everyone gets back on the train of life. The train that has many stops, and those depend on choices, and our choices will determine how many and how long our stops that we take will be. The train keeps going and going and we must work hard to stay on this journey of life, until we finally come to our last stop. Our very last stop.

Dementia, cancer, heart disease and countless more, may shorten our train ride but, for whatever reason, our time will come and therefore we must prepare. We must fill up our oil lamps and keep them full so when our spouse finally knocks on our door, we are ready to open it, and we are happy to open it. If we are prepared, we need not be afraid. We need not fear judgement, we need not fear this last train stop. All our illnesses, all our troubles, loneliness, hurts, helplessness, will fizzle away to nothing. They will disappear totally. Yes, we are afraid, I am too, but I want to learn how to prepare, to be ready, to be waiting, and there is never a better moment to start than today. Today, right now. Fill up your oil lamp and light it up. The light will fill you with warmth, peace and serenity. Go now, for your last stop awaits somewhere, sometime and somehow.

Times of Malta photo taken on 13th December 2024 at the Palace

Times of Malta announces:

Prof. Charles Scerri was appointed to the National Order of Merit during the Republic Day award ceremony on Friday. 

President Myriam Spiteri Debono awarded the recipients of Malta’s highest honour at a ceremony held at the Presidential Palace in Valletta. 

‘The honours are announced and presented each year on Republic Day to people who “distinguish themselves in different fields of endeavour”. Recipients can be appointed to one of four grades of the National Order of Merit, the republic’s highest form of recognition.

This year, two people were made Officers of the order and seven were appointed Members. 

Appointments are made following proposals by the Nominations Committee set up in accordance with the Ġieħ ir-Repubblika Act, and on the advice of the Prime Minister to the President.’ 

Republic Day honours 2024

Officer of the National Order of Merit – Prof. Charles Scerri

A neuroscientist and advocate for dementia care. Scerri obtained his doctorate at the University of Dundee and returned to Malta in 2004. 

He co-founded the Malta Dementia Society and played a major role in raising awareness about the condition and care for dementia patients. 

He chaired Malta’s National Dementia Strategy Group, authored the first national dementia strategy and has contributed to many international organisations focused on the conditions. 

Scerri lecturers in neuropharmacology and dementia studies at the University of Malta and has published extensively. He sits on the scientific advisory board of the EU Joint Programme in Neurodegenerative Disease Research and previously served as Vice-Chair of Alzheimer Europe. 

(Times of Malta)

I can hear the chirping of the birds in the trees. They are in the distance, but the sound fills every corner, every tree, every blade of grass, every petal, every drop of dew, that sits in the fields where I stand. I look around and all I can see are slope after slope of hills. Little villages are clustered in the valleys that dot the whole area around me. Birds of prey dance through the sky above, hovering and then diving for their prey. It is a wonder to see, a wonder to hear. I imagine the deer behind the trees, afraid to step out in case I see them, yet I know they are there. Cows and sheep graze in the distance. Horses gallop down the hill as they make their way to the stables. Farmers sit on their tractors working the fields. It is picture perfect. It is my happy place. Peace, silence, beauty. This is our world. This is the world I love to live in.  Far away from noise, danger, anger, fear. A world of kindness, welcoming hands, love, smiles and friendship.

Modern life bulldozes our dreams and demands our attention, our time, our whole day. Social media blinds us and robs us of the time we can spend in my painting above. Yet, we let ourselves be washed down this rapid river, this current, dragging us over sharp boulders, rough ground and the exit to the vast sea of nothing. An empty sea, where fish barely survive because of our selfish ways of existence. We try to grasp a branch to safety, but the velocity is too much, and we cannot hold back, we must let go. Or so we believe.

Yet, this gorgeous world remains. The quietness, the tranquillity, the stillness. They are there, inviting us, waiting for us. Our heart shuffles our feet towards, our soul yearns. Our mind pulls away. Why, why?

As I turn towards, I take another glimpse, maybe my last. My heart races with excitement as it is filled with the soft sound of chirping. And then, it starts to slip away. I know I am losing you, my happy place, my beautiful world. My feet will not turn, my body will not turn. Help me, please. I want to stay. Yet, the scene is disappearing, I am losing you, I can barely see you anymore…just one last try, one last push as I try to reach out. My arms do not move, my feet keep walking. I am losing, I am losing, I am trying…but you are gone. The last moment, the last glance. My eyes are totally clouded. I cannot see you anymore. I …I …have lost you.

As my feet keep walking, the grass turns to concrete and the chirping turns to noise, to the whirring of the engines, the blaring of horns, the shrills of voices, the clanging, clinking, screeching, and my head is thrown into shock.

And now I ask, what is the world of dementia. When a person sinks deep into this go to place, what does he see? And a person without dementia, what does he see? Are these worlds the same? Are they entangled into one? Are they pieces of a jigsaw? Are they a dense concoction of life’s experiences?

I really would like to think that a person with dementia walks up those slopes of green, of serenity and calm, of sheer wonder. I hope that their go to place is inside that photo that fills my memories and my life. My happy place, their happy place. I pray …and I hope.

This is surreal. I am floating somewhere in the air. I do not know where I am. I do not know what is happening. Yet, it is so beautiful here. There is silence, there is peace. The air is moving me gently through a stream high above, but I do not hear a sound. I feel so light, so calm, so free. I am detached from all that is below, far from the chaos, the noise, the voices, the screaming, screeching of tyres, fears, anger, tears, hatred…I am free.

I often wonder if that is how you felt in your dementia, if your life was a world so different to this one. Was it? How? Please explain. If it was, then I too want to be part of it. I too want to float in the air, away from this world. Take me with you and let me be part of this heaven on earth. Take me far from here so I can be with you.

We fear dementia so much. I fear dementia so much. Dementia took away the lives of my grandfather, his daughter, and my dearest mother. It gnawed at their memory, their consciousness, their recollection, their remembrance, and everything to do with the past, their whole life before today. Dementia consumed their brain and devoured their entire self without mercy. This is how our world sees it.

Was it so harsh? How did mum see it? Tell me mum?

I believe it hushed the commotion, the turbulence, the pandemonium, the turmoil and the madhouse we call our world. I believe it took you away to an orb we know nothing about. A place which is muted, muffled and quiet, a place where there is no tomorrow, where there is no yesterday, where you can hear a pin drop, a place with no expression, no communication, noiseless, a place to nowhere…no, a place to somewhere.

Explain it to me mum. I want to know more. I want to understand and see through that stare, that expressionless gaze. I want to know where you go. I want to feel and comprehend. Take me with you to this sanctuary, to this abode. Is it a hole in the darkness or is it a window to light?

Take me where you are going so, I too may see, and I may accompany you through this passage and direction you are headed for.

Let me understand so that I may quiet the fears of so many, of my own self. Let me realize that it is just a transition to the eternal life we call heaven. Let me believe that the end of life is but the beginning and what awaits us is incredible happiness, where there is no hunger, no ire, no hurt, no pain, no greed, no despair, no unease, no distress. Yes, take me there so I may see for myself.

Wow is it hot this week!

I think back to all our summers from as far as I can remember, till the last summer we spent together before you moved to a Care Home.

Up early to cook in order to get to Sliema by 9am was important to me, to my children and most of all, to you, Mum and Dad. Parking was always an issue near the Swimming club, but who cared!

The freshness, relief and total bliss of the sea was worth every imaginable sacrifice.  The sea is the best destresser in the world…as you let your body float and dip your hair in the cool water, all your troubles literally wash away.

As a child, I never wanted to leave the water. My children were exactly the same…and now my grandchildren too. You showed us the love of the sea, and we passed it on to the next generations.

We started our first summer in the sea and so did you Mum, Dad. The smiles, the happiness, the banter, laughter, we are truly blessed to have nature’s gift around us.

45 years being part of the swimming club was a big part of our lives and we had lots of friends to share this happiness with. And it was the last thing we did, hours before we took you to the Care Home. From swimming in the sea, to the main pool and then to the baby pool, it did not matter at all, as long as we saw and felt your happiness as you glided through the water when you could, and then stood up in shallow water when you couldn’t. You truly loved it, and it was and is one of the biggest obstacles that came in the way of your happiness when we could not take you anymore.

The Care Home had a pool but you weren’t allowed to swim when you became incontinent so that was short lived. You had to watch others until you just turned away in disappointment. It was no one’s fault of course, it is just the way your life snatched you away, slowly but surely.

As climate change makes summers much hotter, we do need to look after ourselves and our loved ones. However, we should never deprive others from this gift, either because we cannot make the time, or we do not feel like. I say to you, make the effort, for an effort it may be, but the reward is much greater. Do not deprive your loved ones of these moments of happiness because life has a way of taking them away before you know it.

Mum, your happiness, smiles and laughter are etched in my mind, and I think of you so much as I dip into the water of life. I hear your sounds of joy and feel your delight as you frolicked in the sea. My smile joins yours and the happy memories are a treasure to me today. 

What does it take to take your loved ones to enjoy the simple pleasures of life? We get so caught up in work, housework, shopping, of course we do. Yet, somehow, we forget that life is for living. When did it become a crime to leave the house undusted, or the shopping to be done on another day, or a work text unanswered after office hours?

Bring a smile to your loved one’s face…that is what matters most.

I have this vivid memory of a boy who was bullied at the swimming club where my family and I swam every summer. Every time he tried to swim, these boys would duck him repeatedly and stand on his shoulders as they pushed him under. He would come up to the surface gasping for air, only to be ducked again. This childhood memory appears in my thoughts every now and then, which is very upsetting. Please do not ask more details as to where the parents of all those children were or how long this lasted, as I do not remember. These unsettling incidents remain imprinted in a child’s mind, and you can only bury them but never forget them.

Very often, I type my questions on the computer to see what the internet says about them. Do we not all rely so much on this other ‘brain’? All too often, we ‘memorise’ what it says and believe it all, actually affecting the way we think for ourselves. This happens most especially when I have some ailment or other and want to know more. However, in this case, I will not be tempted. If bad thoughts come to mind, then I will just push them away and not dwell on them.

Yet bad thoughts do come to mind, especially when you look dementia in the face. You jump straight to tomorrow before facing today. We advise that you must be prepared and know what is coming, but you do have to live today and not tomorrow. Bottom line is we drown ourselves in thought.

In Maltese we have an expression that tells you to open your door wide when bad things happen concurrently. We tend to face several unfortunate experiences all at once…why?

Two years after my mother succumbed to her dementia, my father was really struggling with heart disease. He had several heart attacks before and after mum’s death yet the medication he was on really worked and was keeping him alive. In January 2015, I had a planned ankle operation that required a 3-month recovery at home. I went ahead with the operation, despite the circumstances as it was now or never for me. Dad was living with us by then, so I had company at home.  Unfortunately, a couple of weeks later, Dad was hospitalised, and the consultant told us that he didn’t have long to live. He kept him in hospital for a couple of weeks and Francis, my husband, used to visit him every morning, after he would have helped me get ready for the day. It was a very tough time for Francis as he had to work as well. One early morning, at 5.30am to be exact, Dad called us to say that he almost died. As he told me this, I was devastated. Stuck at home with this horrible plaster on my foot, unable to walk, unable to visit him, was very unpleasant. Dad was really upset and agitated so Francis got out of bed and went straight to the hospital. I rang the consultant later that day and he acknowledged what happened. Dad really was on the verge of death that morning. The Consultant asked if I would take him back home at the same time as I asked him to discharge him. I wanted Dad home to spend his last days with us, not stuck in a hospital bed all alone. Dad came home that afternoon.

During this whole time, my brothers were coming and going to Malta on a very regular basis. Martin from Australia and Anton from UK. When I say this whole time, I mean from before mum’s passing in 2012. A case of ‘so far yet so close’ to reverse the expression.

On hearing that Dad was really at the end, Anton booked a flight for him, his wife and daughter (Katie is a nurse) and came over. Katie and Anton spent the last few nights with him, taking it in turns to keep watch. I was just a couple of rooms away.

On the night of the 24^{th of} January, Francis got a telephone call from his mother that his father was rushed to hospital. He went straight to hospital while I settled to sleep. At 2am, the front door opened, and Anton walked into my room (he was staying at a hotel nearby while Katie was with Dad this particular night). He told me that it was all over, and Dad had gone. I was in shock but stumbled out of bed to be by his side. We turned on the lights and all just looked at him. As we were calling Martin in Australia to let him know, the front door opened again and Francis walked in from the hospital, only to find all the lights on and us around Dad. It was 2.15am on Saturday 25^th January 2014.

Although in these moments you want life to just stop, life is just relentless. As we arranged for the funeral, Francis visited his father, and the situation was under control. Dad was not buried straight away because we waited for Martin to come over. On Sunday, Francis was happy as his father seemed to be on the mend. As Dad was taken away from the flat, Francis’ mum moved in with us until his dad returned home. Fast forward to Monday 27^th January. Francis’ mum and I were sitting on the sofa watching TV when Francis called me from the hospital with shocking news. His Dad had died. What??? I looked at his mum and just could not believe what had just hit us, and what was coming to this most wonderful mother-in-law of mine. I said nothing to her and waited for the family to arrive. Francis, his brother and sister, stood in front of her and gave her the news. It was a very sad moment and a great shock to her.

So just two days after Dad died, Francis’ dad died too. Have you ever felt you were drowning? Well, we did that day.

Burying both our dads in the same week was not what we ever hoped for. Yes, life is relentless. Life makes you feel like you are drowning. Life throws everything at you at the same time. Why? I will not ask the internet why. I will just accept that this is life and yes, sometimes you feel like you are drowning. But …you know…somehow you climb back up…you come up to the surface..until the next ducking…is that fair? Is it fair that there is no cure for dementia? Is it fair that mum had to suffer? Is it fair? Never ask that question. Life is what it is. You must accept it.