The one certain thing about dementia is that it is a progressive condition with decline inevitable. There have been several attempts to locate where individuals are on what is often described as their journey with dementia. With my limited experience of the condition I would argue that such classification is largely academic. It may be worth putting on record that my personal experience with dementia is not restricted to M: my mother and brother have both been longer on this journey than my wife. Mum has vascular dementia and J has Alzheimer’s disease.
I could spend time locating mum, J or M in any one of the classification systems for the condition. They could all have Roman Numerals, a Gem stone, or something else attached to their medical record. I would argue that outside their circle of clinicians these classification systems have limited value. It may be more helpful to know that my mum is very quiet and needs lots of support for her personal needs. J requires medication so that his carers can manage his personal care. Whilst M appears to be in a period of rapid decline with simple tasks beyond her current capability. The point I am possibly labouring here is that numerals and Gem stones are only partially helpful, if at all, for those involved in caring for someone with dementia.
As M’s main carer the important thing for me to accept is the dynamic nature of dementia. My responses need to take account of a number of factors if they are to be appropriate. When I get them wrong as I frequently do then we both pay the price. Confusion, created by an inappropriate response, can lead to the sufferer ‘lashing out’ and the carer being on the receiving end. Even the most mild mannered person can turn into a tyrant when their dementia is provoked by a well meaning carer who has just got it wrong at than particular moment in time.
I think it is worth giving an example to make my point. M is one of the most loving and gentle people I have ever known. Physical violence does not feature in her repertoire. Some months ago I was probing the fact that her underwear never featured in the washing basket. She explained that she was taking care of this aspect of her clothing. As this seemed unlikely I pursued the matter further, and further, until I received both a slap across the face and a vicious verbal attack. The point I am making here without going into further detail is I got what I deserved: my enquiries were shortsighted and insulting.
It is likely that Memory Tests of one form or another are used to classify where someone is on their journey with dementia. This is not the place to consider the shortcomings of testing: that will be discussed in another part of this Blog. The reader may well ask where does this leave the carer? How are appropriate interventions decided upon? What is the best way to approach the caring role? My simple answer is to attempt to minimise distress.
This post has become something of an aide memoir for me this morning. Perhaps today’s shopping list of possibilities is the only way forward:
- Attempt to make progress on clothes sorting.
- Allow M to sleep until she wakes.
- Restrict any form of external communication.
- Use music to lift mood.
- Build on any interests that M exhibits.
At this stage of M’s condition it appears that exhaustion is a constant feature: time will tell if this is a permanent, or temporary, aspect of her journey. I am unclear how attaching Roman Numerals or Gem stones to her medical records would assist me in any way whatosover this morning.
