Friday, 16 February 2018

Pee Happens

I'm wet. My God damned catheter came loose! It doesn't seem to happen all that much these days. Mostly my catheter days are uneventful. I think it came loose today because we put the catheter on, then did exercises. I think all the lifting and stretching pulled it loose. So I've called Home Care to come and change both me and the catheter.

Alberta Aids to Daily Living, or AADL for short, will cover one condom catheter per day. That means I pay for both the in/out catheters and any catheter over the monthly allowance of 35. They are generous in recognizing that there are failures. What this system doesn't recognize is that the catheterization routine I have, where my condom catheter is removed and replaced every evening to allow for the in/out catheters, means that I go through two per day by default.

The cost of the in/out catheters is about $70 per month. The cost of the additional condom catheters is $90 per month. Right now I am paying for both the condom catheters and the in/out catheters. I applied for coverage for the in/out catheters based on the doctors note that I needed them. So, as of March first, all I have to do is pay the $90 a month for the condom catheters. I will be applying for coverage for them as well soon. Hopefully they will understand the logistics of this relatively new routine.

For certain the in/out routine is helping with my general health and well-being. I suspect it will mean far fewer visits to the hospital due to infection. My only real issue is that each month I spend more than the cost of a decent bottle of Scotch for night cathetezation. I would go to night time diapers, but I have to pay for them too, and they cost about the same.

I could also try going back to sleeping without a catheter at night, something that would be much more comfortable. The problem is that I am having increasing trouble reaching and lifting, so getting the jug off the dresser would be problematic. That's why I went to catherization at night to begin with. I couldn't consistently get to the jug on time, leaving me with lots of pee soaked towels and wet bed pads.

Today I will spend $2.60 for my additional catheter, plus another $2.60 for my night time catheter. I will also spend an hour or two sitting here with wet pants. I could get angry about all of this. I don't. At least not right now. It might show up later, but I can live with it. I have to. I pee. So does everybody else. Only I pay for it, rather unhappily, like I was using an over-priced pay toilet.

Oh well. Shit happens. Or in this case, pee happens. It's life; living with ALS.

Thursday, 15 February 2018


Anger and frustration are always somewhere within me. Some days, like yesterday, these ugly twins don't just bubble to the surface, they explode from me like lava pouring out of the volcano mouth, my rage a pyroclastic flow tumbling down all around me. I am defeated, Herculanium beneath Vesuvius.

I'm tired, worn out. I want to go to the mall across the street but lack the energy. I want to watch something on TV, but the controller feels to heavy in my hands. It's even tiring to type. I think today is one of those days when I simply need to rest.


Wednesday, 14 February 2018

Is It Time To Freak Out Yet?

I get stressed out sometimes about the silliest things, things which should really not bother me at all, things which should not matter, do not matter, in the long run. Right now I am freaking out about "self-managed care", a different model for home care than I currently use. Basically self managed care is where the Alberta Health Services determines how many hours of care you truly need each week, then gives you funding for those hours based on an hourly rate they determine. Then you go out and hire your own care workers based on what you believe to be your needs. If you use less than the government funding, you give it back. If you use more than the government funding, you pay it out.

What this method does for government is lower their costs. They pay the person needing care less than they would pay a caregiving agency. Theoretically I don't have all the overhead of an agency, plus there is an expectation that some of the overhead would simply, and magically, vanish if the task of it all is given to me instead of an agency. What this does for me, or the other clients in my situation, is to provide control and consistency over caregiving. I decide when I want care, how much I want up to the government approved maximum, and I arrange care with my own, privately hired caregivers.

This is a thinly sliced sandwich, all depending on the amount of hours the occupational therapist from AHS Home Care decides I need each week. Remember too that this is a 7 day week, not a 5 day week. In theory I take that budget and see if I can get the care I need. These days I am considering a live-in care giver. This will entail me interviewing, selecting, hiring and training someone. There is no compensation from AHS for this process. It will also require forming a corporation to pay the person, or hiring an agency to do that work. I will hire an agency, a bookkeeping firm likely, and have them take care of all payroll issues. Of course that will cost money, money that must come out of the hours allotted to me each week.

The hours allotted to me will not necessarily be the same as those allotted under the Care Agency model, the way things currently work for me. They may be more. I don't see any way there could be fewer hours granted to me; my care needs are constantly increasing. Nonetheless, it all depends on my assessment, happening on February 23rd.

The rational me says "Don't worry. Make your decision once you know the numbers." Of course the irrational me, the one which wins most of my internal battles these days, says "There are so many things that could go wrong. What if they assess me for fewer hours than I need? What if they assess me for less than the cost of a live-in? What if, somehow, they decided I am already getting too much care and decide to reduce my care level from the agency?" And so on, and so on, and so on...

There are plenty of other things for me to worry about here, places where I can allow anxiety to take over, something happening more and more. The hiring process, arranging the payroll agency, hiring for coverage on days off for the live-in; the list goes on and on.

Back to the rational side. Live-in care will likely cost about $2,500 a month. Extra costs associated with that will likely cost another $300 to $500, more likely the $500 figure. Then there are the statutory and weekly days off. Home Care live-ins only get one day a week off, but they also get the typical statutory holidays, usually one day a month. So I need funding for another 6 days a month. Then there is a sick day allowance of another 2 days a month, although I don't know if that is required under provincial law. Bottom line is I likely need another 8 days a month of coverage. Each of those days is expected to be 12 hours, but with only 6 or so hours of support; this is a likely cost of $120 to $150 per day. So that means I need a minimum of $3,000 + $1,200 in funding.

Now take that $4,200 need and divide it by the mysterious AHS funding rate; let's assume, for shits and giggles, that the funding rate is $15 per hour, the current minimum wage in Alberta. That means I need to be approved for 280 hours a month, or about 9.3 hours per day. Right now I get about 4 hours per day. At that rate, it's not going to happen. On the other hand, if the funding rate is $18 per hour the hours per day become 7.7 hours. And so forth.

It all depends on three mysterious factors, as yet not fully explained. How many hours per week will be included in my assessment? That I will likely find out in a couple of weeks. How much an hour is the funding level? That I will also likely find out in a couple of weeks. And finally, how much will it cost, all in, to get live-in care plus appropriate coverage for days off? That remains to be seen.

So. All I get to do now is freak out, stress out, and generate anxiety over all this. I hate this fucking disease.

Tuesday, 13 February 2018

Why Am I Here?

Idle time is the worst time of all. It gives me time to think, to worry, to become anxious. It leads me down the path to depression and sadness, wondering about the changes which have happened, the changes to come. It takes me into the land of shadows, laying me down into a deep pool of the darkest of waters from which there is no escape, no up, no down, not even a ripple to remind me of life and living.

My body has defeated me. My legs are dead. My hip and trunk muscles have retreated to near uselessness. My arms and shoulders are in rapid decline. I am unable to complete even the simplest of tasks, accomplish the smallest of things. I can't pick up. I can\t put down. All I can do is sit, in my wheelchair, and wait upon the ministrations of others.

I was sitting at my window today, looking out at the traffic rolling by on the messy street below. As is usual here in Calgary, temperatures have gone from the - 20's to 10C near overnight. The thin sheet of snow and ice on the heavily travelled portions of roadway have melted into dirty pools of water, unable to escape thanks to sewer drains still covered by the deep snow on the verges of the roadway. There remains a substantial berm of dirty snow, surrounded by slush, in the middle of the road, along the edges of the road, courtesy of the snow plow efforts in recent days intended to clear the road for cars, while ignoring the challenges of those of us bound to sidewalks and crosswalks.

Should I attempt to go out today? This reprieve from winter will last for today only. Tomorrow all this melt water will once again be ice, making the driveway from my building's garage once again impassable. By tomorrow evening the warmth of today will become -20's once again. The daytime highs will be well below freezing, with snow predicted as early as tomorrow, for the balance of the week. I will once again be snowbound, trapped by winter.

Perhaps it will help with the purposelessness I feel. Perhaps it will invigorate me. Perhaps it will leave me tired, uninterested in making, or eating, my dinner. Perhaps I need to do it just so I can feel less trapped for the balance of the week or however long it takes for the snow to recede to a point where I can once again venture forth. I don't know. I really have no ambition either way. I have nothing to do, nothing I need, nobody who needs me. These days are filled with pointless ruminations, meaningless activity. I merely exist, taking up space on the planet. I depend on the care and attentions of others. Why am I here?

Monday, 12 February 2018

Tired Of It All

I'm tired today, rather like most days. Likely I am still recovering from the weekend, what with partying and shopping and all. I am so grateful that I can still do all these things, although my fingers are becoming less and less willing to type it all out. Voice recognition software may be coming soon, although I wonder if not being able to type might be one of those "line in the sand" kind of things. I'm not sure yet. I probably won't be sure until I get there.

A number of small things, plus a few large things, have reminded me over the last week or so that progression continues, things like not being able to open a rum bottle, being unable to pick up my 1L jug of water if it is more than a couple of inches away from me, finding it difficult to open the door of my truck while seated inside, struggling with washing my head while in the shower. There are lots more, many things which increasingly move from merely difficult to impossible. These go along with the increasing general weakness, quick exhaustion, tiredness, you name it.

Again it's that whole "line in the sand" thing. At what point does my quality of life reach a point where I am done? The reality is that life demands you keep living as long as you can. I know a great many pALS who will do almost anything to keep going, including breathing assistance, feeding tubes, and a host of other mechanical interventions. I have always maintained I do not wish these interventions, yet as I get closer I am almost afraid of what that means. Of course it means dying. I just don't want it to be too soon. Actually, I don't want it at all, not from ALS, not from anything.

The only way to win against ALS is to not play. There's the rub. Everytime I see a new research discovery in the field, I find hope leaping within me, hope for a cure before I die. I'm unlucky that way. I am certain a cure or effective treatment will be found almost immediately after I choose to leave this planet. It is almost a surety that my death will bring a startling new discovery which will lend itself to an easy treatment which prolongs life and stops or even reverses the effects of ALS. People should be thanking me in advance, perhaps even urging me to exit, stage left, as soon as possible.

Of course that won't really help. It's my lifelong cynicism leaping to the fore. I might seem like a positive, happy person. That's not completely true. Somewhere in me, ready to leap out, is the angry cynic, looking for something or someone to blame for what has happened to me. There is, as yet, no known cause for ALS, so there is nobody, not even myself, to blame. In the meantime, in spite of all these daily reminders, large and small, of what is going to happen to me, I will try to find the humour, try to find a reason to keep going. But today, boy am I tired of it all.

Sunday, 11 February 2018

Trucking With The Power Wheelchair

It's been a busy couple of days. I didn't feel up to writing yesterday what with laundry to do and Emma's party to attend. That's a full day for me. Today was just as full. David took me out to Cross Iron Mills for lunch, then to Costco for shopping. Believe or not, that took all of five hours, so my day is done. Well, almost done. I'm writing and enjoying a giant bowl of breakfast cereal for dinner. I had a big lunch.

The real objective of today was to see how we could get me in and out of my truck using my power wheelchair. It's something David and I have done before. It's something others have done with me too. But it's been a while since last winter, so we both rightfully wanted a refresher. Since my truck is once again insured, today seemed like a good day.

There were new lessons learned today and old lessons re-learned today. The first lesson was about my feet. We initially tried to transfer me up into the truck, which is about two inches higher than the highest lift on my power wheelchair. We left my feet resting on the wheelchair pads which in turn held my legs back as David tried to push me up the slope. I slid sideways, slipping half off the transfer board and lodging between the truck and chair. After some effort, we managed to get me reseated. We tried again.

The second lesson we learned was about getting me up that two inches. After placing my left foot into the truck and my right foot over on the left foot pad, David pulled me up the transfer board, not all in one strong motion but in a series of smaller, easier tugs. It took longer but it meant even someone not so strong could probably do it. That's important for future users.

The third lesson was that it's a lot easier to get me out of the truck than into it. This is not new news. I can remember this from last summer when Lewis and Meg were here. On the other hand, Lewis had no problem just shoving me in up that board. Not everyone has his strength.

Of course David had to relearn how to get the power wheelchair up the ramp into the back of the truck. That only took him a minute or two. The big hold up was when we realized that this new iteration of my chair won't drive forward when tilted back. You can only tilt so far and then it stops. So he had to get that tilt positioning perfect in order for the chair to fit. He got it perfect. All was well.

So now I am home, exhausted, shaking as I write. As I said, long day.

Friday, 9 February 2018

The Rum Bottle Problem

Well... it finally happened. I knew it would happen eventually. It had to. I have ALS. Last night I found myself unable to get the top off of a new bottle of Spiced Rum. I was able to twist it, but only to the point where the plastic ring is supposed to snap. I was not strong enough to snap it. I should have known I was at this point. Earlier in the day I had to ask my friend Bobbi to open two jars of preserves which I wanted to have with my lunch. I couldn't open them either.

This is living with ALS, these kinds of unexpected losses. You just don't think about them, until they happen, and then you start thinking about all kinds of related things. This change means others are coming, like the loss of ability to use the corkscrew to open a bottle of wine, or the loss of ability to get the lids off things like barbeque sauce or ketchup or mint jelly or anything with a twist off lid which has a bit of back pressure to it. Even flip up lids are becoming more difficult.

These kinds of things present me with challenges and opportunities. Last night, for example, I grabbed a pair of adjustable pliers, set the width to rum cap size, and used the pliers to twist the lid off. Plus, I am already looking for an electric corkscrew. That will help for a while. But what will happen when I am no longer strong enough to use the pliers or manage the electric corkscrew? Hopefully I will have live-in help by then.

Nonetheless, it is a disappointment. While I know for a certainty that my hands are weakening, and have been for some time, this is the kind of thing I never considered, the kind of surprise I did not want. Next in line is the pump on my soap dispenser and on my shampoo bottle. Those things are becoming very difficult. Loss of that ability will mean I will no longer be able to shower without assistance. Oh well, at least I can imagine my caregiver all wet and soapy in the shower with me. Eeew, that's a nasty vision. Maybe not.