I have been drinking too much. It is nightly. A bottle. Fuck.
End of March finally arrived. Months of leaking catheter, nightly drenched bedding and daily leaking was finally ending. But not really. We arrived at the outpatient, went through procedure, home by 2 pm. Over the next few days, no changes, WTF.
Dr now has no clue and just prescribes more pills. We have since set up specific sleeping positions with his knees raised, 2 disposable chux beneath him, a “pad” over his stoma, a smaller chux over that and hope that he wakes up dry with a filled bag. If not, at least his skin and bedding are protected. Fucking medical industry. We have to provide our own solutions.
Medications are the usual high maintenance bullshit. It would seem in the age of massive data bases and access to all information, keeping prescriptions filled would be easy. For the basics, it is, For the controlled, no. We manage his morphine carefully as we are only able to fill it every 30 days. Yet far too often the pharmacy is “out” and takes an additional 3-5 days to fill. He runs out of a medication he is physically addicted to after 3.5 years. So we spend those days dealing with withdrawals. Never fun. Pain, cramps, insomnia, fever, etc. Until the pharmacy fills it.
On another topic , the care taker situation has “evolved and died”. We managed to hire L in Jan to replace M. She struggled with his BMP and was irritated and bitchy if she had to get up in the middle of the night. M was able to return by late February so we changed L to afternoon hours. Even that was a challenge. She never seemed happy. Snappy, irritable, didn’t listen and freaked out way too easy. We were trying to keep her until summer since we have new limitations on hours a cg can work. Overtime is being paid for over 40 hours but it must be pre approved. So we endured and altered her schedule to the easiest one possible, dinner and get him in bed during the week. She lasted about 6 weeks. Didn’t show up one afternoon then sent a bunch of text messages calling us all drug addicts and accusing Colin of faking his disability. So, she quit. In addition, M can no longer work regular weekends either so we are back to me working all day, taking care of him every evening, at night and most weekends. FML.
I posted an Ad once L quit and got several responses, all no shows for their scheduled interviews. I can only post on CL once a month for $25 or repost weekly for $25. I can’t afford $100 per month for a fucking ad.
We are still trying to manage his weight. Small portions, no snacks, lean meat, lots of vegetables. It hasn’t made a difference. His back is hurting from the weight of his bloated belly. His sides hurt from pushing against the sides of the chair. He barely fits in it anymore. He has not been exercising due to feeling so bad. He is not sleeping at night. He does not listen to music anymore, or read. He plays some games on the ipad but by afternoon the medications make him drowsy. Since he doesn’t sleep at night, he naps during the day. So he doesn’t sleep at night, which means I don’t sleep at night. He doesn’t see his friends yet. I want to have him see a therapist but haven’t found one specialized in PTSD depression in our network. I’ll keep trying.
We did get a lead on a possible alternative medication since there are no acupuncturists or massage therapists who are trained to work with quadriplegics. His pain specialist mentioned Methadone. Apparently it can be used for neuropathy as well as heroin addiction. Since he is already on morphine,we were told he might be able to switch to Methadone, stop the morphine and substantially reduce the lyrica. We’ll have to see if it pans out.
And his chair is still not been completely repaired. I put the old broken arm rest back on because 2 different ones were causing him shoulder pain. His cushion fell apart which caused hip pain as well as him sliding out of his chair. I bought 2 cushions we stacked to replaced the old one. It has been barely tolerable.
The past 6 months now 98% of his nights his catheter leaks. Daily I get up, change his bedding, clean him up, go shower, get him coffee, go to work, come home, do some therapy with him if he’s up for it, make dinner, open some wine, feed him, clean up, get lunch, coffee and clothes ready for the next day, get his bed ready, get his meds ready, watch something with him, finish the wine, get him in bed, go to bed myself, get up 2-3 times through the night, then up to change him starting the next day. I keep him on his diet, encourage him to exercise as much as he can. I really need some help.
The reality that finding regular, dependable caregivers for evenings and weekends where we are is unlikely. Even though we offer live in with private room and bath, internet, TV, streaming services and some meals. People that want to, can’t. Those we have tried end up dumping us when a closer job comes along. I am so very tired and I know Colin feels bad. He always apologizes in the middle of the night. I am barely awake, stumbling around and unable to process what he is saying. I don’t mean to be impatient. But some nights I just don’t function as well as I’d like.
My lack of sleep, no breaks, little social opportunities, no time to take care of anything beyond the most basic household tasks, no time with my husband, etc. The cycle repeats. We keep telling ourselves it will get better but I am having my doubts. There is no guarantee it will. Regardless of how much effort we make, we depend on others. Strangers who have their own issues to deal with that can make helping us a liability, even if it is long term, guaranteed employment. We just have to deal.
Hopefully May will be better. Maybe his pain will be under control. Maybe his catheter will drain properly at night. Maybe we’ll be able to drop a few pounds, lose an inch. Maybe his chair will be fixed. Maybe he’ll want to see his friends. Maybe we get a reliable, capable cg to give me a break for more than a few weeks. Maybe he’ll twitch his fingers and toes just a tiny bit more. Hopefully one of these things will come to pass in May. Maybe more.