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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, May 2015 - April 2016 (2 stories)

Story 1. Received: May 20, 2015

My mother was 87 yrs when she became ill in May of 2014. First she fell out of bed, and couldn't get up, neither could she remember what happened, she was extremely distressed. Up till this incident, my mother had been living alone, and basically looking after her own home, and had been catching the bus to the local towns, albeit I live across the road from her and my sister lived next door. But basically an independent life.

After this incident of her falling, we think from the bed, we decided to stay overnight with her. There are four siblings, and fortunately we all live in the local area. The first two weeks or so, one or another stayed the night. At this point she was still dressing herself. Next thing she rang my sister, after I had stayed the night but gone to work in the morning. She was very, very distressed, and very disorientated, and couldn't dress herself, my sister went to attend to her.

After this I stayed with her for a week, 24 hours, thinking this may make her feel less disorientated. Now we started to go into unknown territory: she would not sleep at night (well, not more than an hour or so), insisted on getting out of bed each time, we had to get her downstairs, at the same time we noticed she was becoming less balanced, we were up and down all night long; she was also starting to hallucinate, but categorically refused to see a doctor, or any other medical person.

Eventually I and my sister insisted she see the GP, who made a home visit. My mother played holy hell with us. The GP did a home visit, he seemed to think she had had some TIA's (small strokes to her brain).

By the weekend things were still deteriorating further, more bizarre behaviour. Finally we persuaded her to come to A+E, the consultant spoke to her, and then told us she had Not Suffered TIA's, but had Vascular Dementia, and asked if she could stay in and a brain scan could be done. She was absolutely distraught at this, so we arranged to take her back for the scan, and took her home, for yet another sleepless night.

Things now started to become far worse, hallucinations became very frightening to her, we were back in the war, she was seeing things that were frightening her. The upshot was we paid several more visits to A+E, explained this behaviour, we got no real help from anyone. She was now supposedly under a psychiatrist's care, again can't say they helped, in fact to be honest we couldn't get any real sense of what was happening from the doctors.

This state of affairs went on for 8 weeks, whilst the four of us carried on with the 24/7 care. Mum would not sleep properly at night, so therefore we didn't, at the same time her ankles were becoming very swollen, and her behaviour was increasingly bizarre. Also her mobility was decreasing alarmingly, she could not now get in and out of bed on her own.

June 26th dawned and several things happened this day, but the worst was Mum got out through the door, just wearing her nightie and dressing gown. My sister saw at the last minute what she was doing, but now my sister had become her kidnapper, she was screaming for someone to get the police. This was now a full psychotic episode. As it was, the District nurse was calling that morning for her first visit. She came in and immediately saw what was happening, and that we were completely out of our depth; she took over, got onto all the medical people. By evening Mum was in hospital, getting some help, and from here she was given psychiatric help, as she couldn't separate her dreams from her reality.

Crucially she had still not been diagnosed, although she was still being treated. One consultant said it was Vascular, another said it wasn't. We couldn't seem to get any consensus of opinion, and certainly LBD was never mentioned.

We were lucky and she was finally sent to a rehabilitation unit. Prior to actually entering hospital, I had seen her drag/catch one of her feet. This should have been a sign to the doctors to test for Parkinson's!! In the end, one of the more alert nursing staff brought it to my attention. We were now in August, so at this I booked a private appointment with a private neurologist. We were with him an hour, and much to our shock, he told us it was Lewy Bodies Dementia, and this was very aggressive with her, there was no cure, but we could between us make her as comfortable as possible.

As I write this my mother is in a Dementia unit, a very nice one. She has deteriorated much further, she cannot walk, needs help with all her bodily functions, but can still feed herself, just. Her mind is completely damaged, and although medication helps with some of the worst effect, she still sees animals, mostly rats and mice around her feet, and people who aren't there (well, not as far as we can see). Also her mind can be different day to day, or even hour to hour. We find it, as her children, most difficult when she gets aggressive or nasty towards us, usually cos she is frightened or tired.

I tell this story of our Mum, so that anyone experiencing this with their family gets a correct diagnosis. At least, then, medication can help with some of the worst parts of this terrible disease.

Regards, ST

Story 2. Received: April 28, 2016

I've just come across your journal and thought I'd like to share my experiences so far as a care giver to my husband.

I first noticed a change in my husband's behaviour in 2012/13 (he was 63). He had just retired and needed a hip operation. When he first returned home, he seemed very confused as if the drugs were still inside him and still causing problems, but this gradually improved and I thought no more about it. However, as time passed, he became more withdrawn and very vacant looking. It was like the 'lights were on' but nobody was home.

In September 2014, we had a holiday in Italy to see some friends. They immediately noticed that he had lost his sparkle and wondered if he was depressed. I was beginning to notice that his memory seemed less sharp, but put this down to age. Also the first signs of a very slight tremor started to appear, especially when cold.

In July 2015, he had his first (to my knowledge) hallucination. I immediately booked an appointment with our GP, who referred him to a memory clinic. After a complete assessment, LBD with Parkinson's was diagnosed. However, the consultant wanted a second opinion, and arranged for a Professor from Cambridge Uni, who specialised in this field, to confirm his findings. He said my husband ticked every box for the disease. So he is now on medication. Unfortunately it has not improved his condition, even though I know there is no cure.

It is now April 2016. He gets very agitated outside the home. He hallucinates daily. Can no longer organise and plan things easily. He has great difficulty in using his hands to do simple tasks such as doing his belt or buttons up. He was a builder, but now cannot even wire a plug. He has come to terms with the 'visitors in his bed' at night, and sleeps with the lights on as this makes him feel safer. His slight tremors are more frequent. His ability to form sentences, especially first thing in the morning and early evening have declined. He easily loses the thread of his train of thought.

This condition is very much minute by minute, hour by hour, day by day. It's a real roller coaster. Some days he seems fine, the next he is very confused and I have to repeat everything to him. I know we are only in the mid stages of this condition, and reading other people's blogs scares me what the future will hold for us both. It's now one day at a time.

These are just bullet points that may help someone who has just been diagnosed.


Stories, July - November 2016
Stories, March 2015
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