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.

Is True Love a Cliché?

Mum and Dad

‘True Love’ – is it really a cliché? Look at the photo above. Look closely at the eyes and the smiles and you will see inside their hearts and their souls. Yes, ‘true love’ really exists. No, ‘true love’ is not a cliché.

Every couple has ups and downs, sometimes more downs than ups. As children of a couple, we look at our parents in one particular light. As parents of children, it is a totally different perspective. However, both are interwined by love.

What has love got to do with dementia? Well, so much…everything I would say.

When a person is diagnosed with dementia, it effects the whole family, whether you are married or not. In my parents’ case, they were a couple and it hit them hard. It sent them reeling and threw them way off course. Plans of a happy retirement were smashed. Yet, what of love?

The greatest love story of all. Another cliché? No, I say, yet again.

After getting over the initial shock and trying to accept and cope with every stage, every hurdle, every shattering news, my father showered my mother with every part of his heart, all the love in his heart and all the strength in his heart. He dedicated the rest of his life to her. Nothing else mattered but her. He only had eyes for her. Every waking moment, every thought, was for her.

In spite of everything, in spite of the exhaustion of dementia and all that it threw at them, nothing stopped him from spending every possible moment he could with her.

When we eventually had to move her to a Home as he could no longer cope, and she needed constant nursing care, he would catch the bus from Sliema to Rabat, each and every day.

Being at work, I couldn’t take him, and he would not miss his morning visit. He did this for some years, sometimes even helping a new bus driver with the route he had to take. My dad knew it by heart!

And when he was knocked down by a car just before catching the bus…and having his elbow smashed? He still went to visit her the moment he could. After this accident, we arranged other modes of transport for him. Yet he never stopped going, he never said no.

And when he was ill with flu? That was a tragedy for him to have to miss his visits to mum! He would sit on his armchair in utter sadness. I can still remember how upset and miserable he would be when he was confined to his home with illness.

His heart was failing, his body was suffering, yet he never, ever, ever stopped visiting her.

They would sit down together in the dining room of the Home. He would hold her hand and look straight into her eyes, smile at her with all the love in his heart, and then tell her all about his day, what he cooked, what the newspapers were writing about, what was going on in the neighbourhood, and whatever else was going on in his life. Those moments were the most precious of his day. Although they sat quietly in a little corner of the room, those moments spoke a thousand words! All the Carers and staff would watch them and admire them. His love for her was a true sign of what marriage is all about. ‘ In sickness and in health’ truly resonated in these moments.

I ask myself, what if mum hadn’t fallen ill with dementia? Well, I may not have witnessed this beautiful love. The Carers would not have known my parents, they would not have been part of this daily experience. No illness is pleasant and every illness is hard. Yet, true love and kindness in one’s heart can transmit the comfort and relief that the person with the illness so desperately needs.

True love is a beautiful experience. We all have it in our hearts. Let us all breakdown those barriers and let out these feelings, these sentiments, and reach out to someone and break their fall. Love is beautiful and true love is not a cliché.

Climbing the mountain

We love a good laugh, we enjoy happiness, peace and comfort. What I appreciate most is a normal, ordinary day, at the end of which I can put my head on my pillow, and settle into a calm sleep. On waking, I thank God for it and hope that the new day brings the same.

However, sometimes our days are disrupted, or even, turned upside down. And when this happens, let us embrace it and open our door wide because problems tend to arise all at once. Why? Who knows. They just do!

The day you called me to tell me that Dad had suffered a stroke during his heart operation, you were crying buckets on the phone. That day changed your life. Why you, mum..why you?

Well, let us then ask, why not? We always ask why, but this is life. I strongly believe we are just passing through and we need to face whatever comes in full preparation of hopeful eternity, which we can enjoy in happiness, peace and comfort, for the rest of our lives.

As we watched you deteriorate over 12 long years, we grieved you slowly and eventually hoped that God would relieve you of this suffering. After purgotary on earth, I strongly believe you are now in heaven, totally free of your illness and watching over us here. I am so convinced because I feel your constant presence, especially in all the work we do for dementia. You bring people to our door, you bring opportunities, possibilities, developments and outcomes that we would not dare to dream of. Yes, I know you are by my side and I am grateful for this. Your suffering and hardship has led to a beautiful gift of giving. Thank you Mum. I truly am sorry that you had to go through the sorrow, but you coped as best as you could and now you reap the benefits.

On Christmas Eve, we celebrate your birthday. You were a Christmas miracle for your family. You are a Christmas miracle for us, for just being you and for all the help you send as we strive to help others living with dementia and their families.

Yes, the suffering is huge, but there is light at the end of the tunnel. The ordeal will pass and happiness, peace and comfort will come again.

I need a hug

There are times in one’s life when a hug can solve sadness and a feeling of loneliness in one’s heart. My husband laughs at me when I tell him I need a hug and he complies. He he..out of duty maybe but also because he knows that it is what I really need at that moment. It lasts a few seconds and then all is okay. So simple? Well, it’s the hug that counts:)

What happens when there is no one near you who can oblige? What if there is no one in your space who is there to look into your eyes and see your pain, your hurt and your tears?

Oh Mum, how many times you found yourself all alone in your room. The room in the Care Home. You couldn’t speak and you couldn’t really move much so no one would have known you needed something during rest time, unless they passed by your room. Yet, there was one thing …yes, there was Mr. Polar Bear.

On one of my Christmas shopping sprees some years ago, I was given this bear at BHS – it was part of an advertising drive that if you spent a certain amount, you would be given this lovely large soft toy.

Now, I love soft toys, but this one was different. He was large and cuddly, and had this beautiful red coat and hat. It was his christmas outfit. I decided to give him to you, mum, so he would replace us when you needed a hug. He was a big bear and somehow always put a smile on your face when you looked at him.

It is not that we treated you like a child, not at all, but in our absence, you had a big cuddly bear to hold and snuggle with. We always tell people not to treat their loved ones with dementia as though they were children because they definitely are not. However, we all have a soft side to us and we all need consolation, solace and love. We express ourselves in many different ways, even though some people lock all their feelings and thoughts deep inside, woe betide anyone gets a blink of them. Yet, consolation, solace and love is something we all wish for, look for and hope to receive.

What happened to Mr. Polar Bear? Well, he now sits on my sofa for my grandchildren to hug and play with. Of course, I do sneak a hug in too sometimes:).

Christmas is around the corner. In fact, today month is Christmas Eve. Let us focus more on giving than receiving, on what we can do for someone and not what we expect others to do for us. Sometimes, giving does not have to cost you any money. I have a solution to that….give your loved one a hug…a big, long hug…and tell them you love them.

21 November

You are always in my thoughts but next Tuesday, the 21 November, many special prayers will be said for you as we remember your life and all you gave us. You truly were an extraordinary person to us. We always knew this while you were still with us, but it is strange how one tends to really comprehend and understand what a loved one, especially our mother, actually means to us.

Why do we, as human beings, tend to idolise our loved ones when they are gone?

I see and hear this so much. Do we really have to wait for the last few months, days, moments to wake up to the fact that this person is now leaving? Do we understand that every moment that we have with a person, whoever it may be, is so precious that we must, really must, try our utmost to treasure it?

When we are young, we all feel so invincible that life cannot come in our way..we don’t need anyone and only need to rely on our own strength, intelligence, physical might. Oh how wrong we are! All it takes is one strike, one episode of extreme vulnerableness, and we figure out that we need others, we need God. Do we believe in God? I believe that life shows you that without God we are truly nothing.

It was you who showed me this Mum. Not through any religious talks, or through taking me to church every sunday. No, you taught me this through your own actions, your example and how you led your life.

Even today, as I too grow older, new memories come to light. As I sometimes go through a memory box that I have of you, new things come to my attention where I reconnect or even discover something about you. Am I making sense? Let me give you an example. One of the items in my memory box is a medal of Our Lady hanging on a light blue ribbon. I had always wondered exactly what it was but never really pondered too long over it. One evening, I was feeling pretty low and I decided to go to the daily evening Mass. It was a Wednesday. It was early and I just sat on a bench in the stillness of the Church. The lights were dim and there were, maybe, a couple of people aside myself. I was alone with my thoughts, my worries, my fears and then I thought of you, of Dad, of my children, my husband, and all those who were close to me in my life. As I was lost in my thoughts, I hadn’t noticed that more and more people had entered the church, until I heard the sound of rummaging in a bag by this woman who sat down next to me. As I turned to look at her, I saw this medal of Our Lady hanging on a light blue ribbon, and she was putting it on, around her neck. My eyes fixed on this scene for those few seconds and, realising, she looked up at me and smiled. Of course, that moment passed and I smiled back and looked away. As I ‘woke up’ from my inner thoughts, I noticed that a number of women around me were wearing the same medal of Our Lady hanging on a light blue ribbon.

Each one in the congregation brought out a little booklet, which I also recognised from my memory box. A woman near the altar started to read from it and say prayers and decades of the rosary. I was intrigued.

Who would have thought that years later I too would be wearing this medal of Our Lady hanging on a light blue ribbon – your medal, holding your book, and praying with these women (for there were very few men). Only this summer, I truly believe that these prayers to Our Lady, that all these women said with the intentions directed to my sick granddaughter, helped her recover fully from a horrible bacteria. Mum, you were highly devoted to Our Lady. Today I know why.

Let us remember our beautiful loved ones who have gone but who are never forgotten. Their memory, your memory, is forever alive.

Sunday specials

Sunday is a day of rest – God created this day at the beginning of time for us to put down our tools. It is a day to spend with the family, enjoy the outdoors and contemplate on the week that has passed, appreciating the gift of life and living.

As your dementia progressed, the tiredness on Dad’s face became more and more evident.

Therfore, on Sundays you came over to us so we could spend the day together. It was usually a Sunday roast or baked macaroni or something that we all liked. At lunchtime, we sat together at the table, like all other families. We talked and chatted. You loved being with the children and they had the time to spend with you, even though your words became more and more sparse as you withdrew more into yourself.. However, we made it a point to spoil you both on this day.

Francis and Dad spoke alot about football, a topic both loved so much.

After lunch, Krista and I would wash your hair and then sit you at the dressing table to blow dry it and style it. Krista enjoyed doing this and you loved it! It was ‘ladies only’ time, as the men watched football on TV. Yes, our Sunday family time was very special and we made it a point to push everything else aside.

Today, our Sunday specials have changed and Francis and I often spend them with Kurt and his family. You cannot stop time and all that is going on in a particular part of your life. However, you can choose to enjoy what you have and this is what we always tried to do. No matter the circumstance, it is your choice on how to approach life. My daughter Krista reminds me about this very often. Turn your mindset around and look at the bright side. Change something difficult into something a little easier by actually choosing to. This is not something that comes naturally to me so I am preaching to myself. However, it can work and it does.

Dementia, or any other condition for that matter, is not a shout for joy. However, it gives us the opportunity to use it as a reason to make more of an effort to be together. Is that a postive?

Yes, it definitely is. When you look at material things, you realise they can only bring a certain amount of joy, which can be quite superficial. Whereas, when you spend time with your family and your loved ones, the happiness in those moments can far outway the troubles.

In a perfect world? No, not always, especially if there are problems in families. But we can try. We can try to be happy in those moments. No one can stop time, so one must stop the moment and enjoy it. Never give up. There are 2 sides to a coin. It all depends on which side you choose.