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.

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.

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.

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 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.

When someone calls me and sobs his or her heart out over the phone, I wish I could hug and hold that person. When a person reaches breaking point, they have to reach out to someone and you hope that they do. You cannot bottle everything inside because you will collapse under the stress. This is why we are there..this is why we named our Support Group ‘Reaching Hands’.

And reach out we did. How many times you slid off the sofa, mum. I would run into the street looking for a male neighbour or two to help us lift you back up. You were a total dead weight on the floor and there was no way that Dad or I could handle you alone. You didn’t seem to hurt yourself though. It was strange how you would just slowly slip off. Then you would look up at us questioningly. You could not understand why you were suddenly on the floor and we could not understand why this, and so many other incidents, occurred. Dad and I would glance at each other puzzled and unsure. What was next? Would it be worse? Could we manage?

Questions, questions, and more questions. Desperation? I do not remember feeling so at this point. However, the sorrow in your eyes spoke a thousand words. By then, your episodes of falling into a trance and then coming out of it, were now gone. The dementia moved you into another stage, one of helplessness. But what did you really feel? What were you thinking? That was my anguish..the yearn to know your thoughts, your fears, your desperation.

Hearing a person begging for help really humbles me. I try so hard to comfort them and I try so hard to calm them down. Reality is painful, tough and unforgiving. And when you feel this way, you must, and must reach out! Loneliness is unrelentless and cruel. You may be in a house full of people, yet you feel so isolated and empty inside. Somehow, you cannot take anymore, you cannot face the next moment, the next step. This is when you must reach out. Call us. Do not even think about it..just call us.

You were diagnosed with Alzheimer’s disease and Dad and I depended on your sons, my brothers, to take us through the various stages. There was no Support Group or assistance on dementia at the time, so their medical advice was very valuable. Time thought us how to deal with the situation and how to go about it. And time thought us one valuable lesson…Enjoy the moment!

We plan, we think of our future, we strive, work hard..but the future is not ours. Only this very moment is ours..so, yes, enjoy it!

Sometimes, the experience turns sour because of lack of cooperation, tiredness, stress and anxiety. How can you enjoy the moment?? How?? Many people ask this question and think it ridiculous, absurb and even bizarre. Of course that is how one feels when he or she is in the thick of it. Yes, you are right to feel that way, to feel like you want to scream.

Mum, we tried so hard to help you and we failed so many times. We did everything we could to make you comfortable, to slow down the alzheimer’s, to push it away. Yet it progressed and you regressed.

One of the challenging parts was the evening and getting you to bed. You became incontinent with time and we reached out to the government service but the latest they could come was 4pm. I couldn’t possibly get you to bed at that time so I looked elsewhere and we hired a carer to help out every evening. You cooperated far more with her than with me, but we managed in the end, so that was more important than my dented feelings. The evening routine took its toll so I resorted to pain killers as my back was not happy at all. The travelling to and from your house was another major issue. Coping with my family, work and the ever increasing stuggle pushed stress and anxiety levels higher and higher. Seeing you deteriorate before our eyes, becoming another person, losing your independence…it really was so hard, especially for Dad.

A major decision had to be taken.

Enjoy the moment? I didn’t think so at the time, but I do now. Enjoy your loved ones now. They are physically in front of you..treasure them.

At 6am this morning, a group of runners took off in the darkness from Dingli to Golden Bay to raise money for the Malta Dementia Society, for the dementia cause…for us, for you. With a big heart, they ran up and down hills, pushing their bodies to reach their destination. That was their goal and their destination!

Destination is our goal too…everyone’s goal. Whatever the situation, whatever the hurdles, we strive and struggle until success is reached.

Success? Success can be interpreted in a million ways. To some it may mean financial gain, others material gain, having a family, writing a book, overcoming illness…so many reasons,

And for others, it may mean simply getting through each day of the week, each hour, each minute…that is their success.

The final destination? The moment we leave this world, knowing we strived, we worked hard, we fought mentally, we sacrificed, we helped others, we gave, we loved.

Struggling with dementia means we take one step at a time, both as a person living with it or as a carer. We try to run as fast as we can so it will all be over soon. We try to run from the situation but we cannot do that. We have to face it head on. Is that awful? After the initial shock, we must get hold of ourselves, our thoughts and emotions and run to…to our destination, to our success in dealing with the situation, in dealing with life. Everyone has a problem, yet it all depends on how we deal with it.

Grab the hand of your loved one and run to, face forward and take step by step. Your destination is in sight..you will succeed!

Dementia hits you suddenly and leaves you reeling. The doctor’s diagnosis, the shock, the phonecalls, rallying round of family. It’s a crazy few days after receiving this news.

And then?

You wake up a few days later and find yourself sitting alone, in silence, on a kitchen chair perhaps, and wonder if you are waking up from a strange dream. Is it real?

What were you thinking mum, dad? Did you even realise what it all meant? Maybe you thought

you did but, in actual fact, none of us knew what lay ahead.

Yet, the emptiness inside, the blank face, the pit in your stomach, the feeling of helplessness. All these motions coming together, it’s like you are floating weightlessly in air, it’s like you are two different people in one body. I cannot explain but you may know what I mean.

The beginning starts slow and you push your thoughts away. This is just another of those things which will go away soon, right? The days pass, one at a time. I know it’s an exaggeration, I know it is not how they said it would be. Or am I fooling myself? Am I closing my eyes and turning away from the changes, little though they may be at first.

People around you start to wonder, you see it in their eyes. Yet, what are they thinking? There is nothing wrong, is there?

But time has no mercy. You cannot stop it and one day you look in the mirror and admit to yourself that your sheltered, cosy life has been shaken. As you grow older, you become more set in your ways and you are very protective of your safe four walls. Woe betide anyone breaks this safety net of yours. Yet life is unforgiving and it hits you from all sides.

So what then? What do you do? How do you handle this ‘thing’, this phenomenon?

There is only one way and that is to face the storm together. Together and not alone, never alone. Reach out to your loved ones and they will keep you afloat.

Again, how do you face it? How? It’ s not a choice, it’s not something you can run away from.

Look again at the mirror and stare at the new you. That person looking at you is you, today, with whatever is changing inside you..but it is you! Accept it, lift your head up high and grab the hand of your loved one…then dive in together and take the ride.

25,000 bolts of lightning hit Frankfurt airport in just one hour on Wednesday 16 August of this year, 2023. 60 litres of rain per square metre came down between 20.00 and 23.00 hours in this Hessen region, southwest of Germany, together with wind speeds of 60 miles per hour.

This agressive storm just touched us at my daughter’s house, but we watched as this extreme weather unleashed ‘christmas lights’ on the area and all that went with it.

And dementia is one heck of a lightning strike!

For years it lays dormant. For years it remains silent. For years it moves with stealth.

Till the day it strikes, till that bolt turns your world, and of those around you, totally upside down.

The day it shows its face is not dramatic, but the ball is rolling and you cannot stop it.

That is dementia.

The day you called me and repeated the same thing to me several times over, was the day your life changed; the day Dad’s dreams of a wonderful retirement of travel, relaxation and life together smashed into little pieces; the day my family and I had to change plans; the day my brothers had to plan more visits than ever before to Malta; the day we lost our mum; the day Rosa passed away and a new person emerged.

That is dementia.

We eventually really lost you. It was a 12 year battle. A very tough 12 year battle, most especially for you. Yet this fight was not really lost, was it? No. We continue to fight, we continue to search, we continue to reach out. We never give up. Not until the day we see a cure, a total cure.

Not till the day dementia is no longer a threat, no longer a worry, no longer a fear.

Will I see this day? No , I am told. Will I benefit? No, I am told. What is my fate and yours?

Who knows?