Halfway through May. We have managed to keep him dry at night by using positioning. Not 100% but about 55% of the time. It’s a step in the right direction.
We had to deal with the morphine crap again. We took it in with 2 days of supply left. Last month it took 2 extra days. This time it’s 5 extra days. So we have to ration the 2 into 5 which means, yet again, he with have withdrawals.
M is trying to keep weekends as a cg to make extra money. We are working to accommodate her. The problem is she has 4 children. We will see how things go. She is really good with him and he enjoys their conversations but she has bigger responsibilities.
We made the next step in automating his room. An Amazon Echo with a Wemo plug for the TV. He can then voice control the TV power, Spotify, audible, his Hue lights and more. I don;t know of he can change channels or adjust the volume but it means he can activate an audible book at night instead of the TV. Maybe he can sleep better.
His pain is no better. We really are disappointed with the intrathecal pump. How we were told it would be his savior. The Dr. was so convincing, such an animated, excited sell. Since it was inserted, he has not seen the Dr. once. He sees the physician’s assistant. No relief. He is told to just be patient. And each time we go to this office, we owe more money. They never tell you how much it’s going to cost over the long run. Last time it was $125.00. Now it’s $200.00. And his office staff are downright bitches if you owe money. They literally will tell him he cannot be seen unless he pays (bullshit, he’ll die if the pump goes dry). They will make him wait as long as possible. They are the biggest cunts I have ever encountered. (I do not use that word lightly but there is nothing else that can describe how they treat him). This has been the biggest let down to date. Not only has it not performed the way were were told, the office staff makes the monthly visit dreadful.
Still no word on his chair repairs or a new shower chair. I think we’ll just have to find a shower chair we can afford.
His new IHSS caseworker visited. He has a problem with the signatures and wants everything to be different. We spent a long time on the phone with a supervisor to get the signature situation resolved and here it is again. WTF? He also has a bunch of form to fill out. Why can’t I just give him a copy of the 26 page form I fill out for his State worker? I don’t need any more shit to fill out ffs. I called him and convinced him there were no forms needed until July,
By the end of May we have hired another cg, Al. He is on weekends and replaces M.
June was training new cg and covering those who are taking vacations. I am the backup as I am on summer break from work so I get to work at home instead. I had 1 week where most shifts were covered and I had some actual days and evenings free. Then it was 2 gone, 1 sick, another moving, then another sick, etc. I worked 3 of the first 4 weeks I had off, day and night.
We have managed to get his catheter leak free up to 85% nights. by the end of June. We had an appointment on June 24 at UCSF Medical center, but rescheduled when we realized it was Gay Pride weekend..in SF. If all keeps going well, we’ll not need to make that trip.
Another hopeful improvement, the pump. On the last visit Colin asked about changing the medication. There had been no improvement in 16 months and we were looking at another 14 months before he reached the average maximum dose. The PA pushed to continue the prealt. Colin wasn’t happy. The PA commented that at least the spasticity was under control so I reminded him that we did not come to them for spasticity. We came for pain. By the time we got home, the PA had called, said they would put morphine in the pump on his next fill, July 21. They can increase the dosage weekly, instead of monthly and optimized sooner. We then can get him off the oral morphine. This was the original plan. We will see how it works out.
He was able to be reassessed by his PT. She said his HO had decreased his hip motion by 10 degrees. This put pressure on his hip when he sits in his chair with the back in a full upright position. His back is taking the extra pressure as well. So he has pain on his right side. He needs to recline his back a bit to relieve the pressure. He then tends to slide out of his seat so must recline the entire chair back about 10 degrees. This puts extra pressure on his lower back, which is now giving him issues. The hip also means there is no way he will be able to transfer himself out of his chair. He will never be able to lean forward far enough to get his weight off that hip. That was a big disappointment for him. There is no surgery. Nobody is going to replace a quadriplegic’s hip.
He did get his new seat but the arm is still broken, the battery is in quick die mode and we are heading to Oregon in a few days. I hope we don’t have to change a wheelchair battery on our own.
We are doing as much therapy as he can handle. He has maintained his weight but not reduced it. It’s amazing given how restricted his diet is. He should get about 1000 cal/day to lose weight. He probably takes in about 1200, the maximum he needs. It’s a slow process decreasing someone’s diet to the point of 2 tiny meals and no snacks. He like juice and lemonade too. I know he has soda when he goes out to eat. But that is ok. He’s miserable enough as it is. Some pleasure is necessary.
I am definitely ready for a break. D has been gone for 3 weeks, J took a long weekend over the holiday and Al went home sick. As usual, everything I had planned to get done, is not happening. Maybe I’ll get something finished before I go back to work. I want to believe the cg situation will stabilize, but I just don;t think it ever will.
I need $1,000,000. I know we all do. If I had $1M I could pay off the house, but a rental property that would generate income to send into a trust for him. I could get him a good van that would last his lifetime and modify it for him to be able to drive. I could automate his room with voice activation, install disabled access door openers, install tracks to help move him and him move himself, update his gym with more equipment he can use, get him an updated ipad, mac and adaptive accessories and so on. I won’t ever get that kind of money so I try to figure ways to set up a trust fund, with no real assets and no funding. Haven’t had many ideas. The older I get, the more pressure I feel to get him as independent of me as possible, just in case. Patience is essential in our lives now. Add 6 months plus a year or two for things to take shape, evolve and be a noticeable difference. So within 7-10 years? I have no time, no money, no skills to market, no ability to get those skills, and I do need to get a disabled adult set up for independence. He has nobody else who will be willing/able. He needs to learn how to manage caregivers and depend on them for his survival. Manage his medical supplies, his medical, IHSS, state and local caseworkers. Doctors, medical equipment repair and replacement, medications, prescriptions, house cleaning, laundry, shopping… this is his household, minimally.
Tiny steps. Long road ahead. Need time and money. Fucking hell..I need some wine.