The site has been a little quiet lately. StayingMe is all about caring and because we are carers, we feel that we have much to offer to help those who care for others.
As many carers know, life is often a roller-coaster ride with many ups and downs that span all of the different aspects of being a carer. Our particular ride over the last few weeks has been related to the health of one of those that we care for, and which actually highlights an all too frequent problem that you might expect to encounter in your duties as a carer of someone with dementia.
It is the use of dementia by others as a term of convenience.
Let me explain.
A patient has a particular type of dementia which causes certain personality issues. We'll give it a name - Frontal Lobe Dementia. This patient also has a number of mechanical control symptoms related to a stroke.
Because the patient is known to have dementia, it is not uncommon to find all of their symptoms lumped into the dementia basket. For example, if they cannot speak then it is because of the dementia. If they cannot swallow then it is because of the dementia. if they grasp at unseen visions in the air then it is because of dementia.
Bulk allocation of symptoms like this might not seem too problematic, if for example someone is in hospital with a broken hip. But when the patients chances of recovery are involved then it can be quite serious.
For example, an inability to swallow due to dementia is almost certainly not going to improve because dementia is a progressive disease. On the other hand, if the inability to swallow is due to a stroke, then there is a chance for improvement - albeit a small one.
There are other problems that can arise also.
When someone has been diagnosed with dementia, any unusual or unexpected behaviors are automatically attributed to dementia. If someone is known to have dementia, for example, it is all too easy for those who have little real understanding of that person's particular affliction to distinguish between a legitimate behavior and one that occurs as a result of the dementia.
For example, in an aged care facility, a resident might insist that they should be going somewhere on a particular day but staff, knowing only that she has some form of dementia, ignore it. The reality might be that a pickup was scheduled but something critical has delayed it.
As carers we tend to know those we care for and are often able to distinguish physical symptoms and behaviors in terms of their originating causes. We know when someone is exhibiting signs of dementia versus indications of some other problem, illness or concern.
But most of society does not know. Doctors, nurses, personal care workers, shop-keepers - they can only rely on us to present them with a clearer view. And there lies the problem. Dementia is a term of convenience to many of them and our views - our experience - is often ascribed to 'denial' or 'optimism'.
Those in the best position to understand are most often treated, if not with contempt, then at least as over emotional loved ones who are blind to the 'truth' that others (with no experience of or history with the person involved) can 'see'.
Dementia is to them a convenient label that covers almost anything they can imagine.