The whole narrative in respect of an awareness of changing behaviour in the one living with a progressive dementia, evolves from a logical perspective, a comparison of " what was" with "what is". The latter is the 'reality' however strange, unpredictable, frustrating, exasperating, simply exhausting. All of these relate to YOU the carer. The loved one living with dementia, when the disease has entered the stage when such behaviour becomes like a broken record, has no association with any of the factors which challenge the Carer. Very very difficult to put into practice, but a complete change of mind and attitude becomes essential if 'management' is to be achieved.
This is precisely why dementia remains misunderstood outside the domain of direct care or relationship. This is why the inevitable entry into Care by way of the Home takes place. Not, as can be so easily suggested, that it is the easy option when things develop. No, all the deeply felt love and affection for a person translates into " best interests" once personal care becomes impossible. If funds permit that might allow Care and Nursing at home. But the facts remain solid and intact. Dementia has no cure as yet and medication is part of the management when required, but not the ideal when " comfort" stemming from the heart and not simply a practicable approach, can work miracles.
In normal day to day living, we range emotionally across a broad spectrum of thoughts, desires, expectations and anxieties, mixed with routine and the accepted mundane tasks and so on. Then leisure finds its place and life goes on etc etc.
The " dementia life" is removed from all that normality and inhabits an unseen world which ranges across the ever changing spectrum of anxiety, depression, blissful " in the moment" periods, a reliving of a past in the present which is " real ", pain which cannot be expressed, fear, confusions, a profound need for feeling safe, a heightened sensitivity to sounds, colours, water, light, the list goes on and on. Yet, within all of this resides a human being. A spirit, able to express through a single tear, or a gentle smile, the person inside. That is where one focuses every vestige of one's attention and one's care. The actual person and the person you know to be there, despite everything which denies so, is the fundamental in all of this. And if that is expressed in the duration of a whole demanding week of exhausting Care, by the holding of a hand and the whispered endorsement of an indestructible love, then your humanity overrides the dementia and in that moment, nothing else matters whatsoever.