I’ve had friends brush me off with things like: “Your father does not have Dementia lah!”. I’ve come to peace with this, and I only got there after realizing that it’s because they truly don’t know what happens ‘behind-the-scenes’. 

I’ve read testimonials of Dementia patients who say that friends tell them they don’t ‘look’ like they have Dementia. What does a person with Dementia need to look like anyway? They are essentially still the same person, except that their brains are a bit mushy.

I can only speak based on my experience with dad, and the best version of him is put forward when we are having a party at home, or when he goes out to church or when we visit friends, attend birthdays or dinner parties (pre-Covid-19). A lot of effort goes into prepping for such occasions. What people see is usually the best version of daddy. 

What they don’t see however, are the countless reminders of what we are getting ready for, who we are going to meet, the painstakingly slow process of getting him dressed and the repetition, repetition, repetition!  

On an ordinary day, there are countless conversations with him on where we currently live, dealing with his insistence of wanting to ‘go back’, handling past midnight ‘accidents’ during which he has mistaken the laundry basket as the toilet bowl, getting dressed at 2am to go to work, calling up relatives to ask about his long-deceased mother, etc. The list of antics is endless!

Again, I come back to my point that people who don’t live the same life will not understand what actually happens ‘backstage’. If you’re a carer of a loved one inflicted with Dementia and find yourself surrounded by people who don’t get you, my only suggestion is to let go of the pain and frustration that comes with others not knowing the full extent of what Dementia means. For friendships worth saving, it’s important to remember that they genuinely don’t know what it takes to care for someone with Dementia.

So, if people speak out of turn, let it go. Save the sharing of your stories with those who understand and who can relate.

If you are a curious reader who just wants to understand a little bit more about Dementia, go to the Resources & Inspiration section for a quick read on the disease.