“I have always thought he was immortal, for all he’s done, for how he considered me, for everything. Then one day I realised that things were starting to change” (Mirella).
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Mirella is the story of a woman, a mother, a wife, a grandmother.
Mirella is 71 years old, she spent 43 years of her life with the only person loved.
43 years of sharing, difficulties, laughs and beautiful moments: a family, a house, values handed down.
In the last 6 years something changed, Mirella had to fight against her husband’s illness, the Alzheimer.
She devoted her life to him.
“I have always thought he was immortal, for all he’s done, for how he considered me, for everything. Then one day I realised that things were starting to change” (Mirella).
Mirella has spent every single day taking care of her husband with positive attitude and reassuring gestures along with thoughtful attentions full of love and respect despite he has been diagnosed with the syndrome long time before.
Mirella never gave up as she was convinced that every single gesture would give relief and would be the actual cure to nurse Luigi back to health.
In Rome thanks to a common friend. During that time Luigi was teaching mechanical drawing in a private school in Rome. Then he won a public contest, a job in Rovereto, his home town.
“I tried to stimulate him – Luigi this is? what’s your name? – he looked at me, his eyes two star but so empty he couldn’t remember, he didn’t know” (Mirella).
“He was born between the mountains and he moved to Rome only because he loved me so much, so that he spent all his life in Rome. It wasn’t easy for him, but he did..” (Mirella)
It seems to be confirmed that the accumulation of beta-protein in the brain, responsible for the degeneration on a neuronal level, starts 20/30 years before the appearance of the first symptoms. The possibility of early detection of the grade of beta-protein accumulation thanks to the PET scan can allow in the future to find non toxic substances able to oppose the degenerative phenomena.
All of a sudden Luigi stopped eating on his own. The presence of food and cutlery in front of him didn’t stimulate any automatic reaction.
Alzheimer disease is the most common form of senile dementia, dementia means loss of the cognitive skills (thought process, memory and reasoning). However cognitive loss doesn’t mean loss of sensibility. Mirella is well aware of this and often through the most difficult times she fills their days with kisses and caresses.
Mirella and Luigi have been married for 43 years. 43 years of sharing, of difficulties passed together, of smiles and happy moments; a family, a house, projects realised together. If on one side memories fade away, on the other they give you the strength to go on. Mirella and Luigi in the picture celebrating their twenty-fifth wedding anniversary.
During the first phase of the disease, help during everyday activities is marginal. However as Alzheimer advances, while slowly destroying the memory and the cognitive skills, it blocks the patient from doing even the easiest actions. Washing her husband has always been a difficult task. Luigi is built broader than Mirella and this didn’t help while carrying out her daily jobs.
Worldwide, nearly 35.6 million people live with dementia. This number is calculated to double in the next 20 years, to a estimated 65.7 million in 2020 and 115.4 million in 2050.
Memory of journeys done together. Mirella and Luigi were used to organize once a year a trip even for few days. Their last travel was in 2004.
After the wedding Mirella and Luigi lived 3 years next Trento. Thanks to a job transfer Mirella and Luigi moved to Rome in 1971 living in the same house up to this time.
Mirella faced many difficulties such as the loss of dialog with her husband: no more proper answer to simple questions from him.
“He couldn’t remember anything, anymore, he couldn’t recognize his children or his wife either” (Mirella)
She became his caregiver looking forward with devotion, strength and love as long as there is life there is hope even if memories are slowly wasted day by day relentlessly.
What could it be more dolorous than not to be recognized anymore by the person loved, the life partner?
Mirella is the love story of a woman for her husband, a woman suddenly forced to face on her own the biggest difficulty experienced, made by hopes and unbelief, pain and resignation, sorrow and powerlessness.
Mirella spent her life next her husband, she never abandoned him; not an hospital, not external assistance until his last day, he died with immense pain in his house between his loved ones.
He died in the same house where they spent together their whole life.
Bio
Unfortunately at the moment, there are no drug treatments available that can provide a cure for this disease and all the treatments available aim only to limit the symptoms. For some patients, in which the disease is at a mild or moderate decline, drugs such as tacrine, donepezil, rivastigmine and galantamine can help in relieving the symptoms from worsening for a few months. Luigi was on medication for six years but nobody knows if they have actually slowed down the disease or not.
71 years old. Mirella brings her husband his birthday cake. Through 6 years of the disease, Mirella has always celebrated her husband’s birthday.
A moment of apparent normality. With the progression of the disease moments of lucidity become fewer before they disappear completely.
“There is Luigi in each picture, I will put them in order with patience and when I will miss him I will open again the drawer containg all the pictures” (Mirella).
In one of the advanced phases of the disease, when the amyloid plaques and the neurofibrillary tangles increase in the brain, the patient looses the perception of day and night. During the last phase of his disease, Luigi would often stay awake almost all night long and sleep during the day. This change in time has also involved his wife who had to adapt herself to this new rhythm with much effort and stress.
“He was happy when his family, me and his children were happy, we were his joy… he lived for the family” (Mirella).
Neuropsychological and cognitive assessment, including memory and executive functioning tests, can determinate the status of the disease. Many medical organizations created diagnostic criteria to facilitate and standardize the diagnostic process. The clinic diagnosis is confirmed at a pathological level only through the histology examination.
“It is a disease? I think the worst it could be a man like that completely deprived” (Mirella).
After six years since the disease was diagnosed, Luigi died in May 2011 at home surrounded by his wife and his family.
Fausto Podavini, born in Rome, lives and works in his native town.
He started his photography passion at 18 years old first as assistance and studio photographer then going in for ethnological and social reportage. He worked at the MIFAV, Photography Museum of Tor Vergata University, in Rome in 1992 and studied at the Jonh Kaverdash photography academy in Milan obtaining a Master in Reportage. Fausto left studio photography to dedicate himself exclusively to reportage, nowadays he is a freelance photographer who collaborates with many ONG making reportage in Italy, Perù, Kenya, Ethiopia where currently he is developing personal photographic projects. He has exhibited in many places including Rome, Milan, Kuala Lumpur, Paris, Buenos Aires and attained over the years many Awards, including: World Press Photo 2013, FIOF photographer of the year 2011, World Report Awards again in 2011, the PDN 2012 and Winephoto 2012.
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Fausto Podavini
While some of the photos are touching, there is nothing redeeming about taking care of someone with Alzheimer’s. I think these kinds of stories are not helpful for families facing this terrible disease.
My father died of Alzheimer’s. My mother died from the crushing burden of trying to take care of him. My father wasn’t aware much of the time who my mother was, much less cared who was taking care of him. Finally, my mother’s health destroyed, we put my dad in a nursing home. And then my mother. My mother died in June, 2002. My dad in July, 2002. There are no winners with Alzheimer’s.
Great job…and moving. My father in law suffered with Alzheimer’s until he died at 82. My father, 82, now is dealing with Alzheimer’s. My mother is his care giver. I have worked with the Alzheimer’s Association for the past 7 years and have seen how photography can bring awareness and raise money to help fight this horrible disease. Keep up the good work.
So touching and personal. Again, the Burn finalists were much more quiet than the previous years. This is a beautiful example of that. The last image hammers home the circle of life. Thank you.
This is excruciatingly beautiful.
Jim, I’m always amazed by your capacity to only see the negative side of everything.
There is tragedy and pain in all our lives, the veil of tears. And of course in the end we will all die. So why should we be joyful about anything, what’s the use? Why not be joyful?
I see this as a beautiful love story, beautifully photographed.
Gordon, I agree a 110% with you. Well said.
I think this is a wonderful essay. I’d really struggle to choose between this and Diana Markosian’s winning essay. I guess I’d go for Fausto’s as I have a mother suffering from the onset of Alzheimer’s so I have something in common with this essay.
Jim, to some extent I can understand how you feel, it must have been terrible to witness, but, that said, I don’t agree with your blanket statement that all families affected by Alzheimer’s would find this kind of photo-essay unhelpful, especially one as lovingly rendered as Fausto’s.
Great work.
Through the whole thing in the back of my mind I wondered how you would end an essay on such a topic…
And the end was beautifully done. The last few pictures are great leading up to the outstandingly beautiful one at the end. The essay really is well done all the way through.
This is one of the most ironic things about life – so much beauty can sometimes be found in such terrible human suffering and misery. This essay captures the beauty of deep, genuine love, love that persists when the pleasures so often associated with that love have left the human body. In the love that led her to care for her husband Mirela did find redeeming value.
Jim, I am truly sorry for the breakdown and suffering of your parents and your experience with it. Although not Alzheimers, I went through something similar with my parents.
Great I particuraly love the last picture, with the baby in the left corner! LIFE! This images rememember me those of Alejandro Kirchuk of EPF 2012.
Well done. Shine. P
there is something in this project that consume us, and this main ingredient is about being close. here we have a theme straight to the point and with this we are capable to touch, to fell, to be involved in.
i know the feeling on being in the front row seeing the damages that this decease can do. i denied several times some behaviors and stages. it can be so passionate and at the same time so outrageous.
in this kind of subject, the technique is in you hearth and your captures are more than never in you eyes.
thank you for showing the true.
Thank you all for your comments!
I understand the words of Jim.
This work has been my experience
In Alzheimer’s disease there are no winners. But I believe that Alzheimer’s should be telling.
Truly a remarkable job. Exciting and masterfully executed.
Complimenti!
wonderful essay, with excellent serie of images. powerful
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