July is always a bit crazy. Fourth of July and Colin’s birthday make it go by so fast. This July was no different.

The new caretaker started on July 4th weekend, the same weekend his father was visiting. We didn’t really know what to expect from this guy. He was obviously someone whom had always lived with a family member and played video games. 40 years old with poor people, no cooking and limited cleaning skills. During his training it was painful to listen to him. He took too long to learn things, broke too many things, repeated the same mistakes. It was torture. But he was honest and reliable, 2 things we felt warranted making the effort to work with him. So we endured and gained respite at the end of July when his brother came for a week to visit. We told him to take the time off so we could get a break from him.

July also brought the semi annual van breakdown.  The Chrysler is unreliable and had stranded us too many times. It was a stress we did not need. Colin and I had made a trip to town for a nice lunch. We parked the van and when I got out I smelled gas. Looking underneath, the tank was leaking.  We called D who was home and within walking distance of us. We called the only mobility place in Fresno and told them we were towing the van over. And, naturally, they had no rentals available. D offered to put Colin up at his place since Colin had a Dr. appointment the next day. We called S at the house and after a painful 20 minutes of telling him what to pack we had Colin set up for overnight in town. We had the van towed and it was in the shop for 5 days. The next day I had the issue of getting Colin and his chair home. I paid $190 for medical transportation to pick him up at D’s house, take him to the Dr. and then back home. After this we had to have the discussion. Do we get another van?

We looked at the only dealer in Fresno, which is the only disabled van rental and repair also, and found the minimum we could expect to pay for a used Toyota van was over $40,000 with a 20% down payment. What a fucking scam. I reposted his GoFundMe account  to help raise the $7600 down payment. Asked people to post it on their social sites, etc. I kept wondering if there was any way 7600 people would be willing to donate $1. Well we did get $1000 from my mom’s widower and his wife.  And then we received an astounding $0 donations from nobody. So it seems there is no way to get people to donate $1.

I refused to give up. I was also unwilling to become a victim of the obvious monopoly of disabled vehicle dealer prices. Motherfuckers know they have you against the wall. Maybe they want to get the most out of any insurance settlements from accident victims. Regardless I searched the entire state for days looking for any dealer item for under $25,000. No luck. I did find a private seller about 3 hours west of us in the bay area. I began to look into financing. I did not want a second car payment but I wanted the stress of the Chrysler van even less. Financing was another hurdle. Not because of credit but the terms. I called my bank, his Credit Union, searched online for more days. During this time the owner of this van was gracious enough to hold it for us to come look. I finally found an online financing service that had a reasonable interest rate and length of loan that would fit our budget. I applied and was approved. We Carfaxed the van and the report was clear.

Colin’s brother had been with us for this week so they could not go anywhere during his visit. By the time he left on the 31st  we had just gotten the van back. Colin had a BD gathering at a friends house on the 1st then stayed at D’s house. So the 2nd my husband and I drove to the bay area and checked out the van. It was spotless, perfect and the price was $20,000. We couldn’t believe it, seemed too good to be true. Regardless, we made the deal. Wednesday morning I got on the train to Oakland, walked to the BART then rode it to San Leandro. We went to the bank and I transferred the money to his account. It has been deposited into mine the day before.  I then drove it home. By Wednesday the 5th of August, we had a pristine 2004 Toyota Sienna van that allowed Colin to sit in the front in his chair.  He said he felt like an adult again. One stress gone. It felt good.

Now that the van was not an issue, we had others to address. His pain, as always, was a problem. We had learned his medications were a likely culprit for his weight gain and bloating. We were eager to decrease his medications after having the pump put in but it is such a very slow process. He also went to a Neural Pain Specialist. This guy said to put morphine in the pump (which they won’t do for several months) and he also doubled his Lyrica dosage. We are now removing the Neurontin while we increase the Lyrica, which will have greater side effects. So much for getting him off the fucking pills.

We did finally get a hoyer lift and started using it. We need to practice but it gives us much more versatility in moving him.

He had been discharged for outpatient PT and we needed to get S trained to do some. He did not do well. When Colin was on the ric shaw, S would lie on the couch or get on his stander. He would never clean up. He stayed in the guest room and watched TV constantly. I was beginning to worry that he would not be ready to be alone with him when I returned to work on the 12th. He barely managed to get Colin in his chair by the 10th but was still making mistakes in his bowel program, his dressing and his food. S never once went in to do therapy with him. We decided we needed to replace him. The ad produced a couple of responses and we were discussing them. The biggest concern was Mondays. I had to go to work and couldn’t train. It was all taken care of on the 30th.  Colin occasionally uses a vaporizer for medical marijuana. Not much and not often. We ask all prospective car givers if they are comfortable with it being around and never ask someone who is to administer it. S apparently did not understand. He saw Colin had a small container out on the 29th. The morning of the 30th he announced he was not at all comfortable with having marijuana around and he was no longer working for us. He packed his stuff and left. I had no coverage for Monday.

By Sunday afternoon we hired M. She seems smart and reliable. She starts next weekend, the 5th. 2 months after S started. I had to take Monday off and stay home. I’ll figure something out to cover training on Mondays for a few weeks until M is ready to be alone.

It seems we have a new baseline. We expect to be training a new care giver every couple of months. I expect to be suddenly unable to go to work. We expect Colin to feel like crap and enjoy the days he feels ok. We don’t expect the van to break down. I don’t expect regular weekend breaks, although I would like them. I don’t expect a weekend away. We expect every change to take an eternity and then some. I have gained a patience perspective that spans into years. I expect this is our normal.