To know or not to know?

Alzheimer’s – To know or not to Know?

After the diagnosis, what happens next? I was caring from a distance and my experience was that I was so busy dealing with the new situations that were constantly arising I had no time to find out some of the facts which admittedly were less accessible in 2000 than they are now.

However I think the question of having an awareness of the facts is a more complex issue.

  • The reality is that spouses are often elderly themselves and barely coping with the day-to-day problems that are arising. Their children are often living at a distance with busy lives themselves and have little time to do more than deal with the immediate challenges.
  •  Information availability: Now all the information is available on-line but one sometimes has to search for it.
  •  Desire to know: Many people faced with the depressing prospect of this illness may not want to know at this early stage, preferring to let things unfold.

 I think it may be a combination of these factors that may keep people in the dark.

Knowing what I know now I think it is better to know the big picture at the beginning and had I done so many of the fears I had would have been allayed. For example I didn’t know that there were seven stages that defined Alzheimer’s, what they were, what to look out for and where my mother was on this continuum. I didn’t know how long each stage was likely to last. As a consequence I felt I was always one step behind, desperately trying to catch up and fearing what was round the corner. Although information is freely available many people still find themselves in the position I was in.

  Is it fear for knowing what lies ahead?

 Maggie La Tourelle

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