September not much better. His screening for the pump spasticity study was on the 5th. He did not take his Baclofen all morning ( 2 doses missed). This was one of those accidental discoveries. He realized that medication, in combination with the others, really did help his pain.  He was in far too much pain to do his PT after the screening.

He tried, but his therapist could not get him to focus on the muscles he usually did without hesitation. She put a stop to it and sent him home.

He learned the pump size is the largest to administer both pain and spasticity medication. Colin would like it to be smaller and administer only pain medication. We think that means no hospital admittance and his dosages will take many months to optimize. Questions to ask the doctor when they call.

His brother is now moving closer (to Sacramento) within the next month. He has tired, finally, of the south CA scene, which the rest of us have always despised. It will be nice to have him around more often.

Colin has a show scheduled in early October in SF. He is taking two friends to see Pinback. I would love to go, but it is a Thursday night so I cannot take time off. I need to save it for his procedures.

My job is every more demanding. I risk being branded negative, not a team player and a bad performer. I so don’t give a shit anymore.  Maybe this is the next transition. I do what I can for the people I am there for. Not the ones above me, nor the ones who judge me. The ones who benefit and work beside me, help me out. Those I will spend my energy on. Nobody else.  As I told a peer earlier, I must maintain an ability to do both of my jobs well. If it does not meet the expectations of my superiors, then label me a poor employee and we can all move on. I need my job but it is not my life. My life is so very much more.

By mid September we are no closer to finding a third cg. M has not shown up for weekends and by mid month D is out while his mom is in the hospital. A covers what we need but then days come when he cannot. I schedule M. She does not show up 2 days in a row. I have to get my work covered last minute. Without my colleagues, I would be lost. They step up without hesitation and I am so very grateful. I wish I had the time to show them. M is then moved to weekends only. She never shows up gain, excuses for not coming each scheduled day until we finally tell her not bother coming back.

By the end of September Colin is still in pain, his weight has gone up from comfort eating, even though it is not large amounts. We have nobody during the week who is trained to get him in the stander. No one is trained to do his mat table therapy, electrode therapy nor get him in the shower alone. He has to wait for the weekends to bathe. I tried once to get him in alone, but his weight makes it too much to move him, hold the slide board and shower chair in place. His toe got caught, his toenail ripped. I injured him and gave up.

Ian has decided to come home for about 4 weeks to help out. He arrives Oct 8th. Until then we manage day to day, hoping to get the week covered and I do the evening and weekend care. My job has become so demanding I bring work home every night, work while I take care of Colin usually until 9 pm. I am so exhausted  and mentally drained. I still have to mange cg schedules, therapy appointments, doctor appointments, Health Services paperwork, medication refills, prescription refills, supplies for his care.

And then there is the vehicle. We finally did get DP plates for his van so we don’t need the annoying placard. The van went in for an oil change before his trip in early Oct and has been running well. The passenger window, however, is not rolling up well. I imagine when it finally does give out, it will be down just as the weather is changing.

Days stream by and every moment is occupied with responsibilities. I wake each morning then work endlessly until the moment I can collapse and hope for a full night of sleep. That doesn’t happen often. Driving to work I constantly stress about being the main source of income and insurance, the only 24/7 caregiver.  If something happens to me, we are all totally fucked. I cannot get ill, injured not contract some shitty disease lest we lose everything. And I am the only one I do not have time to take care of. I am behind on a endoscopy, mammogram, basic medical and dental check ups. I have no time. When people ask me what they can do for me? The impossible. A 50 hour day and four of me. Not going to happen.

Early October he get to go see his show. He has a great time. The one night in a year I have to spend alone with my husband and I fall asleep at 9. I then wake up at 11 thinking I should be getting him in bed. I stay awake for the 45 minutes is takes to get him ready, then keep waking during the night fearing I did not turn the baby monitor on. I can’t even rest well anymore.

My mom’s widower remarried.. I am glad he will not be alone in his later years but it makes her passing complete. I miss her. I miss being able to fall apart talking to her. She would listen then tell me to get a grip and do what was needed. No excuses, no exceptions, only results. I still hear her voice when I am overwhelmed feeling like I cannot take anymore. Then I manage to. I hope the day comes when I have less to deal with in every sliver of my life or I may just wear out and break like an old bearing.

We see the pain specialist on the 13th.  It was a stressful visit. Colin was in extreme pain and had not eaten. I had to stop an old man who’s wife uses a cane from taking the ONLY van accessible DP parking spot. He was ready to run me over with his truck. I had to show him the van and explain how he cannot get in or out if someone parks next to us without blocking everyone. He lets me have it. We wait over an hour to see the doctor and schedule his pump trial for the 23rd. I make sure to take the day off to be there. He sees his neurologist who pretty much discharges him from her care as she cannot come up with anything more than more drugs to help his pain. She is going to refer him to a neural pain specialist and we will contact her after the pump is inserted.

The start of each month is when the prescription fiasco begins. It ends about the 17th. I have to request refills within the appropriate time windows. The windows do not account for renewal of prescriptions. Doctors offices are not always prompt in doing so. He runs out of morphine, anti-spastic medication and nerve pain medication regularly. These are drugs he is not supposed to go without suddenly. He must be weaned off slowly. It messes up his system, causes constipation and even more pain. It is a cycle we live with. It is beyond description how very difficult it is.

Ian arrives the 8th. D has returned to work T, W and Th mornings, A covers M and F. Ian takes him to therapy, appointments and helps me with his care in the evenings. It allows me to work non stop each evening from 6-9. My efforts are without results. I was evaluated by a new administrator and failed to meet all standards despite having a 85-95% success rate. The focus was on a small percentage and that means my job is now in jeopardy. This is the last thing I needed yet here it is.  I am expected to arrange coverage for my work and attend training meetings, yet others get to have their work covered automatically.  WTF?

Despite his brother being home, I am no more caught up on my chores. I manage the bare basics as usual. By mid month, we had 2 responses to our cg ad. 1 actually made it out on the 18th. She came to train on the 19th, then never returned.  Colin was in extreme pain and very grumpy. Maybe she didn’t like us or understand how much it takes to care for a quadriplegic. It doesn’t matter why.  We are going to offer a gas stipend but it can’t be much. I barely manage to make it to the end of each month and my only payday. All we can do is keep looking and hoping some one will be the right fit. In the meantime I probably have Ian here maybe 3 more weeks. I need to cover the afternoons by then.

His therapies are going well. He is rolling, balancing, helping to transfer to his chair and using a web ladder to help pull himself into a sitting position. He works so hard. I think he has a crush on his therapist too. Soon I will make links to videos of him in PT I have made. Never a chance to upload.

The 23rd and the trial day. D and I have him up by 6. We get his BMP done, have him dressed and in the van by 8. Damn amazing. We get to the office by 9. They check him in, D put him on a gurney, we undress him. They take him to the OR, inject baclofen into his spinal fluid though the lower back. He feels where they put the needle. The trial is then to wait 2 hours and a physical therapist comes in and evaluates his spasticity. Wait another 2 hours and repeat. Then we were free to go. Follow up appointment is Nov 2. Then we can finally schedule the pump insertion. Maybe by the end of the year, after 13 months of chronic pain, he will get relief. All we can do is wait and hope.

I need to make a plan for his weight, a plan to get some therapy at home, a plan to cover his care when I am at work plus a plan to keep up with my work and save my job. I should find a therapist to deal with stress, make appointments for my own care find some way to get relief on weekends from his morning care. Sometimes I feel lost in the mire, sinking deeper in the muck, unable to get myself out. Thankfully a glass of wine helps ease the sting. I feel less like Atlas, more like myself. I try hard not to let it all consume me, to keep a focus on the future and not dwell on the overwhelming duties that burden me. I try for myself, for my husband and for my disabled boy. I will not be defeated by people who do not understand how our lives have been so drastically changed.

So now the final week of October is here. The pain is so bad in the mornings he cannot talk. By afternoon he can interact. Evenings are usually the best if his pain meds work at all. His brother understands how much work it is to care for him and seems willing to learn more. We get through each day. At this point, we cannot expect much more.