I am overwhelmed. This is my life every day.  The usual coarse has taken place. Once I felt a sense of stability and hope, it all changes. I need to expect that nothing will be what I need, let alone what I want. Maybe then, those sudden, gut wrenching changes can be anticipated and planned for.  But I am not there yet. So it adds stress upon stress. Chronic stress is one thing. Chronic sudden stress is another. CSSD?

By mid January, D was back full time as Colin’s primary cg. He is the one who can get him in the shower, do all therapies and take him places he wants to go. Lately It has ben poetry readings where Colin is a big hit. Folks listen to his reading, come up to him after and look forward to hearing him the next week.

Sadly, this event occurs on a fucking Tuesday night at 10. WTF?  He and D get home between 1 and 2 am. I have gotten up when they get home to help get him in bed, but the last time they insisted I remain in bed and let D the care of it. D the stays the night and is up by 7:30 to get Colin’s day going.

However, as of late February, D has yet another family situation to deal with, leaving us without his assistance for at least 3 months. D is the only one who can do the stander, get him in the shower and do the mat table therapies. No one else works the weekends when I am home to learn how to do this. C comes in sometimes, but she is not competent enough to learn this, unfortunately.

A is still needing to move but has been assisting in the meantime. Now we need him more than ever.

We hired C. We found out she is M’s sister in law, She has not been able to get to work on time yet. We moved the start time from 8 to 8:30, but she still showed up at 9 am. We changed it to 12 pm, but she cannot get here before 12:40. A has been helpful enough to come in from 8 to 1 on days that D wasn’t working. Now I am asking for him to do this 5 days a week. It may be too much.

I have the ad up. Folks respond but won’t follow through with either registering for IHSS or showing up for interviews. I have so few option and I must depend on someone who takes advantage of us and is not honest about the hours worked, another attribute that C has brought. We are starting to consider paying extra out of pocket and, or having a temporary live in person. It is hard to think about having strangers come live with us. But it may just be what we need to do.

There is also Colin’s pain. Still chronic after 16 months. We have pre op orders for the spinal pump which we hope to get done before D leaves. His medications are as ineffective as ever. We have not increased any dosages to spare  his liver and other vital organ systems. Some days are better than others. It may be April or May before we actually have the operation done.

I need to find a way to bring less work home, get more therapy done on the weekends, get my minimal housework done, spend some amount of time with my  husband and make a second or two for me. Yeah.

We did add a puppy to our household, Daisy. She is for my husband. The only person I would be with, if I could. We are trying to plan some yard projects to fence in the back and add a stone patio that Colin can have access to. I should prepare the gardens which will need planting in the next month. I wish I could vacuum the ceilings and baseboards, dust everything and replace the 25 year old flooring everywhere. I want to redo the master bathroom, the second bathroom floor and get rid of all the goddam popcorn shit ceilings I should be vacuuming every year. We need to plant trees, redo the driveway, burn the piles of branches and set up an outside home for the fucking 14 year old cat. She needs to go back outside. She and the puppy compete for shitting where they shouldn’t award. Fucking pets. Their maximum existence percentage is beneficial and bring joy. But the goddamn minor percentage ( where both fluctuate by the fucking moment) adds to the the rest of WTF;FML. By now, after 30 months since “the accident”, WTF is the story of my life. The final week of February 2015. I am no closer to resolving the major issues we have been faced with since September 2012.

The last week also brought the usual roller coaster of events, both good and unfortunate. We received his pre op lab orders on Friday the 20th. Tuesday the 24th he got them done. Thursday  the 26th the doctors office scheduled his pre op appointment for Friday at 2:20 and the surgery for the pump on Thursday March 5th.

Friday I left work at 2, got the the doctors office by 2:30. A had brought him down and he took my car home. They told me the van was not lifting again. Colin’s brother had the compressor in his car in Sacramento. My husband left work, found one and brought it to us. We had been waiting to see the doctor for an hour. It was another 90 minutes before we were able to.

The doctor let us know they had to rebuttal the insurance. A doctor at the insurance had decided that Colin did not need the pump. I guess drugs that don’t work are better over his lifetime than trying something that could bring him some sort of comfort. I have lost so very much respect for the medical professionals in our country.

Colin was scheduled to get a pain pump, then have the baclofen put in after the morphine was done being adjusted. He asked if getting the baclofen first would be better. We had been talking about it and decided to ask the doctor what he thought. Apparently they do not discuss things, they decide. He got up saying he would find out. He came back in said “you are off the surgery schedule”. Colin and I were shocked. WTF? Colin instantly asked if he could get back on. “No.”  Colin tried to tell him he would rather get it in sooner but the man did not listen. He said the baclofen first required a longer hospital stay which needed to be scheduled and it was not something to “just get done.” We left 5 minutes after seeing him. When we got in the van, we did not understand what happened.

I got him in the van, hooked up the compressor but the van did not lift. It was all the way down but the pressure in the bags was full. Now the van needed to go back to the mobility place, which usually keeps it for at least 4 weeks. As usual I need 5 of me, 60 hour days and a million dollars.

We limp home, have dinner and try to relax.  Later after thinking about it I went out and found the “kneel” switch was turned off. Once it was on, the van lifted just fine. One fortunate turn of events.

As far as getting care, that is going nowhere. One person was supposed to come Saturday the 28th, but did not. We placed an ad for a temporary live in. $350/week + room and board for working Monday-Thursday 8 am to 6pm. We had a few responses. One person asked for $450 and to “keep it off the books”. We will never be that desperate I hope.

We now have 8 days to find someone to replace D until June. Someone who we can trust to take care of him, who can learn quickly, follow instructions, make it to work and on time. Seems like too much to expect.

In the meantime, he is still in pain, he has been discharged from therapy until after the pump is put in and we have nobody to help him do more than the ric shaw during the week. He hesitates to ask me on the weekends as I am usually overloaded with work both domestic and professional.  He still doesn’t want to read. He misses the books, turning the pages. It’s too cold to go outside. He has no way to go hang out with his friends. Once D is gone, he will be missing his poetry night, the only thing that he looks forward to. I watch him fall asleep from pain or watching some show on TV he can barely pay attention to. I wish I could do something, anything to make his life better. Right now it is full of pain and boredom. He needs to be active, to go places, to do therapy everyday. We can’t even find someone to just take care of him.