Because I have a lot of caregivers following this blog, I wanted to follow up on the blog, where I mentioned the visits decreasing. A lot of your resonated with it, some people just flat out didn't like it, and others really absorbed it.
Over the past month, there's been a great reconnect with some of our tribe, and it's been a beautiful thing to have people reaching out again, and let me tell you the help between family and friends visiting has been amazing! I'm finally catching up with things that sort of fell apart this year. This year had some very harsh hospital visits, that have kicked me off my feet. So, to everyone who has helped me stand back on my own again, thank you!
This is why I'm writing this blog, the other day a friend said something to me, that I want to share with everyone. "Hope, a lot of us thought you two needed to be alone to get through this, or that Steve needed to be resting and not have visits; you putting yourself out there gave us the okay to reach out to you. It was what was needed, people needed to know you want us here."
Of course after this, I had to process some things, and it dawned on me; that after 5 years of this I'm still not very good at saying, "Help! Hello, I'm drowning here help me." I sort of just expected everyone to know it. Speaking my truth to others really lets them know what they can do for us.
So if you're a caregiver that is in need of something, chances are others aren't going to think of it on their own. It's not a bad thing, it's just no one understands exactly what it takes to be an ALS caregiver, unless you've been through it yourself. So allow me to encourage you, ask for help when you need it, tell your people you need visitors, etc.
For those who have asked about Steve's status with visitors. He loves them in small doses. What I mean by that is, he loves having people around but he will get tired, and he has no shame in kicking us all out of the room when he does. Don't feel like you're going to make him sick or wear him out, because when he's had too much, he will tell you. No two days are the same either, so of course there may be that really bad day where he wants to be alone, but having people to talk to other than just me, goes a long way in quality of life for Steve. I would imagine this would apply to any bed bound patient.
So there you have it, I'm always learning and growing; and one day I will be an expert in the art of asking for help. Truth is, I can't expect people to know I need something, if I don't ask.