I Think Therefore I Am
Written by Dr Kartar Badsha, Southport.
Do the “experts” in dementia understand the patients? The simple answer is no. This is because most “experts” feel that having read a few books written not by sufferers but other so called “experts” they are able to comprehend and formulate treatment management. In order to understand dementia one has to go the basics of what it involves and recognise that progressive degeneration of the brain is only the final phase.
Dementia is most often thought of as a memory disorder, an illness of the aging mind. In its initial stages, that's true — memory loss is an early hallmark of dementia. But anyone who suffers know it is more than just that and it is more like a terminal disease, like cancer often unseen, that physically kills patients. It is not simply a mental ailment that accompanies older age.
Dementia is not a single illness but a collection or consequence of many, including Parkinson's disease, vascular dementia and Alzheimer's disease (which accounts for some 70% of all dementia cases). In the advanced stages of dementia, it is often impossible to tell which disease the patient had at the outset, as the end result is the same, according to Mitchell's study (Dr. Susan Mitchell of the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research): a syndrome of symptoms and complications — eating problems (86%), pneumonia (41%), difficulty breathing (46%), pain (39%) and fever (53%) — caused by brain failure.
"Dementia ends up involving much more than just the brain," says Dr. Claudia Kawas, professor of neurology at the University of California, Irvine. "We forget the brain does everything for us — controls the heart, the lungs, the gastrointestinal tract, the metabolism." She further concluded that "Our main findings confirmed dementia has high mortality. People in the study didn't have other devastating things happen to them before they died”.
There is a gap in the understanding of early stage patients. In fact there does not appear to be any mechanism to help sufferers with on set until it gets worse. The concept is not only demeaning to sufferers in this category but also lack of understanding that the quality of life can be made better and also people in this category can contribute to the society as a whole.
If the above is to be believed, than surely all involved must understand that palliative and not aggressive treatment is the answer. “Experts” say part of the reason it is so common to intervene in dementia cases is that the patient, by definition, cannot make medical decisions autonomously, leaving a relative or friend to serve as their health-care proxy but in reality patients are often ignored and treated as “imbecile”. It is not unusual for an “expert” to be talking about you in your presence but to a third party as if you do not exit. The true reasoning is more sinister, it is much easier to indoctrinate a relative (carer) into thinking that it is in the best interest of the sufferer. However, well intentioned on the part of close ones, often the sufferer is genuinely in fear of offending their love ones or carers by not agreeing with them to whatever is suggested. It is a lonley world surrounded by uncertainity. My experience has been a sad reflection of the above. I have been a “non – person” as far as “so called experts” are concerned – probably because I have a label, “onset of dementia” - I am therefore unable to think, unable to contribute to a better understanding of what people like me are suffering or going through.
The suggestion that all sufferers should sign over the power of attorney is in my view removing the last vestige of self respect and also acknowledgement that you are a “non- person”. In some cases this may be advisable however.
The “experts” make us drug junkies but wait what has the decision makers have in store for us – yes form filling. These are not simple forms and often to sufferers seem repetitive but running into tens of pages. I have two sets of forms together totalling into some 40 over pages – how does anyone expect sufferers to fill these forms. I have tried to get help but with zero success rate so far.
What is alternative. There is no easy way but hard work; often I give excuses for not wanting to do exercises to keep my brain active. I am very lonely mentally at times but not physically as I am one of a few who has both a loving wife and a friend. But the key is not to feel defeated. I am trying different techniques to see if my “carers” notice a “difference in me”. My techniques range from reading an Oxford dictionary over a period of three hours per day to playing mahjong and other board games. Also in my research I spend two to three hours with my grandson – again it is very therapeutic. I play with him very basic children games, singing rhymes and counting including alphabets – we have a positive reciprocal relationship. He respects me as an equal but the ugly world of “experts”.
Having identified the condition of dementia is one battle won, but attempting to promote understanding of it one requires a platform for communicating and counselling with doctors and decision makers; this although essential can be very elusive. I have yet to find a vehicle by which I am able to reach the decision makers.
“That's not a death panel. It's simply good medicine” in my opinion and save the Nation millions of pounds by not having to give patients psychotic drugs.
Adapted from well known song
“I am busy doin' nothin' but having a lot of psychotic drugs to make me happy
Workin' the whole day through with pages and pages of forms to fill
Tryin' to find lots of things not to do but too dozed up
I am busy goin' nowhere because no one want to help me
Isn't it just a crime but than you have dementia
I like to be unhappy, but
I never do have the time”
