There are many different factors that can cause us additional stress within our illness even though at the time we might not think of it as being such a big problem like having some building or redecorating work done on our house, here is an example (some extracts) drawn from my dairy of last year when my wife decided that we should undertake some renovation to the house to make life easier for me but at the time caused me a lot of added confusion, its worth baring this in mind if your about to do any work on your own house and a member of the family has dementia.
During July and August 2008
Tuesday: today has been more confusing for me as I had to completely dismantle the computer for the decorators who are now painting 3 rooms at the same time despite having been told how it would affect me, they keep moving from room to room so I can't use the computer or watch the TV, I can't escape to the bedroom, the builders are still working in the kitchen so I went to sit in the garden, but I was again in the way! I start to feel a bit like a King on a chess board not knowing what way to move in case someone says checkmate,
Wednesday: I woke up very disorientated and couldn't see what the time was as the decorators had removed all the clocks in the house, I got up and fumbled around trying to find my clothes, when I got to the sitting room the only clock I could see was a small one I keep set at UK time!
The workers don't seem to be working in a logical way so we asked them if they could be more systematic, but they had the audacity to say 'they were confused' I told them Increase your confusion by 500% and you still won't come close to how all this is making me feel' but what really annoys me is having to clear up all the mess they leave behind them as they are working,
After lunch I was again asked to move as they wanted to start painting the ceiling in the bedroom, I said 'You haven't finished in the dining room yet' They replied, 'Oh, we come back to that later' trestles were being moved to and fro and then a discussion starts as to what colour the walls should be painted so I explained it again but they got all the colours wrong and I was getting more agitated and confused, then out of the blue like a lightning bolt that you don't see coming I just 'exploded' banging on the walls with my hands, shouting and becoming verbally aggressive at having to repeat over and over again what had to be done and shouting 'This is all too much for me!' and ended up walking off until I thought I had calmed down,
Sunday: Not a good start as I had just turned on the computer at 3 am and it completely crashed again making me very confused and agitated as to what I might have touched or done wrong, this is just adding to my confusions with the builders and decorators working around the house so I spent most of the day in the bedroom but even then I sat twitching as my hands didn't know what to do and my brain was working overtime thinking of all the different problems with the builders and now the computer, It was making me feel very depressed as I felt the world had crashed around my feet along with my brain.
Saturday: Yet again I woke up at 2am feeling very disorientated to time and place and sat on the edge of the bed thinking, 'Where am I and what am I doing here?' Slowly the reality woke up as I struggled to find my clothes and get dressed in the darkness and not disturb my wife and wandered into the sitting room to take pleasure in the peace and quiet of the early hours, but for some reason the rest of the family woke up then at 2.30 in the morning a relative who is helping with the building work started laying bricks and hammering at the floor, at the same time my wife is trying to talk to me but I can't comprehend what she is talking about as the words just seem to be passing through my head without registering, It's just all too much activity and far too early in the morning for my brain.
The day has continued with endless confusions and as I tried to work at the computer builders and decorators have been scurrying around me, the bricks, cement and paint seem to be flying everywhere so I go into the garden to be out of the way only to find that yet more trenches are being dug in the ground and I must be careful where I walk and just to make matters worse they have a radio blaring out loud to keep them happy as they work but for me it all adds up to yet more distortion and confusion into my day and brain,
Friday: I'm starting to get very confused and agitated this morning as there are so many things churning around in my head, the builders and decorators are still here and I know there is going to be a lot of disruption to my daily routines and panic is starting to get the better of me as I feel completely out of control of all the work that's got to be done, in the past I could be in control of any situation but now it goes beyond my logical thinking and planning,
Saturday: just 4 am, thank goodness I slept better last night apart from a nightmare again. Now my wife has got up as she must start cooking meals for the workmen as it's the custom here, so it's a lot of upheaval not just for me but also my wife as besides looking after me now she has to feed and try to control five workmen.
Sunday: Not good a day as the builders have been ripping the entire floor up in the kitchen to lay new tiles and put the plumbing in, the mess and noise from all the hammering was just too much for me and I couldn't concentrate on anything so ended up in the bedroom for most of the day, I keep telling myself the works got to be done as its all for my better benefit but the turmoil in my head is excruciating.
Now I desperately want to use the bathroom but can’t get to it because of the builders! I've often wondered if other people with dementia also have the same problem of when you need to go to the bathroom it becomes a matter of urgency and not something you can put on hold, which can also be a big problem when out shopping.
Then I decided to type but the words and sentences were lost in my brain as the noise was getting horrendous as the builders were using electric saws to cut the wall tiles, then the electrician said he had to turn off all the electric to put in the new cables, It seemed to be taking him ages to get the job done and I could see he looked puzzled so I asked 'What's the problem?' he scratched his head and said (I can't remember which wires go where!!) so we spent much of the day without electricity until he could sort it out.
Then one of the builders said he needed extra tiles so he had to go all the way into town to buy them when he eventually returned I asked him (where are the edging tiles) he said 'Oh, the shop forgot to give them to me!' I said, 'But you were buying the materials why didn't you check you had everything before you returned home?' His answer was, 'I forgot! Is it me or the builders as they seem to have forgotten more in one day than I normally do, so I question who has the problem with short term memory, In the end I was getting so exasperated and confused with their excuses of forgetfulness I decided to give up on the day and I was glad when it was time for bed.
Saturday: with all the work going on in the house over the past month it's made my wife, me realise even more just how much all the building work and disruptions to my normal daily routine had affected me, It might seem to some that it was only some simple rebuilding and decorating work but through the eyes and in the confused mind of a person with dementia it was as though my whole world had been turned topsy-turvy and if asked by any family that has a person with dementia living at home about undertaking rebuilding or even decorating work my advice would be to think carefully and plan well ahead to avoid what can be a very traumatic situation for someone who has dementia.
During July and August 2008
Tuesday: today has been more confusing for me as I had to completely dismantle the computer for the decorators who are now painting 3 rooms at the same time despite having been told how it would affect me, they keep moving from room to room so I can't use the computer or watch the TV, I can't escape to the bedroom, the builders are still working in the kitchen so I went to sit in the garden, but I was again in the way! I start to feel a bit like a King on a chess board not knowing what way to move in case someone says checkmate,
Wednesday: I woke up very disorientated and couldn't see what the time was as the decorators had removed all the clocks in the house, I got up and fumbled around trying to find my clothes, when I got to the sitting room the only clock I could see was a small one I keep set at UK time!
The workers don't seem to be working in a logical way so we asked them if they could be more systematic, but they had the audacity to say 'they were confused' I told them Increase your confusion by 500% and you still won't come close to how all this is making me feel' but what really annoys me is having to clear up all the mess they leave behind them as they are working,
After lunch I was again asked to move as they wanted to start painting the ceiling in the bedroom, I said 'You haven't finished in the dining room yet' They replied, 'Oh, we come back to that later' trestles were being moved to and fro and then a discussion starts as to what colour the walls should be painted so I explained it again but they got all the colours wrong and I was getting more agitated and confused, then out of the blue like a lightning bolt that you don't see coming I just 'exploded' banging on the walls with my hands, shouting and becoming verbally aggressive at having to repeat over and over again what had to be done and shouting 'This is all too much for me!' and ended up walking off until I thought I had calmed down,
Sunday: Not a good start as I had just turned on the computer at 3 am and it completely crashed again making me very confused and agitated as to what I might have touched or done wrong, this is just adding to my confusions with the builders and decorators working around the house so I spent most of the day in the bedroom but even then I sat twitching as my hands didn't know what to do and my brain was working overtime thinking of all the different problems with the builders and now the computer, It was making me feel very depressed as I felt the world had crashed around my feet along with my brain.
Saturday: Yet again I woke up at 2am feeling very disorientated to time and place and sat on the edge of the bed thinking, 'Where am I and what am I doing here?' Slowly the reality woke up as I struggled to find my clothes and get dressed in the darkness and not disturb my wife and wandered into the sitting room to take pleasure in the peace and quiet of the early hours, but for some reason the rest of the family woke up then at 2.30 in the morning a relative who is helping with the building work started laying bricks and hammering at the floor, at the same time my wife is trying to talk to me but I can't comprehend what she is talking about as the words just seem to be passing through my head without registering, It's just all too much activity and far too early in the morning for my brain.
The day has continued with endless confusions and as I tried to work at the computer builders and decorators have been scurrying around me, the bricks, cement and paint seem to be flying everywhere so I go into the garden to be out of the way only to find that yet more trenches are being dug in the ground and I must be careful where I walk and just to make matters worse they have a radio blaring out loud to keep them happy as they work but for me it all adds up to yet more distortion and confusion into my day and brain,
Friday: I'm starting to get very confused and agitated this morning as there are so many things churning around in my head, the builders and decorators are still here and I know there is going to be a lot of disruption to my daily routines and panic is starting to get the better of me as I feel completely out of control of all the work that's got to be done, in the past I could be in control of any situation but now it goes beyond my logical thinking and planning,
Saturday: just 4 am, thank goodness I slept better last night apart from a nightmare again. Now my wife has got up as she must start cooking meals for the workmen as it's the custom here, so it's a lot of upheaval not just for me but also my wife as besides looking after me now she has to feed and try to control five workmen.
Sunday: Not good a day as the builders have been ripping the entire floor up in the kitchen to lay new tiles and put the plumbing in, the mess and noise from all the hammering was just too much for me and I couldn't concentrate on anything so ended up in the bedroom for most of the day, I keep telling myself the works got to be done as its all for my better benefit but the turmoil in my head is excruciating.
Now I desperately want to use the bathroom but can’t get to it because of the builders! I've often wondered if other people with dementia also have the same problem of when you need to go to the bathroom it becomes a matter of urgency and not something you can put on hold, which can also be a big problem when out shopping.
Then I decided to type but the words and sentences were lost in my brain as the noise was getting horrendous as the builders were using electric saws to cut the wall tiles, then the electrician said he had to turn off all the electric to put in the new cables, It seemed to be taking him ages to get the job done and I could see he looked puzzled so I asked 'What's the problem?' he scratched his head and said (I can't remember which wires go where!!) so we spent much of the day without electricity until he could sort it out.
Then one of the builders said he needed extra tiles so he had to go all the way into town to buy them when he eventually returned I asked him (where are the edging tiles) he said 'Oh, the shop forgot to give them to me!' I said, 'But you were buying the materials why didn't you check you had everything before you returned home?' His answer was, 'I forgot! Is it me or the builders as they seem to have forgotten more in one day than I normally do, so I question who has the problem with short term memory, In the end I was getting so exasperated and confused with their excuses of forgetfulness I decided to give up on the day and I was glad when it was time for bed.
Saturday: with all the work going on in the house over the past month it's made my wife, me realise even more just how much all the building work and disruptions to my normal daily routine had affected me, It might seem to some that it was only some simple rebuilding and decorating work but through the eyes and in the confused mind of a person with dementia it was as though my whole world had been turned topsy-turvy and if asked by any family that has a person with dementia living at home about undertaking rebuilding or even decorating work my advice would be to think carefully and plan well ahead to avoid what can be a very traumatic situation for someone who has dementia.
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