deteriorating far more rapidly

My condition seems to be deteriorating far more rapidly which seems to be coming from my latest health issue of the Osteoporosis, as I said the other day now both my left and right foot and both legs are swollen right up to the groin, then just yesterday Sumi said to me (Now what’s wrong with you right foot as its turning “Yellow”??

 

And then just this morning when she was giving me my morning shower she said (What’s wrong with the left side of your chest as it’s all swollen and puffed-up) I said I don’t know as there’s no pain in that area!

 

It seems that I also keep bumping into things and causing bodily abrasions but don’t have any recollection of hurting myself. Just his morning Sumi had to change the bed sheet as it seems that I might have been scratching or picking at a spot or mole on my back during the night (again no knowledge that I had been doing that) but the evidence was still clear to be seen as the bed sheet was covered in blood.

 

So this morning Sumi has been moving some of the furniture out of my pathway so that I don’t keep bumping into it with my walking frame or worse still my body!

 

Now I am going to try a little bit of gentle walking up and down our garden pathway before I go and lay flat on my back again! This isn’t how I had envisaged spending Christmas or seeing in the New Year!      

Doctors visit

Well I went for my monthly check-up yesterday and the doctor gave me a thorough examination and it seems that due to my Alzheimer’s, dementia and Parkinson’s disease I now have an additional health issue which I have been writing about being (the pains in my spine and hips) which my doctor tells me is due to “Osteoporosis” a medical condition in which the bones become brittle from loss of tissue, typically due to hormonal changes, or deficiency of calcium or vitamin D, I can’t say that I was surprised!

 

As a result of this she has told me that I can only spend an hour sitting at the computer a day and that I must stop mine and Sumi’s twice a day walks, also I mustn’t stand for very long, she said I must have complete bed rest for at least 3-4 months maybe longer to give the area time to try and recover! Anyway she has adjusted all my medications except for my Aricept and also now given me Pain Killers being Morphine! Which I must add has already started to kick-in as the pains have eased off a little bit and at least I could sleep last night although I’m still having great problems with walking so Sumi made me buy a ‘Walking Frame’ so that I can get to a from the bathroom a bit easier.

 

I think one of the biggest blows for me about this is that now I can’t stand and make my Christmas Dundee cake, butter shortbreads, mince pies and sausage rolls I will just have to use my imagination!

 

But what concerns me is that it’s going to make so much more extra work for Sumi as now I will need to rely on her to do everything for me, I know we all say the same thing in that this illness Alzheimer’s, dementia and Parkinson’s disease put so much extra daily strain on our spouse YET I know I’m in the best of supportive hands…

Illness deteriorating 25 November 2015

It’s hard for me having to admit but I now realize that over the past few weeks and months that my condition has drastically deteriorated, this became even more obvious to me last night after I’d had my evening bathe when I was in the bedroom trying to dry my body but just could not manoeuvre the bath towel over my body to do it so Sumi was helping me when all of a sudden she flung her arms around my neck with her head resting on my shoulder crying her eyes out and saying (Why oh Why) I asked her what was wrong and she said look at your body all the flesh and muscles are being eaten away and your bones are penetrating through the skin, she went on to say that she never realized that the Alzheimer’s, dementia, and Parkinson’s disease would do this to me.

I looked in her dressing table mirror and then realized just how true her words had been as the illness is diminishing my very being, I can tell that the illness is closing-in further around me and I feel that I am left faltering on the abyss, my body and walking is becoming a major problem and no longer can I bath, undress, or dress myself without Sumi’s help, I’m constantly shacking and get anxious very quickly, I feel lost in a haze of utter unawareness of my surroundings.

 

This is not how I envisaged my latter years of life ‘But’ I must try to keep fighting against the demon but now that’s not as easy to do as in the past and I am left feeling that my efforts are falling by the wayside.

 

But one thing I can still realize is that the reality of my condition is having a greater effect on Sumi than myself as she sees me 24 hours a day, 7 days a week but she keep the pain in her heart to herself!                                

“Self-examination of my present condition”

It’s now all but 11 years since I was first diagnosed with “Mixed Dementia” (Alzheimer’s, Dementia, and Parkinson’s disease) and I have been trying to asses my own present condition in terms of percentages and how the “Mixed Dementia” and other health issues are causing my condition to deteriorate day by day!  

 

1, my level of awareness of the illnesses deteriorating is still over 50%

 

2, my level of understanding any conversation has deteriorated by over 60 %

 

3, my ability to maintain my equilibrium and walking is deteriorating rapidly by over 60%

 

4, my level of patience with other people has deteriorated by over 50%

 

5, my ability to sleep right through the night has deteriorated by over 70%

 

6, my level of daily concentration has deteriorated by over 60%

 

7, my ability of remembering people has deteriorated by over 60%

 

8, my ability of remembering anything said to me in a conversation has deteriorated by over 70%

 

9, my short term memory has deteriorated by over 80%

 

10, my long term memory has deteriorated about 50%

 

11, my ability to prevent any night and day incontinence has deteriorated over 60%

 

12, my eating habits and taste buds have deteriorated by over 60%

 

13, my ability of communication has deteriorated by over 60%

 

14, my ability of persevering a healthy body and mind has deteriorated by over 50%

 

15, my ability to do things such as bathing or any household tasks single-handed has deteriorated by over 50%

 

16, by ability to prevent any physical tension, anxiety, shaking of the limbs has deteriorated by over 55%

 

17, my stress ability level has deteriorated by over 50%

 

18, my ability to control my medications alone has deteriorated by over 80%

 

19, my ability to stand for long hours throughout the day has deteriorated by over 80%

 

20, my ability to recall what I am doing has deteriorated by over 80%  

 

Based on this I would conclude that my overall condition has deteriorated by over 60% since my pre-diagnoses and still deteriorating daily    

 

“Entering a shroud of darkness”

I woke up this very early this morning feeling very disorientated and at first just sat on the bed lost within my surroundings then my mind started wandering and I started think about what other people with dementia have such as the memory Cafés, conferences and other meetings and have the opportunity to let your voice be heard about living with the illness yet I am still battling to get people around me to understand how I fell every day and I feel as though I am ‘Entering a shroud of darkness’ and that my days are becoming far, far more difficult for me to deal with, when Sumi and I go for our walks just to put one foot in front of the other has also become another major battle for me and I constantly feel extremely lethargic and sleepy, “But” my major problem is trying to fight this illness out here alone and the terrible feeling of loneliness and utter isolation that I have to live with every day and to be very honest I start to wonder if by me coming onto Facebook is doing me more harm than good, the shroud of darkness is closing in around me…            

“A Self Analysis”

This morning I caught sight on myself in Sumi’s dressing table mirror which made me abruptly stop and look deeply at the figure gazing back at me to see if I could observe any physical changes in my being after ten and a half years with this terrible illness.

 

I looked deep and hard, but all I thought I could see was what I take to be the normal physiology of “Me” my body size and weight still look the same, I don’t think that I appear frail, when looking in the mirror, I didn’t seem to be slouching, neither did I notice any agitation in my limbs, although I must admit that my eyes appear a bit shallow with slight bags under my eyes. So why is it when Sumi and I go out walking that people keep staring at me as though I have two heads or some other type of terrible physical problem? As to my mind I am still perfectly OK...

 

I know I have “Mixed Dementia” and I can still recognize all the changes taking place in my mind and body day after day, I can still feel all the anxiety and anguish every moment of every day and I know that at times I can become extremely frustrated and especially when typing and constantly mistyping and incorrectly spelling words, and I can still tell when I am becoming extremely anxious from excessive noise and other irritating sounds that vibrate through my brain like a pneumatic drill, and I can still grasp that I lose the thread of things that I am saying or even as I’m typing them...

 

But despite what I thought I saw in the mirror in the morning Sumi tells me that I do slouch badly and stumble when I walk, so much so that I have to use a walking stick to maintain my balance and Sumi said that the only other really noticeable thing that would indicate that I have a serious illness is in my speech and that’s only when I am extremely fatigued at the end of the day.

 

It seems that some people with this terrible illness lose all their awareness extremely quickly, but why is it that some of us can still be almost completely aware of what’s happening in what I call the “Knowing” and it’s the ‘Knowing’ that really gets to me and that is very hard to fight against, ‘Yet’ we can’t do anything to avert the problems, all we can do is to try our best in fighting the problems back least we topple into the abyss of non-awareness...                                 

           

Barry Pankhurst

Living with Mixed dementia in Indonesia 

Walking, spatial and balance problems

When I woke up this morning I felt decidedly unsteady and then as we stepped out into our roadway I could tell there was going to be a problem with my walking as my legs felt as though I were wearing hefty weights and it was an immense effort to put one foot in front of the other.

 

I was clinging onto Sumi’s arm very tightly with my other hand leaning heavily on my study walking stick but (and I should point out here that out here in our village and our village roadway we don’t have and footpaths) so every time any traffic speed passed us almost touching me I was losing my balance and drifting into the roadway and the pathway of approaching traffic and instead of the traffic slowing down as they could see I was having problems with my walking and balance all they do is to blast on the horn (as to say) get out of my way and get off the road!

 

Over the past few months my walking has become very bad and I do keep continuously losing my balance and have actually fallen over a few times although fortunately that has been indoors so I had a softer landing! I said to Sumi maybe I should get one of the aluminium walking sticks that has three legs or should I get a walking frame or wheelchair, “But” something inside of me keeps putting it off and keeps driving me onwards to battle against the spatial problems but the thing is that I know and am self-aware that my walking is now causing me a lot of stress and discomfort and makes me extremely exhausted and also causing my left leg to swell up like a balloon so should I acquiesce to my body or keep battling on! Me thinks that at this moment in time I will keep fighting against the problem.

 

Barry  

My condition has become worse

My condition has become worse for me over the past month after all the problems we had with the family out here which hit me extremely hard and has made my condition deteriorate even more rapidly, such upsets can leave there mark on any person who has any type of dementia, I’ve tried to shrug it off and I know that things have got a bit better after the reconciliation but that reconciliation isn’t going to turn back the pages of what it’s done to my condition.

 

Now at times I seem lost in my own home, I look around and wonder (Where am I and why am I living here) then I look at Sumi and I realize that I might be forgetting about her own feelings and then start to wonder am I forgetting her, is my mind drifting away from her as a time I do feel somewhat oblivious to her presence around me, then I wonder how can I carry on when I know that there’s no turning back the pages of time “YET we do carry on” and I know that like me others also have immense fight and I know that no matter how hard it might be they will fight off any such feelings as we are not ready to reach the end of the pathway yet…

Keep fighting my friends                

My Condition deterioration Dec 2014

Well as this year draws to a close last night Sumi and I had a long talk about my condition as we have promised always to be honest with each other about it ‘but’ after some coaxing and I might add a deluge of tears from her she admitted that over the past 3 months my condition has become far worse, which at first made me cross as she has kept it from me nor had she discussed it with my doctor so that maybe she could adjust my medications.

 

From what Sumi said I have become far more irritable and impatient with everybody in the house, she also said that I keep staggering much more when walking and more like a drunk person and weighing even harder on her right arm for extra support, apparently if she lets me walk alone which is always the case inside the house then I tend to keep turning in circles saying (where am I going, what am I doing and clutching my head in my hands) also it seems that of late my body, arms and hands have become far more shaky and agitated which was highlighted even more yesterday when we had to call out an emergency doctor for Sumi who had a very bad migraine, after attending to Sumi and giving her some medication he looked deeply at me and then said to me (you have Alzheimer’s and Parkinson’s disease don’t you) and then went onto say (You can get medication for your shaking hands) I tried to speak to the doctor but my words all came out muddled up and I kept stuttering, it was as if my voice had become frozen, so Sumi told him that I already have medication, to which he replied that, ‘it needs to be adjusted’ maybe he should not have said that to me as it sent me into a panic as to whether or not my doctor is in full control of my condition ‘but’ as I said Sumi hasn’t been informing her so that’s got to be put right on my next visit next year.

 

There’s also another very weird thing in that Sumi said that I am hallucinating as I keep saying that I can smell chocolate all the time in every room I go, and now I think about it she is right I do keep smelling the aroma of strong chocolate in the house, but then to my mind I do keep getting the aroma of other strange smells and for no apparent reason, so yet more to discuss with the doctor.

 

“YET My” main concern is for Sumi as she keeps getting migraine headaches which causes me a lot of anxiety as my brain starts to go irrational and think stupid things like it might be a brain tumour and what would happen then! I know it’s stupid but that’s how the dementia mind can work without lucid thinking!

“Obsessions”

Over the past few years as my condition has slowly deteriorated so have some of the problems become more extreme and given that the illness advances at a relatively slow rate not always do we notice the changes taking place in our own mind or behavior that can be completely non characteristic to our past ways of life. One such problem that my dear wife is now faced with is my obsession of wanting to buy new clothes and shoes whenever we go out shopping… Yet my wardrobe is jam-packed with tracksuit trousers, shorts, tee-shirts and trainers some of which I still haven’t worn! But from the moment we walk into a shopping arcade or the market I seem to make a fanatical Beeline towards the sportswear shop…

   

My dear wife Sumi will then ask me …why do you need new clothes you have plenty, or why new shoes, you only have two feet, you’re not a centipede! I will normally retort that I need my clothes and shoes to be in colour harmony, to which she just laughs saying, but your body and mind aren’t harmonized! At least she can bring a bit of humor to the problem… and there’s no denying it is a problem, and one that can affect people with dementia in many, many different ways depending on their obsession predilection…

 

I recently read about a gentleman that had Lewy Body Dementia who had an obsession for stuffed animals that were a great source of comfort to him and would sit for hours just stroking them. There was another case of a man who was obsessed with buying wrist watches due to his fixation with “Time” but he never wore any of the watches on his wrist… the list of such obsessions could go on and on…

 

Sometimes ‘maybe out of utter boredom with the day’ I will disappear into the bedroom and start sorting out all my clothes and shoes trying to match them together and then heaping them on the bed so in the end it looks more like a rummage sale which then infuriates Sumi as she is the one that has to sort it out and put the clothes away.

                                          

Although this can be just one more of the problems we face with our illness I should add that it doesn’t necessarily mean that your loved one will be the same since as we all know this illness can affect us all in many different ways through its bewildering progression.  

“Frequently Jumpy at the slightest noise”

I have mentioned about this in some of my other articles about how sudden noises or motion can affect us making us suddenly Jump out of our skin, so I now want to elaborate on this topic which some non sufferers seem to find extremely amusing when they see it happen to us…


I realize this is something that can happen to each and every one of us even if you do not have dementia and a part of normal daily life when you suddenly hear some type of loud noise like a car exhaust pipe backfiring, or if someone drops something on the ground that makes a sudden noise… but people do not realize just how disconcerting that can be on a person that has dementia… and I’m sure that if you were to ask people with our illness what makes them suddenly ‘Jump’ you would have enough information to produce an encyclopaedia… 


The repercussion of any type of ‘loud noise’ as in, Music, Loudspeakers, Traffic, Crowds, Children shouting as they play, People all talking at the same time, Motor vehicle horns, In-house music in shops, Fireworks, and even on hearing a young baby cry, the list could go on and on… but in the ears of someone with our illness such noises can cause an adverse affect in our eardrum that reverberates distortions to our brain and cause us a great deal of anxiety, confusion, and disorientation, which is not a pleasant sensation, and when this happens to me I tend to lose all awareness of ‘Time and Place’ or even what I’m doing…


Sometimes when my dear wife and I are out walking and we try to cross the road to the other side but because of the extreme noise from the traffic I immediately have a problem at the curb side with ‘Freezing’ whereby my legs start to jerk up and down as though trying to step forwards, but you go nowhere, as the intense noise only confuses the normal body movement, it also makes us lose our sense of judgment and the distance between the curb and the roadway, (at this point I should point out that zebra crossings are non effective where I live, as vehicles are King of the road) 


A few weeks ago when my wife and I were crossing the road we had managed to get to the middle of the roadway where we got stuck with the traffic racing by us in both directions which frightened me so much I started to panic and became extremely agitated not knowing which way to go ‘forward or backward’ I was clinging onto my dear wife so tight as the traffic whizzed by us so close almost touching our bodies and causing sudden blasts of gushing airflow she said, ‘Your hurting my arm’ then on seeing a gap in the traffic she tied to guide me across the road, but as I tried to step forward I again became ‘Frozen on the spot’ shaking in fear… my head was pounding so much from all the noise of the heavy traffic that it was sending vibrations through my mind and body… 


Finally we managed to get to the other side of the road whereupon I just sat on the curb holding my head and ears in my hands trying to block out the horrendous noise…


This is now going to sound unbelievable… but as I said even children at play can sometimes cause unfriendly noise that upsets our equilibrium, (but don’t get me wrong as I dearly love children as much as the next person) Yet now when I hear them playing, laughing, and screeching outside our house in garden the noise is like a pneumatic drill in my mind causing a total distraction from what I might be doing and any sense of logical thinking or reality is gone… an instance is that at the moment it’s a special period of every year when the children out here get exceptionally exuberant especially first thing in the morning at around 4am and again in the evening after 7pm, when they go loudly shouting dashing up and down the road letting of fireworks which I once used to enjoy but now the sudden (Whiz, Cracking and thunderous explosions) send unexpected shock waves through my entire body that almost have me reaching for the stars myself! This again can cause me deep anxiety and disorientation...


But the anomaly of this illness is that it’s not just loud noises that cause us great shock to the mind that make us jump, as it can also be triggered by an innocent light tap from behind on the shoulder or someone speaking, maybe by the family or a friend… my dear wife (who God bless her still can’t understand it) is a prime example… I can be sitting engrossed at the computer or watching the TV and have no awareness that she has entered the room until a her tranquil voice almost hits me like a ton of bricks saying something like (What would you like for lunch, or, I’m off to the market) at which point I again almost jump out my skin and jokingly say, (My daring I don’t know what will be the death of me first, the Alzheimer’s, or your, Quiet as a mouse loving care)


Another example was a few days ago when I was sat at the computer typing this book unbeknown to me our niece of 3 years old extremely quietly came into the room and I was so immersed in what I was typing that I did not realize she was standing by my side watching me until her gentle fairy like fingers touched my bare leg (as I was wearing shorts) and a little voice saying (what you doing Uncle) which made me jump so much… that it frightened her and she started to cry… yet besides my almighty shock on this occasion I was still able to laugh and to pick her up for a cuddle (to make it all better with lots of kisses…) 


If only all the shocks of this terrible illness could be eradicated with just cuddles and kisses… as I’d be first in the cue…


Barry

“Shitting Tide”

Of late and despite all my efforts to fight against it I’ve been having tremendous difficulty and especially at the end of day when by 3-4pm I start feeling extremely lethargic and utterly exhausted some of which I think might be due to the excessive heat and humidity that we are having at the moment, although Sumi and I still go for our late afternoon walk but I keep my head covered to try and avert direct sunlight into my eyes, although I have this unyielding sense of my mind and body being drawn towards the horizon and I can feel myself becoming rather irritable and I have this terrible sense of a cloud of doom hanging over me and the area we live in! It’s very difficult t explain but it’s the most terrible feeling.  

 

Sumi tries to comfort me and to help me fight off the felling and normally by 5pm makes me take a shower and then go into the bedroom (which has an air-conditioner) and sit on the bed watching my comedy DVDs, at least in that way it takes my mind off the waning sun...  and now it’s not unusual for me to be asleep by 7-30-8pm but then the problem exists that I keep waking up during the night from insomnia and just lay in bed with irrational thoughts running through my mind of my destiny in life and trying to fight against such thoughts is very difficult in the very early hours of the night/morning as you tend to be fighting alone as I’m not going to disturb Sumi who needs her sleep to build up her own energy for taking care of me the next day so it becomes very much a vicious circle entwined by the shifting tide of dementia...                              

“The fight for life without rounds”

When you have Alzheimer’s or any other type of dementia fighting against it day after day becomes that little bit harder as the illness is unyielding and never gives you a moments respite, you can’t even compare it to a boxing match as at least from what I can remember a boxing match only has 12 rounds, but there are no rounds with dementia it’s just a constant battle and a battle that hits you below the belt, and without a referee to maintain fair play.

 

I guess you could always throw in the towel and give up hope of winning as the reality is that I know the dementia will win in the end “But” that’s not my way, so I will battle on for as long as I can, although I do wish that the Alzheimer’s would give me a short breathing space in-between each bout, as its now over nine years without a moments respite and the fight goes ever on with the gloves off!                

Fighting against my Alzheimer’s

It had just turned 4pm when I collapsed into my chair totally exhausted after what had been a more than demanding day many thanks to my darling wife… 


It had all started when a distant family member had visited our house a few days before to tell us that her daughter was getting married and could ‘Barry’ please make some sponge cakes for them, on hearing them say this I had already started to get a bit worried as I know what my dear wife is like and never likes to say ’NO’ and especially when it’s family, but she consulted me first and asked, ‘What do you think, could you manage it’ there then followed a long pause as I could sense the apprehension going through my brain, so I asked how many sponges cakes (thinking maybe it would be about 12 pieces) but nearly fell out of my chair when she said 600 individual decorated sponges, so I picked up pen, paper and calculator trying to fathom out the equation of how long it would take and would my body and mind be up to such an immense task of what was going to be a full two days work… after some deliberation I agreed to make the sponges yet uncertainty was ringing warning bells in my mind as I’ve not taken on a job like this for the past five and a half years… but in all honesty it wasn’t just all the work I was thinking about as there were two dominant factors in my mind that made me say ‘Yes to the order’ (1) was the financial profit I would make which would help immensely with this month’s medication costs, and (2) I knew that if I succeeded in completing the job without any mishaps it would be an enormous boost to my motivation, adrenaline and self-esteem.


When I went off to bed that evening all the planning and production of what was ahead of me were still spinning round in my mind as I knew the following day would be more than difficult and busy as it was also the last day of Ramadan (the Holy fasting Month) so my dear wife would also be busy in the kitchen cooking but I managed to quickly drift off into a peaceful sleep, only to be abruptly woken up again shaking in panic by the thunderous sound of fireworks being let of in the roadway by extremely excited children in eagerness of the Eid holiday that follows the end of Ramadan, the firework explosions went on and on and each time making me jump out of my skin causing me great anxiety, so I tried burying my head under the pillow but still the noises echoed through my mind, I looked at the clock and saw it was about 9pm and not long after that somehow I managed to go back into a now restless sleep… 


Sumi has since told me that my whole body was trembling, waving my arms around, and rambling in my fraught sleep… and apparently I woke up again at midnight although I did not realize then what the time was, but I got out of bed and got dressed went into the kitchen, made some coffee to try and get my brain into gear, then I decided now that I’m up and it’s so quiet with nothing to confuse me any further I might as well make a start on the sponge cakes and by the time the family woke up at 4am I had almost finished and thank goodness without any mishaps with the recipes or baking, the first step of making the sponges was perfect and by 6am I was back in bed content and sound asleep.


The rest of the day passed unexpectedly quiet, well that is until 6pm when the final day of Ramadan come to a close that was echoing loudly from all direction of the village through loudspeakers that almost had me hysterical in anxiety from the distorted noise reverberating through my mind, at this point the children started to continually let of extremely ear-splitting exploding fireworks again in sheer exuberance that had me standing in the middle of the sitting room hands pressed over my ears literally turning in circles not knowing what way to go, or what to do, so as to ease my distress, my dear wife Sumi on seeing just how anxious I’d become quickly rushed to my side gave me one of my calming tablets, gently massaged my neck and shoulders, then taking my hand took me into the bedroom and put me to bed then covered my ears with my headphones and connected them to the television and DVD so that I could watch one of my favorite British comedy films that claimed superiority and calmness over the noise outside of the house, from that moment on I don’t remember much more until I woke up at 2-30am and still wearing the headphones which made me think that obviously a sense of peacefulness, mixed with good old humor, besides my tablet, had quickly calmed me down and I woke up feeling revived, all I had to do now was to get through the rest of what was going to be another day of confusion once all the visitors started descending on our house at the start of the Eid holiday. 


It was just turned 7am when the rest of the family returned from the customary early morning mass prayers that’s held at our local playing field that marks the close of Ramadan and the commencement of the holiday which this year because of my condition Sumi said we would not attend and there was no way she was going to leave me at home alone for two hours, and as she rightly said, with my Alzheimer’s mind and Parkinson’s effected body it could contend with the over 2000 people all gathered closely together in one place and at the same time. 


By 7-30 visitors had started to stream into the house to wish us a happy Eid holiday and the customer courtesy of offering forgiveness if they had offended us in any way throughout the pervious twelve months, as the neighbors streamed in my head started to real in apprehension as for the life of me I just could not remember what I should say in customary reply, extended arms were being thrust at me to shake hands but all my coordination was gone and my right hand didn’t know what to do so I just stood there frozen to the spot but physically shaking, I tried to open my mouth to speak but no words would come out as my mind had gone completely void of conversation… I kept saying to Sumi how is this? What’s their name, I can’t remember? In the end Sumi had to stand by my side holding onto my arm and almost introduce neighbors to me as if it was the first time we had meet… I felt like a big imbecile lost within my own neighborhood amongst people that I’ve known for the past 11 years… hordes of children came excitedly dashing into the house all sporting their new clothes for the occasion waiting to receive their traditional envelope containing some money, who they were I had no idea as to my mind it was like bees round an open honey pot, and as the morning went on I could feel the tears whelming up inside me like a flooded river about to break its banks.


A bit later in the morning Sumi said that for courtesy we must go and visit the ‘Head person that oversees our part of the neighborhood’ on entering his house we gave our greetings and politely sat talking and I felt quiet at ease (Then it happened, and I made an almighty blunder) when I turned to him asking ‘Where is your wife’ a sudden silence filled the room, so much so, that if a pin had been dropped the noise of it hitting the floor would have been louder than the firework explosions of the previous night… Sumi gently squeezed my hand and whispered in my ear ‘Baz she died two months ago’ I looked back at her totally bewildered and extremely embarrassed as I had completely forgotten… but the man passed it off as a ‘Please don’t worry, I understand’ as my dear wife also had dementia… which was yet another surprise to us all as he had never told or discussed it with anyone except the doctor that gave the diagnoses and from that point on he never took her back to the doctor again neither did she have any medication since they could not afford it which made me realize even more just how fortunate I am.


By the end of the day I felt absolutely shattered and just crashed out on the bed and according to my dear wife I was sound asleep by 6-30pm.


The next morning I was again awake by 1-30am but this time had a clear purpose in mind being the decorating of the 600 individual sponge cakes a task I use to do without thinking about twice but now it’s an almighty challenge that I’d tried to gear up my mind with positive thoughts to accomplish the work without any problems and by midday of that morning I had managed to do just that… when I looked at all that I had done and given my condition it gave me a great sense of satisfaction and the boost of motivation that any of us with this terrible illness desperately need... and yet even though the past three day’s had left their own problematic scars on me and both Physically and mentally drained me out I still have that great feeling of exhilaration and determination for life in fighting this illness until it’s bitter end…


Barry September 2013

 

In the face of Dementia and Awareness

I recently read an article on a website where a gentleman wrote and I quote: 


(I’ve been amazed ‘in my ignorance’ that some dementia sufferers have awareness that they have this disease, is this the same for all who have the illness? As I’ve always thought my father didn’t know, but now I’m wondering if he did. I’m also surprised that some people can still drive, shop etc, is there a timescale? Does it happen to all or just some?) 

 


So having read that I thought it’s a good opportunity to elaborate on the topic of a sufferer’s individual awareness about their condition and some of the misconceptions that people have. 


We all know that this illness can affect each individual in many different ways and I would say that’s very much the scenario within the early stages of the illness, and ‘Yes’ it’s true that for some of us including myself who was diagnosed just over 8 years ago with ‘Mixed dementia, Alzheimer’s, LBD and Parkinson’s disease’ can be aware of our condition and can actually be conscious of the daily affect its having on us and our loved ones ‘AND’ be aware of our conditions slow devastating deterioration taking place… which I can assure you unlike happier memories of past is not a pleasant sensation to experience, and what tears me apart inside more than anything else is for me to be aware and see the anguish in my dear wife’s face and eyes and the knowing that there’s very little I can do to alleviate her own distress… 


Personally I think a lot of this awareness is to do with how early the illness was first diagnosed and how soon the person is prescribed one of the special medications ‘which in my case’ I was immediately prescribed (Aricept) that is helping my daily life immensely… and maybe that’s partly the reason that I can still sit working at the computer typing and making recordings about my experiences within the illness and go shopping with my wife, but I must add here that for safety reasons from the moment I was first diagnosed I no longer drive as I considered that other peoples wellbeing were far more paramount than my own needs… which again is a case of being aware of the many implications of our illness…


I guess you could say that dementia has many faces of deception… and maybe sometimes like me when you go out for a walk or shopping and bump into friends (whose names for the life of you, you just can’t remember) during a conversation they might say (You don’t look like you have dementia you look very well) to which I normally reply (Then what should a person with dementia look like) and it’s not unusual for people to say (Um, um… old and frail) the problem is that they can only see what’s on the surface of our “living being” yes I said “LIVING BEING” they can’t see or feel the reality of the daily anguish inside us, and still many people seem to think that because of our illness we are completely unaware of what’s happening… but that’s not necessarily the state of affairs within the conundrum of our illness… it’s more a case of (Some can still be proactive, ‘but’ others for one reason or another due to the illness are unable to articulate any of their feelings, fears, emotions and anxieties deep inside themselves because of the frustrating tangled maze within the brain) in fact the enigma of dementia can go much further than that as some sufferers suddenly find they have hidden talents that might have been laying dormant within the alcoves of the brain awaiting for the appropriate time to surface as a coping mechanism… for some this can take the form of painting, singing, pottery, or as in my case Poetry and the computer which is something I knew absolutely nothing about until my illness, and for some despite any anxiety they are still able to do public speaking to raise more awareness about the illness… and yet through all this in the early stages some of us can be extremely aware of every debilitating footstep we take, although I’m realistic enough to realize that over a course of time this will diminish, yet having said that, I don’t think we should presume that in the latter stages every sufferer (just because of the loss of abilities) has lost their entire inner awareness and feelings that have become suppressed within the face of dementia… 


So please look deep and beyond into any dementia sufferers hazy bewildered eyes and therein you will see a person still fighting their individual quest for existence, right up until the bitter end… 



I close this with one of my mottos:


(Every day of my life has been like an exciting new quest, but this particular quest within my illness, unlike the faded tapestries of my past days… is a tapestry that at some point in time will eventually be forgotten…) 

 

 

A word to the wise

Why did I come in this room?  

Where did I leave my car keys?  

Sorry I can’t remember your name? 

What did you say the time was?

  

I’m sure this is something that’s happened to us all, and on more than one occasion… when for the some unknown reason we simply just can’t remember what is a part of our normal daily activity, yet we know that the information is somewhere in the archives of our brain, but we just cant seem able to retrieve it… which as we all know can then be very infuriating…      

 

Forgetting the occasional name of someone you’ve only meet a few times is quite understandable, or forgetting an appointment, and forgetting phone numbers… but it’s not logical that we forget in what room we keep the phone… or how to use it…

Although as we get elderly we can all expect to have some decline in our memory which can then have an effect on our normal daily routine, the way we do things, and the way we communicate with people, but when such changes start to take place when you’re still working and relatively young then there might be some cause for serious concern…   

 

If we are truthful with ourselves then I would say that none of us like to think too much about the future… and definitely not the possibility of maybe having an incurable illness… yet such a destiny can hang in the balance for us all.  

 

So a word to the wise, if you’re in any doubt about any sudden loss or confusions of your memory then don’t put off going to the doctor with any concerns you might have, and God forbid… if it should be Alzheimer’s or any other type of dementia then the sooner a positive diagnosis is given… then hopefully the sooner a person can be put onto some type of specialized medication that can help with the new way of daily life ahead of you…                     

 

“How mixed Dementia crept up on me”

This might seem a strange time to be writing about this but I thought it could be of some benefit to other people to know how I first realized I had a problem with some type of dementia that after CT scans highlighted the problem as being ‘Mixed Dementia’ (Alzheimer’s, Lewy Body Dementia and Parkinson’s disease) 


The notes herein don’t necessarily follow any set pattern they were just written as and when I noticed the changes in myself over a period of one year, so I hope this will give other people some idea of the effect that Alzheimer’s or any other type of Dementia has on the brain of which there is no rhyme or explanation except to say that all logic goes out of the window... 

 

Thinking about it now and reviewing the circumstances of that time now over some eight years ago I would say that the dementia had already infiltrated my mind but not to the point of being obvious to me, but then I had to have an emergency operation for an inflamed appendicitis, thereafter when I was at home recovering and preparing myself both mentally and physically to resume my Bakery business I suddenly had sharp pains in my left arm and chest which after medical check-ups proved to have been a mild stroke, and it was a few weeks after this time that I started to notice some problems with my memory such as forgetting important ingredient in my recipes, forgetting that I had products baking in my oven which would then end up like charcoal, and forgetting to make customers orders! It was at this point that I realized my own problem and went for medical check-ups and scans to determine diagnoses which confirmed to both my doctor’s and to me ‘like a bolt from the blue’ to be (Early onset Mixed dementia, Alzheimer’s, Lewy Body Dementia and Parkinson’s disease)                         


Maybe some of you have been diagnosed with Dementia… or maybe you’re frightened in case you fall foul of Dementia… all I can say is, although this is a devastating illness for both the person and the family “Don’t be scared” as normally in the Early stages there is no bodily pain, except for the that deep sense of anguish and anxiety in your heart and soul from not being able to do things the way you used to… and then the sudden realization of how it will have an effect on your spouse and family. 


The point is that unlike some illnesses such as a cold or headache you can tell very quickly what the problem is “But Dementia is in no way like that” as it seems to creep up on you from behind, it’s very subtle, furtive, and devious and the chances are you won’t even know you have a problem until maybe your family or friends notice changes in your demeanor, or it could be that like myself over a period of time you will start to notice changes in yourself and fortunately write them down… 


Listed out below is how I concluded I had a problem, but you should remember that it’s not necessarily the same way for any two people… as the illness seems to affect us all in different ways… and even at different stages of its progression… 

 

The symptoms / signs that indicated to me that I had a memory problem ‘probably being dementia” are listed below and I was diagnosed as having early onset dementia at the age of 58  

 

“Taken from my diary notes, January 2004”


Fuzziness in the head like a morning after the night before…

Keep getting confused at what I’m doing…

Getting disorientated when out shopping and in crowded areas…

No interest in working at my profession or anything anymore...

Keep forgetting what I’m doing or why I’m doing it…

Keep wandering around the house not knowing and forget why…

Loose of balance as though I’m going to fall over…

Eye sight has got very bad, they hurt when I watch TV, vision blurred…

Forgetting the names of people I should know…

Forget what I’m reading or what I’ve just read…

Getting the shakes down my right arm and leg when I relax…

Can’t plan things or calculate my recipes anymore…

Making a meal or the bed is very difficult for me now…

Vivid memories of my past life, but forget what happened yesterday…

Can’t remember where I put things…

Must write things down otherwise I forget in a matter of minutes...

Hand writing and spelling has become a problem…

Lose my temper quickly and get very agitated…

Get very depressed… 

Keep crying and for no apparent reason…

My speech has become slurred and can’t find the right words when talking and forget what I’m talking about…

Can’t remember how to use the computer and forgetting how to do new things when I’m shown…

Sleeping habits keep changing now I can’t sleep of a night time, and keep waking up for the toilet…

Can’t concentrate or comprehend my simple crosswords anymore…

All thoughts of Romanic sexual interest have gone…

Any small sound makes me extremely jumpy… 


By January 2005 it was confirmed, so the answer to your question is ‘YES’ there can be symptoms of dementia, the problem is that due to the way dementia affects the brain not everyone can perceive or define the early signs    

 

“Yes” the list is long and over the past eight years some aspects have now become much worse, others have eased-up thanks to the excellent specialized medication… yet still everyday seems to bring something new, I guess you could say you have a surprise every day. But just remember and keep telling yourself like I do that you’re not the only one with the illness and its associated problems, so I keep telling myself to be positive of mind in the fact that I’m not alone…

 

Am I my Granddad

Pom, Pom with my dear eldest cousin Tina who is more like a sister to me and then me

Many times I find myself sitting trying to think why I have got this illness. Is it hereditary as my late grandfather had the same illness and my dear mother always said that I was my grandfather in every way? Maybe that’s true, as what I remember of him besides our nick name for him (POM-POM) is that he was a very patient understanding man and a real craftsman with his hands having been a monumental letter cutter slowly chipping out the names and dates on marble tomb stones and then inlaying them with gold leaf, apparently he did all the letter cutting on the Cenotaph in Enfield to mark all the dead from World Wars One and Two, when ever I use to walk past it I had a sense of pride in thinking my granddad did that… he was an avid pipe smoker as I was myself and when I was young I would to sit on his lap filling his pipe with tobacco (strange as my children used to do the same for me) often he would ask me to go to the tobacconist to buy his tobacco and a tin of snuff, I can still remember that beautiful smell of all the tobaccos which is something you don’t seem to find now, but it always made me fell extremely sad to see him just sitting in his chair with his hands and arms shaking from the Parkinson’s disease...

“Am I my granddad” as it turned out that I would also be a craftsman with my hands, but in my case as a Master Baker and Confectioner with a specialty of celebration cake decoration and during my career had the honor of making cakes for Royal family’s at home and overseas…

 

Or could it be other factors that influenced my illness, like all the extra long hours I used to work, quiet often 20 hours a day, 7 days a week (A workaholic) or the loneliness of my past job traveling from country to country teaching and training how to make bread and cakes… always away from home for three-four weeks at a time, spending countless hours sitting in airports and on planes and normally working writing preparing for the next country visit or seminars. People would say what a fantastic job you have but they forget it was work and not a holiday when you can relax and enjoy the countries and places you visit, it very quickly becomes mundane and all you want is to be at home with your family.

Yes I stayed in the best 5 star hotels, ate the best foods and visited historical places that others might only dream about, but at the end of the day there was always the loneliness of the hotel room, spending many hours alone writing reports and then when I did get home to my base country there was the loneliness of living in a big house alone, so much so, I turned to drinking as it seemed at the time it took away the loneliness… could be it was the excessive drinking to the point of alcoholism and all the stress I had in my life at that same time with the divorce proceedings, and the changes in the company I was then working for, as they decided to exit the bakery business so bakery advisers would no longer be needed hence I was given early retirement, there were also many other factors at this time far too many to mention but they all compounded to my stress and the heavy drinking, so much so, I had a nervous breakdown and even got to the point of trying to end life myself more than once from an overdose of my depression tablets and alcohol, but strangely… or I should say luckily enough it never worked, and thanks to God I don’t drink anymore and have not done so for about the past 10 years or so, albeit to late…

So am I my granddad… or was it other influences in my life that might have caused my brain to crash… like the proverbial computer. I guess that question will only be answered, as and when I reach the end of my journey at station demise!

 

 

My Nine years with Mixed Dementia and Alzheimer’s

It hardly seems possible that I hadn’t even considered the possibility of having mixed dementia and Alzheimer’s but here I am now some nine years into the illness at the age of 67 and trying to reflect over the impact it had on daily life for me and my family.  

 

But I still consider myself as being fortunate since I have an excellent doctor who had immediately put me on one of the best medications available from the moment I was diagnosed which I’m sure has had a positive effect in slowing down the progression of the illness, although personally I don’t feel it’s just due to the medication alone.

 

I’m sure that keeping a positive philosophical attitude along with my daily physical and mental exercise is a key factor in the early stages. We need to be a bit like a chameleon and adjust ourselves in accordance with our new surroundings and there’s no denying it doesn’t come easy for anyone trying to adapt themselves to a new way of life and the sudden changes in daily routine but if we want to survive and maintain some quality in life ‘then adapt we must’ it brings to mind the old saying (Be like a willow tree and bend with the wind least you break) which is not so easy as I live in Indonesia where people have no idea what Alzheimer’s is or the effects it has on a person’s life unto their eyes it’s a curse or black magic that brings stigma to the family and a boundary I’m still trying to conquer this isn’t helped by not having any local Alzheimer’s society, day centres, or any type of support groups for either my wife or myself which has meant a case of literally having to go it alone, which has demanded a great deal of self motivation in fighting the illness from my own point of view whilst also trying to be a counsellor to my dear wife…        

 

It’s not only meant change for me but also for my wife who relinquished her shop to take care of me which has meant some financial sacrifice for us all but she says love and my life mean more to her than money and if there is a positive side to having Alzheimer’s then through my eyes it’s the fact that we now spend more time together than in the past.

 

Every day we go for a walk together along the road outside of our house even though it’s not exactly the best walking ground, she makes sure that I do my daily riding on my exercise bike and that I keep to a balanced diet and remembers my medications for me. When I have bad days or sleepless nights which now seem to be more frequent she never complains even though I can sometimes fly into a rage and become verbally aggressive at what must appear as being inconsequential problems and then just walk away seeking solitude within my own confused thoughts, it’s as though my days are getting longer as my comprehension, awareness and tolerance are becoming shorter.                

 

Over the past few years I’ve seen my communication skills diminish but even so I maintain my daily brain activity and stimulation by using the computer and formulating my own word puzzles, sending E-mails and communicating with family and close friends via Skype and other online video chat groups and via the internet with the UK Alzheimer’s society, Alzheimer’s Talking Point, Alzheimer’s YouTube, and now Facebook and of course now by using my own website where I am a constant contributor with articles and poems relating to the effects of the illness from what I call both perspectives one being from a person who has the illness and the other from the spouse’s point of view.

 

My sole aim is in trying to broaden the awareness of this debilitating condition whilst also trying to motivate other people with the illness not to give up the fight and to keep the brain as active as possible, I also still try to keep some of my old working skills going by Baking and making my own bread, cakes or decorating a cake as it gives me a great sense of self achievement and satisfaction, none of which comes easy now with the constant noises around me and at the best of times I get very confused, agitated and temperamental but the important thing for me is in keeping active and the drive of self motivation ongoing as I’m determined to slow down the affects of the illness for as long as I can to avoid it from totally eclipsing my brain, although I know I won’t win the battle, but that’s not going to deter me from continually trying...

 

Barry