Toilets and he's just so damned agreeable

I am really really REALLY tired of dysfunctional toilets. Any regular reader of my blog, or visitor to our house knows that we have serious toilet issues in this house, to say the least (and at least 4 people who read my blog on a regular basis have experienced this). Currently only two (of 5) toilets actually work. One is in Offspring's room upstairs, but you have to hold the handle down for a long time to get it to flush. The other is in the upstairs apartment area, and the same caveat about holding the handle down applies. Plus is really, really cold up there right now. Poor CountryGrrrrl had to sneak into Offspring's room at night to use the bathroom since the one in the guest room doesn't work and the apartment was too cold to sleep in. The one in our bedroom has a big drip in it such that it runs all the time. So I shut the water off until I can fix it. The one in the guest room has never worked (despite Daniel's best efforts, thank you) so I shut the water off there too. The one in the downstairs hallway regularly overflows. It has overflowed at least 10 times in the last week and its making me crazy. 

You know what makes me crazy about Wheeler? He has a habit of answering questions I don't ask. I like to ask yes/no questions. He likes to answer with anything but a yes or no. 

Are you hungry? 
I could eat. 
Yes, but ARE YOU HUNGRY??

His favorite response is 'that would be fine'. 

Do you want a blanket on you? 
That would be fine. 
But do you WANT a blanket on you? 

Do you want me to shower you now or later? 
That would be fine. 
Uhhhhh, which one, now or later? 

Should I turn on the humidifier? 
That would be fine. 
Yes or no my man, YES or NO!! 

I really should be grateful he is so agreeable, for he is above all else agreeable. But I am well known to be cranky, easily irritated and downright annoying*. So even agreeableness annoys me. I need to work on that. Maybe on a day the friggin' toilet doesn't overflow.

UTIs R Us

Poor Wheeler. If its not one thing, its another. He felt really awful this morning and his urine looked awful, massively cloudy, so gukky that I wasn't sure it was even able to run down the catheter into the bag. Then he got a horrendous pounding headache, which signals autonomic dysreflexia.

AD is a result of the nervous system going berserk because there is some kind of noxious stimuli causing distress in one's body below the level of the injury. So due to paralysis and impaired sensation, the person cannot identify the source of the noxious stimuli. It's sorta like if you or I sat on a tack but couldn't move to get off of it, the pain would increase and increase and put you into quite alot of distress to say the least. But a para or quad can't necessarily tell you what is bothering them, or if they can, often cannot do anything about it for a variety of reasons (such as in Wheeler's case, uhhh, he can't move at all). Common reasons for AD are a too full bladder (kinked catheter if indwelling, not cathed frequently enough if intermittent), full bowel (imagine if you ever really, really had to go but not be near a bathroom (or the woods if you're a bear), that's what its like), a urinary track infection (pain from the UTI alone or the resulting gunk stops up the catheter or slows the drainage, or both), skin pinched (e.g. sheet or pants bungled up underneath one), or, some other injury like breaking a bone in the foot or leg, a burn, etc etc... the list goes on and on. If the cause cannot be identified, a stroke can result, so it is NOT a matter to take lightly. If AD is really bad, the bad boy of fixing AD in a hurry is nitroglycerin. It lowers BP in a hurry, precipitously, but that can give the opposite problem of too low BP, which can cause fainting and other bad stuff. So nitro is a last resort if you cannot get the problem figured out.

Keeping in mind that Wheeler is extremely stoic - he asked me for nitro today. He was having a horrible horrible pounding headache, and I couldn't identify anything obvious that was bothering him other than really awful looking urine. So I gave him the nitro and his BP went down. We were 90% sure it was his bladder giving him problems, so I needed to irrigate him, switch out the SP cath and put on a new bag. The key to all of this is the new bag, its the last step. There's no sense in irrigating if you're going to be an old bag back on, the germs will crawl back up it. If you put in a new cath without a bag, it will run all over the floor, so that's not an option. But of course, I didn't have a new bed bag to put on. ARGH. I knew we were low, in fact, I knew we were on the last one, and I kept meaning to buy more, but I just never got to it. Actually, that's not true. I drove all the way to Raleigh, to the only place that carries them in stock, but they closed at 7 pm and I arrived at 7:20. What drug store closes at 7 pm?? So anyway, we didn't have a new bag.

I waited a bit to make sure he wasn't going to pass out, nor that his BP would pop back up, then I hustled Offspring into the car and off we went to get a bag. Got the bag, came back and irrigated, changed the supra, hooked up a new bag. This is alot more complicated than it sounds. Here it is, in approximate order, although its not completely this process every time.

First, the irrigation tray - container, plunger, must supply distilled water + boil the water to purify it before instilling into bladder. One should not irrigate routinely, but when the urine looks like it did, one should irrigate with sterile, distilled water that you remember to buy at the store and to boil and allow to cool down beforehand.
Insertion kit, including drapes, synringe with sterile water, sterile gloves, surgical jelly, antiseptic swabs. First you have to suck the water out of the balloon with a syringe (that you remembered to save from the last time you did this because the new one in the kit is for inflating the balloon; I can't tell you how many times I got part way through and realized I didn't have a non-sterile syringe to deflate the balloon). Drape the belly, swab to sterilize, put on sterile gloves, put up catheter, coat with jelly. After this point, DO NOT TOUCH ANYTHING you don't intend to go directly into his body (e.g. don't scratch your nose, skin has nasty germs on it).


This is the indwelling catheter (same used for foley as suprapubic), it goes into a hole in his belly below the belly button but above the pubic bone. This goes directly into this bladder then you have to inflate that balloon to ensure it doesn't fall back out of the hole. If you don't put the catheter in within 20-30 seconds of taking the old one out, the hole on the outside of the boday closes up for good and you need surgery again to put it in again. Nothing like a little pressure eh? The syringe above is used to inflate the balloon, which is inflated in this picture. It goes in deflated and you push water through the thingy with the white tip.



Connectors between tubing and bags/catheter tip, mostly for leg bags, but sometimes for bed bags if the catheter and bed bag brand don't match.


Insert the catheter tubing into this strap that goes around top of thigh to anchor catheter to body:


This is then bag into which urine drains when in bed:

And just FYI, this is a leg bag, for wearing with clothing in wheelchair:


Extension tubing that goes from catheter to leg bag or catheter to the bed bag if the bed bag doesn't come with tubing (it usually does):

Straps that anchor leg bag to shins (you need two, one by knee, one by ankle):
As I've mentioned here many times: don't break your neck.

Caring for the caregiver

As you may have figured out by now, I am an avid New York Times reader. A number of recent articles piqued my attention because of their particular relevance to our lives.

About caregivers, as the Well Spouse website/foundation says, that when one is sick, two need help. That is astonishingly true but yet it is not recognized. At least never once in my experience. I have to reach out to others in my situation. This is discussed here: Who Cares for Caregivers?.

This article talks about how its really hard in actual life for a caregiver to 'take care of herself' It's Hard to Stop Being a Caregiver

I've been asked so many times why what I do for Wheeler isn't covered by insurance. Because anything deemed 'custodial care' is not reimbursed. From Medicare Doesn't Pay for Jack (ok, that's not really the title), the author writes

"Nothing shocked me more in the early days of caring for my elderly mother than the discovery that Medicare, the U.S.’s universal health coverage for those ages 65 and older, does not pay for so many of the things the frail elderly require. Not home health aides for those who can’t get out of bed, bathe, dress or feed themselves. Not an assisted-living facility, with handicap-accessible apartments, congregate meals and transportation services. Not nursing homes where the most helpless of the elderly live out their days with round-the-clock supervision." 

And private insurance is no better; Wheeler is not on Medicare but insurance companies use Medicare standards typically as the basis for their care guidelines in situations of the elderly and disabled. So I get no help with anything for Wheeler. When we do have a caregiver, we pay an hourly wage out of pocket entirely, so we have to always weigh the benefit versus the substantial hit on our finances.

This next article Don't Call Me Sweetie resonated because I read it while Wheeler was in the hospital, right after he had been dismissively addressed as "sweetie" by the hospitalist and not in a nice way, something I think I mentioned in a previous post. I'd remember, but my mind is addled, and I'm lazy to go look and see if I mentioned it or just wrote it in an email to CherkyB's wife, who is marvelous by the way, she was my link to sanity last week as I furiously texted emails to her as I cleaned up Wheeler over and over again all night long (that two hour time difference was a life saver, lol).

And you'll note that these articles are all geared towards those who care for older people, either spouses or adult children. However, all of these things apply to younger caregivers of those with younger spouses who are disabled. I'd put forth that we younger caregivers face all of the hardships faced by caregivers of the elderly plus more challenges.