Karen complains of a bad back. We see a doctor and begin consultations with a chiropractor. Karen constantly feels down and we talk of putting off another IVF attempt until she feels better. Kal begins taking antidepressants but didn't want to take them over the Christmas period because of the side effects.

January 2000

Karen continues to complain of her bad back and is very distressed by it. She works for only three days this month. She constantly phones me at work because she feels so down, alone and anxious. I get a phone call to say she has collapsed, rush home and call out the doctor; he gets her admitted to the Princess of Wales hospital at Bridgend. They carry out various tests on her to no avail and she is discharged but must return for further tests. She has a CAT scan whilst in hospital but nothing is found.

We arrange for Karen to see a counsellor, as she continues to feel down and that everyone is against her. The talks help at first but then the panic attacks begin to take over.

February

Karen's depression continues. We are constantly visiting the doctors and Karen talks to her counsellor. Unfortunately there is no improvement, Kal is taking antidepressants but they don't suit her and she suffers from side effects. The doctor changes the medication and tries to find a drug that suits her.

The panic attacks and anxiety get worse and life between us begins to get fractious. Kal continues with her visits to try to ease her back pain.

March

The confusion starts to become really bad. Kal is up and down to the loo all night and gets lost returning to the bedroom, and it's only next door. She tries to get into bed either via the wardrobe or by trying to climb through the wall. Life is very stressful and Karen's mum moves in with us to help me look after her.

I begin to sleep in the spare room as Kal keeps me up all night and I have to get up at 6.30am to get ready for work. We find that the osteopath is not helping Kal's back; we seek help for Kal from someone who specialises in Chinese medicine, at the Centre for Natural Medicine in Cardiff. He finds it difficult to treat her, as he has to fight with the effects of the anti-depressants that Kal is taking.

April

The confusion is at its worst. Karen has started to lose her sense of balance and cannot walk unaided. The antidepressants aren't working and the doctor prescribes another one: it must be the fourth or fifth we have tried. Reading the literature that is supplied with the dopethin, one of the side effects is confusion. I ask the doctor about this and I am reassured that this will wear off as the body adjusts itself to the medication. It doesn't and Kal is readmitted to the psychiatric unit at the Princess of Wales Hospital just before Easter. Karen's mum and I are asking for help trying to cope with Kal but to no avail; we so desperately need help and no one is listening.

Kal spends four days in hospital and is assessed in a 60-minute interview with the psychiatric team. I am not impressed as they (I'm informed) did not consult the nursing staff about Kal. She is discharged and the team inform me that Kal's problem is behavioural and not psychiatric. I ask for help yet again but no one listens to me. Kal is showing signs of loss of balance and cannot walk unaided and I have to help her walk from the interview room.

A social worker visits Kal whilst she is in hospital and talks to her mum. She informs her that she was really disappointed with Kal as she was not making any sense when she interviewed. I'm livid and cannot believe that the social worker could be so insensitive to Kal and our needs.

We have no further contact from her and are left to cope on our own again. At home I have to remove fuses from electrical appliances and hide all medication from Kal as she is not capable of looking after herself any more. She has left the hairdryer running and placed it on the carpet, switched electric blankets on for no reason and once, when left for five minutes, was found by a neighbour wandering around the village.

May

This is as bad as it gets. Karen is really bad, the confusion is dreadful, the bad back continues and we are all very stressed. We have to feed Karen, shower her and help her in everything she does. She is hypersensitive to touch and finds any form of contact painful. She can hardly walk and we feel that she is aware that there is something seriously wrong with her. We constantly try to reassure her, that we will find out what is wrong and that she will get better.

We are still trying to cope on our own but now we are receiving disability living allowance and sick pay; this helps a bit. Money is starting to become very tight. I'm helping Kal's mum with her travelling expenses, as she is a pensioner. I sold my sports car earlier in the year and that money is keeping our heads above water; we can probably last until Christmas, and then we will have to sell the house. I just hope that nothing happens at work so that I lose my job.

Karen's mum is finding it extremely difficult trying to cope as Kal is just too much for her to handle. I know I find it difficult enough and feel so guilty going off to work and leaving Kal's mum to look after her. She has had a rough time over the past few years. Firstly her husband died unexpectedly, and then she had breast cancer followed by hepatitis. I worry about her being poorly again and the cancer reappearing.

Karen is very ill and the confusion manifests itself in many different ways. She is convinced we have Australians staying with us and keeps looking for them, making them cups of tea and trying to get meals ready for them. It is very distressing seeing her struggle to make several cups of tea, some of which turn out to be cold water, others just have a teabag in, and still others are empty.

Some days she asks me to take her home as she doesn't like being in Australia, and talks about the baby we spent so long trying for. I spend hours on end trying to explain to Kal that we live in a bungalow and do not have an upstairs. I show her the loft to prove we do not have an upstairs and she becomes very upset.

Karen has become very aggressive to both her mum and myself; she has attacked me on several occasions. She hallucinates constantly and talks to her father who, as far as she is concerned, is here in the house with us.

When I take her out in the car she gets very anxious and tries several times to climb out when travelling at 70mph. She says to me that she knows that there is something seriously wrong and that she is dying. I tell her that we will make her well again soon.

I don't know what to do. I find myself quietly crying in bed, scared I will wake Kal's mum, worrying her unnecessarily. The final straw comes one Sunday morning after a particularly difficult weekend; Kal is convinced that I'm trying to murder her and desperately wants to know when and how. She is not concerned about dying but wants to know how I'm going to do it.

Our GP calls on Karen and arranges for her to go back into the psychiatric unit at Bridgend. When we arrive they are appalled at her deterioration. The staff and patients are really good with Kal and look out for her. We ask for a neurologist to look at Kal and a consultant from the University Hospital in Cardiff sees her. He wants her to have a MRI scan but as Kal is claustrophobic it's going to be difficult. Kal's bladder is not working properly and she has a catheter inserted to relieve the distress. We have still had no contact from social services.

We are told to expect a visit from the mobile scanner. We wait for two weeks, and they finally bring the mobile scanner down to her and try the scan with her under sedation but she becomes agitated and they have to abandon the attempt. The next step is to transfer Kal to the Heath Hospital and scan her whilst she is under general anaesthetic but we have to wait for a bed and a slot in the MRI scanners' schedule. It turns into another two-week wait.

When the scan is finally done it becomes obvious to the medical staff that Kal has a serious problem: the doctors inform me of their suspicions. I'm devastated but given a little bit of hope: they say they may be wrong.

A specialist team is called from Edinburgh and they visit a week later. In the meantime I've told them that I do not want Kal's mum to know of their fears as I do not want her worrying unnecessarily. The team from Edinburgh arrives: they are 99% certain that Kal is suffering from new-variant Creutzfeldt-Jakob disease and that we are in the final stages. The only way of being 100% certain is by brain biopsy or post mortem, but we don't want Kal to have a biopsy as she is under enough stress as it is. Kal's elder sister is with us and she helps me look after her mum.

The next day I travel to the Midlands to see my parents to give them the awful news, then I drive back down and go straight to the hospital to see Kal. She is lying on her bed, sees me and bursts into tears. In a lucid moment she asks me how am I coping. The next day, in another lucid moment, she tells me that she loves me too. It is the last thing she ever says to me; she begins to deteriorate rapidly.

She becomes blind, deaf and incontinent; she loses the ability to speak; all we can do now is to make her as comfortable as possible until the end. It comes all too quickly.

• Karen died on July 15. She was 37.