A very bad night

Had a very bad night ‘again’ with hallucinations and at one point Sumi found me wandering from room to room with the torch in my hand what I was doing or where I was going I have no idea, apparently when she spoke to me I woke up so she took me back to bed but I could not get back to sleep so another restless night! I have always detested the word ‘Hate’ but I make an exception in the case of Dementia as I “Hate” it and what it’s doing to me Mentally and Physically        

“Friday 17 July Eid 2015”

This is what I wrote as my day progressed:


I am full of panic and apprehension this morning as I can’t remember what I should do or say to people when they visit us today and now my mind is lost in an ocean of bewilderment, I don’t know what way to turn or how to avert my fears of the day ahead, all I want to do is to run away or shut myself away from all the imminent visitors as I know that hands of greeting will keep being thrust out in front of me “But” what must I do in reply.


Sumi gave me a calming pill but I don’t feel calm, I’m tense and I keep trembling and looking over my shoulder but there’s nothing there so why do I feel so scared!


People have started to pour into the house like a torrential stream and I keep stammering my greetings with my mind going in circles. I said to Sumi I can’t understand why some of the visitors seem to be sacred of me as they are people that I have known since their own childhood but know they don’t want to even try talking to me what are they scared of! Why are they so sceptical has my condition deteriorated that much! I know I don’t remember any of their names and their faces are just faces so everybody seems like strangers to me including some members of my Indonesian family!


I’m shacking, shacking so much that I can’t control it so I went into our bedroom to get away from all the sudden hustle and noise, I sat in my armchair with my head clenched in my hands and then just burst into floods of tears I guess out of utter frustration with my condition (I am as a ghost lost in the shadowland of Alzheimer’s Dementia)


At midmorning Sumi and I went to visit some of our neighbours and wish them a ‘Happy Eid’ and to say this was extremely difficult for me to walk to their houses would be a gross understatement but I stumbled along the roadway going from house to house as I weighed heavily on my walking stick and Sumi’s arm and not really knowing where we were going, again I was confusion bound as I could not remember people’s names ‘Yet’ there faces seemed vaguely familiar!


By mid-afternoon I was utterly shattered and my left leg was badly swollen as was my prostrate and the personal area of my male anatomy which is still giving much cause for concern!


It was a very difficult day and I can honestly say that I don’t recall and ‘Eid’ being so difficult for me ‘but’ that’s the way of life when living with Alzheimer’s and Dementia…


Barry ©               

“Mixed dementia Diabetes Stress and Excessive Noise”

In my case this means I have Alzheimer’s, Lewy Body Dementia, and Parkinson’s disease, I also have Diabetes which like my Mixed Dementia was all diagnosed over almost 10 ½ years ago.


Not a good combination and one of the problems for me is to trying to keep the diabetes blood glucose under control, I maintain a strict diet but the problem of not being able to keep my blood sugar level low comes from the lack of vigorous exercise as now I can’t walk very far without becoming exhausted and losing my balance and also aggravating the pain in my spine and hips caused by osteoarthritis, I did try riding my bike again but kept lousing my balance and almost falling off.


Yes I am on Diabetic medication three times a day and also take supplementary traditional diabetic medication but still none of this is helping which then results in me becoming incredibly stressed about it and therein lies another problem as ‘Stress” causes the blood glucose to increase which puts a person in a (catch 22 situation) also ‘Stress’ isn’t good for a person with any type of dementia as it only increases confusion in the brain! But my doctor recently changed my medication which is now helping me much more.


Then comes the problem from excessive noise which out here where we live is horrendous since the roadway outside of our house has become more like a motorway with heavy traffic speeding past the house all day which causes me stress in the brain, then I get very agitated and scared about the children (like our granddaughter and niece) playing in the garden and maybe dashing into the roadway on their bikes which adds to more stress, as does all the excessive noise in the house from all the family.


It’s all well and good for my dear wife, her family and other people to say (Calm down, Relax) but the fact is that the dementia mind doesn’t react in that way it just turns any excessive worries into stressful moments which again makes the blood glucose go higher and also increases the brains confusion, sometimes it makes it very difficult to find that happy medium… 

A fraught day

It’s not a good day today as tension is getting very fraught in the house and everything I do seems to be wrong so Sumi is getting irritated with me which in turn is making me very anxious and then I get irritable.


The problem is that Sumi is extremely tired and also getting concerned and exasperated about my condition and not having anybody out here to turn to for on the spot help so to some extent she has to carry the burden of my illness and looking after me alone, on top of that she also has to look after her mother who lives with us and also has senile dementia! Although she will say otherwise which just makes life harder for Sumi. The other problem is that I realize that Sumi is going through the menopause which is just creating another burden for her to coupe with each day, I do try to be very understanding and patient but sometimes all my various health issues get on top of me and all I want to do is to just sit and cry which doesn’t help Sumi, I think the fact of the matter is that we both need some time out from my condition and some respite but none of that is available out here so all we can do is to keep fighting on…                      

Other health issues

Having Alzheimer’s, Parkinson’s and along with any other type of dementia is bad enough… but when it also has some other type of health issues that cause complications it can just add more anxiety to our daily life which is the case with me today. 

When I woke up this morning I was feeling in pain from the osteoarthritis in my spine and hips which now seems to have moved down the full length of my leg and into me foot so it took all my effort to drag myself out of bed, but I knew that if I did not move then my limbs would just set like cement, yet though I was in pain I said to Sumi ‘we must go for our early morning walk’ but every step was an immense effort to take sending shooting pains into my spine and the muscles in my legs, and now my whole leg from the groin to the toes keeps swelling up, it feels as though the bones are swollen and that the muscles and skin are being stretched apart, in-fact my leg even keeps swelling up whilst I’m sitting at the computer!     


Anyway I think Sumi could see I was having difficulty even though I was using my walking stick for support, so she took hold of my arm firmly to steady my balance, then as we paused for a few moments rest I turned to her and said, ‘Sorry my love, but I feel as though I’m walking towards my grave this morning’ which thinking about it wasn’t so far from the truth since we were walking in the direction of the local cemetery!

But when we got to its entrance a sudden surge of adrenaline burst into me as a thought went running through my head saying (I’m not ready for that pathway through those gates yet!)

The problem with my back has only been made worse this past week by the fact that I was running out of the pain killer medication so Sumi has had to cut the tablets in half to make them last until Thursday when we go to the doctor again for my check up, so this time I will make sure she counts the tablets to make sure there is the correct amount when we get them so that I don’t have to go through all this added additional discomfort again.