I cannot face it anymore

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.

Enjoy the moment

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.

Run from or run to?

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!

I will break your fall

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.

Lightning strike

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?

A weekend of events

What a weekend it’s been. After a number of very tough weeks, I finally found the space to relax and enjoy myself. Friday saw our event to mark Brother Louis Camilleri’s 100th birthday commemoration. He was a Lasallian Brother. We are working on the Cause for Beatification of this wonderful mentor, saint, and so humble a person.

You knew him Mum and you really took to him. For a time he was head at St. Benild’s School and you often met him in Church. His perpetual spiritual conversation with God never went unnoticed by the parishioners and you always spoke highly of him, for he impressed you as he did to so many others.

You were a very religious person and ensured that you were at the 5.30am Mass every morning.

I admired you for the great energy you had. Up at 5am every day, straight to Mass and then back home to prepare lunch before you set off to the pharmacy for a day’s work. And work you did..always so very hard, especially looking after 3 children, a husband and a house.

Although young, the memories of all these years made an impact on me and as I grew older your influence became greater and clearer.

A person’s life must always be respected. When a person ages and becomes old, we tend to look at them in a different manner…do we push them aside, do we say.. ‘oh she’s old now’ or ‘oh, she doesn’t understand anymore’? Do we decide the elderly are not worth much anymore..they have no use anymore, they are slow, forget, take up too much of our time because they want company and we are too busy? And then, if one has dementia? That is even worse…’do we have any time to spend…doesn’t she have dementia?’ ‘She won’t even remember that I visited..I might as well not go’

How wrong we are …how terribly wrong!

An elderly person, every person, has given their life to society, to their family, to you, to us. How can we just abandon them?

Most of all, have you ever thought that you too will grow old one day? That you too may be pushed aside, discarded like a crumpled paper thrown in a waste paper basket?

A person with dementia who is abandoned by her / his family will pine away and die.

Do you think they do not know that they have been left alone? How wrong you are!

This is why we celebrate the elderly..and anyone else who lives with dementia.. unfortunately there are a number of younger people with dementia, more than we wished and hoped for.

Yesterday, we organised our annual fundraising dinner, which was a great success and enjoyed by all. Thank you to all those who support us! This event is so important for us – althogether we must make our voice heard..we must speak for these people..we must be their eyes, ears and voice.

Next year Malta Dementia Society celebrates its 20th birthday!

We hope to see you ALLLLLLLL THERE!!

This morning’s nature call

I stir to a quiet stillness. The only sound I hear is the heat ‘thumping’ and ‘thrashing’ as it pounds down on the islands. Dawn is breaking. My heart beat is hurried and I can feel it in my chest. My thoughts come to mind and there you are, my day begins. As I dry after my shower, the cicadas burst into glorious song. This is nature’s way of welcoming the day. This is summer, it is August and Cicadas capture this month as theirs – hundreds of males let out their mating call and no matter where you are you, will hear them for they are the loudest of insects.

My love of summer and the sea was down to you Mum. Our daily swim was your priority and so it is mine..although that is another story. I truly believe the sea has the power to safeguard us from germs, some of them at least. Our parents’ influence rubs off on us and we do the same to our own children. And it was in your favourite season that dementia raised its head. I call this the irony of life. Everything we love has to be tarnished in some way and this is why I believe this world is just our passage to a better life beyond our imagination.

Little was known at that time and so you were in total limbo as to what was happening to you. The early days were the most frightening and you tried hard to express them but you were often met with blank faces. The look of that fear in your eyes remains imprinted in my memory and this is the reason we, the Malta Dementia Society, have to work really hard to create awareness and why, most of all, we have set up the Malta Working Group of Dementia.

This group is specifically there for people with early dementia and who are experiencing the same fear you did, Mum. The people who form part of this group do not realise how fortunate they are to have this opportunity to express what they are going through. They have a voice that is as loud as the cicadas’ song. The participants look forward to their monthly meet. They feel safe in this space – they tear up, talk about their sadness, anxiety, frustration and especially fear of the unknown. For a person facing dementia, it is like falling into a deep cavity which has no end, no bottom, an abyss, a cavern, so deep into the biggest mountain, a catacomb with endless paths so dark in the distance.

Now we have hope. Perhaps there is less fear of the unknown because research teaches us, shows us, explains that little more.

You started this journey for me Mum. You were the sacrificial lamb. Now you enjoy the better life beyond our imagination.

I wish I could..

I have to apologise for missing Sunday’s blog. I was working from Germany as my little granddaughter battled a horrible bacteria and spent 10 days in hospital. Straight off the plane, I was taken to the hospital to see her and there she was, connected to pipes and a drain..this little body in this bed looking so weak but still managing a smile for her nanna.

I wished I could have helped you my little one…but you fought it physically and emotionally and thankfully, you are back to bouncing up and down, although still recovering.

You were so so brave my little one.

I thought of you so much mum. It was the same feeling of helplessness when you became ill ..I wish I could have helped you too back then..and I wish you were here to tell me all is okay now.

All of us who watch a loved one who is fighting illness feels like this. You pray and hope the doctors can ‘make them better’ and ‘work their magic’. Most of the time they can, of course, and that is the wonder of medicine..especially today.

However, with dementia, it is not so easy. On a postiive note, some of the strains of dementia are not so bad but what mum had was, unfortunately, one of the worse types.

Still, we kept up our conversations for as long as possible and mum you were and mum you will always be. You struggled through the first phase, which lasted at least a year, and we all adjusted to the new you in that time. We knew little about dementia but the psychiatrist helped us along. Sitting in the waiting room for your regular appointments, we met other patients, from all walks of life. There was one man in particular whom I knew. I was amazed to see him there and discovered he was fighting depression. It is funny how you picture people to be one way and then realise they too have problems. We all have secrets to hide, even those with high flying careers, as this person had. I always tell those who call, to push aside any shame or embarrasment they may feel. We all carry our burdens and we all have our demons to face.

There are those who admit them and talk about them…I am one of those people..and then there are those who do their best to hide them. Sometimes, successfully, but other times with total failure. The latter are the worst because people are not blind and they realise when things go wrong, especially those close to them, or even their neighbours. A problem shared is a problem halved. Finding a friend or relative or even a stranger to lean on is wise. A person who has the time to listen to you, who will empathise with you..cry with you. Never be afraid to share.

In fact, this is what we do in our ‘Reaching Hands’ support group – this is where relatives get together online and talk about their stories, situations, problems, fears and shed a tear or two, sometimes cry buckets…there is no shame in that..of course not! Sometimes I find myself crying with the relatives too…I guess some hurts never heal..but I find that sharing my story too helps others not feel so alone in all their burdens.

Recently, someone called me about her relative. I knew about the situation and waited a long time for this call …I am so happy she plucked up courage..

I say to all those out there who are facing this ‘huge load’…reach out to us..we are here to help.

I wish I could have helped you mum…but I know I can help others..and that is all down to you!

Wasted plans

After almost a lifetime of working, most of us look forward to a peaceful retirement, with relaxation being part of the equation.

These were certainly your plans Mum, and those of Dad too. They worked for a few years, with a few medical hitches here and there due to ageing, but you were quite pleased with the way things were working out. Many of those who knew you, remember you walking together along the Sliema seafront, holding hands, and perhaps, leaning on one another too, when a knee or foot wasn’t very cooperative. Summer meant swimming on a daily basis, to which I joined in too, and enjoyment of the grandchildren to the full. Winter meant more strolls and venturing out to the shops without the sun burning down on you.

Travel was definitely part of your plans, and you even made it to New Zealand to see Martin.

That was great! Plans are wonderful, something I love to do myself. Of course, travel plans had to be at the top of the list! Both yours and mine!

Until the world came crashing down, splintering every single plan to miniscule pieces. What a crash too! One that you never recovered from.

When dementia set in, things…life…changed dramatically.

It creeps up on you in a slow manner. A slight change here and there. A little bit of memory loss, a little mishap, a little side track.

You close an eye, you push it away, you close the cupboard door on it.

All,until everything falls out once again and then it is…’slap’…in your face!

No more turning away, no more brushing it aside..it is there..a stark reality…and one that you just cannot ignore.

What happened to our plans? They just fell apart.

Sweltering heat

40 degrees and climbing. The beads of sweat pour down my forehead and the sun is only just rising. Our summers are always hot but it’s been a while since we experienced these temperatures. Last summer, August to be exact, Francis, my husband, and I, were strugglying up the last part of the hill to our daughter’s house in Germany, in 35 degrees, and I remember saying to myself that Malta was cooler at that time. Not today! It’s 22 degrees in her little town, with some rain here and there. I would not mind trudging up her hill at this very moment.

When I was a child, summer always meant swimming. Even today. I love the sea and feel my stress and troubles all wash away as my body enters the water and that beautiful rush of cold touches my skin. As I push myself under, that feeling of weightlessness is so calming, so relaxing.

My love of the sea is thanks to you, Mum. You took us to the swimming club every day without fail. I was a member for 45 years before I closed that chapter, and which I will eventually write about.

When dementia raised its head, it was our turn to take you swimming. Dad and I kept up our daily routine of turning up at the club gates just as they were opening. We were always first in and first into the large seawater pool or the sea. What a sensation! The whole pool to ourselves…what else can one ask for?! You loved the sea and, as the years wore on, as your smile faded away, the sea was the only place in the world where it would appear. The moment you touched the water, we would see that expression of delight!

We never allowed your dementia to take away this pleasure and no hurdle could stand in our way. This was always our priority..our prerogative.

There is one scene which I will never forget. Your dementia was worsening and you were losing the ability to swim alone. One quick decision and we moved to the children’s pool to ensure your safety. As your feet touched the bottom of the pool, your body automatically moved upwards into a little jump and you chuckled. We all laughed together and this became our game.

Not a child’s game though! You were not a child and no person living with dementia should be referred to as one. You were an adult, in your 70s too, and had just found something that made you laugh and that, in turn, made us laugh with you.

During one of these episodes, a young woman came to watch our little game. I remember her being tall, and in her early thirties perhaps? She was watching my mother with intense concentration, but, as I looked up at her, I saw this deep sadness in her eyes, tears trying to break through and run down her cheeks.

She turned to me and said how lucky I was to have my mum. At that moment, I felt mixed emotions. Lucky was not the word, not for me and not for mum. However, the young woman managed a few more words and told me that at least my mum was near me and I could touch her, I could feel her. She then walked away, leaving behind silence and sadness. Yes, her own mother must have passed away and she was devastated. My tears joined hers. Even now, they slowly trickle down my cheeks.

To this young woman, whom I never saw again, I empathise, I understand, I know how you feel.

For a mother gone leaves a void that no one can ever, ever fill.