(Originally posted in Facebook on February 22, 2019)
There are days . . . and then there are days. I think I’ve taken more deep breaths in the past 24 hours than I have in my entire life. Not sure if it’s helping, but maybe I have plenty of oxygen?
Yesterday turned out to be not a very good one for M. He was in a lot of pain because of the lumbar puncture attempts and stayed at home all day. He also made the decision to NOT try a 2nd time for a successful spinal fluid collection and had me cancel his appointment for today. I left for work yesterday a little before 7:30 am and he called me right after lunch – after 1 pm – to say that his back was really hurting.
Me: Have you taken any more pain pills?
M: Not since you left.
Me: That was six hours ago. Have you eaten anything?
M: No, not since you were here.
Me: What have you been doing all morning?
M: Well, sleeping . . .
I could tell by the vague way he was talking that there was no way he could pull together the pain pills AND lunch, so I called my dad and he got M a take out lunch and drove it by the house.
When I got home from work, close to 6 pm, it was the same situation. I woke him up and he was in pain because he hadn’t taken any medicine since we had talked at 1 pm.
He did better through the evening, but when it came time to go to bed, I was trying to turn off the TV downstairs. But I couldn’t find the remote for the Firestick. When I asked M about it, he said he had taken it upstairs to the kitchen. He brought it down to me, but it didn’t work – it wouldn’t make any of the channels turn or get out of any of the apps. I changed the batteries – nothing – and finally gave up and turned the TV off.
When I got up to the kitchen, it was a mess. Everything M had touched was left exactly where he had last had his hands on it . . . and I just came apart. Something inside of me broke and I realized – this is how it’s going to be, from now on. I’m going to be spending all my time cleaning up behind him.
I was in tears and called my brother who lives in Charleston. Thank God he was home and answered the phone! We managed to find things to laugh about and I hung up feeling much better about everything. He reminded me that my house doesn’t need to be perfect and that I need to let the majority of my OCD tendencies go. They’re not going to work with everything else that’s going on in my life right now. He also pointed out that living with someone with dementia is kind of like having a teenager in your house again – every day that goes by and you don’t kill them is a victory. (Kidding!!)
This morning I found a second Firestick remote in the kitchen and realized exactly what had happened. M brought BOTH Firestick remotes – one from our bedroom TV and one from the den TV – to the kitchen and then gave me the one from our bedroom to turn off the den TV. This morning, I switched them out and they worked perfectly.
He woke up with a headache and his back hurting again this morning, so he’s still at home, in bed. I have a feeling he won’t be working much longer, and that’s probably best. It makes me so sad to say, but this horrible disease seems to be progressing so very, very quickly. It’s almost as though I can see him changing on a weekly, if not daily, basis.