Has Anyone Seen My Magic Wand?

When you are a caregiver, you learn to multitask and plan ahead… or you don’t survive. Once you get good at doing these two things, then others, especially the one you’re caring for, seem to think that you can do anything…like magic.
It mystifies me that I can tell Lynn what’s on my “to do” list and thirty minutes later, he thinks it’s done.  He has no concept of how much time it takes me to accomplish a task because he has no idea of what happens when I go to do a task.
Let me give you an example which will be very familiar to many of you:  going to the kitchen to get a snack for him after finishing his bath. It goes something like this…
Lynn:  “Donna, can you get me an apple and some hot tea?”
Donna:  “Sure, in just a minute.”
I  prepare to leave the bedroom but before I do, Lynn wants just a quick adjustment to his clothes, then he needs to scoot back in his chair, just a few squirts of nasal saline (more like 15 per nostril), then another adjustment, change the channel on the TV, and close the door to his room to keep the heat in. Leaving the room, I gather the dirty clothes discarded after the shower and the empty tea mug.  Going down the hall, I realize he’s almost out of shorts so I stop to get the dirty clothes from the hamper, dump them and the other clothes in my arm in the washing machine and start a load of laundry.  I prepare the tea and put it in the microwave to heat up, wash the apple and slice it into pieces he can hold on his own, rinse out the dishes in the sink, load the dishwasher and start it washing. Meanwhile the tea is ready, I transfer it to the mug he can hold, add favoring, put the apple in a small plastic bowl and take his snack back to him.  As I’m heading down the hall he’s saying, “Donna, did you forget my tea?”
Now, to his way of thinking, I only got his snack, but in reality I was evaluating future needs, planning and putting that plan into action to prevent problems later on so that miraculously, he does not run out of his favorite shorts and socks and he always has access to the dishes he can manage on his own.  Just like magic.
What brought magic to mind was that he got a call today from a relative who wanted to stop by and see him on Sunday.  I had taken him the phone so I knew he had talked to someone.  When I was in the room later, I asked him who called and what the call was about.  He told me it was someone he rarely sees and then casually mentioned they were coming over on Sunday.  I stopped dead in my tracks, “Sunday?  Are you kidding?  What are you thinking?” (yes I was a little put out).  The rest of the story…Sunday, we have tickets to go to Virginia Beach to see a Rush concert.  It’s a two-hour drive down there and we plan to leave at least three hours before the concert.
Lynn’s response:  “What’s the problem?”
Me:  “The concert is Sunday.”
Lynn:  “So?  They’re coming at noon and we don’t have to leave before four.  We have plenty of time.”
Me:  “They rarely see you. They aren’t likely to just come in and immediately leave.”
Lynn: “They probably won’t stay more than an hour.  That gives us plenty of time.”
And that’s the statement that got to me.  “That gives us plenty of time.”  For him, going to the concert just means driving his wheelchair out to the van and climbing aboard.  For me, it means, getting us both dressed.  Preparing him food to take with us, packing layers of clothes because the temperatures are supposed to drop. Packing fluids, medications for spasticity, and other meds “in case of;” thinking through what all he will need for comfort; figuring out how to get everything packed in as small a bag as possible. Getting the van gassed and ready to go, getting directions, making sure I have the tickets, spare money for snacks, emergency supplies in case we break down; and since we’ll be getting back late, planning for what we will need immediately upon our return so we can get to bed as soon as possible.
I have a load of things to do before we go but for him, it’s just a matter of going and all his needs are met. It’s like magic. .. only it’s not.  It takes a lot of hard work and planning.
As a woman, doing many things at one time is natural.  I’m always doing more than one thing at a time; but it’s different for men.  My Sunday school class read a book called, “Men are waffles; Women are spaghetti.”  It really opened my eyes to our differences.  Men do one thing at a time (except if at work. For some reason, at work they can multitask.  Go figure) While they do that one thing, that’s all they do.  Their thoughts and actions stay in that little block of that section of the waffle and they don’t think about the next task till the first one is over. Women, on the other hand, are like spaghetti.  Everything touches everything else and the tasks overlap, clump together, weave over and under and are blanketed in sauce.  That’s just the way it is for us. 
Actually, I think caregivers, men or women, are like spaghetti.  Everything touching everything else;all things connected.  It just has to be that way to survive and to be able to get done all you have to do.
….Oh, yeah, that and the magic wand we’re all given when we take on the caregiver role.

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Rush to RUSH

Lynn’s favorite band every is RUSH.  For years, him, his son, his son’s friends, and Lynn’s friends have bought tickets to their concert as soon as they went on sale and anxiously awaited the day they could see them live.  It used to be a fairly big production with a group of 5 or 6 guys spending the night at our house after the concert and reliving the experience while they blasted out RUSH songs as if the concert was still in progress.  He always wanted me to go with them but I am not a big fan of concerts and had rather listen to Christian rock or country music so I would just smile and decline.
He finally convinced me to go to RUSH’s 2010 concert.  By that time I had heard their songs so much that I had learned to appreciate their music, though not as much as Lynn did.  The concert that year was during the time that his health was starting to decline.  I remember the day of the concert his being so ill that I really did not want him to go; however, he stubbornly insisted.  We drove two hours to Jiffy Lube Amphitheater in northern Virginia and just left in time to get their before the concert started.  Lynn’s friend from his former job went with us and was going to sit with Lynn while I sat with the rest of the group many rows back.  I could not enjoy the concert at all.  Knowing how sick Lynn was, I constantly was looking for him and checking my phone to see if John needed my help.  At intermission I found them.  They had never made it inside.  Lynn felt too bad to be among the crowd.  I tried to get John, his friend, to go inside and let me stay with Lynn but he’s a very loyal friend, and choose to stay with us.  Shortly though I managed to convince Lynn that we needed to take him home and we left.  That was the beginning of a very long period of illness and hospitalization so for me, a RUSH concert did not bring forth pleasant memories.
Fast forward two years and guess who is back in town?  RUSH.  Guess who is going again?  Me and Lynn.  This time; however, I’m sitting with him and he’s feeling well enough to enjoy the show.  However, he is still fighting the fatigue and irritability that comes from getting adjusted to Rebif so the trip up was not as much fun as expected.  We took the van, of course, and I connected his peddlar to him so he could pedal all the way to northern Virginia but he just could not relax. 
About 45 minutes before show time, we got to the road leading to the entrance of Jiffy Lube park.  Traffic was not moving!  The concert was due to start at 7:30 and i took till 7:30 to move far enough ahead that we could pull into the entrance to the park.  To make matters worse, Lynn was convinced I was going the wrong way to handicapped parking and was “losing his cool” while I was losing mine in trying to maneuver through thousands of cars. (By the way, I was right about the direction I was going.)
We had left early enough to be able to eat a packed lunch I had brought just before the show…or so we thought.  Since we arrived right when the concert was due to start, we sped out of the van and toward our seats.  RUSH always does something unique for the beginning of their shows so Lynn was determined not to miss it and upset because he knew he would.  Well, we made it on time.  Our seats were as good as you could ask for considering he was in a wheelchair.  We were located between the cameras and sound equipment so no one could stand up in front of him!  Perfect! I could not see as well as he could but I didn’t care as long as he got to see the show.
Just as we got to our seats, the show started and Lynn began to relax.  Knowing though that he needed to eat, I got him comfortable and proceeded to pour him soup into the top of a thermos container.  I first poured the liquid and handed it to him to drink.  I should have known better but it was a small, light-weight cup so I thought he could handle it.  I was wrong.  As he took his first sip of hot onion soup, the full cup fell out of his hand and soaked his shirt….We just looked at each other and laughed. I asked him if it was warm enough and he said, “for now, but cooling off fast.”  Fortunately, I had brought in a blanket to help him stay warm because the temperature was supposed to drop to the 50’s that night.  So, since I did not have a spare shirt with me, I took the blanket, covered his legs and stuffed the rest of it under his shirt so that the wet shirt would be able to dry without touching him.  Then I proceeded to feed him his dinner, only this time, I held everything.  We probably looked rather comical. Here I was with a load of supplies feeding him soup from a thermos while a rock concert was blasting away and he’s covered with a blanket stuffed under his shirt. I kept thinking to myself, “a caregiver never takes a holiday or goes on break; you always have to be prepared for the ‘what if’s’ of life.”  
I finished feeding him dinner, got him comfortable again, and went in search of food myself. The rest of the concert was uneventful and enjoyable.  It was actually the first date we have had since he became immobile so it was nice to be out, with just the two of us and several thousand of our closest unknown companions.
When the concert ended, we waited for some of the traffic to head out and then loaded up for the trip back home. We were directed to leave by a different route than we came in.  So needless to say, we got lost. We started heading west to Fort Royal instead of east to Washington. Finally found out way back heading east to the 95-south connection and finally headed for home.  He was exhausted but content.  He fell asleep not long after we got on the road.  Other than a lengthy delay for construction, we made it back without issue.  I woke him up, got him inside and settled, then fixed our dinner (at 3 a.m.) and off to bed at 4.  He was very tired; as was I; but glad we made the trip.  He’s already planning for the 2014 tour!  I think next time I’ll pack finger foods and an extra shirt…..

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