July 15 Monday  Colin sleeps in till 8. During coffee we complain about the tile not being finished and how much we want the room completed. We complete his morning routine, had him in his chair by 11. After lunch he rested until D arrived. I sent a schedule for the morning person, L, to her email for review. Colin was up in the stander for about an hour, then he began to feel poorly. His arms, hands, back and legs all in pain. I ordered more things for his room. A bulletin board, some magnets and pins, more medical supplies. I continued my search for a call button/monitoring system that wasn’t $1000.  After he had his feet vibrated and taken more pain meds, he felt a little better. I made dinner, D fed him then his shift was over, my began. For every 15 day pay period I get 57 minutes of compensation. A 16 day period whittles it down to 12 minutes. The remaining time goes to provide 11 hours of care from others. I don’t care as long as he has proper care. Any minutes I can claim, and get $10.25/hr for, all go to medical supplies. We hang out after D leaves. I read, Colin streams a show and messes around on FB. By 9:30 he is ready for bed. I have him in, positioned, medicated, watching a movie by 10:15. He is restless through the night, waking himself with sudden jolts, feeling confined, claustrophobic, immobile. I get up at least 5 times to adjust, calm, comfort or cover.

July 16  Tuesday  His therapy day, the last PT on the schedule before insurance review. OT does not require the regular approval to continue, but PT does. We get through his morning  and have I him in the chair before 11.  He chills while I clean the kitchen, get lunch ready.  We have him ready to go when D arrives we get him in the van. While they attend therapy I wash the van. He says his session was “meh”. At least he didn’t have AD. After we go to the grocery store. Colin picks out soda, beer and candy. Nothing nutritious. We get home, unload. I make dinner. D feeds Colin while I eat with my husband. The tile is finally done in his room. We go in and check it out. Colin zips around in his chair, enjoying the space. Another week or so and we can move him in. D leaves when his shift ends at 7, Colin and I hang out. I order more items for his area and the dogs flea medicine. He is uncomfortable by 8, wants candy to distract him. I have him pick it up, hand it to me for practice. By 9:45 he is ready for bed. He is never really ready. He hates going to bed, being in bed. The torture of the morning sessions are exacerbated by this need to get up. In bed he cannot move when he is restless which frightens him during the night. When he wakes with a start, moans and whimpers, I hear it all. I used to go in and try to help but realized I just made it worse. This is something he must deal with, there is nothing for me to do. He says to get him in so I do. By the time I have his leg wraps on, catheter changed he is dozing. I finish up, get his meds and set the TV timer. He is restless through the night. I get up many times to adjust his pillow, move the fan, cover him.

July 17  Wednesday  Colin is awake by 8:30. We have coffee, I begin his ROM. We need to be done by 11 as the State case worker is visiting today. At 10:15 she shows up, 45 minutes early. With her supervisor from Sacramento. I really don’t care, Colin is upset and lets them know they have interrupted his morning routine. They are apologetic, make it quick. I show them the modifications, they are impressed. They commend me on his care, applaud that he has not reentered the hospital and has no more bedsores. She leaves the next 20 page packet I need to turn in by October, then they are gone. We can take our time with the rest of the morning. D arrives with a pizza, which makes Colin’s day.  He feeds him, they relax. He gets him in the stander for about 90 minutes, until Colin gets some relief on his lower back. He relaxes for about an hour the n has his feet vibrated. I make dinner, D feeds him, washes the dishes even though I tell him not to. By the end of D’s shift Colin is ready for more candy. We hang out. He streams some show, messes around on FB. I read. Again by 8 he feels bad, by 9:30 relinquishes his freedom and has me get the bed ready. He is in and settled by 10:15. Another restless night.

July 18  Thursday  I let him sleep till almost 9. We have no appointments, no caregiver today. Just the two if us. We decide to go see a movie, World War Z even though we know it won’t be like the book. There are 2 workers today and the new door from the dining room to his room is put in. I LOVE this door!  After the morning routine we have lunch then head to town. We go to the Daily Grill so he can order a burger there. He says he is on a mission to find the best burger in town. So far Giuseppe Gallo has the lead. After, the Daily Grill ties. We go to the movie, a good zombie movie if you are not expecting the book. Having read it I was disappointed but can see there is a franchise forming. Maybe the finale will be the book.

We get home, open the house and hang out. I continue looking for items we need to organize all the supplies. By 10 he is ready for bed, falling asleep in his chair. I get him in bed, positioned, medicated, comfortable. He has a little better night than previous ones. I only get up about 3 times.

July 19  Friday  He cannot sleep in. The workers are here, the room getting closer to completion. It is hot. We get through the morning torture, have him up by 11:30. After lunch he is relaxing. D arrives at 1, gets Colin into the stander by 2. I leave for my annual gynecology appointment that was due in February. After my visit I talk with my mother’s husband. He will be 90 on the 10th. I would like to be up there for his celebration but am not seeing any way possible. Colin has OT, we are training the other cg, L (who has not gotten back to me yet…bad sign) and I go back to work the following week. I miss my mom when I talk to him. I cry for a bit, gather myself then go meet my husband for dinner. We get to hang out long enough for another friend to come by. I miss hanging out with these people, it has been too long. I have to leave by 6, my husband stays t hang with others who will arrive later.  I have Colin’s order from the Yard House, head home. D feeds him once I get there then heads out. I hang with Colin while he streams a show and I read. He is in bed by 10:45 after I tell him there is no rush. D is on for the weekend to get more familiar with the ROM exercises. He can sleep on if he wants. He rests better, but still wakes afraid at least twice. I wish there was a way to help him through these episodes without medications. I am tired of pills being the answer. We have worked too hard to get rid of most. I don’t believe prescriptions are the answer.

July 20  Saturday  He is up early for his BMP. We are not quite finished by the time D arrives, but close enough. I am on observation for the ROM, assisting in getting the correct motion, angle etc. D gets him dressed, then up in the chair. After lunch he is in the stander for 90 minutes. Once D’s shift is over, we get to go into his room, with AC. I have the thermostat at 78. It is 89 in the main house. Once we get him over there he feels better. He does not like using the computer to stream, like in the hospital, but he is cool and comfortable. We do not leave this room until bed time. after the house is open. I have him in bed by 10:45 all timers set, meds given. He rests poorly unable to sleep long before waking in fear and confusion. I get up about 6 times.

July 21 Sunday  Colin is still asleep when D arrives at 9. I gave him meds at 7, closed the house, drew the curtains and went back to bed myself.  I was up by 8:30, made coffee. D arrives at 9, Colin slept till nearly 10. My husband slept till 9:30.  I left D and Colin to handle the morning routine, was needed some. I was able to start laundry, clean the kitchen between guidance. L finally called to complain about the schedule. She said she had a child, could not work 6 days in a row (5 hours each). She told me days she could not work. I listened and told myself she would not be working for us. For someone who is 10 minutes away, with a shift from 8 – 1, a couple Saturdays each month from 9-3, she complains? Seriously, this is a person who seems only happy getting what they want. I told Colin, he said “Fuck her.” I agreed. I began to send emails to folks who had applied, prepared a schedule with just D and I. It would be difficult, but we could do this until we found the right person. We all agreed L was not going to be a cg and I made plans to replace her. She hadn’t even started the job. It must be nice to be in a position one can dictate the hours and days. I have never had that. After lunch he tried the stander but was not feeling good. We moved the mat table into his room and we showed D his balances, stretches. He got on his side for about 30 minutes to alleviate the back pain. D got him back up, then his shift was over. We hung out in his, literal, cool room for the rest of the evening. We streamed some dumb movie, I ordered curtains for his room and the gym.I researched sewing machines. I hate the plastic disposal diapers. I never used them when my boys were babies, I hate them still. I want to make something from cloth for him, reusable, breathable. I have no clue how to go about it. By 9:30 we went back into the main house and got him ready for bed. He was sleeping by 10:30. He actually slept better. Only woke a couple of times. I need to find the key to helping him sleep without waking sans drugs. There must be a way.

July 8  Monday  Colin is awake for his 7 am meds, can’t go back to sleep. We take our time with his morning routine. He is in his chair by 11. After lunch we wait for his care giver to arrive at 1. D is early, comes in energetic, enthusiastic and ready to help out. I give him a tour of the set up, although it will be changing in a couple weeks. I show him how to get Colin in the stander, he takes over moving his legs. I get on the phone and begin the campaign for catheters again. I call the primary care doctor, the supplier, the home care nurse. After over an hour on the phone I have accomplished nothing. His catheter needs to be changed this week, I have one and no back up. D gets him out of the stander. We relax while I show D Colin’s room and gym. The tile has barely been started. Colin’s friend comes by so they visit while D and I talk about Colin’s accident, his recovery so far and what we expect him as his caregiver to do. My husband gets home just before D’s shift is over so they get a chance to meet. I make dinner, get Colin in bed by 10. He is not feeling well. His lower back is beginning to bother him in the chair more and only the morphine seems to help. He does not like taking it but we have not managed to find a way to ease the discomfort.  He is feeling poorly as I get his ready for bed. It takes him awhile to fall asleep. He wakes me about 3, wet but not badly. We really need to change the catheter. I clean and change him, make sure his catheter is draining. He sleeps till 6:30.

July 9 Tuesday  Again, he cannot sleep in. We take our time doing his exercises, have him up by 10:30. I make lunch, we stream some TED, the  head to town for OT/PT. This session D will be attending with him.  I go back, introduce D to the therapists and leave them to go wash the van. I return then wait for the sessions to finish. When they come out Colin tells me the session was “shitty”, he had AD, screamed, swore and yelled during the session. I missed a bunch! Apparently the physical therapist had gotten him on his stomach. First time since his accident, and it was not done well. She pulled on his shoulder, causing him to scream. She rolled him onto his face on the mat table so he yelled, swore. She pulled on his shoulders again to get a pillow under him to raise his face. He was not happy. He had an AD episode. They also came out with construction plans for a rik shaw, without wheels to put behind his chair for his triceps. It was not a small item. Hopefully, my husband would be up for some work after the construction was complete.

We left the rehab center, ordered some Italian food to take home. My husband made it before we did.  We all noticed no tile people showed up to do any work. It is past time for this to be finished. We need practice using the area before I go back to work. My husband and I discuss what they could have done. We ate a nice dinner, relaxed. We opened the house around 7. Colin streamed a show, messed around on FB. I finished my book, “Wool” and started another my husband had gotten for me. Neil Gaiman’s “The Ocean at the End of the Lane”. A quick read, but I have enjoyed his work since “The Sandman”.

He feels poorly again by 8:30. His legs, arms, back, hands. He wants morphine then to be left alone.  By 9:30 he is moaning, uncomfortable. By 10 he asks to be put to bed. I have him in, comfortable, meds administered and TV timer set by 10:30. He again sleeps fitfully.

July 10 Wednesday  Again he is awake by 7. This morning we change his catheter before the remaining routine. It goes well except there is a large stone stuck in the end. Bigger than some he passed in March. I will be more diligent flushing his catheter. He is up by 11. I am getting phone calls. Ian calls to discuss his calculus class, while I am on the phone with him a call comes on the house line from the catheter supply place. She says she will have a catheter there soon.  I hang up just as his other care giver, L, comes by. Apparently she got the bitch to do her paperwork. I did not write “for Colin” next to my signature on either of the sign up PACKETS.  D was able to write it himself. L was not. Additionally, this lady had the gall to question how I could claim hours as well. She knows nothing about his care and seems to think she has a right to question how we schedule time. This woman is out of line. I wish I had time to file a complaint.  I write what I am supposed to on her registration,  send L on her way then return Ian’s call.  I make Colin lunch. As soon as  D arrives at 1, they relax for about half hour while Colin digests.  D brought him a Pizza, which Colin will have for dinner. I get him in the stander, he is up for 90 minutes. During this time I call a local GP doctor to see if she will take Colin on as his primary care doctor. We schedule an evaluation visit for the 24th. I also call an orthopedist, the only name given by the insurance, leave a message. We need an orthopedist to monitor his skeleton.  D gets Colin out of the chair. He feeds him the Pizza for dinner. His shift ends at 7 then I am back on care duty. I hang out with Colin, we talk about how wimpy the PT is. They don’t do much and it is only once a week. Once his gym is done, he can do PT as much as he wants.

He is getting tired and uncomfortable by 8:30 again. I help him relax, massage what I can. He is in bed by 9:30, sleeping by 10:30. Tonight is better, he only wakes up a couple of times.

July 11 Thursday  Awake by 7. Wash hair, do ROM, EMS. While I am working on his feet he says he can slightly tell when I am touching individual toes on his right foot. I Have him up by 11:30. Make him lunch. A delivery comes around 10:30. It is his catheter supplies, just in time. I open the box to find ONE catheter. We are in the same position as yesterday. No back up if his catheter clogs. Wtf. He has a neurology appointment at 2. The only one we enjoy attending. D arrives at 1, I show him how to get Colin in the van. We drive down to the office. Colin and the neurologist discuss his meds, make a slight change. She is pleased with his voluntary finger twitches and wants him to get a keyboard to practice on. She is intrigued by his toe sensations, has him close his eyes and imagine moving his toes, feet, ankles. She tells him to keep trying. She gives him another B12 shot, wants to see him in another 4 weeks. Colin always feels better after seeing her.

We head home, I have D drive to get a feel for the van. Once home I make dinner, D feeds Colin while my husband and I enjoy eating a meal together. Again, the tile folks did not show up. Once D leaves I hang out with Colin, we stream a movie. He feels better, not great, but better. He is in bed by 10. He sleeps well.

July 12 Friday  He sleeps in a bit. I close all the curtains at 7, darken the room. He wants coffee around 8. We get through his morning routine, he is up by 11:30, but his arms and back are hurting more than usual. I give him some morphine. D arrives at 1. Shortly after Colin;s friend arrives. We were supposed to show D the mat table today, Colin’s pal was due later but got off work early. Socializing is as important as exercise so D went to read and I left for an insurance audit. The audit took about 10 minutes. The agent was not even going to look at the fucking letter that I worked hard to obtain. I made her document the letter of disability. After pitching a worthless catastrophic insurance policy (seriously, why bother to pay for $500 coverage when the cost is $11k?) She seemed unfazed when I told her the millions in medical expenses he has incurred makes the coverage of her policy laughable.

I left the visit excited as my husband and I were planning a date for dinner. We met at one of our favorite places The North India Grill. And it was closed. Like FOREVER. We stood on front of the empty building speechless. I was near tears. Only in Fresno/Clovis is an awesome authentic restaurant doomed. Dejected, starving we agree to sushi. We head to one of our favorites Ooi. It was closed till 5 pm. We had 45 minutes to wait in the fucking valley heat in a place where there is nothing to do. I took it poorly. My visions of having appetizers and wine,  a nice long meal before leaving Fresno by 6 were shattered. No where else is it impossible to find good food before 5 on a Friday. I don’t do the chain food shit.

Finally, after the endless minutes passed we got in. We ordered sake, salads, edamame and 2 rolls.   Colin had texted me to pick up some burgers for he and Brandon before leaving town. My husband went with me, then I dropped him off at his car. I got home just as D’s shift ended. Brandon and Colin enjoyed their burgers. Once his friend left, Colin was up till about 10:30. He was in bed, sleeping as I got him ready. He slept well.

July 13  Saturday. Colin slept till 9, when D arrived and Sassy woke him up with her bark. D was there to learn the morning routine. We took him through it, Colin was up by 11:30. D and I made him lunch, D fed him. We all relaxed till my laundry was done, by the end of D’s shift at 2. Colin and I went to Costco (always a nightmare), returned home. Colin had a friend arrive around 7. My husband and I were able to hang out in the yard under the trees, have snack, drink too much wine and just hang out together. We made dinner and everyone at around 9. His friend left by 10. I got Colin in bed, sleeping again as I got him ready. He slept well again, only waking twice. Once when the dogs broke into the house, a second time when he needed the fan off.

July 14  Sunday  He wakes me at 6:30 with AD. His catheter is tweaked under his thigh nut he has only gotten the drain sponge  and his sheet wet.  I clear his cath, make sure it drains. I remove the drain sponge, change his sheet. I give him his meds, close up the house  then we all go back to bed. I get up at 8:45. Colin wants coffee by 10. We get through his morning routine, cut short his ROM and have him up by noon. Brandon is taking him to his cousin’s for the afternoon and early evening. His friend gets there at 1, I feed Colin his lunch. We pack up what he needs and they leave for town by 1:30. My husband and I head down soon after. We have a late lunch, go to a movie (Pacific Rim IMAX 3D…nice!). We get home around 7:45, open the house, feed the animals. Colin and Brandon get back about 9:30. I have Colin in bed by 10. Again he is sleeping while I get him ready. My husband and I are in bed by 10:30. I fall asleep streaming a show.