Early November I empathized with 3 mothers.

An 83 year old Asian mother who killed her disabled son. Her motivation, and a nightmare of mine: Nobody will care for her son if she cannot. I’m not 83. I’m almost 60.  And what would I do if I knew nobody would be there to care for Colin if something happened to me?  I mean What THE FUCK? I am not prepared to face that dilemma.

The second, a 98 year old who moved into her 80 year old son’s nursing home. I looked at the picture and knew that would be Colin and I should I live that long. (it would be 80 and 108…).

And Joyce Byers. Fictitious she may be, but her drive to aid her boy, regardless of what anyone thought,  I owned as well. I did not support Joyce at first. I remember thinking, she’s a fucked up loon! But rewatching the first season I am yelling “Why don’t you listen to her?!”

Been there. With most every doctor we have dealt with. Few listen to us.

But all connections for me held the greatest motivation to get my shit together and set up his trust. If only I had the time.

The big important things I need to take care of are drowned in surviving day to day.

How do I make the time within my ever expanding list?  My backlog stands at around 25 years. I have 30 years of stuff to do, I hope! I am realizing I will never “catch up”. There is always something to take care of.  Prioritize.

For 12 weeks, at least, we have been battling pressure sores. They started in early August, predictably just before we left for Salem. We barely managed 3.

After Salem we traveled to SF,  and Oakland. His catheter, for 8 of those, leaked almost nightly.  He had appointments. Every moment of pressure, sliding and moisture made these locations vulnerable. We managed 2 of them. The third got out of hand.

In one day.

It was at the ischial tuberosity pressure point. It was a barely managed stage I for weeks. It went to stage II by the first week of November.

We had always treated his sores with Mepilex, and left each patch on until it became soiled.

This time, a 2 day interval, transfers to 2 exam tables and a 2 hour trip in the van had made it advance from a II to III. D had told me he was concerned. That scared me, I had no idea what to do.

And, of course, it was a Friday night. No doctor would acknowledge us until Monday. The ER and hospital were not productive options for us. Colin was bed ridden for the foreseeable few weeks. Better at home, than in a hospital where they did not have the time, equipment or personnel, to care for him.

So I had to wing it for a couple days. Rotated him, pillows, washed wound. I had no idea what to do. The wound grew from the size of a dime, to a quarter. It deepened. There was pus, black and white tissue. I cleaned the growing cavity in his ass with sterile saline, covered it with antibacterial gauze and waited for Monday.

9:01 am I called his Dr office and told them this ulcer was beyond my ability to treat and we needed a wound care nurse to come and assess him. By 5 pm Wednesday, we had been told there were no appointments available from one company and they were calling around.

By 5 pm Friday, no more response from doctor.  I had spent hours  by then researching wound care, purchasing supplies. I had washed, packed and covered  his wound for 5 days. It’s as if they want him to get worse and be hospitalized. I don’t think that is true, but the ineffective approach leads me to  wonder why that is acceptable.

By the 7th day I stopped packing the tunnel wound with saline wetted gauze. When I tried to pull it out of the wound cavern it stuck and pulled some skin. He bled more than I was comfortable with. So I made a completely uneducated, inexperienced guess and did not pack it. I covered the 2.2 cm deep wound with 2 layers of antibacterial gauze, a larger absorbent pad and mepilex. I could only hope it would help.

I had hoped the medical provider network would come through in 5 days. Especially for a high risk patient with a high risk situation. Prompt response means less overall medical care.

I have said it so many times…no part of our entire social/medical system has any idea what any other of the multitudes of systems, are doing. They are all independent and they can only function effectively for the patient, as a universal database.

In this country. With current technology. What. The FUCK?!

Fuck this month…seriously. No wound care support happened. Insurance would not pay for a nurse to come up and treat him.  They would approve to have a vascular surgeon excavate the wound and create a lengthy recovery period!

We were on our own.

I researched, fretted and balked. I had no idea what to do. I ordered recommended supplies.

And went in clueless.

Packing a cavernous wound is necessary, but fucked up. I had to wash with saline. Instructions said to scrape away dead tissue. WTF?

I didn’t do that. I packed it as instructed, covered his wound. Replacing the packing and covering for the next 3 days promoted good circulation and healing was happening.

By day 12 in bed his wound was smaller and progress was happening.  Just in time for the Holidays.

By Thanksgiving day we got him his first shower in nearly 3 weeks, got him up and outside. He played his game for a bit and ate too much.

We have the usual luck searching for a new cg. Post an ad, 10 or so apply. Few with experience, fewer still who want to do the job or commute and no one shows for an interview. Post again, 15 apply, one makes it to a first day of training, never returns. Not even the courtesy of telling us. Just stop showing up and responding.

December started off well. My husband and I were able to attend the Foo Fighters show (can’t believe they came to Fresno!) and had a fun date night. First one in I don’t know how long.  It was really nice but over too quickly and the next opportunity so far away it can’t be predicted.

30 more days till 2017 is over. 5 years since his accident. It feels like 10. I still struggle with leaving my past life and plans behind. My life now is filled with stress and fatigue.

Yet at years end, there is a flicker of hope.

His neurologist calls in early December after receiving his recent MRI scans. She calls all contact numbers, bless her!

There is a cavity that is growing around his spinal injury sight. She believes a Neurosurgeon should look at his scan. We have a course of action. Because she paid attention and she cared. His Neurologist did her job. Finally, after 18 months we have a way to, hopefully, move past the spinal myoclonus.

Sadly, the CG situation is as fucked as ever. F began in July soon after one went on maternity leave and the other quit. At first he was great as a CG. Still is. Sadly, he “moved in” after his living situation changed. We agreed as he was covering the shift I need to get to work.

First all our pint glasses disappeared from breakage. About 12 collectors items. He began treating our things and space as his. He was entitled to use whatever he wanted, simply because it was there. No permission needed.

We asked he contribute 8 hours of care per week to compensate for electricity, water, heat, laundry, wifi, TV, garbage and phone services. He did ok at first, then began to slack off.

The  he became unhappy with the hours we gave him while Colin was bedridden with the sore. 8 hours for about 4 hours of work. I told him we were being very generous but he felt he should be compensated for watching TV and seeing his pants because he was in Colin’s room.

I had finally had enough the evening he told me “I am going to give you a week off doing your break and then take off after that.” He was taking another vacation during my vacation. His second in 3 weeks.

J was due to return from maternity leave and then informed us she is pregnant again. She wants to return for a few months, in the evenings, which I will take.

We have had an ad on CL for over a month. 25 responded, 2 made it to the house. 1 wants to do the job but I’m not sure their car can make the drive.  She is supposed to be here in the morning, my first day of vacation. If she works out, I will train her for the next 3 weeks so she can take over weekday mornings.

It’s hard work. It’s regular long term employment. Yet we cannot seem to find a long term, responsible, respectful person.

The new woman started on Monday the 18th. Her transportation situation is not sustainable, although her willingness to work is excellent. Wednesday morning, F quit. Apparently we were supposed to make him feel more welcome, despite his disrespect for our requests to not eat our food, consume excess resources, keep doors closed and lights off, etc. We were being petty and he was the victim. Adios douche.

We also learned D will not be able to work at all through the winter and into the spring. His final push to finish his LVN. Now the new cg, F, with the non sustainable transportation is our only option for the moment.

The first day of winter we are again in the usual precarious cg situation that could fall apart at any moment. Same situation, different year. SNAFU.