Time

it's time, give me a minute of your time, it's timeless, it's timely, forgotten in time, timed-out, half time, double time, just in time...  Sitting up there in Chicago waiting for time to pass, I knew that I would probably be sitting at home again soon wondering about the reality of things past.and here I am, doing just that. What on earth is time? We know how to measure it in different ways, but what is it really? I think it is a hard thing to answer, but even harder is thinking about time being created, and what it was like before it was created.  Sometimes when I can't find answers to my questions about God I think about him being in a timeless world where everything happens at once and it helps me know that I don't know very much about God at all. As weird as time is, it's actually a simpler way of living than anything else I can imagine and that's why I think God put us in time. It's sort of his gift to us when things are hard - we can know they won't last forever. And the good things we don't want to end? Well, if things were always good, we'd say good compared to what? Maybe this variety of good times and bad times and in betweens is what makes us change and grow, especially if we believe that there is purpose to be found in this strange collection of seconds, minutes, hours, days, years.

I never intended to eat six of my Lindor dark chocolate truffles, but a wrapper count shows that it happened. I finished the bag which is sooo easy to do. When I get done with a hard thing, like the trip to Chicago, I tend to max out on relief items. I am just so relieved to be sleeping in my own bed, driving my own car, finding something in my refrigerator (other than all the vegetables that rot/dry up while I'm gone), making more of my own decisions, petting my cat... Even cleaning and doing laundry seem somewhat precious to me. And today, since I am planning my second Thanksgiving this one with Julie, I baked pumpkin pies and put my tablecloth with pretty autumn leaves on the table.

We got home last night around 6:30 and I gave all the passengers waiting at the gate one last show as I stripped the packing and duct tape off Tanisha's electric chair and put it back together again. I even got a couple volunteers who thought it was so interesting what I was doing that they had to join me.  I was relieved that I got the parts all joined again and that it worked when I put Tanisha in it.  She makes such a big deal about it costing $30,000 and how careful we should all be when we touch it.  I was relieved when she and all her stuff were in the van with Michelle and leaving the airport - without me.  I was glad Dennis came to pick me up and take me home. And I was glad I got to sleep till 7 this morning before Tanisha called and asked me to come to work at 9:30.

Will the time ever come when we have more help? Will the time ever come when I will feel free to leave Scottie's employment? Will I instead be going back to Chicago again if her mom dies and there is a funeral to attend? I know I can count on time making changes in my life even if I don't know what the changes will be. And when I think of God being a constant, because he says he doesn't change it makes some sense to me, because he doesn't live in time like I do. It's just a thought...

Travel days

Travel days are the worst.  Coming home travel days are the worst of the worst.  Tomorrow we are traveling home and although I have been kind of packing all day I still am fighting to keep panic away.  You would think that a departure time of 2:30 would not be a problem, and it wouldn't be for most people, which we are not.  We are not most people. The biggest drawback is that we use almost everything we have brought on a daily basis, which means we can't pack it until we are done using it in the morning. Tanisha's morning routine takes 3 hours when we rush. Packing will take another hour. Loading up and the trip to the airport is another hour long process at least. And we should have three hours minimum at the airport to check in, wrap the wheelchair and get boarded. That's sounding like about 6 in the morning, groan...  Going this direction we don't have extra help through the airport security or getting the chair ready.  But by 7 pm tomorrow, if all goes well, I could be home and I have to say that gives me hope.

On sleeping...

I really have no idea what's going on when I'm sleeping. The things I think are happening are really going on when I'm kind of awake and able to be aware of them. This is a frequent source of argument between me and my employer. Four out of five days of the week she'll greet me with "I haven't slept a wink since 2 am" or something similar. Doesn't she know that I've been listening to loud snoring on the monitor for over an hour? Was it the cat? I don't think so. Here in the motel room she calls the shots on what noise is allowed when she's trying to sleep and she is sure that she hears my phone vibrating with email notifications - because she hears them when she is awake. And why is it that I must tape, clothes pin and block every stray beam of light from the windows, doors and electronics when she can fall asleep with all the lights on as I'm getting her ready for bed? Some nights when I'm turning off the lights she says "you can put a towel on the floor to keep light from coming under the door" ( because I sleep by the door). I now tell her " no thank you, I'll just close my eyes. It's easier." And I'm thinking that she'd better close hers too.

Most of our hotels have a short hall as you enter the room with a bathroom door and a closet opening onto it. That's where I usually sleep, on a rollaway. And that name describes the only thing it does well - rolls away. It is not an aid to sleeping. The frame is most often made of metal and comes folded in half with a mattress and sheets inside. After you open it and remove the torn sheets from the metal hooks, you will never get it to go back with mere human effort. And the springs, if you want to call them that, are little more than a noisy, wire hammock that will only support a medium weight child,. The mattress might be ok, and I usually drag it off and put it on the floor. I've often marvelled about the floor part, because the floor in a motel is a lethal, dirty place. Anything of Scottie's that touches the floor gets thrown away (preferably) or washed.  Yesterday a few pills fell out of an envelope onto the floor and she said she was tempted to pick one of them up (the one that cost $5 a pill) so I scooped it up according to the 3 second rule and put it back in the bottle. This hardly. ever. happens. So, what does she think about me sleeping on the floor, in the hallway, with all the germs? I don't know.

Another noise issue is the room air conditioner. We give ac units a real workout, switching them from high heat to high cooling multiple times during the course of a night. I'm used to having to put pillows around them to direct the breeze away from her bed because she doesn't like to feel moving air, or so I thought. This motel has a fairly quiet unit that doesn't blow toward her bed at all and now she's having me put pillows to hold back the curtains so she can feel the air. And she's really pretty sure the unit isn't working because the condenser isn't loud enough and doesn't cool the air enough. Two nights now she has told me to keep the ac on when we go to sleep.  It blows right over me on the hall floor and don't I know it's working! Brrr... She is usually freezing and wears a stocking cap to bed. I can't figure it out.

Only one day left in Chicago and one day traveling home. We are beginning to get on each other's nerves, which happens regularly at the end of our trips. I'm used to it but it's not fun. She gets more critical and controlling, and has to dictate my every move. It helps me somewhat to write about it even if no one ever reads it. That's why I just have to say...

Day 5 writings

I just have to say that there are worse things than being alone. In fact on this particular trip I spend a good bit of time looking forward to being alone. We have been in the hotel four nights and three days now and about half of our trip is over - yesterday was the top of the hump. There has been no talk of me going with Tanisha to see her mom so I have afternoons to myself at the hotel. Every morning starts with a hectic rush to get ready before the transport van arrives.  This morning I ate my fake scrambled eggs standing up looking out the window. There is very little eating time in the morning but I do go to the breakfast bar and load up on food for later.  Tanisha eats sometime after I get her up in the chair. As we work our way through the various elements of morning care the room gets messier and finally arrives at tornado look-alike status.  I think this is part of the reason she doesn't have me come along - who would clean up the mess while we were gone, and how awful would it be to come back tired at the end of the day and have to deal with it? So by now I know all the housekeepers, desk girls and janitors at the Hampton, plus a few waitresses at Cracker Barrel where I hang out for supper. I feel a little sorry for Tanisha when she comes back and tells me about her day and how she had to fend for herself, but no, she was the one who wanted to do this, right? She spends a lot of time watching her mom sleep.

Her mom is staying in the hospital to get intravenous feedings. She has lost her appetite completely and lost a lot of weight so daughter Taylor insisted that the doctors do something about it, even though they didn't think this was the best idea.  Mary is so weak she doesn't get out of bed very much.  She is actually about the right weight for her height now but Taylor and Tanisha are both thinking about malnutrition. Tanisha heard that more cancer patients die from that than from the cancer itself so she has been sending her mom nutrition bars and vitamins and other things sick people don't like to eat. It's sad that Tanisha wants so badly to do something to help but there's not a lot she can do. 

Thanksgiving came and went yesterday. After I cleaned the room I took a nap, sort of.  Then I finished reading my book "Fuse of Armagedon", which I should have been reading on my Kindle, had I not lost it on the airplane. ( I have to say that it's very frustrating trying to figure out how to get people to look for something from afar off.  It's probably still on the floor under the seat, but I'll never find it and that is sad.) I made myself dress up around 4 pm and went over to Cracker Barrel for dinner. There was a line but I didn't have to wait too long to be seated. The waitress said they had been full since they opened at 11 am so I'm thinking this was a good year for them. They must have had a LOT of food stored up somewhere to not run short of anything. The meal was pretty good, except there were no cranberries which is one of my favorites for Thanksgiving. I will make up for that when I get home. There was sweet potato casserole, cornbread dressing, green beans, biscuits, turkey and gravy and pumpkin pie, all in acceptable quantities so I did well without getting overstuffed. I was aware of being alone when most everyone else was with family but that is how I am fairly frequently so I'm used to it. The rest of the evening I spent on the phone, facebooking and looking for something decent on tv.

The transport guy brought Tanisha home around 10. She was tired and out of sorts (I know what that means, but what on earth is a sort?) and spent the next several hours dictating my every move and breath. She says my name a lot - "Get me a washcloth Shirley" "My hip needs to be higher on the right Shirley", "Shirley, put the fan on low cool " as if there's someone else around who might jump to do it first. It always sounds odd to me. And there were lots of little things to argue about which she loves to do when she thinks I'm not obeying her exactly. As much as I do like her at times, I'm always relieved at night when she is finally covered up and snoring away. Which brings me back full circle - when it comes to night duty with Tanisha, there are worse things than being alone.

this rainy day

It has been rainy and cold in Chicago today. That's why I've stayed in the motel, well, that and having no place else to go. Now that I've decided to write I'm sure Tanisha will come back any minute but I just have to say a few things about how crazy it is to travel with this disabled lady. She calls me and others like me "able-bodieds" like we were from another planet and should be punished for being here.  Yesterday my punishment was flying up here to Chicago with Tanisha, her hoyer lift, her manual wheelchair, two Roho cushions, her $30,000 electric wheelchair, the battery charger for said chair, 4 suitcases, 3 carryons, a bag of lunch, 3 eggcrate mattresses, a set of bed risers, and numerous pieces of bedding. As we passed laboriously through security (challenge number one), one of the workers asked which airline we were flying on and did they know we were coming with this much stuff. Of course they knew we were coming. Tanisha had been making calls all the week before to let them know.  As we got to the gate over an hour early and started our wheelchair wrapping project we actually collected an audience.  Michelle and I piled all of our loose "stuff" into the electric chair that Tanisha had just vacated and wrapped it with the eggcrate mattresses and a whole roll of duct tape. It was a work of art, complete with warning signs lest anyone should turn it on it's side, bump it, or mar it in any forseeable way (challenge number two).  It was a relief when the baggage guys came up and took it away. They always say they're going to be extra careful but when you have to put something weighing 420 lbs. in the hold of a jet it always results in some damage.

The next challenge was at the end of the jetway where we got Tanisha into that skinny little chair with no arms and three or four people disappeared with her into the plane to get her seated. I'm glad I don't have to be there to witness that - there's never enough room for me to do anything to help. I stayed out in the jetway and broke the hoyer and manual wheelchair down into pieces I thought the baggage guys could handle and off they went. They also took two of our larger carryon suitcases just to make it easier for us. Airtran charges for anything you ask to be checked - $20 per case. But if they decide to take it themselves you don't pay anything.  And this is very good for us because we always have more than we are really allowed to carry on. So after the equipment and extra bags disappeared we actually looked like we were following the rules. Tanisha had been lifted into an aisle seat. In Airtran planes one's knees always touch the seat in front so after stowing our remaining bags in the overhead bins I did my circus act and bounded over Tanisha's legs and settled in for several hours of avoiding her wiggles and stretches. In Chicago everything had to be reversed and put back together again. I was amazed that I remembered how it all went. Our journey started at 7:30 in Sarasota and ended about 9:30 in Chicago. By 10:30 we were in the transit van headed to the hotel. I still had to unpack, set up the room and get Tanisha to bed. My phone clock said 3:20 am when I laid down to sleep but it might not have adjusted for the new time zone yet. I am getting better, quicker and more experienced each time we do this - I can tell.

For instance, experience has taught me to avoid the roll away beds that they bring us. I just take the mattress off and lay it on the floor. It's better for my back and much quieter. She slept until almost eight and I felt pretty rested too by that time. We needed it. I spent the day after Tanisha left cleaning up the room and reading. Looking out the window at the rain and just relaxing was a good break from yesterday's madness.

 In the midst of looking out for all of Tanisha's stuff I managed to leave my new Kindle in the airplane. This is really sad for me - I hadn't even gotten over the thrill of having one yet and now it's gone.  I've called the lost and found but I'm counting it as loss and not expecting to see it again. All for today.