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Quiet Time

One of the rarest privileges I have as a caregiver is quiet time.  When I’m awake, I am always listening for his,”Hey, Sweetie,” call that says I’m needed.  During my work day if I’m not taking care of his needs in some way, I’m working.  From the moment I get up…no actually, twenty-four hours a day, I am being called on to either meet his needs, work, or care for our home and personal needs.  Twenty-four hours a day EXCEPT for the time between 10:00 p.m. and when I wake him for dinner around 1:00 a.m. (though tonight I’m letting him sleep longer so I can write this.)
Those three hours are my escape time.  For those three hours, I know (most likely) I can do whatever I want without being interrupted.  During that time I usually finish whatever work is still waiting for my attention, I cook dinner, prepare his meal for the next day, make smoothies for the next day, clean the kitchen, take a shower, eat my own dinner while I listen to a book (my primary form of entertainment) and occasionally throw in a few other chores.  He used to get annoyed at me for letting him sleep so long but he’s finally realized this is MY TIME.  I don’t otherwise have any period of the day where the time is my time and mine alone. 
My time alone is very precious to me.  I don’t want to share it by making phone calls (not that too many people are up socializing that time of night anyway).  I like the opportunity to finish what I’m working on.  I like being able to finish a complete thought without being interrupted.  It’s time I have control of and I can use as I see fit.  Granted I am usually working, not relaxing, but just having control of the time is so much better than the frustration of constant interruption. 
I realize parents maybe thinking that it’s the same for them but it’s not.  With a child, they sleep better and longer hours (I’m up every two – three hours all night every night) and children often go to a friend’s house to play or be handed off to the other parent (if one is in the house).  Not so for me.  Even when others are here, I’m still the primary caregiver and still working around his schedule and needs so it’s not my time.  Therefore, when he talks about making me promise to get him up after two hours, I just can’t bring myself to do it.  I think he’s finally gotten the message that these three hours are my sanity time.  If I didn’t have them, I might actually be bald from pulling my hair out or have had a break with reality.
He’s been asleep now since 10 p.m. so I really do need to go get him up for dinner plus I will get up too late in the morning to have a full day if I don’t get this last job of the day done… so I have to bring this to a close…but I love this time so much that it’s really difficult to bring it to a close.
Oh, well,….

Time or Just One Continuous Move Forward?

Are you the type of person who keeps a calendar and checks their watch several times a day?  I am.  Since I can remember, I have been a clock watcher. I always had a sense of what time it was and what day.  Not that I was always punctual but I always had my schedule somewhere in my subconscious. 
I’ve found that keeping track of time is one of the things that seems to be “slipping” as a priority now that I’m a full-time caregiver.  I don’t even wear a watch anymore! When I first started taking care of Lynn full-time (meaning doing almost everything for him) I tried having a schedule. I even wrote out a treatment schedule and recorded when I gave certain treatments and when I did catheterizations, breathing treatments, etc. After a few weeks, I found that was a task that was just not necessary. Things would get done when they got done.
Why this change in philosophy?  Mainly because being flexible is essential to survival.  When we get up is contingent on when we go to bed and how often he gets up at night. When we go to bed is determined by how many times I was interrupted by him during my work day which influences whether I stop working at 7 pm or, like tonight, at 11 pm.  When we eat depends on what needs to get done when and how hungry we are.  Sometimes I get up and shower, fix his breakfast and supplements, then fix my breakfast, help him with his exercises and then help him with tolieting.  Other days events happen in the reverse order.  Sometimes it takes two hours; sometimes more than three.  If I try to keep a schedule, it just produces stress and frustration.  I’ve actually started setting a timer if I need to call in for a conference call at work because I often have no concept of what time of day it is.  I guess that happens, too, when you actually, truly, never stop in a twenty-four hour period. 
Work twenty-four hours?  Everyday?  How can that be?  Well, when you think about it, the only time I’m not working at either being a caregiver, employee, or housekeeper, is when I’m asleep but I only sleep two 1/2 hours at a time usually before I have to get up and be a caregiver again.  I take a series of naps instead of sleeping straight through the night–sort of like being a new mom.  Sometimes I’m only up for 15 minutes; other times it’s 30-45 minutes.  Lately it’s usually just 15 or 20 so I’m getting more sleep than I used to but if you can’t go to bed and sleep straight through the night does that count as an actual night’s rest?
I know I get rest but I still feel like I’m on duty all the time.  I guess it’s like being a medical resident.  A medical resident works all day then is on call all night.  How much sleep they get is dependent on how much the patients need them.  They might catnap or they might sleep a couple of hours but they are always “on” and when the next morning rolls around, they are back to work, the same as if they had a full night’s sleep.  That’s me!
So for a caregiver, time is irrelevant.  It doesn’t matter what time of day it is or what day of the week; you are “on duty.”  Weekends are just another day, more or less; and 3 a.m. will often catch you doing what you did at 3 p.m. ….so who needs a watch?