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Interview 13

Age at interview: 54
Brief Outline: Her mother developed Lewy Body Dementia while living alone in Paris. After many crises her mother has accepted that she cannot return to her flat and that she move to England to live with her daughter. Treated with Exelon then Aricept.
Background: Carer is a married daughter who looks after her divorced mother. She is a healthcare assistant with 2 children. Her mother, a retired dressmaker was a diagnosed in 2000.

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Daughter wonders if her mothers slight improvement on Aricept was due to the drug or to no longer living on her own.

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Daughter wonders if her mothers slight improvement on Aricept was due to the drug or to no longer living on her own.

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She had prescribed Exelon, a medication for Alzheimer's. The GP said that he would arrange for a psychiatric nurse to give my mother her medication. I was not sure how well this will go with my mother but we will see. My mother looked happy for the first time, she asked me if I could stay a few more days, I couldn't. Soon we were getting back to crisis point. The neurologist changed her medication from Exelon to Aricept. 

But she was much better after the three months she'd been with us, she was a lot better, the medication, the Aricept, was actually helping her to recover her abilities and of course the fact that she didn't have any, she had stress in one way but she didn't have any worries in the sense of looking after herself,so that helped as well too.

 

Had to organise emergency care for her mother who lived in Paris.

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Had to organise emergency care for her mother who lived in Paris.

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The police had taken her to the A&E where she was assessed. I called the A&E. My first encounter with a French hospital was rather a negative one, to put it mildly. After being transferred from department to department and a few mix-ups later I finally spoke to the person who had looked after my mother that morning. 

She said 'Your mother has been discharged and sent home earlier on. 'I was furious 'Are you telling me you discharged my mother, you discharged an 84 year old woman living on their own, who arrived to you disorientated?' 'She was orientated by the time she left.' I was told. 'What about her physical state, was she dehydrated, well nourished or emaciated?' Silence, nobody seemed to have thought about that. I hung up. I needed to think, I was in a state of extreme anxiety. It was late afternoon by then.

I rang my mother, no reply, thoughts were rushing through my mind, did she make it home, if she did has she fainted from exhaustion or fallen down or was not able to reach the phone. I really didn't know. 

Eventually I managed to get hold of a neighbour's telephone number, I didn't know her very well, I had only met her near the lift and in the street a couple of times when I was going out shopping with my mother, who introduced me to her. I knew my mother liked her and that's very important. I was quite embarrassed to say the least but what else could I do, it was the only alternative to calling the police. 

I explained the situation, she was very nice and understanding, she said she would go and knock at my mother's door to see if she was there. She also confirmed that my mother looked very thin and confused and everyone was worried, i.e., the other neighbours and the concierge, but did not know how to contact me.  

If they had shown any concern my mother would say she was 'OK just a bit tired'. Some time later, which seemed like an eternity, the phone went, it was the neighbour with my mother, she told me my mother had answered when she had knocked at the door but was unable to open the locks. She had to guide her step by step and finally she managed to open it. then. She also found the two telephones were unplugged, no wonder there had been no answer when I rang; it rang on my side but not at my mother's end of course.

I spoke to my mother at last, tried to reassure her and said I was coming as quickly as I could. Next day I phoned my mother's GP and made an appointment with him and asked him to visit my mother. I also said that I was coming and would take her back with me to London, he agreed, it was the best thing to do at the time.

 

Describes how she was able to care for her mother who was in Paris through frequent telephone calls.

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Describes how she was able to care for her mother who was in Paris through frequent telephone calls.

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On my last day in Paris, it was like the old days, we had special food and talked and laughed a great deal. Next day I left for London after telling my mother not to worry, we will keep regularly in touch by phone, she seemed quite confident. I wished I felt the same but I tried to put a brave face on. Deep down I knew it was only a question of time before I had to come again. 

But this time I had the telephone number of all the neighbours, the concierge, the doctors, neurologist, social workers, etc. If things went wrong not only I will know quickly I could also get in touch with the right person or vice versa. I also made notes of important information especially for administration purposes. French bureaucracy is notorious for being demanding and very slow.

For the next two months I literally spent hours on the telephone with my mother daily, in fact it was like caring at a distance, she would phone me more often, either it was complaining about the home help or she needed to ask me where such and such papers were. Or guiding her step by step on how to use the mixer or other appliances, basically it was a question of reassurance and practical help. I would phone her to remind her of an appointment or what happened when she had seen the neurologist or her GP, find out the date of the next appointment, if I didn't she will forget. In fact I was acting as a secretary as well.

 

Describes her distress at not being able to persuade her mother to come and live with her.

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Describes her distress at not being able to persuade her mother to come and live with her.

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The whole household was upset, they could see that I didn't know what to do, they also realised that I couldn't take her back, that it was a question of time before something happens to her. On the other hand I could not keep her here, I felt like a kidnapper, I mean for three months I really felt I'd kidnapped her. She wouldn't stay.

The tension was really getting bad, I tried to calm her down, I tried to talk to her, I tried all sorts of things but nothing worked.  Eventually I was working myself in a state and that was not good for her or for me or for anyone else. What was I to do, I cried many times completely at a loose end. How could I take my mother back home, I knew it will start all over again, I could not cope with the idea of her being in danger. I felt it was criminal, knowing the situation, to take her back. How many times was I supposed to help her out of a crisis only to start again a few months later?

We had to move forward. On the other hand I could not really keep her under the circumstances. I truly felt as if I had kidnapped her. She had to be co-operative for me to be able to help her otherwise I was not caring for her in a positive way. I was only keeping her out of trouble. 

What I wanted was for her to have a quality of life, to be able, not to worry about eating or cooking or doing her paperwork, or doing her shopping, that all this could be taken care of. And she could concentrate basically on the things she could still do and I could help her to regain some memory with talking, with pictures, but she also had to help me with that. If she was opposing everything I was doing or saying I couldn't do anything. At the same time she was completely refusing to accept or she couldn't, probably she couldn't accept that she needed help.

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