Also good to hear that you were able to take a break for a bit. The role of the caregiver is very difficult. Hang in there.
You need an outlet to help you keep it together and sometimes just being around a close friend can do wonders.
You two ain't kiddin'.
Really, I never thought I could be under this much stress. One of our members, 3404speed, either stops by for a few laughs or text's me just to see how things have been going. If any of ya'll know John you'll know he's a hell of good guy, with a helluva sense of humor. Helps take a break from the stress a bit.
But the stress is always there. I never realized. Ya'll who have done this for a while have my respect.
To be able to carry the weight of the world sometimes... I've done it before, but not like this. Sarah's shunts are what pretty much have her limited. Like I said, if they get damaged or blocked then it could be game over. Coma or worse, so when she's laying there, taking a nap, after she's worn herself out, I check her breathing to make sure it's got a steady rhythm. Most of ya'll can tell the difference between sleeping and passed out. It's like that. Which can be nerve wracking, to say the least.
Then there's the idea of having to remind her of her limitations. Which ain't easy, because it puts her in a funk. Took a walk tonight, just up the street a little ways. Had to remind that the further we went the further she had to walk to get back. By the time we got back she was tired out. And it wasn't that long of a walk. She naps, a couple of times a day, so you can see, sometimes I'm on pins and needles a lot.
Then, thanks to the location of the tumor she's not thinking things through. Last night she decided to make peach cobbler. She likes to bake and preserve the produce we grow and makes a killer pasta sauce she cans herself. So we buy sugar by the 25 pound bag at Sam's Club. It's easy enough to store and cheaper than buying it by the five pound bag at the grocery store. She pulled the 25# storage container out of the cabinet last night and drug it across the room before she realized that she needed less than a cup and she could have taken that out of the canister I keep sugar in for coffee on the counter next to the coffee pot. When things like happen it just reminds her that things
aren't alright and she has a tumor in her brain.
Then there's the options which lie ahead of us. We're both scared shitless, but I can't show it. I can tell her, matter-of-fact, with my best poker face, but if I show it... The first night I came home without her, when she was being admitted into ICU, it took all I could do to not give into the urge to just rip the house apart in rage. Still feel like that at times.
Because of her limitations we've had to scale back on things she enjoys doing, like working in her flower garden out back. One of her things at work was working in the gardens there with her group of patients. She misses it, so to hand her the garden claw - something she can use without having to bend over - and remind her to take a breather if she if she feels tired she's happy for five minutes, worn out, and taking a nap, which reminds her that things
aren't alright and that she's got a tumor in her brain.
Of course, with the scaling back of things she can do, I've picked 'em up. One of the things we'd do on the weekends was to clean the house from top to bottom. We'd divide the house up into rooms and chores and go from there. I do the laundry, she does any remaining dishes from the night before. She'd mop the linoleum, I vacuum and do the hard woods. She's clean the bathroom and kitchen, I'd take the living room, our bedroom and office. Sometimes we'd split the dining room, which mainly consisted of doing the floor in there and just tiding things up. Two hours, mostly, three hours, tops. Took me eight hours this past Saturday to do everything.
I don't even talk finances with her. I try not to. It's a burden she shouldn't even try to bear. Solvency will become an issue. Because she's out of work for who knows how long and since she needs the 24/7 attention I've had to close my shop. Ever since this started, that first day in ICU she's been apologizing for pulling me away from the shop, apologizing because she's not at work and the financial burden it will place on us. As you can see, that's why I don't even try to show her our finances. We've got our ducks in a row, but it won't be before too long I might have to shoot some of them in the head. Just don't know how long it might be before I have to pull the trigger.
Let's see. Emotional stress. Check. Financial stress. Check. Physical stress. Check. And whatever I'm feeling in order to ensure her well being she's feeling even more because she's the one with the illness and she's the one who feels that it's all her fault, even when we all know it's not.