Fucking finally. What a fucked up year. We go on as usual but everything just seems to have gone downhill. Influential, inspirational people, including a mother and daughter, gone while crazy people take power, unkindness and hatred is not just condoned but openly practiced with ignorant pride. WTF!? My Uncle died tragically. My father’s last living sibling, which leaves just him. My Dad will be 80 next June when we will gather for a family reunion in Northern California and spread Uncle Tony’s ashes. I will need to make arrangements for us to travel. So much lost and too much shit remains. Fuck 2016!

Colin has not improved, sadly. The cold makes everything worse. Not the same issue of pain but now it’s spasticity in his hands and extra bone on his hip. HIs pain is being managed as much as possible with very good days and occasional shitty ones. But his hands are like vice grips. His hip aches which causes all the muscles to contract along his side and back. He cannot bend forward much anymore. He cannot do mat table therapy any more. His hands prevent him from balancing and pushing. All they do is spasms so violently he falls over. Even putting his universal cuff on takes so much effort from my own hands they ache after just trying to slip an elastic band over his hand.

Range of motion stretches are  so much agony for him he has been skipping them some mornings, which is not good. Hot showers help but our water heater is dying and we are saving to get a new one while trying to decide which is the best for us. His Dr. started him on an additional anti spastic medication, but we haven’t seem much result yet. Next month the Baclofen will be increased in the pump as well. Until the spasms are under control again he won’t be able to do much PT on the table. His hip prevents him from straightening his leg enough to do the stander. We are back to the ric shaw, This is difficult as his hands must be tied down and they still spasm so badly he has to wait for the spasms to pass before straightening his arms. Not very effective. He gets discouraged and depressed because he wants to do things. We can only try and see how things go.

We have been talking about getting him to feed himself some meals like soup or yogurt and apples. We tried a couple bent spoons in a universal cuff and it was ok as long as his hand didn’t spasm. Once it did there was no control of the content of the utensil. We did find an awesome self leveling spoon for the disabled. But for $200? That’s as bad as the awesome off road cycle for the disabled. Only base price of $9k. We did get the Dr. to sign a prescription for the biofeedback machine. Now we need $3500 to order it.  We are looking into building a beach chair from PVC pipes and big wheels, which I have mentioned before. But that too will be over $1k. Being disabled means needing lots of $$. Insurance barely handles what we need and never in a timely manner. His chair motor has been getting worse for the past 6 months. We had a call about 6 weeks ago saying the replacement has been approved and it would be ordered. No word on it yet. His shower chair that has had no brakes for a year, an order was placed last summer. No word on that.  His catheter leakage is still an issue but we only get 1 catheter and sterile changing kit per month. I have been changing them every 1-3 weeks depending on the conditions. His catheter get plugged, it won’t flush, it won’t drain, he gets AD until it’s changed. I can find the changing kit online but the catheters are prescriptions. Insurance won’t cover more without medical justification.

And I am still lagging on getting the will/trust/special needs trust opened for a mere $2k. I think I get it all figured out, more options to cover pop into my head. With infinite possibilities to include I feel as though it’s going to be a fucking book. So I’m making general categories to encompass everything…I hope. Then it’s time to save even more from nothing.

The vehicles are still an issue. The old Chrysler van has the air bags leaking…again. They were completely replaced like 3 years ago and are bad already? We have hardly driven it in 17 months. Plus the disabled repair place in Fresno, MobilityWorks are just assholes. The monopoly they have is just wrong. They know it. They suck. We hate them. But we need to get rid of that van. More shit to do.

I was planning on doing stuff during my winter break. But naturally, my husband was sick the first week, I was sick the second week and the third I did not get done what I had hoped to finish the first 2. I still have not figured out how to manage time. I battle it well enough, but it seems to manage me.

Caregivers appear tentatively stable and I manage to have some weekends and weeknights off. We’ll see how long J lasts as she is pregnant but she only works 3 evening per week so if she can’t hang, I can do it. Losing the 40 hours per month has not been easy. Volunteering so much of my time is exhausting. I spend about $320 per month on medical supplies the insurance won’t pay for as well as co payments for prescriptions and appointments. I earn $240 maximum each month caring for him. I work anywhere from 64 hours (theoretical when all cg work their full hours) to 250 hours per month (average). I pay about $80 per month minimum out of pocket each month on medical. It doesn’t seem like much but it adds up. And the fact that I get paid anywhere from under $1 to $3.75 for his care each hour it seems there is an imbalance somewhere. But I need the weekdays covered for work. I need some weeknights covered for rest. I need some weekends covered for chores. Maybe the program expects family members to be cheap labor. I don’t know how to save with that balance except to work more. In my spare time. Yeah.

Christmas this year was a complete bust. I was sick so had to keep my distance form Colin. I entered his room only when needed covered in mask and gloves. Colin felt like shit as well. My poor husband, who was still recovering, had to cook, tend the fire and put up with my inability to manage simple things. It was the shit, perfectly appropriate for the 2016 theme. Couldn’t  have been over soon enough. My Birthday, turning 56, was no better.

4 years ago Colin was in the hospital and I spent every moment there with him. I learned how to bring him home and care for him. Nothing prepared me for what I do. They don’t teach how to deal with a future planned and lost. No one mentions the 14 + hour days following 5  hours of sleep and a full time job. How can the physical requirements be quantified? By how often my shoulders and back aches? Or the formation of bone spurs on my elbows from moving him? How about the poorly suppressed impatience at the end of a long day when he asks for 2 or 3 or 5 more things beyond my breaking point? This is the altruism of parental responsibility. Nothing that I ever imagined. Not the experience of divorcing, single parenthood or changing professions prepared me for this challenge. And I am not getting younger. My body screams every night from joints to muscles to tendons. I look at each day as a new opportunity, but it becomes an uphill struggle. Will we make it today? Can we plan and prepare for tomorrow? What the fuck happens if I die? I am still not prepared. How many times do I need to remind myself of this before I am actually fucking prepared? When do I get the chance to prepare? How do I even begin? I am always so far behind where I need to be regardless of how hard I work. What. The. Fuck.

2016 ended quietly here. My husband was in SF.  Colin had a pal come over. I binged watched Man in the High Castle, knitted a hat and grilled a tri-tip for them out in a cold drizzle. Was in bed by 10:30. 2017 began as I slept.

I keep trying to think of things I can do to improve his situation, our situation, our finances, his future and my limitations. Sometimes it seems impossible. I know if I don’t keep trying nothing will change. I won’t give up. There’s a solution or two. I just need to figure it out.

Maybe in 2017.