My Cross ..our cross

Luke 9:23

“Then he said to them all: Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me.”

It truly is hard to carry your cross, sometimes feeling it is way too heavy and you cannot go on.

So many people call in, sometimes crying, sometimes too tired to speak or too agitated. How does it feel to look at your spouse, your mother, your father, and see a blank look, distracted, almost empty inside? How does it feel when that person doesn’t know who you really are..maybe you are the father, or the brother or the child..but that is not really you, is it? Yet, that person in front of you does not recognise you as you…how does it feel? How does it feel to reach out to touch that person, knowing full well that you are losing him or her..losing the person you so love…how does it feel?

Why do you have to carry this cross..why do you think that yours is heavier than mine..why cannot you just wake up in the morning, sweating from a bad dream, and then get out of bed and get on with your happy day??

Look around you, ask around..and you will see that you are not alone in carrying this cross. In fact, so many times, yours is lighter than others..yet you do not want to know. Your cross is there, and you do not want it…and I do not blame you.

Your cross is hard. Yet have you ever thought that it is actually shared with others? Do you live alone? Or do you have family around you? Even if you live alone, a neighbour, parish priest, or even the postman is thinking of you when he knocks at your door. Someone knows something about you. That means you are not alone…and do not feel you are. No, you are not alone.

If you live in a household with others then your cross is shared with others..can you accept this?

You must, and you must understand that your cross is their cross, our cross…and we carry it together.

If your loved one has dementia, they too are carrying a cross..sometimes much heavier than yours.

Many people say to me that the relative suffers more than the person living with dementia. I mention this a lot because I do not quite believe it. Yes, of course, the relative suffers, goes crazy, is desperate, tired and helpless. That is 100 per cent true. Yet, your cross is their cross …it is our cross together.

So, I say to you, lift that cross and carry it. Hate it as much as you do, you have no choice. Lift it up with all your might, pad it with happier thoughts, with hope, and most of all, with love. Carry your cross with love and you will feel it lighter…that I promise!!!

Could Jesus carry his cross…no he couldn’t…of course he couldn’t. The wood weighed a ton and cut into his flesh. He fell several times, almost dying on the way. Eventually, the cross faded into nothing as he breathed his last breath. Do not lose hope..your cross will one day end too.

As hard as it can be to face the stark reality of dementia…as hollow and deep the cavity you fall into…you will succeed. You will manage this steep hill that you climb. You will eventually come to the top. You will reach your destination, even if it takes years..you will get there somehow.

So, take up your cross and carry it. Share the burden with your family, with your friends, with your neighbours. We are all in this together and we are there to help one another. Your cross, my cross..our cross.

Living the Day

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.

All Alone

‘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.

Dementia – wow!

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.

Rejected

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.

The War within and without

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?

I’m lost in myself

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.

Life in a Care Home

Mum loved the cats in the Care Home garden

We took you to a Care Home around 18 years ago and you spent quite a few years there. (Mum passed away in 2012). It was very strange to us at the time, and very hard for you to adjust. However, we all did.

Care Homes are all different and, of course, there have been many changes over these years.

However, one of the very important things that is still the same, is the human element. You just cannot underestimate the human element, the carers, nurses and all staff. They are what make a Home.

As we started visiting on a daily basis, an alien place became our 2nd home and a whole new world opened up to us that we had never dreamed of before. New routines, adusting timings, driving to and fro, buying more practical clothes and labelling everything, ensuring you were well cared for and always on the lookout for problems or health issues. Yes, we adjusted.

Did you adjust, Mum? Yes you did. Why is that? You resigned yourself to the situation of course. Is that the real reason? No. The real reason is because the staff were loving, caring and had a beautiful vocation that one cannot buy. I said previously that the human element is what makes a Home. This is not a sweeping statement but the honest truth. Being there on a daily basis, one could clearly see what the true picture was.

Dad, you visited Mum every single day and the staff grew to love you too. You watched and experienced the Care Home life along with Mum and you witnessed their true dedication, and sheer hard work, for hard work it certainly is. My family and I also witnessed this and I understood that, without a vocation, it was difficult to be in the dementia ward. A person with dementia could be quiet and calm. A person with dementia could be very agitated, difficult to cope with and even violent. One of the Carers nearly suffered a broken arm because of the roughness of some residents. Sometimes their hair was pulled or they faced very difficult moments. We watched and observed and learnt to appreciate their utter dedication and genuine care for all of those in the dementia area.

I am not saying that everyone was perfect, far from it. However, the memories and faces of those wonderful carers will never go away and we will always be utterly grateful to them for taking up this vocation and working as hard as ever to look after our loved ones.

Mum, your 8 year stay at the Home was a good one. The Home had a lovely garden and we always took you out there when the weather permitted, which is most of the time in the Maltese Islands. You loved the cats that purred and came to sit on you as we sat on the bench. It was a very calming part of the time, peaceful, quiet and lovely to enjoy those wonderful plants and flowers.

As time went by, you stopped talking and you could barely move but we knew you were looked after.

I have to say that the Managers of the dementia area also had a hard time, especially with relatives. We all wanted or needed different things and, with a smile, they tried to please us, sometimes moving mountains to satify us. One of those moments was in the last month of your life, Mum. We did’t wish to take you to hospital, and we were not able to take you back home, so we, together with the Home, obtained the necessary medical items to make you as comfortable as possible in your last days.

Yes, my family and I will always be grateful for the love and care we all received, not just Mum, and this blog is for them. They are the ‘unsung heroes’ and they are what make the Home. You can have an old building or a modern one, you can have all the amenities or you can have just enough. Being comfortable is very important. However, if you do not have the right staff, those witih a vocation, then it doesnt work. Mum, you had these wonderful people, these incredible carers who dedicated their lives for others. As much as I believe that your suffering on this earth facetracked you to heaven, I also truly believe that these carers have a place waiting for them too when they pass on.

We sent you to a CareHome

This episode is one of the hardest moments a family may have to face. I wasn’t going to talk about it now because I am still tackling the earlier parts of mum’s illness. However, the topic came up in our ‘Reaching Hands’ online support group session on Wednesday and the person speaking is going through a very hard time. I really empathise with you..I really do. I know how I felt and I know how my Dad felt. I do not know how difficult it was for my eldest brother who was once made to promise by Mum that he would never put her in a Home…can you imagine?

However, sometimes we have to do the impossible, what we hate most, what we really do not want to do. How do we do this? How do we face it, how do we action it? How??

I say to you, move forwards, put your head up high and shoulder on. If this is what is best for your loved one and you sincerely believe you have no other option, then this is what you must do.

If anyone turns around to judge you, then be polite but turn away. No one has a right to judge others and we all must learn this. When you point your finger at someone, your other fingers are pointing directly at you. Do not do to others what you do not want done to you.

The picture I have placed is a family photo which reflects exactly what we felt and what Mum felt. The separation is so hard. Leaving that person behind a locked door is unimaginably hard..I will never forget the look on your face, Mum, as we left you behind on that first day..your sadness..your incomprehension..your confusion. You banged on the door so many times and you broke our hearts to pieces. We didn’t want to do this..we didn’t mean any harm…but we did what we thought was best.

And to all who are reading this piece, always keep this is mind…’You are doing what you think is best’. Let no one judge you, let no one speak harshly of you..let your mind and heart be at peace. Mine is and forever will be.

Every difficult stage in life, be whatever it is, is hard until you go through it. When you look back, you know it was the best decision you could have taken at that moment in time. Let God be a judge to that. He knows your inner feelings, your hurt and your love. No one else does or ever will.

Therefore, I tell you, look upwards, feel at peace and keep going. You are and will always be in my prayers because I know how hard it was. Maybe one day, it will be my turn. If so, then my family will do what is best for me at the time. I can live with that.

Happy New Year – and happy 20th anniversary to MDS

It’s a beautiful sunny day, calm and peaceful and we hope that this will reflect the rest of our year!

Join us for a thanksgiving Mass on Saturday at 6.30pm at the Sanctuary of Sacro Cuor in St. Trophimus Street in Sliema to celebrate with us. The general public is invited and we really hope to see you.

We have come a long way since the first meeting when the MDS was formed and we wish to celebrate this and thank God for it.

From a rigid stigma to the almost total breakdown today. From never hearing the word ‘dementia’ to hearing and reading it everywhere. From zero help to so much more.

From the unknown to much more understanding of what dementia is.

Yes, we have come a long way.

So let us hold hands, keep our spirits up and fire up our Hope. Maybe, one day, a cure will be found. Till then, we walk the journey together – we reach out to you and break your fall.

We are here for you.