I have so much going through my mind today that I find my emotions on the surface for no real reason other than overload.
We’re having friends over for dinner tonight. They are bringing the meat and I’m doing the vegetables. This is a couple we really enjoy being with and can be ourselves with so why am I feeling overwhelmed? Maybe because it’s 1:30 p.m. and I haven’t been able to go to the grocery store yet to pick up the vegetables. Maybe because in the course of writing this paragraph, I’ve had to go back to the bedroom twice where Lynn is supposed to be resting. Once because “I’m ready to get up,” but he changed his mind. Once because “I need you to push my toes” (releaves muscle tension) and again now because, “I’m ready to get up now to peddle” and each time he calls me I go back there and he is snoring….but insists the minute he opens his eyes that he has not been sleeping and must get up because his legs are aching so much. I’ll be right back…
It’s now 3:41. Yes, I have been helping Lynn with one thing or another since I wrote the last paragraph and can now resume where I left off. I’ve cathed him, given him his two MS shots, gotten him dressed and into his wheelchair, connected him to his peddler, given him his nose spray twice, adjusted his clothing for comfort five times, heated up his lunch (eatten mine as his cooked), fed him, cleaned up afterwards, cathed him again, answered some of his emails for him, put the dishes away and sat back down to write this again. Oh yea, and canceled our dinner plans. He’s achy and can’t get comfortable; he’s sleepy and irritable; just not a good day for company. What’s wrong? Probably the change in atmospheric pressure. We have been having the weather go from hot to cold to hot and now back to cold and when that happens, it wrecks havoc with his system so it’s not a good time for company.
Though disappointing, not having to worry about getting ready for company is actually a relief today. It’s fun when things are going well but not when they aren’t. We had plans today to have the dinner tonight and to go to the fabric store and Lowes this morning to get things for the device he’s building for his legs to move in bed. We didn’t do that either. His stomach was grumbling and questionable. He was very tired and I was on the edge of tears most of the morning just trying to get chores done so we could go. When life gets like that, it’s just better to stop and let it go. Maybe tomorrow we can go those places; or maybe not. He had his Avonex (IM MS drug) today so tomorrow he will feel achy like he has the flu so it might not be a good time to try a trip then either. We’ll see.
The other stressor I’m feeling is that next week I have to start finding a way to go into work some. Yep, the full-time working from home has come to an end. I’ve been blessed to have it for a full year after his initial hospitalization but my supervisor asked me, very gently and kindly, if I could find a way to start coming in more often. She was very nice about it and certainly didn’t have to be; after all I have an important job there and I’m needed so they have been more than accommodating. In fact, she still is. She isn’t making me come back there full-time and suggested trying once or twice a week for a few hours to see how it worked.
I have to admit, I have very mixed emotions about going back.
Worries: Who will stay with Lynn? He wants me to go in on either Mondays when his son, mother, and sister come to visit or Thursdays when our friend comes to help him with his writing and book marketing. That makes sense…he’s comfortable with all of them and they all have an idea of what to do for him but now it will go from them “wanting to come” to my “needing them” to come. I’ll need back up plans for if they are sick or have something else to do so that will add pressure every time I plan to go in…will they come? Plus none of them can cath him so I’ll have to put in a foley. Foley’s are more irritating and cause urinary track infections easier due to the irritation and direct access of the catheter from the outside of the body to the inside. We’ve had one really bad experience with a UTI which landed him in ICU. I learned from that but it has left its scar.
Plus getting ready to leave him is always a lot of work; getting meals ready, comfort items set up, and providing him with emotional comfort. He has a lot of separation anxiety when I leave him and he can’t help but to show it which makes me feel guilty of course. If I decide not to use family, I’ll need to find someone to come in that he likes and we can afford. That means researching what our insurance will pay and the different care options. Ugh, just one more task.
Pluses: On the other hand, I’ll be able to get away. I REALLY need to get away. I can feel the stress build up of constantly having to stop what I’m doing to scratch, adjust, fetch, move, etc. I miss the people I work with. I miss doing something that is productive and is an accomplishment. I miss interacting with others and I need to be able to get away from “Hey Sweetie!”
I think going back to work will be a good thing. He needs to learn to let me go and I need the break. I hope I can handle the extra work though. To go into work means I’ll actually have to work more hours. Currently, I can just go to my desk in my living room and begin work. Now, I’ll have to get myself ready and get him ready and drive the 45 minutes – an hour (depending on traffic) to my job and back so all that will be lost time I’ll have to make up. So in order to work two hours there, I’ll have to make up four hours when I get back home or on the weekend. If I go in twice, then it doubles. It will certainly be a challenge but somehow I’ll make it work. I have to…so I will.
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Caregiving can leave you so focused on the person you care for it feels like you are blindsided when something or someone else changes the routine, at least it always has for me.
“I’ll make it work – I have to” … ain’t that the truth.
Caregivingly Yours, Patrick