Reassurance.

As a caregiver, I am often conflicted. I can be angry at my situation. I can be frustrated. I can be bitter. On one hand, I want someone to be on my side, but I also don’t want you to think poorly of my loved one. I know, it doesn’t make sense…

At the beginning of this journey, I was very protective of what people thought of my husband. I found it hard to articulate to someone outside this space how I was feeling without them thinking poorly of my partner. I get it – from their perspective I was hurt, I was carrying a heavy load. I was their friend, they wanted to be on my side.

I am always thinking over everything the moment we step out of the door. Is he okay – will they judge what he’s wearing – will they judge me for what he’s wearing – will they talk to him – will they talk to me about him – will they ask me questions to intentionally put me on the spot about our life? I get nervous that someone is secretly thinking poorly of him if he says something out of the ordinary. If he acts a certain way, if he says something different than the others. I’ve had people look strangely at me, as if I would agree with their assessment of his oddity.

Everyone comes to the table with their version of “normal” and when someone acts different, people become uncomfortable. How do you talk to someone who might be different? Who might hold different ideas, or has a different story?

I think that’s why I kept to myself for so long – I was afraid of the reaction and the judgement. I still am. I’ve had some cruel things said to me, even if the person was saying it because they cared. I do understand though – when you aren’t in this space, you don’t see all of it.

I think for caregivers this must be an ongoing battle – to share your frustrations, but also want to protect the person you blame for the frustrations. I don’t know if it will ever change, but just know that if I, or someone like me, looks worried… a reassuring smile or hug would do a world of difference.