I want to share a conversation I recently had with my sister, Jane. We were discussing what were the toughest times during Dad’s journey with Alzheimer’s disease. We talked about the aggression,paranoia and violent behaviour, and tough times in hospital. We then realised that some of the most difficult days were not in the obvious times, but moreso in the early stages.
It was the “in between” stage where Dad was really fit and to the general public he looked like any other healthy 65 yo man. But it was when he would walk into a café to buy a pie or a coffee and walk out without paying for it that things became awkward. He would spend hours in the hardware store without buying anything and would attract the attention of security. Dad would also hallucinate and see a reflection in a shop window and talk to the reflection. This is really difficult for the family member or carer as they are forced to ‘cover’ for the unusual behaviour.
Dad loves interacting with small kids and on occasions in shopping centres he would bend down to say “hello” to a child. Kids love Dad’s kind nature but on a couple of occasions the mother would swoop in and stand between him and the child or pick the child up and run away . One lady abused Dad and treated him as though he was going to abduct the child and harm them. This is certainly not the case and I was right there when it happened. It was an embarrassing moment where I felt guilty, and Dad was completely confused. I totally understand the actions of the lady (as Dad looked normal) but I just wanted to highlight the ‘flipside’ of how that felt from people just being nice to others. Incidents like those above often force families to stay home and no longer be seen in public. This is the stigma about dementia that needs to change!!!
I believe we need to reach a point where we can discreetly tell a member of the public that this man or woman has dementia, and they have enough understanding to be able to positively deal with the situation. This comes from education via media and people sharing their stories and putting it “out there”. Nothing will change until we do something different.
I am sure many family members and carers have been in awkward and embarrassing situations with someone with dementia. As a community we need to become ‘dementia friendly’.