I wanted to post when something new happened. I was tired of the same narration every couple months. I know when I first started it was daily, then weekly, then monthly, then less. I imagined updating my mom but eventually it was the same thing. Sadly, nothing has changed. For any that may still follow this blog, it’s the same story.
Daily I get up, give him his meds and coffee, leave for work if the cg shows or spend the next 5 hours getting him up. Feed him, therapy, set up his game, watch TV or go to an appointment, get him in bed by 10:30 – 11 pm. He is in his chair for 10-12 hours each day. He does about 3 hours of some kind of therapy. We want to add more things for him to do but that requires time. Something we are in short supply of. I also need to make dinner, do some bare minimum clean up, go over his supply and medications to make sure I order what is running low. Colin is starting to take over his prescriptions but I still need to help him scan them.
We bought a kidney shaped table that goes over his chair so he can feed himself. Now we need the utensils and plates. The table came from the UK. We could not find one here in the US, We also got a bottle put on his chair with a long straw so he can drink when he wants. His chair is falling apart. We need to find out if they can repair the joystick and armrest.
We still battle the same issues. Pain management has gone nowhere. The pump is not the answer. We tried a neural pain specialist who took him off the neurontin but doubled his lyrica to 600 mg/day. We complied then stopped when his weight went up by 25 pounds in a few weeks. He’s back down to 300, his weight is stable, his diet even more restricted. He still has days when the pain is debilitating. We just deal. He is depressed about his weight and grudgingly accepting meager portions. He laments the lack of sodas, snack and desserts we have. He works hard to keep moving as much as possible but weight does not leave if you cannot move more than your arms
The insurance stopped covering therapy nor will it cover a therapist to come to the house. He still does it when he can but I cannot move him anymore on a slide board. We had to get a hoyer lift to move him. He has not been on the mat table since a new sore opened up under his belly roll in the upper thigh where it meets his abdomen. He does the stander, the ric shaw and he now plays a game on the iPad with 2 styli. He still writes poetry, listens to music and enjoys being outside.
His friends have gotten busier in their lives and so come around less often. He tries to see them in town but we do not have care givers like we used to. The ones we have are on strict schedules. I wish we could get him out more often but I have to work too.
The cg situation is always in a state of change. We hired a good one. He really liked her. She had to quit due to family obligations. We are looking again. As usual, during my “vacation”. And I actually have to pay to post ads on CL now. That is fucked up. They could at least make posting to healthcare free.
The medical industry is the usual pain. Self righteous office staff that treat us as if they are the only things we deal with demanding the co pay before we can sit down. Threats of being dismissed if we forgot it. Doctors with 3 minutes to spend on us who don’t listen, billing people who don’t know how to do their jobs and expect me to do it for them. Dictating appointments at times we have told them is impossible to make.
To be fair, it is only the big offices that are that bad. We do enjoy several of his doctors and their staff. They are courteous, polite, respectful and the doctors actually listen. Not surprising, most are women. Fortunately one is his primary.
He did come down with a cold and has been on antibiotics to prevent pneumonia again. He has a couple more days left on that prescription. He still has a cough but not as bad.
Overall, we are dealing with the day to day stuff everyday. There is always something. Currently it is his bladder. His catheter keeps leaking at night. They think his bladder has lost elasticity. He has a CT scan this week to see whats going on. As a result his sore has not been able to heal for long before moisture opens it up gain. It’s a twice daily cleaning event.
I am also needing a lawyer. The ABLE accounts are not happening so I need to start a special needs trust for him. I have contacted one but have not had the time or the money to make an appointment. I still have not had time to make any appointments for anything for myself. Maybe in the summer.
As for myself, I am still in transition. Nothing has been easy. Every day I work from dawn to dark with nothing more than the barest essentials done. I make plans to do things, but that requires a cg to be here. The more I plan, the bigger the likelihood a cg will not make it in. I still carry the emotional weight of his injury. It it not any lighter watching him in his chair struggle to get a straw than it was watching him fight to live in the ICU. I worry everyday how I can “put my house in order” in case something happens to me. Who will take care of him? How will he live? I have so many things I want to do to make him more independent. They all require time and money. I have neither. At night I have nightmares of him being left alone or falling or some small thing that would lead to disaster. So few people know how to take care of him. So few even want to.
Not having any breaks in so long has taken it’s toll also. I’ll admit there have been times when I am so overwhelmed I think about how the fuck do I get out of this? It’s not going to change. I’ll never have the morning to do whatever I want. Or a weekend when I can go visit someone out of town. Or see a show, or go camping and hiking. All the things I thought I was going to be able to do once my children were grown. I have thought of suicide, but that would just leave a fucked up mess for too many to deal with so that is not a viable option. Colin is healthy considering his condition so I expect he’s going to be around for a long time. The more I think about it the more I realize it’s just the way things are. How long? who knows. Probably for the rest of my life.
There are times when it is too much. I wait to vent when I am not with him so he doesn’t feel like a burden. I always remind him it’s not his fault, even if the stress is showing.
I should exercise. I should drink less. I should eat better. I should lose 20 pounds. I should save more money. I should do all those things for me. But I run out of energy doing the things I must do. That makes me sad.