Mid year. 20 months since his accident. 18 months of harsh pharmeceuticals. 7 months of chronic pain. No end in sight.
The start of June was promising. He was sleeping better. More often through the night than waking. His new physical therapist teaching new exercises and techniques. Progress was being made on the outside so we can clean up the yard.
His appointment with the othopedist showed his extra bone growth on his hip (HO) was mature but not larger. That was good news even though his hip is bothering him more often.
But by the second week, it went to shit. The van broke. Literally in the driveway, body sitting on the rear tires. I had it scheduled for service Friday the 13th. This was Tuesday the 10th. Fucking figures.
I called a tow truck, made arrangements for the van to be picked up and taken to the wheelchair modification shop. I told the owner I would be going to work and would be over as soon as the truck made it. I got a text at 9:53 saying the truck was leaving the house. I left work at 10:25. Stopped for cash on the way and got there by 10:45.
Apparently that was too long. The tow truck driver had left with the van. It was being taken to their storage yard and I had to get directions printed, haul ass and get to them before he unloaded the van.
I made it just as the truck was backing into the storage area. I was livid. The owner had not told me there was a maximum waiting time. I was not polite. I was yelling. I never called anyone any names. More like “fucking one more minute”, when I was told they tried to call I reminded them I was “fucking driving”. I told her I didn’t have time for this shit and how much more they were charging me for this. I had to pay another $50.00. A total of $250 to tow the van. I continued to complain that they could have waited and saved me the time, but they obviously just wanted more money.
I paid then met them over at the shop. The van was unloaded and then the owner calls me. He complains I was “disrespectful” to his employees by saying the “f word”. I said “so what?” He tried to lecture me on proper behavior. I let him know I didn’t have time for his bullshit and I would not be calling them again. I have no problem with a business that makes money from the misfortune of others. They are helpful. But he was paid for his service and I don’t want to hire someone who exploits the situations for their own benefit. Fuck those fuckers.
It would be another week before we even heard what the problem was, the parts needed and how much. Spring broke, destroyed the air bags we just spent $900 on last year and some other shit. 4-6 weeks to repair. $3900. Great. At least his father stepped in to help.
We had to euthanize one of our dogs. The best one, of course. She was sweet, loyal and kept the others in line. She was old, had hip issues and had gotten some open sores she would not keep covered. As much as I could I would care for Colin, run outside, clean her, cover her wounds. But she would always move, always remove any collar and bandages, leaving no trace of them anywhere.
As soon as we found maggots, it was time. We could’t get someone until early Tuesday morning. She had from Sunday to endure me cleaning her, keeping her in the shade and as comfortable as possible. She was gone by 10:30am Tuesday the 17th. It was peaceful with my husband and I with her. We buried her on the hillside under a sycamore tree. I miss her.
By now I am on summer break and we are back to car transfers and the manual chair in town. Exception is he is 50 pounds heavier. He is on a diet, sometimes. D sneaks him candy and he loves bacon as well as soda. I limit his bacon to a couple times a week. I will not buy soda for the house any more. No more cookies and lots of salads.
Third week of June D is off and I get Colin to PT. He rolls himself and is working on pushing himself into his chair. We do the arm exercises daily and he is getting more control over weak muscles in his shoulders and triceps. Very slowly.
The third weekend was my official re entry into several days off. I went out with the girls on Friday the 20th, drove around in a limo drinking, going from bar to bar until 1:30am. My husband and I stayed in a hotel for the weekend and then went to dinner with good friends on Sat. I went home Sunday morning, my husband went to watch the World Cup games with friends. I slept through the night, slept in and had no responsibilities for 2 days.
I had to coordinate 3 people to cover for me. A came in the morning, Colin’s father was with him and had rented a van for them to go places, D came up and put him to bed. It worked out well and I had a good time. Probably won’t have it again for awhile. I’d be happy with 3 or 4 times a year!
D needed the next week off and A called in sick over the weekend. A seems over stretched with his other jobs so I started looking for a third person. Hopefully with 4 people, we can get everyone hours and time off they need. Colin is not easy to care for.
The last few days of June he started to feel better. He wasn’t falling asleep, we did more therapy and the stander regularly. He still hurt. Enough so we now have a referral for a spinal pump. He isn’t sure if it will be an electrical stimulator or a pharmaceutical bath for his spinal cord. Probably be a month or more before he is seen but at least it is underway.
Insurance and the medical industry here is so incredibly messed up. They know all the codes, information and what was done. We have to sign papers that say we will pay no matter who fucks up and are never told what expenses are for what. Nothing is itemized, nothing can be refused without consequences and there is no avenue for patients to contact insurance about authorizations before the fact. I am now going to write in very small neat print we are not responsible for the fuck up of others on every sheet for payment we sign.
He received a couple of letters from the insurance saying they overpaid the hospitals for services. They expect us to repay that. One is for over $300 and the other over $3000. No explanation, no details on services. WTF is up with that? Why not ask the people the money went to?
The last weekend of June he was able to go to a party up the street. A bunch of his friends showed up in a truck, lifted him and his chair into the back, drove him over. Returned the same way, but with twice the number of people who took him over. He had a good time. He needed to get out of the house and have some fun.
By the end of June the heat wave is underway. Colin is miserable in the car, in the manual chair. We only leave the house for appointments. The heat is brutal.
I placed an ad to bring in another person. The usual. 10 responded. One said she would come, never made it, no contact. A tiny young woman made it, but has no experience with a quadriplegic. One more may show up. So many people who just think it is ok to not follow through, not communicate. Just a no show. Fuck those people. They wouldn’t last here anyway.
3 weeks into my summer break and I have not gotten a single thing done I had planned. I am caring for Colin 90% of the time, managing to keep up with the bare minimum the other 10%.
Such is our lives now. Little fun, lots of work, always something to deal with. Few breaks, much inconvenience and struggle. Never enough time or help. Always exhausting. Never ending.