If you prefer only happy thoughts, you might consider by-passing this post. It's not depressing, but it is 'real'.
I'm tired. I'm just so tired. But I keep going because that is just what you have to do. Sometimes I feel alone in my own body. As you can tell, I am a bit overwhelmed today. I get this way every month or so. Russ will do something that completely flamboozles me. He remembers the oddest details on good days and I become complacent. Then an 'off' day careens into us and he can't remember or just doesn't care to remember an important detail 3 minutes later. I am left with the task of trying to figure it out. I get dumped on and because I don't have PD and am the loving caregiver, I am suppose to brush off the hurt and sadness, love him up, even though he just 'threw me under the bus' and go on with the day. I have to tell you, that's hard!
When I'm anxious and afraid it drives my tried emotional state. This in turn can twist my relationship with Russ and interfere with our finding things to be joyful about. In my exhaustion I am even too tired to care for myself. I give any energy I do have to Russ and sometimes that isn't enough.
Parkinson's or not, everyone has rough days, days when emotions are stretched so thin we are barely holding on. Most people though hide those days from the view of others. I do too actually, hide the uglies from others. But Russ sees my frustrations, always he is witness to them He knows he is mixed up, I know he is mixed up, but that knowledge doesn't make it easier to get through an 'off' day.
Usually our flair ups, complete lack of communication and understanding, come when he is bored. He honestly is amazing in how he handles sitting, sitting, sitting. He reads and watches TV and that's about it. There are of course the occasional distractions of a game, a chair cruise around the 'hood, a bike ride or just out for a little car adventure. But they only take up so much time in a day. Where we butt heads is often through technology or a job he suddenly HAS to do. When he's bored he often goes online and watches dumb, dumber, and dumbest. Did you know how addictive YouTube is? And he will feed right into it without moving for a very long time. I honestly wish I knew how to put a lock on youtube. Funny, as it is my new best friend when it comes to home repair!
But YouTube algorithms use every click, every video implusively watched to tailor your viewing and they seem to have been stunningly successful. YouTube algorithms aren't built to get you what you want but to keep you watching and I know when Russ has been quiet for an extended time I had better check in. Does that remind you of a toddler?
Boredom also awakens his need to create. At 3:30 yesterday that need drove him to 'need' to put another coat of varnish on his beloved live edge porch bench. He made it years ago and we both love it, but rain demands a periodic sanding and varnishing; not easy with such diminished fine motor skills. Not easy when all must be accomplished sitting down in a wheel chair. Not easy when you have to wait on someone else (me) to do all the prep and set up. So at 3:30 a big project began. First: move both cars out of the garage, spread out a drop cloth, get out sandpaper, varnish, paint brush, move trash bins to access dolly, take dolly by way of the street to the front of the house, load bench on dolly and strap it on, return to back of house and garage, place bench on drop cloth, get Russ in place and ready to sand and varnish. There's a half hour of 'waiting' for Russ which is hard because when he thought of this idea to alleviate boredom he wanted it to happen immediately. I pulled up a chair, got out my laptop and left him to the task as I began this post.
All went well except for one blip where he suddenly bent forward and stayed there..."Russ! Russ!" I flew over (another reason never to leave him alone) and he had tipped forward in his chair and just did not have the strength to sit up.
He is not happy with the end results, but honestly, he did the best he could and made an effort. I may not have been happy with his timing, but he is still trying...a gift. I'm not sure what to do with it all. I suppose it is like I said in the beginning: he keeps going because that is just what he has to do. I keep going because that is just what I have to do.
A note on 'the rest of the story':
He was so unhappy with the results of the bench that I offered and he accepted that I take on the project. I spent a couple hours this afternoon (while he was napping) sanding and scraping. I will wait til tomorrow to begin varnishing.
And thankfully I have regrouped. Sometimes that tired anger just has to slowly dissipate. Sometimes it takes a good book to get lost in. I finished one last night and just ordered The Paris Architect by Charles Belfoure. It's a favorite and I will reread it.