What I heard when Steve came home:
Let us know if you need anything
You are such a great person to take care of Steve
Make sure you take care of yourself so you can take care of Steve
What I needed to hear
Your life is about to change too
Nobody knows what they are doing at first
Stop waiting for things to get back to normal
Yes, I knew that logistically my life would change.
I was fired from my job, I would have to be home to take care of Steve, I could not just leave on a whim, go to bed when I wanted, get up when I wanted.
There were sleepless night, ER visits, ambulances called in the middle of the night, fear, unanswered questions and the list goes on.
Every little thing would freak me out so no I had no idea what I was doing.
We really thought things would be “normal.” I remember telling people when he was diagnosed in September of 2023, that our goals was to make sure we did our annual trip to Gulf Shores. It wasn’t until 2025 that happened and it was a nightmare at times.
If I had heard what I needed to hear I believe I would have spent much less time, confused, feeling guilty and alone, and looking for answers to a questions that would never be answered.
If you are new to caregiving here is on great resource for you – The Negative Space. It’s a nonprofit for caregivers that has a wealth of free resources and so much more. Please check it out!
Hang in there – you are doing a great job!