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.

A new life..a new baby has been born! What joy! Nothing can describe the feeling when you bond with your flesh and blood. Adopted..oh, so so special. When people adopt or foster children they have a place in heaven in my book. You are giving life to a child who has little in the world …that is pure happiness!

In the usual scenario, parents shower their children with their immense love for them and do their best to give them all they need, and all they themselves did not have. There are many sad cases, but I will not dwell on them here.

Let us think back to our childhood, from the days we can remember to now. There must be many memories you hold on to that give you that heartening feeling inside. The laughter, excitement, joy, elation, amusement, warmth, and most importantly, experiencing that feeling of safety.

When a child falls and hurts, he or she cries and runs to the mother or father’s arms..a scene we see so often, and which we should ponder over more and inhale the strong emotions of fear from one side and protection on the other. It is an intense moment.

Let us now reverse the situation.

A person with dementia suddenly finds himself/herself pushed into a room, 4 walls, a blank space. This room is white with no window and has one door. A door that cannot be opened from the inside. Yet, that door has a handle..and that handle can be turned by you. You? The spouse, sibling, relative, friend..whoever you are.

Let us talk about you. The ‘you’ who is so important to a person with dementia. You may not bother, have too much to do, are offended because the person with dementia does not recognise you, or you are the one who lives abroad and is remembered the least.

I ask you now to push all that aside. Cast those thoughts out, smash that armour around your hardened heart and let go. Remember your childhood and that love and protection you received and allow all those emotions to come flooding back. Release your heart and your soul from ill thoughts, from sadness, anger and all that is clouding your mind and heart. Pick up that photo album and go down a journey.

‘Hurry. Hurry’ I say to you. Do not waste another moment. Do not allow yourself to think anymore. Just go. Go to the place your mother, father, spouse, brother, sister, cousin, friend, is waiting. Yes, waiting just for you. Today may be your last opportunity.

Give that person all they need, all that you would wish for, and all that they gave you. Rekindle those memories of safety and protection in their arms by reaching out your hand this time. Give them the safety and protection that they gave you, and that they need so much now. ‘Inhale the strong emotions of fear from one side and protection on the other’. Put your head on their shoulders and shed your tears, cry with them, laugh with them. Reassure them, put your arms around them, even if you never did. Were you close to your father? Perhaps you never had any relationship with him. Now is a good time to start. Hold him tightly and let him feel the love emanating from your heart.

You may be thinking I am writing a romantic story, or some ridiculous scenario, one that is seen only in films. Well, to tell you the truth, I am not. I have experienced it myself and, you know, I hang on to that memory now and will always do so. It is what keeps me going. It is what gives me the solace, the energy to move on.

When a family member dies, we are, most often, left with emptines. However, this emptiness can change to satisfaction, to relief, and most of all, to peace of mind. That peace that allows you to close your eyes at night and slip into beautiful memories of the life you had together. This is more precious than any money or possessions you may ever have. What are coins and notes when your house is empty, and your heart is barren? What is a beautiful house if it is not a home?

There is no shame in telling your parents or your children that you love them.

Think about what I am saying but do not think for long…just go. Turn that handle and fill that windowless room with light and love.

Living is a beautiful thing. We are surrounded by nature, greenery, chirping birds, animals, the sky, stars, the sun, and the moon, and most of all, by people. All these aspects are very important in our lives, and we were created by God to be amongst them. ‘No man is an island’ is a sonnet that was written way back in 1624 by famous poet John Donne. Here is an extract:

No man is an island,

Entire of itself;

Every man is a piece of the continent, 

A part of the main.

Yet, why is it that some people prefer to be all alone and lock themselves up in their own world? Several reasons come to mind, many pretty sad. However, we are placed on this earth to live it and not exist. One must never judge another person’s troubles and decisions but instead encourage and give hope to the other. Sometimes, one feels safer at home, within the confines of those four walls, not having to speak, not having to prove oneself, not facing embarrassments or awkward situations. I know that a person with dementia will feel this way and, if given the chance, will choose to stay home and not want to leave.

Yet, life is short, and whether we have dementia, are crippled with disabilities, have cancer or some other unpleasant illness, or are simply depressed, we must make that effort to turn the key and open the door. Otherwise, one may realise that life has passed by, and no one can turn their clock back. Turn that key before it is too late.

The first stages of dementia are very frightening for the person living with it. However, as it starts to set in firmly, that person enters a different world. A world where anger, fear and happiness are quickly forgotten. Yes, both good and bad, both pros and cons, are not lasting memories anymore. They still feel all we do, but also forget more quickly than we do. They are ‘protected’ in the four walls of that same dementia where the key doesn’t turn, and no one can leave or enter. If only dementia were as important as covid was to the pharmaceutical companies, to governments, where they would invest the time and money to find a cure, a solution. Until then, we must live our lives as best as we can, each and every day. We must treasure each moment for no moment is bad. An unpleasant thought, happening or experience is there to teach us to be better people, to take care of what we say next time, holding our speech before we are sure that our words will not hurt the other. Yet are we willing to change? Are we willing to live in a better way, to be a better person? Some do and others may follow a different path. Until another experience comes along and one hopes that their attention is caught, and they plunge into the effort of change.

Yes, life is for the living. The world is so beautiful …we just have to see it. Walking along a city road shows us lots of traffic and noise. Yet in that traffic, there are people sitting in their cars, the hustle and bustle of the day is being played out in front of us, the moving of crates in a shop, the ins and outs of customers, the bus collecting and depositing passengers…so many many scenes…just stand back and watch.

And what of the countryside? Oh, it is superb. Look at God’s creations..every species of insect, bird, animal, colour, sound. Open your eyes and see what lies before you. Enjoy the beauty of your surroundings, whether you are in Maltese countryside, or in another Country. It is still so serene, so precious. Listen to the rain drops on the leaves, the pitter patter of snow on the ground, the whistle of the wind in the trees, the clap of thunder in the sky…all so amazingly beautiful.

Yes, life is for living. To you who has dementia, do not despair. God loves you and will soften the blow. Let Him take you wherever He may go, let Him lead your path to that place He chooses. Do not fight nature but take its hand and walk. He walks beside you and you are never alone. Live your life, in whatever form it is, for one day it will end, and you do not want to miss a moment, any moment, each moment. Open the door to your life and feel the air against your face and take the first step. It may be your last.

‘Hello, I hope you do not mind me calling you, but I have dementia’.

That struck me hard and I stopped all that I was doing and waited for the next words. ‘Please help me as I do not know how to solve my problem. I used to be able to fix this and do that..I was really good at what I did and many reached out to me because I was the only person able to do this..’ I listened and tried really hard to help you, making a huge effort not to show my cracked tone of voice, because, yes, you broke my heart. You knew so well that there was no cure and I had to comfort you..I had to try really hard. How? For me, there are a few solutions, but the one greatest solution I have is to resort to prayer. Maybe, some of you do not agree, but for me, asking God to help us is what we really can do. ‘ Ask Mary to give you peace in your heart and the ability to face each and every day. I too will pray for you’. This person is older than me and I asked if religion was part of life and the answer was yes so I went ahead.

So what if this person is an atheist? Well, I will still talk about prayer because that is one thing that no one can take away from me and the solace I find in prayer is nowhere else to be found.

Oh, how many times I have tried to find peace of mind through people, yet I always come to a brick wall. Facing dementia is like facing a tsunami coming straight at you. How can you avoid it?

You cannot. You have to embrace it and go with it. Ha ha, says the expert. Not in the least and I hope I will never know what it is like. However, having faced illness myself I can say that my only true solace was leaving everything in the hands of God.

Mum went through this tsunami and lost everything she had physically, mentally. Yet, her inner heart remained there and when I held her hand and said the rosary with her in her last three days, she lay there in peace, looking at me calmly. I prayed so much for her to find that peace and I know for certain that God granted this for me, for her. She walked the passion of the Lord, she walked the hill of Golgotha, and she walked suffering and pain. And so too does this person over the phone. How can you tell a drowning person that everything is going to be alright? No, you cannot and it is not fair to do so. What you can do is ask for peace to enter that person’s heart and calm the fears and severe anxiety. A person with dementia becomes isolated and alone and only God can enter his or her heart – no one else can do that.

I rediscovered this after a brief stay in hospital during Holy Week. Choking on a bone, I could only look at Jesus on the Cross and ask for help. Was death at my door? Yes, it would have been if it weren’t for the excellent doctors in the ENT ward. I asked myself ‘is this it? Am I going to die now, right now?’ I hung on tight to my husband, but he couldnt do anything..but yes he could and he did. He prayed, I prayed and others prayed. Yet, at the end of the day, it was Jesus on the Cross who held me and gave me hope. So too, those with dementia. Leave it all in the hands of God. Death is to be feared. Yet, death is the start of eternal life. Going over that threshold is terrifying and only He knows when it is time. It wasnt my time yet…but my mother had to face that time. This person on the phone also has to face that time.

Yes, it can be very, very lonely in that place.

Article written by Anne Cuschieri and featured in

The Malta Independant on Sunday of 24 March 2024

I am sitting in Church. It is dark except for a bright light over the altar. The host is displayed in the monstrance (or ostensorium – it is the vessel to hold up the host) and two candelabra are lit up next to it. There is total silence and peacefulness. This is where I escape to at the end of the day to get away from the madness of life. I am lucky to have this place to go to.

My thoughts fall on the people with dementia, on their carers and all the telephone calls I receive each day from families who find themselves lost and alone, and so tired. Their loved one has dementia, and they have no idea what to do, where to start from. They are experiencing grief, desperation, and anger. They feel so many emotions as they try to handle the situation and look after their loved one. Dementia is cruel and there is no cure. How can I help them? Oh, I do, in many ways, so do our teams at the Malta Dementia Society. Yet, again I ask, how can I really help them?

I know what they are going through, I know how they feel because I was there myself, both with my mother and my aunt. When your loved one shows signs of dementia, you try to ignore it. You think of yourself and push it outside, push the problem aside. Yet, the person in front of you, that person whose symptoms are starting to appear, that person…what is that person going through? Have you stopped to think of that person? Are you so focused on what lies ahead of you? Yes, of course, you are tired and worried. Yet, what about that person in front of you?

I remember observing my mother when symptoms started to emerge. The look in her eyes spoke a thousand words, and words are what start to become a problem. Her eyes showed fear, anxiety, and inner turbulence. She would look at us and almost beg an answer from us as to what she was experiencing. She did not understand, she could not put a finger on it, she could not believe that this was happening.

At that time, ‘dementia’ was taboo, never spoken of and many did not even know it existed. My brothers are both doctors, living abroad, so they helped so much, so did the psychiatrist, but that was it…no services, nothing. My father, brothers and I learnt as we went along, helped my mother as best we could and faced the challenges one step at a time. Yes, the emotions were all over the place and the stark reality of the situation was hard.

As the dementia progressed, a huge sense of grief came over us. We were losing her slowly. My family and I dedicated all the time we could spare with her and my father. We focused on helping her and making her happy. She slowly went from a person who was so afraid of the changes she was experiencing to someone who started finding it hard to communicate.

Did the fear remain? I am not sure at what level, but, yes, I am sure it did. Could she think for herself? Science says a lot today. Dare I say what I believe? Yes, I will dare because I know we were special to her. Maybe she didn’t recognise who we were, but she knew that we were special. Her eyes spoke her emotions, her wishes, her fear. Her eyes said bye to me as she slipped away. Her eyes were the door to us. She lost her speech, her ability to move. She lost it all over 12 very long years. Yet, she remained a wife, a mother, grandmother, aunt, and friend to all who knew her.

‘Inside every dementia there is a person’. This is printed on our MDS t-shirts. This is the true reality. Take a step back and look deep into their eyes. They are still there and do not forget that!

Written by Anne Cuschieri

Secretary and PRO of the Malta Dementia Society.

The tears roll down as you look outside the window that leads to the garden. Outside, an elderly man walks alongside his wife as does a young woman with her mother. There is a slight breeze and the flowers bend softly in the wind. Three cats are sleeping on the same bench, stretched out in the warm sun, oblivious to the people around. ‘You loved cats, have you noticed them?’

I look at you. You look back at me. Your eyes soften as you see me. Those tears of emotion dry away. Were you lonely? Why were you sad? I am here now.

A person with dementia cannot express emotions like we do, and tears are a window to what he or she feels inside.

I reach out for your hand and hold it. You smile. I feel reassured that you are happier now. You needed company..of someone you may still remember..or maybe someone who seems to be important ..who knows what I am to you..but I am someone who means something to you.

I hear the carer’s voice. ‘She has been very quiet today and did not eat’. A feeling of guilt comes over me. Dad has been ill and I didn’t make the time to come and see you yesterday. I was busy! Oh my goodness..this word ‘busy’..it should be abolished. It is the excuse for everything nowadays. I feel ashamed and I promise myself that what is not important will wait. From now on, everything else has to wait.

Even if I told you that dad was sick, you would not remember my words but the emotions you feel when noone visits are not forgotten. We do not realise that a person with dementia cannot always work out the situation and that is why our physical presence is so important. Actually, it is vital. How can we abandon people, our loved ones, when we should be well aware that they have no idea what crazy life we lead, or whether we are waiting for a delivery, or whether we do not care at all! No, they do not know. But we know!! We know and we should look in the mirror – look at our inner thoughts. Do we care enough to make that effort? Effort? Is it an effort to go and see a parent or sibling in a Home? If it is, then there is something very wrong with us. Unless we have been abused by that person, or he/she made our lives miserable, we really have no excuse.

The days of a person with dementia are numbered. Let us not waste those days, even if we are really tired, or it’s raining and cold outside, or it is way too hot to go out.

Let us try harder. Let us show you that we really do love you and that you matter. Let us show you that it is our time to look after you now. You need us more than ever. You probably never even asked us for help before so now it is our time to give you something back, without being asked.

It is my turn to give you the time and love you gave me. Not because you asked but because you need me, you really need me, and because I truly want to. You ate all your dinner now and forgot the tears that rolled down your face before you saw me. I am so glad I saw you today, Mum.

I stopped to think, I read the words again and I wondered. Is this real? Is this where we are in the world at this point in time? War is spreading. Will it really happen? Will the war move to the rest of the world? When people talk about the 3rd world war, very often we nod our heads and then look away and our mind focuses on the nicer parts of our lives. Yes, we are lucky to be living on our little island..but for how long?

It is Ash Wednesday. The priest gave a sermon about forgeting oneself, pushing aside our ‘me’ and ‘I’ and instead focusing on the 40 days that come before the feast of the resurrection. What of 40 days? 40 days to rethink our lives and, instead of believing we are gods, we should work hard to be better, to care for others, to love others and to understand that we have Jesus to turn to, who loves us as we are and who gave his life for us. Is He the only one who really loves us? I do believe so. Do you?

And what has all this got to do with dementia? I compare the war of the world to the war inside our brain, the war that destroys those brain cells when dementia shows its ugly head. It is a war that we will ultimately lose. A war both within and without that, yes, we will lose. Is there really a winner in a world war? Is there a winner in the brain of one with dementia? I think you know the answers to both questions.

Will a cure ever be found. Yes, I believe so. I do believe that, one day, the scientists will find the key to the gold we are searching for. I do believe so. Do you?

Yet, what do we do in the meantime? How do we cope with the build up to this war? How do we protect ourselves? Where do we seek comfort? Who do we turn to? To ourselves? Isn’t that what the media tells us..that we are strong and can conquer anything and everything?

We cope by putting trust in hope. Hope is what we have and let no one ever take that anyway from you. Hope is what will help us face the next step, whether backwards or forwards.

How do you hope, if there is no cure? It does not make sense, does it?

You can hope for help, for kindness and for the time that those close to you can give you. You can hope for others to show you the love you need, for the comfort they can offer you and for the precious moments and memories that can be formed together. Yes, I do believe there is hope. Do you?

Any what of this world? Is there any hope? Does it really take a handful of people to decide the fate of billions of people around the world, of the survival of the planet? How can this small group of people decide for us? They can and they do. So, we hope and we hope, and we hope that they will steer their decisions in the right direction..and not head on into the vastness of space. Yes, I believe there is hope. Do you?

Inside every dementia, there is a person.

I will always remember the look of sadness on your face when you may have wished to say something, or to move or even to smile, but you could not. Dementia stood in your way, over and over again. It took away your speech, your movement and your ability to communicate.

Yet, inside your head, your mind, thoughts were still there. Had you lost the ability to process them, to get them across? Could you still feel happy or sad? Yes, I think you could.

Could you imagine and dream? I do not know. Was your mind a blank slate or was it full of images, emotions and words?

You were locked in this place and there was no key to reopen the door. Was that it? Could nothing be done?

There was hope. Yes, I could communicate with you through your eyes. Your eyes were the window into your heart, into your soul.

I would sit in front of you and look straight into your eyes. You would look back at me, straight into my eyes. A smile would appear. That was so special, so touching. I do not remember how long our eyes would interact but it remained our way of communication till the day you left.

Those beautiful light blue eyes had so much expression, but, what of thoughts? I am sure there were thoughts. Maybe you could not understand them or process them? We will never know.

Yet, those eyes said a great deal to me. They told me that you knew me, whoever I was to you, but you knew me. I saw love in those eyes and that was all I needed.

You know, whoever I was to you just did not matter anymore. I knew who you were and I knew you loved me, gave your life for me. I just hope that my love for you was translated in the way my eyes looked at you. I hope you could understand my emotions and maybe felt loved too.

You may have been lost in yourself, but those eyes, that glance, they are still here in my mind, in my heart and in my soul and they will never be forgotten.