Sunday, 18 March 2018

The Last Ride

I went for a ride in my truck today. It was probably the last ride I will ever take in it. Over the last few weeks it has become increasingly difficult to get me into the front seat, even from my elevated wheelchair. Notwithstanding David's valiant efforts, it was decidedly difficult for him today. It seems the time has come where my truck is no longer an asset, but is, instead, a liability.

Fortunately I am in the process of getting a van to replace the truck. It will be a handicapped accessible van, all setup for wheelchair access and transport. Tomorrow David and I will discuss the available opportunities for this kind of van with the Accessible Vehicles Solutions owner here in Calgary. He says he has a few ideas he could discuss with us. I hope it works.

Still, having the van does not mean a return to mobility. I doubt that I will be able to drive it, even if it has full "Easy Access" controls. These are special, light touch, electronic controls intended for someone in a position like me, or for quadraplegics and so no. I would like to try, but even so, eventually that too would be lost to me.

What I will need, if I ever want to do another road trip in my life, is a driver, a caregiver, and the money required to get on the road again. I would love to do it, in defiance of all odds, flying in the face of all expectations.The only real question, once these minor details are resolved, is where to go. There are so many places left to explore, so many to visit once again.

Saturday, 17 March 2018

Sterile Documentation

I've done very little today. In fact I did absolutely nothing from 12:30 to 3:30 PM except to nap, doze, and think. It is a dangerous thing to do, as often in these states my mind begins to dwell on the negative. I let anger about my illness and bitterness about my life outcome take over my normal, happy self. I get resentful, particularly about my ex-wife, about having spent most of my life supporting my marriage and family, only to end up alone and in this situation.

It's pointless. I am where I am. The past is the past. Today is where I have to live.

Speaking of today, this morning a Licenced Practical Nurse accompanied my Health Care Aide. Accompanied is probably not the correct way to put it. The LPN couldn't come until 11:15 AM. The HCA arrived about 10 minutes after that. So I stayed in bed for almost an extra hour today. The LPN was there to teach the HCA about proper sterile procedures for doing my in/out catheters. My doctor is convinced that my repeated infections are due to non-sterile conditions with catheterization.

This does not include the bladder infections in the years gone by. They are most likely caused by lack of sterile conditions as well, mostly with the condom catheters. However those infections happened perhaps every three months or so. While not ideal, it is better than currently, where they happen one right after the other.

The arrival of the LPN did not necessarily mean the implementation of a sterile, or at least semi-sterile procedure. The agency refuses to provide staff with sterile gloves. If I want that level of clean, I have to pay for the gloves myself. I have already contacted Alberta Health along with the Health Minister regarding this cost, but don't hold your breath. Even "free" health care has its expenses.

Nor did the LPN have a clear, step by step procedure for doing a sterile in/out catheter process. It seems her ideas of sterile differ very greatly from mine, and from the HCA's too. So after completion of a rather haphazard process, I did what I do best. I documented the procedure using best practice information from Internet research along with "in use" process where it aligned or could be adapted to approximate best practice or sterile practice. It would be fair to say I have some expertise in this kind of thing.

It's not a perfect document. There is no surety that the agency will use this document or support this process. After all, I am at their mercy. Nonetheless I am a strong advocate for myself, especially around not dying from infections. If they don't follow this process, I am going to ask both my Health Care Nurse Coordinator from AHS and the Clinical Coordinator from CBI why, or rather, why not.

And I am really, really good at this kind of documentation. They should pay me for this stuff.

Friday, 16 March 2018

More HCA Training

I just got a call from the nurse supervisor for my HCA. She advised me that she would be coming at 5:00 PM to supervise the in/out catheter process. This is happening because I complained that the routine the HCA's use is not sterile, nor does it follow what is called the "no touch method" during the process.

The "no touch" method is very specific about what steps must be taken to ensure that a sterile field is maintained around the head of my penis. It safeguards against any contamination after I have been cleaned and that particular area of my body is sterile. The basic rule is that when the HCA starts this process, at not time must my penis be placed in a position of re-contamination, nor should any of the apparatus be handled in a way to cause contamination.

All this concern around contamination comes from my continuing stream of bladder infections. My doctor is certain the re-infection after we clear up a previous infection comes from lack of sterile conditions for my in/out catheter. There are similar problems with my condom catheters however they are not inserted into my body in any way, so it's not as big a deal.

So my complaint has generated a response. The nurse called about my 5:00 PM HCA visit, advising me she would be here to do range of motion training. I corrected her and said "catheter training".  Unfortunately for her, my 5:00 PM visit involves no catheter changes whatsoever. Those happen first thing in the morning and last thing in the evening; when I get up, and when I go to bed. She didn't seem to be aware of this pattern. The coordinators had not told her what the 5:00 PM visit was about, so she assumed it would be that visit.

Now I am worried about the nurse knowing what she is doing. I am concerned.

Thursday, 15 March 2018


It's been a rough couple of days, partly my fault, partly the fault of ALS, and partly a dental issue which is nobody's fault at all. I am writing now, reluctantly, because I know if I don't write today there will be concern amongst those following me. So here is the story, starting with my part.

On Tuesday night, Anne and Anisa came over the bottle wine. I would like to say they helped me bottle wine, but that would completely misrepresent the situation. I was banished to the living room while they did the work. At least they let me get involved in making dinner, a little bit. So, banished as I was while they worked, I had nothing to do but test the new wine and drink some of the aged wine for comparison. The new wines were a Chardonnay and a Cabernet Sauvignon. The aged wine was a Montepulciano. I'm not sure they were fair comparisons.

Anyways, we bottled wine. Then we had dinner. Then we bottled more wine. Then we cleaned up. This whole process took us well past my normal bedtime, so I decided to make a night of it. I had my HCA set my sling into the wheelchair so I could sling myself to bed. I asked Danny, who came after all the wine was bottled thus forcing himself into the position of clean-up, to put a tie-down strap across my bed so I could pull myself instead of just hanging in the air hoping for a breeze or gravity or some other non-intertial factor to drive me across the bed in my sling.

My friends left. I stayed up. Late. Very late. It's something I don't often get to do, so it was 2:00 AM before I decided to stop binging on Netflix. I wheeled into my bedroom, lifted out of my wheelchair, grabbed the strap and pulled. This is when I discovered that the pull put me at 90 degress to the bed's direction. I had no manner in which to rotate the sling. I was over the bed, trapped in the wrong direction.

When in doubt, use force. That's what my Dad always said. He wasn't often correct, but it was what he always said. So I heaved myself back to the wheelchair, wanting to use it as a twist and push object in order cross the bed while spinning into position. Unfortunately I failed to notice that my catheter night bad had slipped from it's position on my lap, hanging itself just low enough to snag the edge of the bed's sideboard. I pushed. Hard. The night bag snagged. My catheter came snapping off of my penis allowing the whole shooting match to fall to the floor.

On the other hand, the twist worked, in two ways. First, I found myself such that with a minor effort I could do the last spin and drop nicely into bed. Now remember. I am in my sling. By this time I had been working on this effort for nearly a half hour... in the sling. So I reached down and grabbed the bed sheet, that reach creating a substantial forward bend in my body, thus releasing a small but not trivial bowel movement. I set down on the bed, laid in place, and called Home Care to come and clean me up. It was now 2:29 AM.

The Night Nurse from Home Care arrived at 3:20 AM. It only took her about 30 minutes to clean my up. She was off and at the ripe hour of 4:00 AM I finally tried to sleep. Unfortunately try is all I could do. Sleep would not come. I tried turning, sleeping on my side then on my back. I tried counting; I must have counted to a hundred at least half a dozen times. Then, in one final, desparate effort, I thought I would try to turn competely over, something almost impossible for me to do. The advantage of this effort is that it would exhaust me as well and put me on my other side, relieving the pain in my left shoulder as well as the pressure on my left butt cheek.

It was 6:00 AM. To make myself ready, I grabbed the catheter night bag, lifted it across the bed, then inadvertently dropped it, where it came to rest for a moment halfway between the top of the bed and the floor, the weight of it all hanging on my catheter's condom. The condom held, however the penis band slid off, leaving the condom hanging by the thinnest threads of flesh. I was twisted on the bed, having shifted my head and shoulders to the right while my non-cooperative feet stayed on the left side.

I decided to keep going, knowing full well what would happen in the course of the activity. I forced the roll of my feet using my shoulders and arms to well past their full extent. It hurt. I groaned in pain as my body slowly toppled over to the right, enough in place so I could sleep. Then it happened again. My condom came off. I grabbed my pee jug, put it beside me, and decided to sleep, peeing into the jug if required.

Pee came. Sleep did not. At all. Finally at 7:15 AM I gave it all up, calling for CBI Home Care. They sent Samhar, my regular HCA. She arrived at 8:04 AM, tidied me up once again, and was on her way by 8:30 AM. I rolled on my side and finally felt the delicious flavour of sleep in my brain. I managed to sleep for about 90 minutes.

Samhar arrived at 10:30 AM for my normal morning routine. I was so exhausted I did not shower. She wiped me down instead. She put my in my power wheelchair where I spent most of the day napping. My only task was to put the laundry into the dryer, then take it out when it was done. However I had a 4:10 PM appointment to get a filling repaired. I napped past my deadlines, so I only managed to get the laundry into the dryer at about 3:00 PM.

I went to the dentist for what I thought was a simple filling replacement. This was at 4:10 PM on Wednesday. We began trying to freeze the maleficent tooth. It refused, and refused, and refused. The dentist ended up using over a dozen injections of freezing agent in various areas of my jaw and lower lips. Finally the tooth and jaw froze up, along with everything on the left side of my face right up to my ears and halfway up my nose. He fixed the tooth in about 45 minutes. I was sent home.

There was never so much joy within as there was when Kabira came early last night. I was into bed at 9:00 PM. I took a zopiclone, sending myself in the the deepest, most enduring sleep one can imagine. I didn't wake up until 10:30 AM today, at the arrival once again of Samhar. I also awoke to discover that my jaw was still frozen. We did our morning routine. Samhar put me in my chair. I was still exhausted, still needing rest.

Unfortunately this morning was the day when the ALS Society was coming to repair the damaged wheel on my wheelchair. The bearings on the front right caster had completely shattered on the inside of the wheel. Alan and James from the Society arrived at 11:38 AM. They worked for about 90 minutes on my chair, while, at the same time, my AHS Nurse Coordinator arrived to review some things from me arising out of our Tuesday visit. I was on the couch until all parties were done and I could get back into my PWC.

Once in, I parked in front of my window and napped until about 5:00 PM today, when I started this blog post. It's taken me 40 minutes to write this. The freezing is just now finally leaving me. I'm tired. I want to go to bed. It is my sincerest hope that my HCA for tonight arrives early, as early as right now perhaps.

Tuesday, 13 March 2018

Cushion Adjustment

Pain. Butt pain. It's not like I am the Princess and the Pea. It's just that there are so many things which impact my comfort, and more importantly, the level of pain I experience on a daily basis. Never mind the neuralgia. Never mind the pulled muscles. Plain old butt pain from sitting in a wheelchair all day is probably the worst.

Yesterday the ALS Society delivered a new cushion for my PWC. It's slightly larger than the old one, allowing for the larger seat on the chair. Yes, my ass is getting bigger. There are no exercises you can do in a chair, or on the bed, which will reduce butt size on a near quadraplegic. So this new cushion is intended to provide more support to a larger me.

The problem is that the cushion was delivered fully inflated. This is significant, as even a posterior well padded does not respond well to a cushion well inflated. The cushion is resistant to self-adjustment, something it is designed to do, when it is fully inflated. There is just too much air in there for things to slip and slide from valve to valve. Each bubble is full already.

What needs to happen now is I need a cushion expert, or more correctly as seating specialist, to come and help me adjust this cushion. There is actually quite a lot of skill involved. You have to measure the pressure in four distinct points while I am seated on the chair. It means sliding your hand under my butt, palm down, to determine the level of resistance between me, the chair, and the cushion. If you can move your fingers down, touching the chair surface, without much resistance, the cushion is low. If you can't move your fingers down, the cushion is too full.

It is not as simple as it sounds. There is a fair degree of subjective judgement in how far down you should be able to push, somewhere between 1/4" and 1/2", as well as judging when it is too hard to push down. You might think that would be easy, but it's not. Last time I got my cushion adjusted, the specialist took almost 20 minutes to get it right.

This is part of the reason I hate change. It takes a lot to get some of this stuff just right. Now we've had to change my chair cushion, which triggers all kinds of additional change. It takes time. It takes people with skills. It's tiring, both waiting for people and waiting while they work.

Monday, 12 March 2018


How do you cut, or trim, your fingernails?

There are only two or three ways to answer that question. You can cut them with nail scissors. You can use some sort of special nail trimming tool. Or you can cut them with nail clippers. Me? I prefer the clippers, especially over the last few years as I have slowly been losing fine motor control and strength in my hands and arms. Then, beyond the tool you use, there is one way, and only one way, to cut your own finger nails. That is using the left hand to cut the right, and the right hand to cut the left.

Unfortunately that slow degradation of ability in my left hand has become a true problem for trimming my nails. My right hand is up to the task. I grip the clippers between my thumb and the side of my index finger, position the business end on the target, and clip away. On the other hand, quite literally, it is not quite as easy. I grip the clippers in the same manner, between my thumb and index finger, position the business end on the target, but do not have sufficient strength to overcome the resistance presented by the nail itself. I can easily operate the clippers until such point as I actually want to clip something. Then it all comes to a grinding, back-pressured halt.

Instead, to clip my right fingers with my left hand, I am compelled to place the clippers between the ball of my hand, at the base of my thumb, then put the other part across three or four of the fingers, those fingers providing the leverage for clippage. It's not as accurate a method as the designed method, the one with the thumb and index finger. That means I inevitably have jagged little bits here or there which I may or may not be able to file off, depending on the cooperation of my hands, along with my now failing hand-eye coordination.

It will come time, soon, when I will have to ask Home Care about trimming my nails. I'm not sure if it will be part of my Care Plan. I know that Foot Care is considered outside of the HCA realm, meaning they are not permitted to even trim my toenails. I suspect that hand care, or more correctly, fingernail care will likely not be covered either. That will mean paying extra, or just letting my nails get sufficient long such that someone gets sufficiently disgusted and trims them for me. I'll let you all know how this works out.

Sunday, 11 March 2018

The HCA Dance

There are HCA's who work with me who always seem to be in a rush, going through the motions as quickly as possible, sometimes so quickly that they forget things. Now I understand that things can be forgotten, especially when there are so many little things day to day. Yesterday, for example, my HCA forgot to put on my shoes, even though I had asked. She wasn't rushing. It was just one of those things. On the other hand, for some of them the hurry is a constant. Asking them do to something different, something new, is almost guaranteed to draw a scowl.

I've had an idea for quite some time as to why some are hurried where others are not. So today I asked my morning HCA about how her work was structured and how she got paid for it. The conversation was enlightening.

First of all, the HCA's are often given multiple clients with either the same time or within a narrow block of time. The "coordinators" then leave it to the HCA's to negotiate their schedule. That's why one of my Saturday HCA's asked if she could be here at 10:00 AM instead of 10:30 AM. She has two clients in the same time window. By adjusting me forward a bit, and the other client back a bit, she can care effectively for both of us. However some of the HCA's seem unable to do this negotiation well, ending up with crowded schedules where they have to hurry through to see everybody.

I try to be flexible with these needs. I recognize that others have care needs and waiting is frustrating for all of us. I am reasonable. In most cases if they HCA needs a half hour here or there, I don't make a fuss. If it gets to be an hour, then I start to assert myself. It sets a boundary, and it makes life more manageable for them.

The second factor is how they are paid. If the HCA is given an hour to work with me, but finishes in 30 minutes, the HCA is paid for the full hour regardless. So if an HCA can cram two people into a slot designed for one, or even close to that, the HCA gets paid more, as much as twice the normal hourly rate. Getting done with me in a hurry when there is another client waiting means they make more money.

In this area I am not terribly flexible. Cheating my time to make more money doesn't seem right to me, especially when the rush produces errors in care. I have enough issues with my health. I don't need to let that profit motive make things worse for me. I understand their point of view; their hourly rate is really low, barely above minimum wage. So by cramming they can make a better income. I need them to understand my point of view, that rushing my care insults my humanity and can end up in disaster.