As part of IPSF’s World Alzheimer’s Day Campaign, pharmacists and pharmacy students from around the world sent letters and words of encouragement for families and care partners of people with dementia.
by Saurabh, Pharmacy Student
Dear care partners and people with dementia,
I can’t free you from the pain you feel every single day. But I can help you strengthen your bond by feeling the emotion behind my poem. Hope it helps…
“REMEMBER ME “
I know I forget,
The times we were together.
I realize I forget,
The way it felt to be in love.
I am aware of the fear,
The look you had in your eyes.
I am familiar with the stress,
The wrinkles formed on your head.
The worry you had for me,
which embraced my heart as well.
But I remember,
The smile on that exhausted face,
when I took steps ahead.
I do recall,
The love we shared.
For it was accomplished,
For it was us.
Us against the world,
Don’t forget it’s us together,
For I do remember and won’t let you forget.
Bakani M. Ncube, Pharmacy Student
I cannot begin to imagine what having dementia feels like, to have a syndrome of acquired abnormality in cognitive functions (including memory, language and judgment), behaviour and participation in this sometimes rough social life. Having been alright once in life and then gradually developing a deterioration in emotional control, experiencing a change in social behaviour patterns and motivation.
Alzheimer’s: a common example of a not so common condition here in Zimbabwe, a systemic neurodegenerative disease that causes slow and gradual progressive dementia, spanning between two years to two decades and on average eight years. The frustration of short term memory lapses is one I can relate to and have seen in action, to forget and not be able to see what you wish to see with your eyes shut tight and walking around with that pocket-sized notepad to scribble down your thoughts before they cease to be yours again.
I implore you to keep doing a great job during this difficult time in your life as you live with your precious one affected by dementia and commend you for all your efforts. I know you seldom hear it but good going.
For those with dementia, ensure a healthy diet and maintain weight control, keep active! The world is big, take a walk in nature, take a hike where the WiFi is weak and just let all your senses be caressed by the beauty of God’s creations. And remember, you are not an island and you certainly are not alone. Join a support group; we may never fully comprehend what you are going through but people in the support group will. Life is not over, not yet. Just when the caterpillar thought the world was over, it became a butterfly. YOU are a beautiful, brilliant butterfly.
To you the care partner, one of my favourite quotes says “fingerprints don’t fade from the lives we touch, remember me.” I believe this is true for you. You may feel like you are fist fighting a sandstorm and the condition comes uninvited, with an enormous direct & indirect cost burden that doesn’t make the going easier. Follow a structural routine and offer reassurance – always – and adopt clear and simple communication. Keep your head up. God gives his hardest battles to his strongest soldiers.
Home is not a place, it’s a feeling. Ensure safety at home, avoid confrontation and provide frequent reorientation with the home environment. There is no shame in seeking help when the road gets too steep to climb alone, get help and use day care facilities, take up legal and financial planning, learn to manage stress levels and offer reassurance. Dementia is not anyone’s fault: counsel to avoid guilty feelings as a result of reactions of the patient. It is not about how big the house is, it is about how happy the home is. Personally, I have never met a strong person with an easy past and you are no exception. Be strong! Strong for yourself and those who rely on you. Ultimately, grow through what you go through.
Who Are You?
Anonymous Pharmacy Graduate
`Who are you?’ is the sentence I fear the most coming from her lips. The thought of her drifting away from me is just too overwhelming, and I can’t imagine how I’m going to survive the days knowing that I have no place in her mind. She may still recognize who I am now but who knows tomorrow when she wakes up from her sleep, I suddenly become a stranger to her which I hope would never happen. I am scared and terrified to face the days ahead, because I know how difficult it is to get through today let alone tomorrow.
Sensing my worry and sorrow, she grabs my hands reassuring me that everything will be fine. My eyes shift to her and she gives me the most beautiful smile. `We’ll be okay. I know we can get through this,’ she says while holding my hands tightly to convince me that we will be alright. `I may not remember the memory we shared in the past but you know we can always make a new one, right?’ she says. Her round brown eyes are looking glassy like she’s about to cry. Trying not to break down in front of her, I smiled and say, `Of course we can’.
Our life has been a whirlwind ever since we’ve been told that my wife has been diagnosed with dementia. I was kind of in denial when I first received the news. But as the time goes by, the signs are getting too noticeable and I realize that this is REAL! My wife can’t even find her way back home from work! Leaving everything behind, I give undivided attention to my wife as I know that she will never want anyone else to care for her except me. Caring for people with dementia is really challenging. They will test your patience, strength and devotion. I almost gave up in the middle but with the continuous support I get from my family and her family, I am surviving this test. I know I can never do this alone and I know my wife needs the prayers and attention from her loved ones.
For anyone who is in my position, living with people with dementia, I just want you to love and care for them as much as you can. Who knows, this may be the greatest influence for him or her to fight the battle and to live as well as possible. Don’t lose hope. Have faith! Think of this as a good change or a new chance to perceive a better version of you and them. Get your loved ones the best treatment they should receive. Don’t be embarrassed to seek help and assistance from healthcare professionals. Remember, good things start from you! It is never too late for anything, and don’t wait until it is too late to do anything because we never know what will happen tomorrow.
As for my wife, if you ever read this, I know how you struggle every second to recall who I am to you. Just so you know, I will try as hard as I can to make you remember me and everyone around you. I promise that I will definitely give you a taste of happiness that you can get in this life. If one day you will not remember who I am, I just want you to know that I will always remember who you are to me, our memory and our life that we share together.
Finally, for all of the families, whose loved ones have been diagnosed with dementia, you got to believe that for every circumstance that you face, happiness awaits you at the end of the road. After all, life is always fair to us.
Palavras Amorosas Portuguesas
by Andreia Moreira, Pharmacy Student
Para alguém que não se esquece,
Gostava de te poder dizer que vai ficar tudo bem e que, um dia, o teu coração sobressaltado encontrará paz: as portas da vossa casa já não estarão trancadas e poderás ir, sem medos, à tua vida. No entanto, tu sabes a verdade: a realidade que eu desconheço e não suporto sequer pressentir.
Não sinto o que tu sentes quando te lembras dos momentos que te roubam a esperança: os rasgos de lucidez, cada vez menos frequentes, o mundo que parece feito de ilusão.
E tu estás sempre ali, disposto a tudo para atenuar o sofrimento de quem vai sendo vítima de uma decadência em progressão. Alguém outrora vivo e feliz, ciente de si, dos seus sonhos, dos seus amores e das batalhas da vida.
Sei que te defraudaram a esperança na eternidade de cada memória. O Alzheimer já te subtraiu muitas lágrimas e todos os dias são um sorvedouro de emoções, como se o mundo fosse visto, vezes sem conta, pelo mesmo corpo, mas por nascentes distintas.
A vida mostra-te a sua imprevisibilidade, à medida que assistes à derrapagem de uma doença neurodegenerativa e tu questionas-te: De que valem, afinal, todos os momentos que se foram colecionando? De que vale apenas existir?
Podes não concordar, mas vale muito! E talvez a condição que testemunhas de alguém que te é tão querido, já te tenha feito perceber qual a dimensão do amor e qual o poder, indiscutível, do agora.
Por mais lembranças perdidas, a vida é tão-somente a lenidade de cada momento: a inocência, a curiosidade, o espanto que tudo nos provoca.
É sermos livres em nós próprios e despreocupados com o resto, como crianças inconsequentes. É sentir, mais do que pensar. É deixar que o vento nos leve até onde o vento nos quer levar.
Apesar de a conformação não ser fácil e das palavras serem banais, não deixes que a tristeza te faça desperdiçar cada instante porque não importa quem és para aquela pessoa, o que importa é que estás ali ao seu lado.
O que realmente importa é o que ela significa para ti. Os seus olhos podem até não reconhecer as curvas do teu sorriso, mas o seu coração conhecerá para sempre o sabor das tuas lágrimas.
Lembraste de todas as conquistas que já celebraram juntos e de como os pequenos gestos podem fazer a diferença? Então entrelaça as tuas mãos naquelas mãos esquecidas e sorri. Tu sabes como a vida foi boa e como o amanhã pode ser tarde demais.
Por isso, não te esqueças, não apagues a luz da esperança nem percas tempo: celebra a vida, sê a fortaleza de uma alma que às vezes se encontra perdida até porque, citando Francesc Torralba, há pacientes incuráveis, mas nenhum deles é “incuidável”.
For someone who doesn’t forget,
I would like to have the power to say to you that everything is going to be alright, and that one day your startled heart will find peace: the doors of your house will no longer be locked, and you can go on with your daily life, fearless. However, you know the truth, the reality that I don’t know and that I can’t even imagine feeling.
I don’t feel what you feel when you remember the moments that steal your hope: those precious and instant moments of total lucidity, when the world seems made of illusions.
And you are always there, willing to do everything to alleviate the suffering of one who is a victim of a progressive, degenerative disease. Someone that once was alive and happy, aware of himself, his dreams, his loved ones, and his life’s battles. I know that you feel that life has betrayed you and stolen from you every inch of hope that lives in the eternity of each moment.
Alzheimer’s has reduced you to tears many times, and every day is an emotional roller coaster, as the world is seen, countless times, by the same body, but from different viewpoints.
Life shows you how unpredictable it can be, as you see with your own eyes, the decay of a neurodegenerative disease, and you ask yourself: Are the memories that we collect, worth it after all? Is it worth it just existing?
You may not agree, but it is completely worth it! And maybe the condition that you witness of your loved one has already made you understand the dimension of love, and the indisputable power of the now. Even with all lost memories, life is simply the lightness of every moment: the innocence, the curiosity, the astonishment of everything.
Life is living every moment, carefree, like a rebel child. Life is feeling, more than thinking. Life is letting the wind lead us where it wants to.
Although the acceptance of the disease is not easy, and that my words can’t change it, don’t let sadness overtake you and waste every moment you have. Because it doesn’t matter who you are for that person; what it matters is that you are there by his side.
What really matters is what he means to you. His eyes, may not recognize the curves of your smile, but his heart will know forever the taste of your tears.
Do you remember all of the achievements that you celebrated together, and how little gestures can make a difference? So, just give your hand to those forgotten hands and smile. You know how life was good, and how tomorrow might be too late.
Therefore, don’t forget! Don’t ever turn off the light of hope and don’t waste time; celebrate life, be the strength of that (sometimes) lost soul, because, as Francesc Torralba once said, “There are incurable patients, but none of them are impossible to take care of.”
Palabras Amorosas Españolas
by Vanessa Cano, Pharmacy Student
Cuidar a alguien con enfermedad de Alzheimer o demencia puede ser un camino largo, estresante e intensamente emocional. Pero no estás solo. Cuidar a alguien con enfermedad de Alzheimer u otro tipo de demencia afecta cada aspecto de su vida diaria. A medida que su ser querido pierde una habilidad después de otro, se enfrenta a pruebas de resistencia, resolución de problemas y resiliencia. Como cuidador, manteniendo su condición física y emocional es crucial, no sólo para usted, sino también para la persona que está cuidando. Sin embargo, el cuidado también puede llegar a consumir todo su ser. Cuando las habilidades cognitivas, físicas y funcionales de su ser querido disminuyen durante un período de años, es fácil sentirse abrumado y descuidar su propia salud y bienestar. Prepararse, comprender la experiencia de su ser querido y busca el apoyo de otros para ayudarle a tener éxito.
Al igual que cada persona con la enfermedad de Alzheimer progresa de manera diferente, también puede la experiencia de cuidado de varían mucho de persona a persona. Sin embargo, existen estrategias que pueden ayudar a que su experiencia de asistir sea gratificante, ya que es un desafío. Aprender todo lo que pueda acerca de lo que está sucediendo y qué esperar en la evolución de Alzheimer no sólo ayudará a su ser querido, sino que también es el primer paso hacia la protección de su propia salud mental y física. Cuanto más aprenda sobre la enfermedad de su ser querido y cómo progresará a lo largo de los años, mejor será capaz de prepararse para futuros desafíos, reducir su frustración y fomentar expectativas razonables.
Mientras que la enfermedad avanza, las necesidades de su ser querido aumentarán y sus responsabilidades de cuidado se volverán más difíciles. Al mismo tiempo, la capacidad de su ser querido para mostrar el aprecio por todo su trabajo duro disminuirá. La prestación de cuidados puede parecer literalmente una tarea ingrata. Recuerde que su cuidado es lo que puede hacer la mayor diferencia en la calidad de vida de su ser querido. Es un regalo extraordinario.
Aunque no puedes controlar o cambiar Alzheimer, tienes control sobre cómo actúes así a su ser querido. Nunca olvides en tomar un momento cada día para recordar y apreciar lo que tienes ahora.
Taking care of someone with Alzheimer’s or dementia can be a long, stressful and quite emotional road. But you are not alone. Taking care of someone with Alzheimer’s or other types of dementia affects every aspect of your life. As your loved one is losing one capability after another, he faces a hard test of resilience and resistance. As a care partner, to maintain your physical and emotional condition is crucial, not only for you, but also for the person you are taking care of. Nevertheless, all of this effort can consume your whole being.
When the cognitive, physical, and functional capacities of your loved one decrease over the years, it is easy to feel exhausted, and neglect your own health and wellbeing. To prepare yourself, understanding your loved one’s experience and seeking support from others will help you succeed.
Just like every person with Alzheimer’s disease has a different disease progression, the experience of taking care of someone could vary immensely from one person to another. However, strategies exist that can help make your experience as a care partner rewarding, even if it is a daunting challenge.
Learning everything that you can about what is happening and what to expect from the disease, not only will help your loved one, but also it is the first step to maintaining your own mental and physical health. Moreover, it will help you prepare for future challenges, diminish your frustration, and incite reasonable expectations.
As the disease progresses, the needs of your loved one will increase and your responsibilities as a care partner will be even more difficult. At the same time, your loved one’s ability to show appreciation for all your hard work will decrease. Taking care of someone can be an unpleasant task. But remember, that your help is what can make the most difference in the quality of life of your loved one. It is an extraordinary gift.
Even if you can’t control or change the progress of the disease, you have control over what you can do for your loved one. Don’t ever forget to take a moment each day to remember and appreciate what you have now.