Lewy Body dementia and seeing things

 As a person with a form of Lewy Body Dementia, I often see things which may or may not be there, and this can be very hard to understand let alone explain.

Sometimes when I am at home I see huge spiders, running across the floor, at first this was upsetting, and I would lash out with a shoe or slipper, but my coordination is not that brilliant, so I had to stop before I did some damage to the television or something else.

When this started we had a dog which used to lie near my feet, so I learnt to tell if they were real or not, because if he saw a spider he would chase it, But my wife told me that if he did not move, then they were not real.

That was fine until he passed away then it was left to me to decide. These days my wife tells me if there is something there or not, because she watches me looking at something and asks what is wrong.

However life can be difficult at times trying to work out whether something is real, or if my brain is playing tricks with me.

Even outside I have to look more than once to see if something is real, and this can be hard when people are watching me to see what is going on.

The brain is a very complicated thing, when I hear about it, because I never realised that it controls what we see, hear, and smell etc, and this causes problems when I get my eyesight tested.

This is because my eyesight seems to change so much, and where I thought it was just my eyes playing up, I now understand it’s the brain getting the wrong signals, if I got this right.

This also causes other problems these days, because if I an at home and see a bird flying past our windows I tend to duck. These are mainly reflections in the glazed doors inside the house, which make me feel as if the bird is actually inside the house and flying towards me.

Recently this has got worse outside if a bird flys over my head, I still duck because it feels closer than it is in real life.

Dentists and Dementia

Dental treatment in dementia

Recently I got involved in research into what dental treatment people  want after a diagnosis of dementia, something I confess I had never considered 

Over the years I have had some terrible treatment from dentists, and ended up having teeth removed rather than having fillings, after which I completely lost faith in all dentists, as did my daughter who had the same problems.

However over the last few years I have had a couple of very good dentists, one of whom moved away, then our dentists practice closed down after the owner had a serious accident and broke his neck

It seems that a lot of dentists, seem to think that we are not worth bothering with, and that is very sad, because we should be able to choose what treatment we want or need, rather than some other person telling us what would be best for us

Before the lock down I was lucky to find a new brilliant dentist who really seems to care, and explains his  treatment at every step, something I have never had before.

My medical history and medications are all listed in his computer screen, which he always checks before the treatment starts.

This dentist looks at any possible problems, and then discusses possible solutions and costs face to face, while saying what he feels may be the best treatment because of my medical history which is logged down.

So just how do we decide what is best for us if we have a form of dementia. It’s my own personal view that we need to just get things done to make us comfortable.

Some people are needle phobic, and some like me struggle when people get close up, in front of my face.

I confess that I don’t want expensive treatment, and never have done, and this is always taken on board.

Recently I had to have a tooth removed as the fillings kept coming out, even though different types of fillings were tried.

As there was little left of the tooth due to bad treatment in the past it was decided to remove the tooth before it was too late.

During this process the dentist kept stopping to see if I needed a break and to see if I was alright, something I had never come across ever before. 

This is what I call real dental treatment to suit the person living with this illness, not a dentist who is out to get as much money out of us as possible 

Some have even tried to get me to have expensive crowns, when I simply don’t want them 

I believe that dentists should ask a patient for their thoughts before going ahead with expensive treatment.

 Ask rather than assume you know best 

Do researchers understand Lewy Body Nightmares

 I got involved with research into sleep problems in dementia recently,  thinking that it may involve Lewy body dementia too.

However it soon became clear that those asking the questions had no idea about what they were dealing with, and it seemed as if the whole process was set up for those in the later stages of Dementia.

Yet in Lewy body Dementia you are dealing with a different life style as far as sleep patterns go, and a lot of people simply don’t understand this. A few years ago Peter Ashley an old friend and myself, who at the time were both Ambassadors with the Alzheimer’s Society helped to write a booklet about Lewy Body Dementia, and this included the graphic nightmares etc. This was before the Lewy Body Society had got off the ground, or at least I had not heard about it, and it was only later on that Peter told me about it. 

After the first publication was released, it was then scrapped by a new editor, who thought it was too graphic and would frighten people, needless to say both Peter and I lost interest, because it was obvious that this person knew nothing about the horrors of this illness. So in future editions the nightmares were removed from the booklet, yet this left many wondering why.

Yet as many people have said, these graphic nightmares are all part of the nightly horrors many people living with this illness have to put up with. 

These can be horrific when they start, and sometimes very hard to break free from. While these are going on it’s possible that the person going through the horror can lash out and cause a lot of damage, as I found to my horror over time. I demolished two bedside lamps along with other things.

It’s worth pointing out that our loved ones can be hurt if they get too close when trying to walk us up, as my wife found out one night, and she ended up with a black eye, something which I found very distressing the next morning.  

While doing this research it was obvious that they wanted me to change my sleep patterns, which included going to bed earlier, but as I always wake up at 6-30: each morning I did not see the sense, and another idea was to go to bed much later, but as my wife pointed out I still get up at the same time, so that means less sleep.

It was pointed out that some days I drop off to sleep straight after lunch for an hour or so, and nothing wakes me up, not even a telephone ringing next to me chair. I have no control over this yet they said it was bad to sleep during the day. But I have no control over this it just happens and can be embarrassing if we have visitors in the house.