This story recounts a part of my life, which was a time of trial, and during which the Lord entered my heart. The difficulties I encountered allowed me to experience the reality of His Presence, His Goodness, His Love. My husband suffered from Alzheimer's disease. People who suffer from this pathology lose their identity, and over time all their faculties. It is a disease that
affects the whole family, and particularly the spouse or children when the sick person is one of the two parents. For a long time I didn't know what he was suffering from. It was a time when Alzheimer's was not talked about. I did what I could and what I knew how. It is very difficult for loved ones to accept the disease and cope with it. It is a life that explodes, all our plans are destroyed, and we move forward with the sick person into the unknown. Tony and I got married in 1966, from our union were born three children, a girl and two boys. We lived a great love, Tony was forty-five years old when we got married and I was twenty. This twenty-five year age gap was only obvious to those around us. We were With Tony we shared the same tastes, the same ideas, the same desire for a family. So the arrival of our children was a great joy for us: even if our first-born had Down syndrome. Marie-Chantal was welcome. We accepted and welcomed her with all our hearts. We were aware that we would have to help her blossom, with all the attention that this entails. The birth of our two sons Jean-Robert and Yves fulfilled our wishes. Our life was made of love, of simple joys. We were not rolling in money, but we were happy with what we had. The first fifteen years of our marriage were a time of happiness shared with our children. Tony was a good father, strict but fair, he loved his family, and we loved him too.
Our life was bathed in a gentle warmth. I have always been keen to give well-being to my loved ones. When the people around me are happy, that is enough for my happiness.
His immediate memory was no longer functioning.
In the 80s Tony's behavior began to change. The first shadows of the disease surprised us. We did not understand why from time to time he had attitudes and reactions that were not like him. Daily life was punctuated by good moments when everything was going well, and suddenly Tony would disconnect from reality and then return to normal. I said at the time: "It's his quarter of an hour coming back!..." However, these times of absence became more and more frequent. The warm atmosphere in which we lived gradually disappeared and gave way to a life of suspicion. I could no longer speak with the children because he felt betrayed. He thought that we were plotting against him. Finally, he ended up no longer recognizing his sons and taking them for rivals. I suffered from the situation we found ourselves in, from the way he looked at them and at me. It was insulting and outrageous. In his heart his children were no longer his children, but strangers who came to confront him, to defy him, and I betrayed him. This was the most painful thing to live through during the illness.
Jean-Robert already knew Valérie, his wife today. He found support and comfort from her and her family. Yves, for his part, experienced this situation in isolation. It prevented him from developing and blossoming, and it took him a long time to assert himself. Marie-Chantal also suffered. She noticed the change in her father before us and over time she withdrew into herself. She spoke less and less and suffered from insomnia. She ended up developing a pancreatic tumor that took her life!... We were each suffering on our own. A heavy blanket had fallen over our family. Tony was starting to forget things. For example: on Sundays, he used to play tiercé. One evening he looked at the results
of the race on TV, and realizes that he has lost.
The next day he said to me:
• What came out of the tiercé?
• But! You know it well, they gave the winning numbers and you lost.
• But not at all!
• But yes, remember!
• Never in my life do I know the results!...
This was his reality, he no longer memorized. His immediate memory no longer worked.
It was at this time that the Lord came to meet me through a neighbor.
Christian, who gave me her Bible. This Bible was my companion for ten years. When I no longer knew what to do in the face of everyday difficulties, I would take refuge in my room. I would open it and ask God to help me, and I would always find a verse to soothe me. From there, I could reflect and find a solution. There is a verse in Psalm 84 V-6-7 that I have made my own after having experienced its benefits.
< Blessed are those who place their support in You!
They find clear paths in their hearts.
When they cross the valley of Baca (the valley of tears)
They transform it into a place full of springs
And the rain also covers her with its blessings >
This verse was a reality for me. The Lord was there, He answered, He guided me. I walked with Him hand in hand. He was my Refuge, my Help. Without Him, I was alone to face the illness, the adolescence of my children, my parents who did not understand, and who could not give me any moral support. Another verse reinforced my convictions in Hebrews 11. V. 1.
< Now faith is the substance of what is hoped for, the evidence of what
we do not see. > In a few months, through the trial, my faith had grown. I clung to the Lord like a castaway to a buoy in the ocean.
Our life had completely changed, the disease was making its way slowly but surely. I suffered from the distance that was growing between us. There was no reason for things to change. We had everything to be happy!...
What was wrong? Tony was mistreating us even though he loved us. It seemed like we
no longer met his expectations. And besides, what was he waiting for? It was confusing and
incomprehensible, we were all suffering. It was becoming more and more difficult to manage. We had to adapt to an unusual situation, protect the children as well as myself. At times I didn't know what to do or what to think. The Bible was my Refuge!...
I couldn't imagine my life without Tony. In the state he was in, what would he have done on his own? He
needed to be understood, loved and so did we. At that time I took refuge in prayer. The Lord helped me to understand, to calm down, to accept words that deeply affected us. I sometimes felt a tangle of emotions to the point of no longer knowing what state I was in. I am naturally calm and patient but patience has its limits. I had to learn to go beyond that. Without the Lord it would have been impossible. He shaped me, at that time I would say “chiseled.” Because the blows I suffered were like hammer blows.
This relieved us, everything was explained.
I had gotten into the habit of not upsetting Tony, because it was the only way to calm him down. Everyone reproached me for it: "He talks nonsense, and with you he's always right!" We remained for a long time without knowing what he was suffering from. Until the moment when a diagnosis was made, it relieved us, everything was explained. Even if the illness had changed him, for us he remained the father and husband that we loved. Our suffering was less great and above all
less heavy. We now knew that his reactions were beyond his control. That he did not do it on purpose. It was up to us to adapt. But for the children who had suffered difficult days and hours during their adolescence, it was necessary for their well-being that this stop. As soon as they had a job, our sons left home. They reacted with the intelligence of their hearts. They were good children. They never said a word louder than the other towards their father, or towards me for that matter. They studied and learned a trade, which allowed them to become independent. Thus the Lord spared us, we did not suffer from unemployment.
In 1991 we had the misfortune of losing Marie-Chantal following a medical examination. (...It was the greatest ordeal of my life, from one day to the next everything changed (... Tony was able to tell me: "You know Arlette, hold on because I feel like I'm slipping." Then God carried me (... I had to mourn my daughter and at the same time see Tony disappear a little more every day
in the mists of illness. One day he said to me:
— You know it's not possible. I don't have the right!...
— But what aren't you allowed to do?
— I can't ask you to sacrifice your life to stay close to me!...
— But who am I to you?
— Well! You're a friend!...
— You know Tony, I'm a woman, and I'm your wife!...
— But what are you telling me?
I showed him our wedding photos, and when he saw them he said:
— It's not possible, I think I'm going crazy!...
I then reassured him, and told him that I would stay close to him, that he should not worry.
You should know that our memory is like a pile of books, and each one contains a period of our life, all the events pile up since childhood. In Alzheimer's disease, as the disease progresses, our memory fades and deletes a book, then two, etc. This means that the sick person goes back in his memory, and does not live in the same space-time as us. Tony had forgotten the birth of our children, our marriage, he was at the time of his celibacy. Sick people need to be comforted all the time,
reassured, because they get lost in the twists and turns of their past. It is a disease that
asks for the loved one (the caregiver) a lot of love, patience, humility.
He knew who I was.
It was difficult for me to understand and accept that I no longer existed in Tony's mind. The illness had erased us from his memory. We were no longer part of his present. However, I remained his point of reference, and the most important person in his daily life. The one who reassured him with her love, with her gentleness, like before... Emotionally, he knew who I was!
We must forget the person we chose for their qualities, their character, and mourn.
white. The days had passed and Tony had gone through periods of lucidity, and flashes
of increasingly long absences. One evening while we were watching a program on TV which
was dealing with Alzheimer's disease. He hadn't been diagnosed yet. He listened carefully and
the end he said:
— "Well! That's exactly what I have, but I'll fight!..."
He fought and struggled, and when he couldn't fight anymore, I fought for him. He had become
fearful, he felt threatened, he was paranoid. They wanted to take his wife, his house.
When there was work in the building, they installed microphones to spy on him.
(...). He was hallucinating, everyone was speaking Italian (his mother tongue) and people were jumping
the garden fence. He closed all the shutters and blocked the windows to protect himself. One day
he said to me:
— “Did you see what they’re threatening me with?”
• No !
• Ah! Of course, I understand, you agree with them!... I don't want you anymore, I don't want you
more !
• Well, listen, if you don't want me anymore, I'm going to go back to my parents.
It was not the time to upset him. We had to go along with him so as not to make the situation explode. We went to my parents' house. Jean-Robert joined us there. He managed to calm him down. After this episode, he had to be hospitalized and his hallucinations and paranoia calmed down, with very heavy treatments that destroyed him.
During this stay I saw Tony deteriorate. I had to accept this decline. We
would not have been able to continue without the care he received. It had a beneficial effect and
destructive at the same time. It was an additional ordeal for me. Had I done the right thing in having him hospitalized?... However, this passage was inevitable.
Always be cheerful.
After three months in the psychiatric clinic, he came home. He had become
incontinent and very dependent. I needed to reorganize our life. Over the last few
years, with God's help, I had learned patience and humility, as for my love for
Tony, I still had just as much, if not more. Love excuses many things. Whether it was for Alzheimer's disease or the birth of Marie-Chantal, we never said: "
Why, why us? We have always been in acceptance. It has
certainly made things easier, and despite everything allowed us to live happy days, which helped us get through the trials.
I had often had to step aside, think more about him than about myself. Tony's well-being was
essential, and contributed to my happiness. The house had become a hospital with the coming and going of nurses, the physiotherapist and the housekeeper, we had lost our privacy. We had lost so many things! ... However, we were there and happy to be there. We had to rebuild our family life, which had exploded with the onset of the illness. Nevertheless, love (our love) was intact. During all these years we had been able to draw on our past happiness to warm our hearts. Tony's presence at home gave me all the courage. Our house had to find its soul again! ... During all this ordeal despite the difficult days, the Lord allowed me to keep His Peace and the joy that goes with it. "Always be joyful" is what was written on the poster that we saw when entering Tony's room. We could also see photos of our children and the grandchildren who had arrived in the meantime. Tony had become bedridden, life had been organized around him. The children, big and small, had found their way home. The worst of the storm had passed.
His soul was alive, and he existed.
We had found our happiness again, certainly, but everything was different. Each had found his
place. The grandchildren came to spend Wednesdays with us. The house echoed with their
shouts and their laughter. When, while going about my business, I passed by to kiss Tony, I
I said: "Is it nice here?" he closed his eyes as if to say: "Yes, it's nice!..." and his gaze fell on the photos of the grandchildren.
For several months, Tony had not spoken. One morning, I approached his bed, he woke up
with a start and said to me out of the blue:
"The little one, the little one, I don't know where she is!..."
I reassured him not to worry, that I would take care of it. His silence could
to suggest that he was psychologically absent. His reaction struck me and I said to myself: "He dreams, in his head, he speaks, he has emotions, therefore he exists!..." You have to know that a person with Alzheimer's disease loses their mind, but remains whole on an emotional level. We function like a transmitter-receiver station. Tony could no longer emit but he could feel everything. The love, joy, peace that we brought him were food for him. His soul was alive, and he existed!...
After many years of illness Tony left us. When he was alive and before his illness, he had no faith. So I don't know if he is with the Lord!... If I hadn't had all these trials I wouldn't have gotten so close to God. I could have moved away from Him, but I chose to follow Him. I found peace with Him. When Jesus says: "Peace I leave with you, my Peace I give you," it's true, everything is within our reach. We must seek: He who seeks finds and to him who knocks it will be opened. You have tested me, Lord, and you have strengthened me. Be praised for Your Greatness and Your Goodness.
Conclusion :
Today I am a volunteer at France Alzheimer. We help and support families
affected by this disease. I intervene to explain and make professionals and families understand how to act and react with a sick person. My experience leads me to believe that in the decadent world in which we live, this disease forces us to work hard on ourselves, and brings us back to the very essence of being. As a Christian, I tell myself that if the Lord allows such things, it is not for nothing, that there is a message. This disease has become a public health problem for society, but for us Christians, it should be a subject of spiritual reflection. There are a lot of things to understand in
which concerns: “body, soul, and spirit.”
Arlette Marrone