HISTORY OF VISITS AT THE HOSPITAL
On Thursday 21 May 1998, Mum left her flat in Vincennes for good, because it had become impossible to look after her at home. There were no beds available at La Pitié Salpetrière (dad and I are still waiting for an answer from the social worker...), so Mum was institutionalised in a specialist centre at Poissy called ‘Eleusis’, where the accommodation fees were 75.46 Euros per day. On 13 July 1998, she moved to a retirement home called ‘Le Parc St Martin’, at Saint Martin d'Ablois. The setting of this home was simply stunning; this is about the only thing we remember about her stay because in October 1998, the overly high doses of neuroleptics caused other health problems, mainly manifest by stiffness in her neck which prevented her from eating properly ; we had to take her to the casualty of the geriatric hospital ‘Auban Moët’ in Epernay, and, shortly afterwards, she was admitted to a Long-Term Care Ward called ‘ULD.’. I cannot praise this service highly enough; the staff and the care they provide for dependant people at the end of their lives are exemplary... I want to draw your attention to a critical problem for families caring for someone ill: I’m talking about the costs of managing people with Alzheimer’s disease. For Mum, the accommodation fees were 79.27€ per day, I’ll let you work out the cost per month… In addition, there are medical fees, which are reimbursed at 50% by the social security. When will there be 100% reimbursement? The family suffer and relatives are isolated, and, to top it all, the spouse usually has to handle this situation alone. In the long term, it can become a financial nightmare.
| Visit of Tuesday 28 December 1999 | Visit of Thursday 3 February 2000 |
| Visit of Saturday 11 March 2000 | Visit of Sunday 26 March 2000 |
| Visit of Thursday 27 April 2000 | Visit of Monday 5 June 2000 |
| Visit of Wednesday 5 July 2000 | Visit of Thursday 13 July 2000 |
| Visit of Thursday 10 August 2000 | Visit of Saturday 30 September 2000 |
| Visit of Thursday 9 November 2000 | Visit of Thursday 7 December 2000 |
| Visit of Thursday 18 January 2001 | Visit of Monday 26 March 2001 |
| Visit of Saturday 2 June 2001 | Visit of Thursday 2 and Friday 3 August 2001 |
| Last visit on Saturday 8 September 2001 |
Visit of Tuesday 28 December 1999
When Mum is not walking around the corridors of the Ward, you’ll find her sitting in her armchair staring into space. On that day, I arrived at around 2 o’clock and dad was with her, holding her hand. The hospital had been decorated for the festive period. Mum greeted me, without really knowing who she was greeting. I’d brought her a fruit pie. We all ate some. – We couldn’t go outside because of the bad weather. – Mum was particularly well dressed today, especially because of the new slippers that dad had given her. – To prevent Mum from wandering off, we have to attach her to the armchair using a sheet. We have a lot of trouble making her sit down, and if we succeed, she immediately gets up. – She seems to listen to our conversation, and to want to take part but cannot. Often, she turned to dad, calling him Roger. It seems that this bond is too strong to be erased from her memory. – Physically, Mum is still beautiful, a picture of health, with stunning blue eyes. Her skin is as soft as a baby’s. I find it hard to believe that someone so ill can have a face so full of life. You can tell for yourselves from the photos on this site. – Dad tells me that Mum can no longer eat unaided. – As far me, Mum doesn’t recognise me any more, but seems to be happy to feel my presence. Now that we can’t talk, we communicate using emotions. Our looks and our gestures are important. – She is very sensitive to noises. – We have discovered another way of leaving at the end of our visits. Before, we had to hand her over to the staff. Now, all we need to do is place Mum in her armchair, attach the sheet, and give her a piece of cake or something else to distract her attention. Then she doesn’t notice us leave. So, we can leave without feeling bad. – I would have loved to spend the new year with her.
Visit of Thursday 3 February 2000
I arrived at the hospital at the same time as dad, we both went up to Mum, who was in her armchair, attached to it with a sheet. She seemed to react to our greetings but she would probably react in the same way if we were strangers. – We walked around the ward, holding her hand then we sat around the table, and, as usual, we had to attach her to prevent her from getting up. We all had a snack: biscuits, fruit pie, apple juice… - I thought she’d got thinner, dad thought so too, he told me that she was not well a few days ago. – Many times, she seems to recognise dad, addressing him by his name, ‘Mr Taccola!’ or ‘Roger Taccola’; however, she often also calls him ‘Mr’. – Dad went off for a while; whenever I am alone with her, I often ask whether she is in any pain or whether she’s OK. It’s difficult to know whether she replies accurately. However when I asked her, ‘Have you got a toothache?’, she replied, ‘Yes, but you mustn’t tell him, or he’ll get angry’. I told her that she must talk about it to her husband Roger, that she mustn’t be scared. She agreed straightaway: ‘OK, I’ll tell him’. When dad returned, she turned to him and said something unintelligible; again, I asked her whether she had a toothache, and she replied, ‘No’. – Her hair gets dirty quickly, and today it is greasy. – I also noticed that part of one of Mum’s front teeth had broken, and her teeth are not as healthy as before. But how can we brush her teeth? The staff have a lot of trouble doing so. It’s something that I could manage easily a few months ago, even if mum would sometimes swallow the toothpaste, thinking it was food. Now, it’s impossible. We’ll do something about her personal hygiene on another day, when she is calmer and more docile. – It’s obvious that family visits are becoming rarer, it always seems to be the same people who visit. The others don’t show up any more, they have not understood that Mum needs to have company, to feel a presence, of whatever kind, even if just for a short while. It’s a real shame. – I took some photos but Mum hardly smiles any more; I’ll carry on taking photos until the right moment arrives, a smile is so rewarding for us, it means that she is not suffering a lot physically. – We left after performing the same ritual. After kissing her, we said, ‘Bye, we’ll be back in just a moment’. She didn’t seem too concerned to see us leave, she just turned away and carried on looking into space.
Visit of Saturday 11 March 2000
When I arrived at the hospital, Mum and dad were taking a walk in the ward. - Again, Mum hardly seemed to react when she saw me. However, even if for short periods only, she always seems so happy when people take care of her and when she is in company. – We sat around the table in the dining room, as usual, and it was difficult to talk. Even though Mum’s speech doesn’t make any sense, she never stops talking. Now, we have to resign ourselves to the fact that dialogue is no longer possible with Mum. We tried again to make her take part, by asking her questions, to no avail. – Dad told me that some of her clothes had been ruined following a technical problem at the launderette. - At one moment, I held her hand so that she could accompany me in the corridors. I was able to notice that her right hand was trembling more at the moment. During our walk in fact, the trembling was so strong that my hands also trembled. The dosage of the neuroleptic had not been increased however. – Before leaving, dad placed her in her armchair and two healthcare assistants arrived to help him. While looking at one of them but obviously addressing us, she cried out, ‘I love you’ and then just before we were outside the room, we heard her say, ‘He’s lovely, isn’t he?’
Visit of Sunday 26 March 2000
Today, Mum celebrates her 69th year! We would have liked to be somewhere else but, confronted with the harsh reality, we managed to make the most of the circumstances, especially because it was her second birthday at the hospital. My present was a pair of slippers and dad gave her a bunch of flowers. – The weather didn’t do us any favours today. Five minutes after my arrival, Mum had a dizzy turn. While walking along the corridor, she suddenly went pale, staggered and almost lost consciousness. Luckily, dad was there to stop her from falling down. We were just outside Mrs M’s room, and she lent us her armchair for Mum to sit on. A nurse came to take Mum’s pressure. A few moments later, her colour had returned, and we continued walking. She had no other dizzy turns on that day. - Dad and I are worried because trips outside of the hospital are becoming increasingly difficult. It’s true that recently, we have had to limit these trips, due to the bad weather. However, we also have to admit that Mum doesn’t walk as well as she used to. – Dad told me some good news however. Some of her clothes have been found (see 11 March 2000), this is very good news because some of these clothes really suit her. – While I was there, two of Mum’s sisters and one of her brothers arrived. We talked a bit about everything, and of course about Mum, and we all thought that she was able to see herself and her condition. And, we reckoned, for someone who was always very fussy about her appearance, ending up in a Long-Term Care Ward is not only unjust but demeaning. It is fortunate that the staff are able to preserve the dignity of such patients. – I have noticed that when some of the family get together, like today, Mum becomes very quiet and very serious. It’s not because we’re shutting her out, we continue to answer her questions, which arrive non-stop. Maybe she is absorbed by our discussion, or maybe, and I hope I am wrong, it is the tone of our voices that alarms her into silence. I’m sure my aunt is right when she says that a bit of life, a bit of noise around her is not really a bad thing. – On that day, I would have liked to see Mum smile, but I wasn’t so lucky.
Visit of Thursday 27 April 2000
Nothing in particular to say about this visit. As usual, we looked after Mum. She was quiet most of the time, but at other moments, she couldn’t stop asking questions, which however were unintelligible. Today, our biggest regret was that, once again, we were not able to go outside for a walk, because of the changeable weather.
Visit of Monday 5 June 2000
It’s raining today so, once again, we’ll have to forget about going for a walk outside. – When I arrived, my parents were together in the corridor. Dad said to Mum, ‘Look who it is! It’s your son, Stephane!’, and she responded with, ‘Hello, Mister’. Evidently, she had not recognised me but I was rewarded with a big smile. – Mum has lost weight, this is most noticeable in her cheeks, which are hollow, and her hands, which are thinner. Yet the staff reassured us that she is eating properly. – Dad also revealed to me that last time, she physically rejected the liquid he was trying to feed her, making a mess; it was as if she had forgotten how to swallow. – At another point, while we were in the corridor, heading towards her room to have something to eat, we noticed her legs giving away, she lost her balance, but luckily dad was just behind her, so he could catch her in time! After losing consciousness, Mum remained on the floor for a while, and the nurses and healthcare assistants rushed to help us pick her up. It took a while for Mum to fully recover from the fainting, she remained pale for a long time. We sat her in a medical armchair and the assistants took her to her room. – We caressed her hand, as if to reassure her, but she still took time to recover. The nurse took her pressure, but found nothing abnormal. This is not the first time that she has had a dizzy turn, this happened quite often at home (see Diary), we could not put our finger on the cause of her fainting, maybe stress, or annoyance? But, anyway, I am still worried; during these episodes, her expression is dreadful and it’s like she exits her body… - A few moments later, she fell asleep with her eyes open. She seemed calm. – Her right hand still trembled, but this seemed to improve during her sleep. – We also noticed that her left eyelid was hollow, was this due to her weight loss? We don’t know, because her other eyelid seemed normal. – We also noticed that her broken tooth could be dangerous to her. We’ll see what we can do about it before an accident happens… - Mum woke up before we left, and the first face she saw was dad’s. She seemed happy to see him, and beaming from ear to ear. Dad kissed her. It was my turn next and before we left her room, she called out to me, ‘See you, Mister!’
Visit of Wednesday 5 July 2000
It was dad’s birthday today. – As usual, the weather turned out bad for my visit, I’m so unlucky… - We managed to take Mum out between two rain showers, but not for long because Mum doesn’t walk as well as she used too. This makes us think about the future… She moves very slowly, but doesn’t complain of any pain. This is her pace, and we’ll just have to get used to it. – One thing in particular struck both dad and me; we noticed Mum’s knees are slightly bent when she is standing. Is this posture a sign heralding the decline of her whole body? Only time will tell… - Mum was very agitated during the few hours that we were with her. – In her room, dad tried to remind her that I was with her. He said, ‘Look! Stephane’s with us today!’, to which she replied, ‘But Stephane’s dead?!!’ We then tried to reassure her by telling her that she was wrong, that I was alive and that I was in the room with her. Finally, she smiled, realising her error, and seemed relieved. – We tried to weigh Mum on the bathroom scales. We had a lot of difficulty trying to make her co-operate. Fortunately, the healthcare assistants helped us get through a very difficult situation, at one moment, Mum became frightened and wanted to know what was going on. In the end, we succeeded, she weighed 53 kg. – In the dining room, we managed to sit her down after enormous efforts. We talked for a while, then took turns to go for walks in the ward because she couldn’t sit still. – I see less and less of other family members; it’s a shame because, even though Mum hardly seems to recognise anyone anymore, you just have to spend some time in her company and watch when she starts to smile to realise that she is happy to no longer be alone. She has 9 brothers and sisters in the region; maybe they’ve all forgotten her?
Visit of Thursday 13 July 2000
Mum no longer recognises me. Of course, this is not new. What is new, however, is her way of rejecting either me or dad, and this happens more and more. For example, when dad is with her, she will refuse to hold my hand if I approach her too quickly. I first have to present myself in front of her if I want to make contact. We shouldn’t let this behaviour affect us; however, the fear in her eyes and the way she treats us as total strangers make us feel uncomfortable. At other times, she thinks I’m Roger and will reject dad’s presence. ‘Roger’ is the only name that she uses with frequency. Perhaps she confuses us so often because my voice is so similar to dad’s. – Despite the never-ending bad weather, we managed to go outside, only for a short while though, because Mum finds it difficult to move around. Mum seemed very weak and her legs unsteady so we preferred to take her back to her room in a wheelchair. – Currently, Mum is receiving eye drops. A healthcare assistant administered them, and displayed a great deal of dexterity and firmness in doing so. Mum had reacted violently when the assistant approached her. The assistant’s manner and her precise and rapid movements ensured that my Mum received her eye drops. We would not have been able to achieve the same result, we would have given up when Mum started protesting. At times like this, it become apparent that, despite her illness, Mum is very sensitive to physical contact. The assistant’s action was not familiar to her, so it was natural that she would react as she did. I think that we aren’t capable of performing these apparently straightforward actions. – I am not saying this to justify the placement of ill people into care, but rather to help people understand that there comes a point in the course of the illness where we have to let healthcare professionals take over. Although Mum could have difficulty expressing any pain she felt, we are virtually certain that she is not suffering physically, and isn’t that the most important thing today?
Visit of Thursday 10 August 2000
The weather was wonderful today; I had to wait a long time to be able to visit Mum without the rain! – It’s obvious that Mum has got thinner, but when I asked the staff, they told me that she was eating properly. – Dad and I were overjoyed at the good weather and the possibility of enjoying it with Mum. Just to be on the safe side, we decided to use the wheelchair. Our journey was over very quickly. We went pass the retirement home, ‘The Champagne Hamlet’, which is connected to the hospital by corridors. We had some refreshments, it was not easy to make Mum have a drink. We then returned outside, in the gardens, and as we passed a section with some particularly beautiful flowers, we hoped, for a short while, that Mum would ask us to stop in order to contemplate the roses around her. However, it was not to be, even though, just a few months ago, she used to look after the plants and flowers at her home in Vincennes. – A few moments later, it seemed that the heat was beginning to get to her, so we decided to return. – Mum really does need to be looked after all the time. She likes it when someone holds her hand to walk with her around the ward. But we don’t know where she wants to go. Yet there is no doubt that she needs to walk. This is why it’s so dangerous to let her go for a walk unaided and unsupervised, she’d end up escaping or falling. – Every now and then, Mum says something that touches us, for example, when she says to dad, ‘You’re such a handsome man!’, or ‘I love you, darling!’ – Mum became very agitated at one point, so, again, in what had become an unwanted ritual, we attached her to the armchair in her room. On leaving, we told Mum that we were going to do some shopping and that we would return quickly. These days, however, lying is of little use; Mum hardly reacts when we say goodbye to her. We left the hospital with heavy hearts and outside, it was sweltering and as sunny as when we arrived. However, what had seemed such a boon now seemed insignificant. Today was what might be called a ‘fine summer’s day’.
Visit of Saturday 30 September 2000
Today it was cold and it rained. (If I mention the weather in every commentary, it’s because the weather determines whether we will be able to take Mum outside or not. She is stuck inside most of the time, and it is only dad’s regular visits that enable her to get some fresh air.) – In the space of a few weeks, Mum has changed. She has deteriorated to such an extent that I no longer take any photos of her. I cannot believe how much her body has shrivelled up. Her cheeks are becoming more and more hollow: Mum used to be very careful about her appearance and she would have been shocked to be seen like this. I now understand why ill people are hidden away. I am talking about public figures, such as Ronald Reagan, who had Alzheimer’s disease and who was never seen in the media; also, have there ever been any photos of Rita Haywarth towards the end of her life? I was always against this idea, but in my particular case, I respect Mum too much to take a photograph of her as she is. It would be indecent. – We noticed that Mum has broken three teeth. Dad arranged for her to be seen by a dentist next week. This is a real issue, considering that it is difficult just to brush her teeth. A general anaesthetic could also be dangerous. But, there’s no two ways about it, we will have to take out these three teeth, which otherwise are likely to cause an injury in her mouth. – Before, dad and I would feel sorry for Mum when we had to resort to using the wheelchair to take her outside. Now, we have no choice. We’d tried to help her to walk around the ward, but this requires a lot of attention and patience, we had to accompany her on both sides, placing our arms under her armpits to enable her to walk. These walks never lasted long. – Sometimes, she asks for Roger but not as explicitly as before. She is still agitated, and quite often she starts talking and, even if we can’t understand her, we try to reply to her calmly. – Today, it was particularly distressing to see Mum in this state. It’s hard to accept reality, even if the disease is gaining ground and all we can do is watch, powerless to do anything. They call this the ‘course’ of the disease…
Visit of Thursday 9 November 2000
It was cold but sunny today. When I arrived, dad was standing in the corridor talking to the care staff, and he had trouble making Mum keep still at the same time. After a few minutes, Mum started touching her teeth with her fingers, then, she said something we didn’t understand, though she seemed to be complaining. She didn’t reply to our question, ‘Mum, do your teeth hurt?’ It is obvious that her teeth, which are slowly deteriorating, must be causing her pain. The doctor and dentist put their heads together to try to find a way to help Mum. One suggested removing all of her teeth, but the other was against this idea, a general anaesthetic would only make things worse. Also, removing her teeth would make her feel even more powerless, dad was consulted on this and his wishes were respected. For the time being, Mum receives a local treatment by the application of an antiseptic, with the aid of a gauze. – Again, it was difficult, on this particular day, to take Mum for a walk in the corridors; it’s easier when there’s two people to do this, if there’s one of us, we have to take Mum’s arm and remain alert, because she loses her balance very easily and risks falling down. Ever though it’s tiring, dad and I really make an effort to take Mum for a walk without the chair, because we know that some day she won’t be able to walk and that’s when we’ll miss these days. – Mum had an appointment with the hairdresser in the afternoon, so we went together. The salon is in ‘The Champagne Hamlet’. The first time I accompanied Mum to the hairdresser was shortly after she’d been admitted, she had been extremely agitated because she thought that she had seen her mother’s face in the mirror: everything was fine today, I have to say that the hairdresser has the patience of a saint, I suppose that she has gained a lot of experience of these situations. In the end, Mum was very good and in a few minutes she had a new haircut. – Next, we returned to the ward. – Dad told me that a clothes sale will take place at the hospital on 7 December. I will definitely come on that day, it will be a perfect opportunity to replace her cardigans and trousers, which look quite worn out after so many washes. Besides, we feel a bit bad seeing her wearing a ward dressing gown. – Before leaving, I looked at Mum one last time. She was attached to her chair, staring into space. I would have liked to be able to say bye to her normally and for her to reply in the same manner.
Visit of Thursday 7 December 2000
A clothes sale for the residents took place today in the Long-Term Care Ward. It was important to make the most of this opportunity to buy some clothes, especially because dad couldn’t make it today. My visit was essential. – The sale took place in the dining room, which had been completely transformed for the occasion. When I arrived at the hospital, I first went to Mum in her room, she was in her chair. I kissed her and said hello, then released her from her chair by removing the sheet . We then went to the dining room. It was difficult to choose from all the items on display. I was looking for garments that were good value but would also resist washing and be comfortable for Mum. In the end, I bought three pairs of trousers. There were lots of cardigans but none were suitable. The problem was that I wanted to find sweater fabric with stud buttons rather than normal buttons, which Mum always ends up tearing off. Ideally, Mum would have been able to try on the items I chose, but, obviously, this was not allowed. Indeed, I had to attach her to a chair because she was agitated, she probably sensed that there were more people than normal. – We went outside, despite the rain. I made sure to cover her so that she wouldn’t catch a cold. I used her wheelchair to transport her this time. We headed for ‘The Champagne Hamlet’, where I tried to make her sit down at a table. We didn’t speak but my presence seemed to have a calming effect on her. Several of the hospital staff stopped to speak to us. This really helps, it makes us feel less alone. They always know exactly what to say to Mum. – I am a bit worried because, for a while now, every time we give her a drink, she starts coughing repeatedly, the coughs becoming longer. I assume that her excitement is the cause yet this could become a problem if the liquid went down the wrong way. When I see her coughing like that, it’s as if she’s suffocating. I wondered what it would be like if Mum ever caught a cold or another infection. What state would she be in if she were bed-bound! – We returned to the ward, I walked with Mum for a while, going ‘round the block’ as usual. Her difficulties walking are becoming more and more obvious. – Again, I was shocked by the state of Mum’s teeth, which are steadily deteriorating. – After our walk, I placed Mum in her armchair in her room, and I said goodbye to her. Then in what seemed a moment of complete lucidity, she turned to me and said, ‘Goodbye, my love!’ I couldn’t hold back the tears, and I left the room without returning.
Visit of Thursday 18 January 2001
As before, today, Mum was in her chair when I arrived, imprisoned by the sheet that prevents her from getting up. – Dad and I tried to help her to get up, but she couldn’t stand up straight. We were not able to take her for a walk because she was very weak and very agitated in turn. – She was obviously tired, so we had preferred to give up. – We therefore stayed in her room the whole afternoon. Me and dad talked but she reacted only rarely, by addressing us a stream of gibberish. – Her teeth continue to worsen but nothing is planned because of the reasons I’d outlined earlier. – Mum is no longer eating properly; to avoid her swallowing the wrong way, she is fed spoonfuls of a special gel with a high water content, this prevents her from becoming dehydrated. – Mum’s physical condition is getting worse, the disease is following its course, we know this, we can’t blame the staff for negligence, they are exemplary. – As the weeks go by, I follow her state of health. It breaks my heart to see her decline. As long as she is not suffering… but how do we know for sure?
Visit of Monday 26 March 2001
It’s Mum’s birthday today; she’s 70 years old. It’s also her second birthday in the hospital. – I gave her a small present, a bouquet of flowers in the shape of a heart in their vase. Our walk didn’t last very long because Mum seemed weak and tired. – Ginette, one of her sisters, visited with a friends of hers. The four of us stayed in the room with Mum and talked. - Her speech is still unintelligible, every so often she begins talking very loudly and strangling herself for no apparent reason. We try to calm her down, and she becomes quiet again, as if nothing had happened. – The main thing about this visit was what dad told me about Mum’s health. A few days ago, the staff noticed that Mum’s stools were particularly foul-smelling and a worrying colour. As a precautionary measure, echography was carried out in her intestinal region. The procedure was very difficult to perform because Mum was very agitated. However, nothing abnormal was detected. A scan would provide a more definitive answer, however it is out of the question for Mum, because she cannot remain still or co-operate. Her stools have returned to normal; however dad and I cannot help but imagine the worst. The fact is that in July 1998, Mum underwent a major operation to remove a malign cancer in her anus. The operation went without a hitch and no metastases were detected in the region. What if this cancer had progressed? It was still too early to say. At the time, dad had the huge responsibility of deciding whether an artificial anus and bag be placed. Luckily, dad made the right decision because Mum would otherwise have been even weaker. – Quite apart from Alzheimer’s disease, it is also distressing not being able to perform certain medical investigations on Mum. Not only must we watch her slowly deteriorate, but we have to hope that she doesn’t develop another disease, that the tumour does not reappear in other places. – Mum has lost a lot of weight, her legs have become very thin, her teeth are still in a pitiful state. – I would have wanted some happier news for her birthday, but we have to face the facts. Something tells me however that Mum can detect our presence. When dad says, ‘Mireille!’, she turns to look at him. Isn’t this a sign that the love she had for us has not completely vanished?
Visit of Saturday 2 June 2001
Today, I arrived at the same time as dad. Mum is now attached to her chair permanently. – Dad had warned me that Mum’s condition had deteriorated recently, but I hadn’t expected such a change. She has become a lot more thinner, yet she is eating properly according to the staff. When I say ‘properly’, I don’t mean that she is feeding herself but that she accepts most food that is offered to her. To look at her, you would think that she doesn’t eat anything, the size of her thighs is almost beyond belief. – The gastrointestinal problems of March are now almost over. – Mum keeps lifting up the bottom of her trouser leg, exposing her bare legs, which are no longer shaven. – Mum can hardly stand up any more, nevertheless we force her to walk regularly, mainly to stop her leg muscles from wasting. – We tried, in vain, to communicate with Mum using speech. Despite the condition of her teeth, she is able to articulate properly. Her speech remains unintelligible but she hasn’t yet lost her voice. It will be extremely difficult for me when Mum loses her voice. – Mum has lost awareness of her surroundings, and, it seems, a whole lifetime, she now appears to exist; however, it would be wrong to think that she has lost her feelings. I am sure she notices our presence when, for example, we hold her hand or stand in front of her. And, when people around us start talking or laughing loudly, her behaviour changes, or if we hold her hand too tightly, she pulls hers away. – This visit was very hard for me, because of Mum’s worsening health. Both dad and I are aware of this. – Before leaving, I turned around to have one last look at Mum, and she was the same as when I arrived, alone, staring into space, a prisoner of her mind, in which memories of her husband, her son and all that is dear to her, are vanishing.
Visit of Thursday 2 and Friday 3 August 2001
Mum’s physical condition is now atrocious. It is impossible to go outside with her, she is attached to her chair, permanently, like a prisoner. In any case, she wouldn’t be able to stand up, we tried a few weeks ago, but her legs were too weak to hold up her weight. – It was sunny over these two days, but we had no choice but to stay with her, even though she didn’t really react to what we were saying. Just a few weeks ago, we could take Mum out in her wheelchair, and this provided a change of scenery. On some occasions, when we went pass ‘The Champagne Hamlet’, which houses a retirement home, we could come across people who knew Mum from when she lived in Marne. They would talk about their memories, but Mum would not be listening. We would also come across other people who were amazed at how quickly the disease had progressed. – It seemed to us that Mum would try to take part in our conversations, but without being able to… Patients usually lose the faculty of speech at this stage of the disease. In Mum’s case, she can speak but what she says makes no sense, this is not only due to the state of her teeth, but to the disease itself. Mum is thus very talkative, as if she was trying to say something. Maybe she was trying to tell us of her pain and distress? I would like to be able to talk with her as before at least once. Leaving is just as hard as arriving, no hello or bye from her. It breaks my heart.
Last visit on Saturday 8 September 2001
I made a point of visiting Mum today because it was my birthday. This was in fact the first thing I said when I entered her room, ‘Hello Mum! It’s my birthday today!’ She didn’t react very much to my announcement, yet she seemed happy to see me and dad, and she even smiled for us. At one point, I asked her, ‘Mum, are you OK today?’, and she instantly replied, ‘No!’. I looked at dad in amazement, she had at last managed to provide a straight answer to our questions. I tried to find out more, to know what exactly was wrong, but the conversation drifted and her words had once again lost all meaning. – We stayed close to her, I talked with dad about this and that, we hardly see each other because of the distance. – When I left her that day, even though we were prepared, it never occurred to me that this would be the last time that I would see my Mum’s blue eyes… She passed away on 26 September 2001, following a pulmonary embolism. She had spent three years in the Long-Term Care Ward, and the staff had been truly wonderful. I think of the memories at Vincennes, and within the three specialised services that had cared for Mum. What more could we have done? Since her death, I often pray in front of her grave, and I think that Mum is watching us, and I hope that she is not judging us too much and that she has become a beautiful angel.
Here is the weather of today in 'Marne - France'
( from : www.meteo2.com )