The big misconceptions from others is that we either
A) don’t want to talk about it
B) it’s all we want to talk about
C) you will upset us
D) questions are not welcome
You can almost say nothing wrong.
We have had all the thoughts and have had to ask all the same questions. The key is just empathy. Those that really care about us, we see and appreciate it.
It’s more about emotion and understanding than the actual words.
I’ve been floored by certain hugs or those asking simply “how are you managing?”.
Sure, at some point we no longer want to be the victim that’s identified solely for their situation and the head tilts can seem patronising but still it’s not the end of the world.
- Ask the questions on your mind
- Ask them how they are/ not just patient
- Ask them how/ if you can help
- Small acts of kindness go a long way. A cooked meal, a visit or a message of support.
The worst will come when the ‘crisis’ is over and the support tails off, yet it continues for the family over a prolonged period of time.
It’s been approx 8 years for us.
What questions do you have for a caregiver? Or as a caregiver, what would you like to say to those unsure on how to approach the condition?