As bad as the disease is, there are worse things when you are going through it.
- Keeping it a secret
- Not Feeling it’s okay to ask for help or cry
- Not Being supported by people that get it and understand
- Carrying on with your life and pretending it’s not happening
In my circle, my friends only knew grandparents with dementia and didn’t really get it. My dad had a condition but they didn’t see it as serious like what it really was, losing him.
The only way I could think of relating it to my friends was to imagine they lost their partner, close friend or something similar.
We all have the one support person that we lean on and for many, it’s not their parents but that wasn’t the relationship I had with my dad.
Most people won’t touch the subject which is sad and comes from fear but we aren’t broken or fragile. In the early days, I really welcomed anyone asking me. It showed me they cared what I was going through and you’d be amazed how you really can’t say much wrong, trust me we have thought of it from all angles.
You can make an inappropriate joke, ask questions, provide unwelcome advice, it’s all good. The worst is to side step it.
After awhile, it changes.
We no longer want to be the victim and what we really want is people to ask us how we are doing, instead of the patient and talk about something that gets our mind off it.
You don’t want to be defined by the situation you are in.
The difference to me was instead of people asking me how my mum or dad was, I wanted them to ask me how I was doing.
Only a few years ago, a friend of the family was on the phone and he asked how things were, so I replied with dads condition.
He then said “no, how are you doing?”.
I stopped and then broke down crying like a baby.
It had been years since someone really wanted to know.
Don’t underestimate genuine empathy.
The rare quality of someone that truly cares.
To this day, I can count those that have messaged me good thoughts on one hand and although we need to learn that others don’t know what to do, I won’t allow my close circle to suffer in silence.
Recently I watched a documentary on basketball star Michael Jordan and there’s a slot in that when his dad dies and he acquired a father figure with an older security guard.
In one example, he calls him at 2am in the morning crying and the father figure drives to meet up with him.
How many of us, have someone like that?
It made me emotional and aware of how lacking I am in a male role model/support person.
You don’t have to possess a high IQ to be aware that many people don’t have the family support that we all take for granted.
For years, I grew up with my parents and brother and when things changed it was striking the gap we all felt in the group.
How can others support you best? What gave you comfort? Did you mind answering questions and explaining the situation?