March 16 Saturday His father arrives around 10:30. Colin isn’t up yet but they hang out and I get him up after he has some pizza. Once his father arrives I am able to start cleaning out the back rooms for construction. My husband and a helper begin to put in the new stove. He goes on a walk with his dad taking the power chair up the dirt driveway and up the road. It’s a beautiful day. Once the kitchen tile is cut, everything is covered in tile dust. I air out the house and don’t let Colin in until the air clear. The last hour with his dad is interrupted by sawing and hammering. After 5 his dad is gone I get Colin comfortable and give him the rest of the pizza for dinner. By 10 the stove is in but the breaker is bad. There was a break in the power wire on the old stove. It arced, blew out the stove and the breaker. Had been there for over 20 years. Fuck me. My husband took the helper back to town and returned with the breaker. He and I replaced it in the dark and by 12:30 am on Sunday, we had a new stove. Colin rested well, only getting me up twice for minor comfort adjustments.
March 17 Sunday First morning using the new stove. Made a nice brunch and we relaxed all morning. My husband had to run into work. Colin and I got him on his hand bicycle, stretched his hands, went outside. It was a nice Sunday. I baked a lasagna in the new oven, hovering over the digital controls in awe. It was a good Sunday for the most part. Colin’s nerve pain is not being controlled as well by his nerve medication. By evening he is in agony as his legs feel like they are burning, with another 4 hours until the next dose. We need to talk to the nurse and see what options are available. Despite his discomfort, he gets some exercises in, stays in the chair all day and rests well through the night. He has not had a BM in a couple of days so tomorrow we resume the BMP. We both prefer that over diarrhea!
March 18 Monday. At 7 he is doing well, sleeping while I give him his morning dose.I zap his calves. I have him up by 8:30 and he is wet. His catheter leaked. I change his bedding. We do his BMP, I give him a bath. By now he is grumpy and complains while I do his leg ROM and cries while I do his hands. I have him up by 1, the nurse is there by 3:30. She says he looks really good, his lungs are clear. She talks about alternative nerve meds and we plan on discussing that with his doctor on Friday. Since it is a nice day, I have all the curtains drawn that close off his area and she notices the stander. When she realizes he has one, it was a donation, she says it is her goal to get a PT therapist in here to get him in it. It will do his alignment, trunk strength, and bone health so much good for him to do standing therapy. She says it is her mission as she leaves giving Colin a bill of good health, saying we are doing a good job and she will return on Thursday of the following week. We do his hand bike, stretch his arms and I zap his triceps. Dinner is at 7, he is in bed by 9:30 then sleeping by 10:30. He only gets me up now once or twice each night, adjusting his arms or getting him straight after slipping to the side a bit. We have a big day tomorrow, the contractors come to begin planning and will start this week.
March 19 Tuesday Hair wash day. He gets grumpy with that as well. I have him finished, all ROM done and in the chair by 1. I keep getting interrupted by the contractors asking questions so it takes longer. They tell me the garage, the back office /store room must be cleared by Thursday when the work begins. All the stuff to give away as well as Colin’s Honda need to be moved by the weekend. Well shit. Fortunately for me, his friend shows up for a visit. This allows me to start clearing things out. I work all afternoon and post things on Craigslist. The back room has the loft we built and a freezer left, the garage a few more things plus a couch and love seat. When my husband gets home we have dinner and then begin to disassemble the loft. By 9 pm, most of the items posted are gone. Only a couple little things are left plus cement pyramids. We have Wednesday to get everything else out. The garage is almost empty. Colin’s friend leaves and it is too late for a BPM so we put it off till morning. His legs are bothering him as usual. He is in bed by 10, tucked in by 11 and sleeping by 11:15.
March 20 Wednesday Vernal equinox. Raining today. Not cold enough for a fire but chilly. I don;t get him up until it warms up, then we do exercises, stretches and his cycle. We are using a camera mouse software that was free online. He has page turner/keyboard tolls on his hands to help him type. The camera mouse tracks the computer mouse with a location on his face, but it tends to drift and we have to re adjust it. It does give him complete control over the computer so we will be looking at better options. Maybe a joystick with a big button since he cannot move his fingers. We practiced his “new” signature using a tool that holds a pen in his palm. He cannot grasp it, but he can make a notation on paper. That is all we need to get his first SSI check in the bank tomorrow. I posted the cement pyramids on CL and by 11 they were gone as well. I like that items we don’t need can be reused. Waste is so bad.
We do more exercises, talk about his trach being removed on the 9th. Are we ready? I still have to suction him, averaging once a day. Maybe we need to wait till the construction is done? I don’t know. we will just have to wait and see. By afternoon the rain has stopped my husband gets home, he went to Costco, brought me roses for our anniversary. We move the refrigerator, shelves and leave only the small freezer in the back, which I can move once I clear out some “storage space” in the bedroom, now storage room. That room will take me a week to clear out so I try to avoid it. We have a nice dinner, relax and get to bed early, meaning by 10:30. The contractors show up in the morning to begin work.
March 21 Thursday Colin is sleeping when the workers show up. 3 guys to begin scraping, moving the washer/dryer to the new laundry room (the old office/store room), remove the garage doors and prep the garage concrete for demolition. The noise is not too bad today. The remove the cabinets and my deep laundry sink, move the washer and dryer. Then the start to remove the siding from the house. Colin and I are outside in the spring sunshine observing and being tortured by the worst Christian music. No offense meant but we decided, it’s all written by the same person and the Christian God only allows a piano for musical devotion. I know this music is very inspirational for those who worship but for us, techno dance and rock n roll in our hearts, it is downright painful. We lasted about 90 minutes before returning inside. The crew was finished about 4, my husband was home by 5, we had dinner and relaxed for the evening. Early morning again tomorrow, Colin has a doctor appointment and we need to go to his bank. We are all in bed by 10:30. Colin didn’t get me up at all, but the dogs did. Damn.
March 22 Friday Contractors making ALOT of noise by 8:30. I make Colin breakfast, get him dressed and we are leaving by 11. The bank goes smoothly, I am added to his account. We get to the doctor and have to re enter all his information for their new system, which is the same as the hospital system. So it has all his hospital information, but none of the information from his visits to the doctor before. WTF? I think they don’t know how to use it. Colin discusses his medication issues and he picks up a new doctor referral Now a neurologist will come on board. We will be contacted for the appointment. We get a snack, pick up prescriptions and head home. We get home by 4:30 and the workers are still there. The foreman asks if I heard the news. Mope I tell him. Well, the cement demo began and they immediately hit the hot water pipe. We have no hot water till tomorrow. Ok I tell him, we will manage. I wish them a nice weekend. One of the cement workers call out to me.
“Did you work at Sunnyside?” I tell him yes, thinking fuck me I do not recognize this person.
” I remember you, you are Ms. Sanchez. My wife had you.” Good, there was a reason I did not recognize him other than pre- Alzheimer. “She is in the car.”
Sure enough a student from about 9 years ago emerges. She looks healthy, happy, has 2 children and is a dental hygienist. I remember those two dating in high school. I chat briefly since Colin needs to Facetime with his brother. I am pleased to see them doing so well. She brought her daughter up to see the countryside in the spring. A good time as all the wildflowers are opening. I have to go back inside, they leave soon after. Amazing, former students just pop up all over.
My husband picks up Indian food for dinner,I open some wine we watch a movie. We are all in bed by 11:30. The plummer should be here about 9:30 to make noise repairing the pipe. Colin is tired, the manual chair does not support him well which fatigues his neck and shoulders. He