Here some extracts of the diary that dad kept for a few years. It describes the difficult moments that he experienced from the moment that symptoms of Alzheimer’s disease first appeared in mum. For almost 30 years, they lived in Vincennes (Val de Marne - France).

Dad was kind enough to share his diary with me, I publish some extracts today; for reasons of decency, I have deliberately omitted certain passages. Besides more than one web page would be needed to describe this accompaniment which lasted more than 3 years.

This diary is an account of how terrible it is to live with the disease. Dad can be proud to have dedicated himself so much to his wife. How many times did he get up in the middle of the night because mum wanted one of her items? (clothing, make-up etc…) How many times did he dress and undress her, and wash her ? How many times did he rush to finish the shopping out of fear of leaving her alone ? Dad offered the most wonderful gift that one can offer to one’s wife when she is suffering: to live for two. When one learns that one’s partner is lost, attending to them and to all their needs is heroic. He hoped, like us, to keep her at home for as long as possible, but the disease got the better of our hopes.

As for me, I cannot describe in a few lines, those years of worry and suffering. Her strange dizzy spells during which she would freeze for a few seconds with her eyes open, answering her questions without getting angry when she’d asked it twenty times already in the same day, following her in secret and switching off lights when she’d forget to do so, finding objects in the wrong place, all these became routine. Two particular memories are deeply engrained in me and I will never forget them. First, the day when I had to physically obstruct her when she was on the balcony and wanted to go outside, not because she wanted to commit suicide but because she was convinced that this was the way out. Also, 21 May 1998, the day we put mum into care. I was alone with her for a while, and I have never felt so dejected, because for ten minutes, she became aware of where she was, then she swore to me that I will forever regret abandoning her here. I tried to reassure her but emotion tightened my throat, I didn’t know what else to say. I will forever have this image of mum alone, looking directly in front of her, her hands posed on her vanity box. Me and dad were standing behind a pane, and we did not dare to look at her. We then left without saying goodbye, because it was too hard, we left before breaking down.

For us, a close-knit family, the disease (which, we thought, ‘only happens to others’), arrived slowly, cunningly. Mum had already had a very rough time in 1985, with breast cancer, and difficult chemotherapy. It seemed unfair that this evil could affect her because she never became ill, not even with a toothache, she was always in a good mood, often giggling, and did not drink or smoke. After isolation, sadness and anger, we must confront the harsh reality. A simple smile or coherent words represent so much to us. We know the course and outcome of this disease. Today, we bring happiness to mum during our visits to the hospital, particularly by trying, for a few hours, to recreate the family unit that was so brutally broken.

Stephane Taccola

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1994 - 1996 - 1997 - 1998

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1994

Monday December 26, 1994

Major fainting episode with fall, called firemen and transport to the hospital. At casualty, they notice memory problems (we have just become aware of Mireille’s condition). Quite a few days in hospital: 19, with excursions on weekends.

1996

I will remember 1996 as the year of hospital examinations, and the diagnosis of the disease.

Thursday November 22, 1996

Mireille puts her bra on back-to-front. She wants to go into town, but cannot find the ground floor. She returns for me and I make her take the stairs, she starts to go down the corridor, and I have to indicate the door for her to go down.

Monday December 2, 1996

I returned from the forest. Mireille put ether in her hair instead of hydrogen peroxide. She no longer remembers where she put NOLVADEX (the medication she has to take for life following her cancer), and especially if she has taken her medication.

1997

Tuesday February 20, 1997

She has the impression that she is not at home and that she is a tenant.

Friday February 28, 1997

Did not manage to sign her name on the income tax return. We went to the supermarket to do some shopping, she had a minor dizzy spell and we did not buy anything.

Saturday March 1, 1997

After Stephane’s call at 5.10 PM, she takes Chloe, our poodle, out for a walk. One hour later, she has yet to return. I am worried and, as soon as I go out to look for her, she arrives. She couldn’t remember the way back, and had to ask two people for directions.

Sunday March 9, 1997

She had two dizzy turns in the afternoon, the second was a bit strange, she could not stand on her legs although the dizziness was less severe, it’s as if she was letting herself go. I couldn’t lift her up, and, all of a sudden, she asked me where I was taking her and she got up herself and lay down in bed.

Friday March 28, 1997

First time : Mireille didn’t recognize me: she looked at me and asked: "Has Roger gone to work?". I told her that I was Roger, she looked at me and said: "I don’t recognize you!". I note that her memory has worsened since the last dizzy turn on March 9, 1997.

Saturday April 5, 1997

Since her dizzy spells, Mireille is completely depressed, she stays in bed, eats very little, and cries a lot. I haven’t given her VALIUM for three days, there has been no improvement as far as housework is concerned. I am sure that she needs company, but what shall I do ? She has been like this 26 days, what is the reason ?

Saturday April 15, 1997

Dizzy spell at 9 in the morning, less severe than usual but still worrying, I called Dr. D....... No diagnosis, he prescribes NOOTROPIL 800 for her "depressive" condition…This drug is meant for memory troubles and dizzy spells, it has nothing to do with "depressive" condition! She had small dizzy spells all day.

Sunday April 16, 1997

She had some minor dizzy turns in the morning and the afternoon. She slept and was much better,when she woke up she told me that she needs to get some treatment and was concerned that she had not recognised me some time ago. I suggested to her that she follow her treatment with TACRINE, she seems to agree to go to the hospital. When Virginie called, she told her that she doesn’t feel well and that she needs to be treated.

Thursday 17 and Friday April 18, 1997

Today, no dizziness but worrying behaviour. She realizes that something is wrong, she does not recognize her house, the furniture of the dining room, she doesn’t know where the toilet or the front door are, she doesn’t recognize her neighbour, she no longer knows where her daughter, Virginie, lives - occasionally, she cries a lot and tries to resist what is happening to her.

Saturday May 10, 1997

Since Mireille started taking NOOTROPIL 800 (April 15, 1997), I have noticed an improvement in her behaviour.

Wednesday June 18, 1997

Minor dizzy spell this morning around 8, Ginette, one of Mireille’s sisters calls at 8.45 to announce the death of her mother, in fact granny died on Tuesday evening at 9 o’clock, this morning Mireille may have had a premonition.

Friday June 20, 1997

Granny’s burial service, Mireille does not recognize many people.

Saturday October 11, 1997

Second time : It’s 4 in the afternoon, she slept for about 2 hours, I was sitting in the armchair, she looked at me and said:"Isn’t Roger here ?". She notices my surprise and so clarifies, "Isn’t my husband Roger here ?".

Thursday October 15, 1997

Dizzy spells this morning, Dr. D...... came and diagnoses hypotension, 100/60.

Sunday November 2, 1997

She has more and more difficulties getting dressed by herself.

Friday December 12, 1997

I was at the clinic from 9 till 2 in the afternoon, for a fibroscopy, when Stephane came to see his mother at noon she asked him where I’d gone. She could no longer remember that I was to undergo general anaesthesia.

Sunday December 14, 1997

Major dizzy episode in the kitchen at 9.30 in the morning. She was sitting in a chair, I saw her turn pale and was just about able to stop her head from falling on the table. She is like this for a few seconds, then struggles, with her hands flailing everywhere. I carried her to her bed and she vomited. She had already had several small dizzy spells yesterday.

Monday December 22, 1997

She defecated in the bidet instead of toilet bowl, I will try to place a sign to indicate the toilet .

Wednesday December 24, 1997

This morning, in spite of the sign in the bathroom, she still hesitates. A foul smell coming from the bathroom was due to a rag filled with excrement which was in the bin. Her behaviour needs to be supervised since she started taking the drug SYMPANEUROL. I have the impression that her health is worsening.

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1998

Thursday January 1, 1998

She didn’t realize that it was the new year, what will happen next year ?

Friday January 9, 1998

She asks to me whether I still have my parents and if she knows them. Confuses the dining room with the bedroom. She can no longer get dressed (depending on the day).

Friday January 15, 1998

She was still awake at 2 in the morning. As soon as a neighbour makes a noise, she thinks that there’s someone in the house, I have to show her that her stuff is in the same place. Every evening before going to sleep, she spits, coughs and swallows vigorously. She thinks that she only recently left Moussy (her birthplace), and that her stuff is still there. To cook rice, she poured it from the sachet into a pan. I have had enough, I am tired, I would like to be able to be alone some time. How long will I be able to hold out ?

Wednesday January 21, 1998

Her clothes are becoming increasingly dirty (underwear, pyjamas, nightdress). When she can’t find something, she says : "Before coming here, I had everything!". She thinks that the stuff she cannot find is in Moussy.

Thursday January 22, 1998

It’s 2 o'clock in the morning, and she cannot fall sleep, she complains of a headache, I give her EFFERALGAN. Foul smell from the bathroom: again, it is a very dirty cloth in the bin. Her underwear and pyjamas are increasingly dirty.

Sunday February 1, 1998

No longer recognizes her house, I have to take her by the arm and show to her the different rooms, she is very sad and afraid, she thinks that strangers are entering the house. Today, I sincerely believed that she would never regain her memory. I have some negative thoughts for the near future. Since 1 o’clock, I have had a bad stomach ache.

Tuesday March 17, 1998

Before going to bed, she washed the feet in the toilet bowl, she has more and more difficulty finding her way around the house. We went to bed at 11, she still cannot fall asleep. At half past midnight, she complains of a toothache, I give her EFFERALGAN.

Saturday March 28, 1998

Stephane and Lydia came for Mireille’s birthday. In the afternoon, me and Stephane went to the cemetery and Mireille stayed with Lydia. After their departure, Mireille asked me who the girl with Stephane was, and she repeated the question the following day.

Thursday April 9, 1998

She can no longer do the washing up. The nights are still very difficult. She doesn’t fall asleep before 1 or 2 in the morning. She is very agitated in the morning at around 4 o’clock, I am becoming increasingly fed up. She thinks the fish in the aquarium are birds, and she is afraid that they will fall down; she can see neither the panes or the water.

Friday April 10, 1998

We are in bed, and she says to me: "OK so you want to stay in this house, we are isolated here, what’s your name ? Do you have brothers and sisters ? Do you still have your parents ?".

Saturday April 11, 1998

She gets up at 8 and turns to me and says, "Who opened my jewellery box ?". She starts crying and tells me that she is unhappy. She returns to bed. She wakes up at 10, she is much better.

Week of April 18 at April 25, 1998

The night of 25-26 was terrible, at 4 o'clock in the morning, she still wasn’t asleep, and yet I had given her THERALENE (15 drops but without effect). I am exhausted. I can’t take much more, I just want to sleep, to sleep…Who can help me ? I have to find a solution before I do something stupid. Nobody can imagine the suffering caused by so much madness when you are helpless against it.

Sunday May 3, 1998

She wonders where she is, and asks to be taken to her house. She says that it’s cold here, I can’t convince her that she’s at home. Her personality is changing, she is becoming increasingly aggressive. I feel completely alone.

Wednesday May 6, 1998
Third time : In spite of 25 drops of THERALENE, and 10 drops of NOZINAN, she still cannot sleep, and it is 2 o’clock in the night. Every noise startles her, and she wants to return to her house. Suddenly, she gets up and says: "I want to know what’s going on here!", she turns to me and asks me to see a member of her family, this time she doesn’t recognize me, I talk to her about her husband, children, marriage, but nothing… I show her Chloe, she says she recognise her but not me. I am scared, I call Stephane, he speaks to his mother, she seems to recognize him, she calms down. She goes to bed again, but still does not recognize me. And she asks me why we have kept her memory loss a secret from her. Stephane arrives from Poissy, he speaks with his mother who answers in gibberish. He reassures her, and she goes back to bed. The following day, she gets up normally, and does not remember what happened.

Thursday May 7, 1998

I saw Dr. D......, he advised me to give her 10 drops of RIVOTRIL, he is not sure of the quantity! And 25 drops of THERALENE, however as soon as she takes the RIVOTRIL, she has difficulties in speaking and staying upright. I put her in bed at around 10 o’clock, she does not resist, and after an hour, she is still asleep. What relief ! I can hear her breathing very loudly. She snored, but she slept all night, for the first time in a long time.

Saturday May 9, 1998

With the drug she slept all night and, unfortunately, the day. At 5 in the afternoon, she wanted to go for a walk in her pyjamas. She came out in the street and started walking down announcing to me: "We’re going to the cemetery!". Afterwards, she no longer recognized her room. And she took all her stuff to Virginie’s room. The nightmare had started. I called Stephane, but the answering machine was on. She no longer knew where she was, she was moving around like a headless chicken. I couldn’t even undress her, so waited, then made her something to eat. She calmed down then I gave her the drugs. This is the only way to get some breathing space.

Sunday May 10, 1998

Around 4 o’clock in the afternoon, she wants to go out for a walk in pyjamas, with Chloe  only. She no longer knows where she is. I go outside with her, I feel ashamed. I try to dress her properly. She had defecated in the bathroom. She had put a hat, a napkin and a blouse on her head. I cannot take them off. I called Stephane for some reassurance. Fortunately, my kid is here! Chloe bit Mireille, so I comforted and looked after her. I made her something to eat and, at the same time, gave her drug. I am looking forward to one thing only: for her to fall asleep.

Monday May 11, 1998

She slept last night, at 3.30, her snoring was so loud that I had to sleep in Stephane’s room, I went to the supermarket this morning. I returned at around 10.45 to find Mireille in the kitchen. She couldn’t find the coffee, but she seemed well. She showed me where Chloe had bitten her, she did not remember that it was me who had looked after her. After she asked me where the WC was, and the nightmare began. She went to her room, and started preparing bags to leave to her house. I explain to her, as awkwardly as usual, that this is her house. She gets angry. So do I. She tells me to be quiet or the neighbours will hear. This means that, somewhere in her subconscious, she still remembers this house. Her speech becomes unintelligible. Finally, she goes to bed at around 11. 20. All this will start over again the next day. Lydia called for domestic help. I start to feel guilty, but when I see her like this, I would like her to be put into care.

Tuesday May 12, 1998

Today, it starts all over again, it is 11.30 in the morning, she is preparing her stuff to leave. I wait for Stephane before calling Dr. L. I decide to hospitalise her for a few days. After Stephane has left, at 3. 30, she is on the loggia. I give her two croissants, all seems fine, but she then notices the red shovel, she says to me: "I’m going to wash it and take it home!". She takes the shovel in her hand and while singing, she opens the main door to leave, I have a lot of trouble holding her back. Fourth time : : After taking her drugs, she falls asleep in the armchair. On waking, she asks me where Roger is, she does not recognize me.  I call Stephane and Virginie, she assures them that she does not know me. I manage to put her to bed, she gets up twice.

Wednesday May 13, 1998

It is about 11.30 in the morning, she gathers up all her stuff and wants to return to her home, this idea has made her hysterical.  She open all the doors and  windows and tells me that she is leaving,  I can’t hold her back any longer. I call Stephane urgently, he arrives at noon, he manages to calm her down a little, she tells him that she doesn’t want to stay with the other moron. We call Dr. D...... to ask him to hospitalise her, he tells me that I should call Dr. L to arrange this........ he would be able to admit her to Creteil in psychiatry but he advised against it. I call La Pitié hospital and leave a message on the answering machine. Nobody responds, we feel utterly destroyed.

Thursday May 14, 1998

After many calls to  Dr. L........ and the welfare department, and after Lydia had spent the day on the telephone trying to find a solution, we decided to leave Mireille a specialised home in Poissy called ‘Eleusis’. This costs about 75 Euros per day. I made an appointment for Saturday May 16 at  2.30 pm to see the place and to talk with the psychologist.

Saturday May 16, 1998

After we arrived, and while waiting for the psychologist, a man accompanied by his wife approached me and shook my hand. He had difficulties in speaking. I understood his name though, Jean-Louis L...., a former colleague at Montrouge, 10 years ago! And to find him with Alzheimer’s disease in the same place where we are thinking of placing Mireille !

Thursday May 21, 1998

We took Mireille to the home, it was heart-breaking to have to leave her. She said to Stephane that she will never forget, what we have done, putting her into a madhouse. We saw her sitting in a chair, clutching her vanity box in her hands. She seemed very unhappy, Stephane was incredible, I am so proud of him, he has nothing to be ashamed of. At 5pm, I telephoned ‘Eleusis’, and the nurse told me that Mireille had danced with another man. If she could be happy in her new world, we would feel less guilty.

Friday May 22, 1998 to Tuesday June 2, 1998

When she sees me, she cries and asks me to take her back her to her house. I don’t know what to do, because if she returns, it will all start over again. I had thought about taking her to Moussy for a few days . Today, I don’t know what to do: as my kid says, we really are all alone...

Roger Taccola

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