Friday, 23 March 2018

I Understand About Being Frightened

I want to start this post by apologizing to my kids, my ex-wife, and to all those people over the years whom I may have intimidated, and even frightened, by my physical presence and power of voice. Today I got a very clear lesson on what it is to be on the recieving end. I had a run-in with my caregiver, and she responded with rough handling and loud argument. I was afraid. I was afraid she would hurt me; she did, but not enough to complain. I was afraid she would act against me in some manner; she was more petty than anything. Nonetheless I spent my morning in fear, eventually asking her to leave early just so I could feel safe again.

The real problem arose with the care agency, CBI. Once again they screwed up my scheduling. Unfortunately this was after Edith, The Shuffler, had been told she would no longer be taking care of me on Fridays. This was in response to complaints I made about her lack of attentiveness and unwillingness to do exercises. Of course she took this as a rebuke. I don't blame her; it was.

The supervisor asked the agency to provide a new caregiver for Fridays. They did, but then immediately double booked her, effectively delaying my morning from 10:30 AM to 11:30 AM or even later. I said this was unacceptable, especially since the new caregiver would require supervision, and the supervisor was scheduled to arrive at 10:30 AM. Once again the CBI coordinators failed to coordinate. So I asked them to fix it.

They did fix it. They sent Edith.

When Edith arrived things were tentative to say the least. We both tried to avoid the elephant in the room. It seemed to be working all right until I asked her to walk through the new, clean, no-touch catheter technique. Edith has trouble with the concept of a sterile process, so there was some discussion about some of the steps and requirements. Aggressive discussion. Loud voices

After some degree of success, and some degree of failure, in the new catheterization process, Edith hung me in my sling and went to the kitchen, telling me to call if I needed help. This is not a failing, except her response time when I need help leaves something to be desired. I would get faster help calling 911. Nonetheless, when I had had enough unproductive time in the sling, she put me in my commode chair and walked away, telling me to ask if I needed help.

Of course I needed help! I had already told her I would need help in the shower, but she failed to understand that meant staying there with me. She went back to the kitchen. So I did my best on my own, unwilling to ask once again for help I was supposed to be getting in the first place. After I was showered, I did call for help. She opened the bathroom door, stood back, and watched me struggle with my commode chair to get into the bedroom. Then I had to ask her to help me towel dry.

After I was dry, she put me in the sling and on the bed, ready to dress. After putting on my condom catheter, something she always does well, she began to flip me about like I was some sort of rag doll so she could put on my catheter bag, my socks, my underwear and my jeans. There was no injury here, just pain from my rather damaged body. I felt like I was being punished.

Then I got a phone call from Yvonne, the new HCA who was originally scheduled for today, the one who was supposed to be my Friday regular. She said she would be here in 10 minutes; no supervisor, no advance warning. I suspect the non-coordinators in the CBI office had something to do with it. I asked Yvonne to call her supervisor to find out what was happening. She didn't understand; ESL problems. So I got upset and said "Never mind. Do what you are going to do."

I called the supervisor. She tried explaining things. By this time I was so upset and frustrated I just told her, with Edith in the room, that I wanted everybody gone from my apartment. No exercises please. I actually began to cry with the frustration of it all, until I managed to get ahold of myself. Edith was still in the room, knowing that "everybody" meant her too. She had to finish dressing me. It would be polite to say that the next 20 minutes were quiet, perhaps a bit chilly.

This was not a good day. I do understand more about how I must have frightened people in the past. Once again let me say how sorry I am. I get it now.

Thursday, 22 March 2018

Not Motivated

I am tired, worn out. I have done nothing today other than chat on Facebook and watch Netflix. Oh, and I folded a towel and a shirt from the laundry I did yesterday. Yet my arms hurt. My left shoulder hurts, and now the right one is getting in the game too. My hands are getting tired when I type more than a few lines, my wrists too. I had forgotten that my wrists are part of this process; they have muscles in them, not just bone.

This weariness, if that is the right word for it, has been with me all week. I ran out of milk on Saturday. Rather than go over to Safeway, I used Bailey's in my coffee and forwent pancakes on Sunday. On Monday I asked my HCA to get it for me while I was hanging about in my sling, something this is definitely not supposed to do.

All week I have had $200 in USD and a check for $19 in my wallet, waiting for me to go to the nearest credit union to deposit. Yet all week I have demured, rather sitting in my chair, watching something on Netflix, or napping. That post-brunch nap has become a constant of about 2 or 3 hours, making my day increasingly shorter. It's also less effort, so my evenings seem better than my days.

This is kind of new; it's been sneaking up on me for a while. I am in a place where I am beginning to do almost anything to avoid expending energy, to avoid effort in any way. I just don't feel up to it. I know that there are things which will inspire me to action, things which will energize me. People come to visit, and I get upbeat. Yet beyond that incentive to interaction, I prefer to sit these days, mostly not moving.

I don't like this feeling, this inaction. I just can't seem to get past it. I am not motivated. Mostly, I am just tired.

Tuesday, 20 March 2018


So I had my meeting with the Alberta Health Services Self-Managed Care programme director today. We went through the various options around funding and requirements. According to her, I might be close to having enough for what I want, a live-in caregiver. In my situation very little makes sense in terms of self-managed care. I do well with the existing system, except when I find myself alone with a minor, non-emergent issue, like a dropped glass of water or some such thing. Yet I need more care.

AHS is prepared to provide me with funding possibly up to $3,000 a month, although the current level of care is only funded at about $2,700 a month. The difference has to do with the amount of care I currently use versus what I could be using. It would be in my best interest if I ran up my care needs at the moment. Of course this is precisely why the SMC director suggested she might see if she could get it all the way up to $3,000.

The way the budget breaks out is roughly $2,300 - $2,500 for a live-in. From that wage I am permitted to deduct about $140 for board and $300 for meals. I can use either of those to add incentive, for example not charging for board, but charging for meals. In addition, if I charge for meals, I can allow her to retain some of those funds so she can shop for herself, getting the kinds of foods she prefers. The balance of the funds would go to cover five to six days a month, allowing the live-in one dedicated day per week off, along with coverage for statutory holidays.

It's the whole holiday part that is the biggest problem. First of all, if I pay the holiday coverage $20/hour, and reduce my care level on that one day, I could probably get the cost down to less than $100 per day. I don't think there is a minimum number of call-out hours in the case of home care. Nonetheless, weekend and holiday coverage will likely be as much as $500 a month.

Then there are the costs associated with having an employee and doing the paperwork. There is an agency in Edmonton who will do all of this remotely for as little as $100 a month, however there are the costs associated with setting up a company to do the hiring. I am investigating the possibility of using the agency as the corporate entity. Then there are things like banking costs, CPP. EI and vacation pay. All of these must come out of the SMC funding.

No matter how I look at it, I am likely going to be cutting the edges around how much I pay, or having to come up with roughly $200 to $300 additional funding each month. As time goes by, my funding level will likely increase, which leaves me with the option of waiting for a while, until I am really in bad shape, then applying for SMC. I'm not sure I want to do that. I need help now. As with all things, it's the money. It's always the money.

Monday, 19 March 2018

Not Much

The last few weeks and months have seen a dramatic decline in the ability of my arms.  The loss of strength has been substantial, having now reached the point where even lifting my arms is a challenge. To put this into practical perspective, three weeks ago I discovered I could no longer wash the top of my head. I won't say wash my hair; that would be hyperbole in the extreme. Two weeks ago I discovered that I could no longer wash under my armpits. Today, for example, my HCA had to hold up my arms while I tried to wash. Next week she will have to do the whole process for me. And this week I discovered I can no longer wash my face. I can't get my hands up there.

This is the phase of ALS I have dreaded the most, the loss of my arms and hands. This is where I will lose all independence, having to rely on someone else to perform the most basic of functions for me. I lost the ability to wipe my own ass quite some time ago. Now even personal hygiene is getting beyond my shattered abilities. If I am to continue living much longer, I am going to have to adjust to someone else handling pretty much everything for me, even cooking. I'll have to learn to drink wine and Scotch through a straw.

There are plenty of people living with these limitations, and more. I am not sure about their quality of life, but I suspect they have a very strong reason for living. I am not so sure about that for myself. I continually face the question about how long I want to live like this, how long I want to go on. I think about it every day now, about whether I have gone on far enough, whether I should call it a wrap.

The story of my life is coming to a slow, tormented conclusion. My last act is far too drawn out to still be engaging, either to myself or anyone else. I see very little reason for continuing to exist in this state. I am not sure what I have to live for these days. As to quality of life, well, it's going, going, going, gone. I am becoming less and less able, more and more disabled. I can do so little. So much of my doing requires the help of others. I feel like it is too much to ask. All the while the question of what next lingers before me. The best answer I can come up with is "not much".

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.