A Trifle; A Full Day Of Work

One of the things I learned about myself after leaving my now ex-wife was that I am not a messy person, at least within my home. I will admit that my boat was often a mess, what with the various projects I was forever working on. At home, however, I like a neat home, a tidy home. I like it when things are in their place. I bugs me when they are not in their place, even moreso when I am unable to put them in their place.

Things left laying about bother me enough that, just now, I stopped writing this post to put some things away which were on the ledge between my kitchen and entryway. The problem is that as I put them away, I noticed a couple more which I have to remember to deal with later. Remembering them is the key. On top of that, there are several things laying about which I cannot put away; their storage or normal location is now out of my reach, or they are in a position where I cannot pick them up.

Take for instance the light switch cover plates on that same ledge. Those I could toss into my large item tool bag, just to get them out of the way. They really belong in my fix-up junk box, the one two shelves too high in my bedroom closet, the shelf I cannot reach. It's the same place the old hardware from my front door belongs, the hardware the condo board asked me to remove so they could paint the doors. Now I find out they are not going to re-use this old hardware; they are putting new stuff on, so the old stuff sits there until I remember to ask someone to put it away. The same with the screws for those cover plates; they belong in the fasteners container up on that second shelf.

I think the ones which get to me the most are the ones left by others; left in places I cannot reach which I tidy up. These kinds of things are often left by the homemaker and by caregivers, lest they move something they shouldn't move. They are trained to leave things where they find them. Oddly enough that training only seems to work with trash bits. When it comes to caregiving items, those seem to move all over the place, lost one week, found another.

Another interruption. I could no longer stand the light switch plate screw on the floor in the hallway, or the other screw on the end table in the living room. I couldn't put them away, but at least they are on the ledge with the others. While I was at it I picked up the old wine instruction sheet of the floor of the bathroom along with the dirty cleaning cloth. Then, when I tossed the cloth in the laundry, I grabbed the paper towel off of my hospital bed-stand, the one left there by my HCA this morning.

You might think, with all the time I have on my hands, that this kind of tidying would give me something to do. True, it does. It also wears me out, quickly. Right now my arms are shaking from the work. My typing is slowing down, getting worse, as the weakness in my arms transfers downwards, the shaking in my fingers causing me to create even more typographical errors than usual.

So now I am exhausted. I need a rest. All from picking up a few bits and pieces other people have left behind. I know they don't do it on purpose. In their life it's nothing, a mere trifle to be dealt with next time round. For me, it's a full day of work.

I'm Getting Worse

I've reached that stage of ALS where my general health is at risk almost constantly. There are all kinds of petty illnesses causing me constant grief, from constipation to rectal mucus, from perpetual infection to skin breakdown. There is little I can do to stop all this. It's the outcome of a failed core body along with the general ill health generated by lack of activity. I have both the illnesses of a sedentary lifestyle along with the illnesses of a weakened immune system.

A lot of PALS deal with this, the ever present risk of some sort of illness, something to knock them back in their chair. We all live with the threat of it, ALS providing us with a constant reminder that we are in a permanently weakened state. It's nothing extraordinary or unusual; it's just how it is as one progresses down the pathway of ALS.

It's not unusual for me to decry how unfair life has been to me, or how I got ripped off. It's pretty much a fact on both counts. On the other hand I have had a pretty wonderful life, right up until my mid-50's. I've had the kind of life many wish they could have had, the kind of life people dream of having. All that has happened is that the dreamy portion got cut short, and the marriage portion failed completely. Still, not bad overall.

In reality there are a great many people who have not enjoyed life as much as I have, a great many people not surrounded by the love and generosity of family and friends. Most PALS have nowhere near the kind of support network I have. Many people don't have the kind of joy which I continue to have in my life. Their are prisoners in jails for life, having entered therein as young as 19 years of age. I've had friends murdered at the same age. There are young mothers with cancer who will never see their children grow up. There are people who were in wonderful marriages only to see them torn apart by accident or illness. The world is filled with suffering worse than mine. That does not diminish mine in the least; it simply gives me pause, reminding me to be grateful, constantly.

I'm getting worse. Then again, with ALS there is no getting better. I will continue to diminish until it all comes crashing down. And even on that last day I will lament what I am missing. It's in my nature to want to see what comes tomorrow. Today I get that chance. I am glad of that.

My Laptop Is Back

Finally. I have my laptop back. This is the longest period of time since I got my first laptop over 30 years ago that I have been involuntarily without one. The longest time voluntarily without a laptop was in 2014, when Cheryl and I went to Europe for two weeks. Even then I took along my tablet; at that time I still had enough finger control to type on the half-sized keyboard, and enough visual acuity to see the small letters onscreen.

These last two weeks have taught me a lot about how much I use my laptop; for social connection, for keeping track of our search for caregivers, for music, for pictures, for movies. I watch Netflix on it more than I realized, sitting here at the table rather than setting myself up in the living room. My table has all my stuff on it, once again that stuff includes my laptop.

Perhaps the biggest loss over the last couple of weeks have been my blog posts. I know many people worried while I missed those posts; I truly appreciate their concern. I know that things have happened, like the visit from the physiotherapist where he encouraged me to keep my own bed rather than get a hospital bed, or our wine bottling dinner the other day where I was reminded once again how much in need the help of others for almost everything these days.

Speaking of the help of others, without naming names I want to thank those who helped me get this laptop fixed, who paid to get my laptop fixed. It was an incredible burden off of my shoulders, knowing that I wasn't on my own in getting this done. I live because of the generosity of others, both family and friends. Having my windows on the world allows me to say thanks, both publicly and privately. So, thanks!

I May Be A Bit Paranoid

I'm going to try to post a blog entry from my tablet once again. I had written one the other day but from some reason I cannot fathom, it simply went in as a draft. I wondered where it went. Now that content is irrelevant. Mostly it was just me whining and complaining about my laptop dying, and the expense of replacing or reparing it. Fortunately it looks like it will only be about $150, and a family member has offered to cover that.

My laptop should be back to me by Monday, all things working as planned. The repair shop has ordered the motherboard to replace the original. It was fried, I think by a lightening strike pushing a surge through the house. During the lightening storm last Sunday, my laptop was, unfortunately, the only electronic device in my home not plugged into a surge protector. I plan on changing that when I get it back next week. Of course the whole thing could just be a coincidence, ending up with me borrowing a surge protector from David.

I have these power bar/surge protectors all over my apartment. It seems modern technology has a lot more plugs than the original designers of these apartments thought. In every room there is shortage of outlets, forcing me to use multi-plug extensions and surge bars all over the place. Part of this demand, of course, are the various chargers for lifts, wheelchairs and such. My apartment is an electrical zoo, animals of all type here demand power.

This wicker basket of wires has grown larger and more twisted as I have attempted to "Google-ise" my apartment, attempting to turn it into a smart home, driven by voice or light finger touchess. I am unable to create the pressure to push a lot of the buttons required these days, so having voice control helps a lot. I'm not sure what I will do as my voice weakens and disappears, but for now this seems like a viable solution. All I have left to do are the two dimmer switches for the kitchen and dining room. By concidence the cost of these two devices is $150, the same cost as repairing my laptop. I have to ask myself if this is truly a coincidence, or is it a conspiracy. Remember, it's not beingx paranoid if they really are out to get you.

The Mountains Are Ablaze

My floor reflects mottled colours of gold and red, and even grey sometimes as the beleaguered sun works desperately to throw light through the heavy haze covering Calgary and much of southwest Alberta. The great cordillera is ablaze, from the top end of the Rockies in northern BC through to the mountains of Colorado, and through again to the high Sierra's of southern California. Forest fires rage, turning the very sky to flame, threatening life both human and animal.

I wonder if this is what the global Hothouse effect will look like, or perhaps does look like? Is this a foretaste of what climate change offers us, even those smug enough to think we are safe from the effects of this planetary change? I fear the future holds an increasing number of summers ablaze in the mountains and great boreal forests, with record temperatures everywhere.

You could find other, more fearful examples, yet this is one that we, even in a "lifeboat country" will experience. Other changes, such as a rising ocean, presents limited threat to those who live on the BC coast. In a piece of delicious irony, only the wealthy can afford to live in those homes threatened by rising sea levels and increasing storm surges. The poor among us have been compelled to live high up the hillside, away from the water.

There are changes coming, big changes. These changes threaten to wipe out as much as half of the human population on this planet. This does not mean we are killing the planet; we are simply killing our species. The planet, in whatever form it takes, will continue, perhaps to support life, perhaps even to support human life. Perhaps not.

Look Ma! I'm An HR Manager!

It's finally happened. The Alberta Health Services has given me an ultimatum, although it was given in nice, polite, inoffensive terms. It constantly amazes me how government employees of all stripe learn very quickly not to say what they really mean, but to imply it, poke around its edges, soften their words, then allow you, almost force you, to draw the conclusion.

The ultimatum is simple, driven by my change from Self-Managed Care to Vendor Care with the loss of a live-in caregiver. I must either give up my newly purchased adjustable bed, trading it in for a standard hospital bed, or the Vendor Care agency will refuse to supply home care services to me. Alternatively, if I have my own, private caregivers, there is no need for the discussion.

This all has to do with my weight, the size of my bed, my inability to help, when the caregivers are rolling me from side to side. This problem has arisen in the last couple of months with the loss of strength in my arms and shoulders. With ALS, muscles proximate to the spine typically go first, the disease working from inner to outer. So being able to type, being able to use my forearms, is of no use in this situation.

I have decided to skirt the issue by hirinig private caregivers as quickly as I can, most likely part-timers, one for the mornings, one for the afternoons, and another two for the same blocks on the weekends. One thing I have to do is research Alberta labout law with respect to the minimum time slice I can provide within that context. I would like to do 3 hours in the morning and three hours in the afternoon/evening. That afternoon/evening block would have a short visit at dinner time, then a longer visit for exercises and putting me to bed.

My workload as a personnel manager just went way up. Let's hope I have the energy for it.

And She Likes Red Wine Too

Perhaps it helps to complain about my HCA. The one who was not good decided she didn't want to see me anymore. That left a gap in my schedule. We tried a new one on Wednesday, a process which exhausted us all. That one decided I needed more care than she was willing to give. So today I got another new one. This one seemed perfect, perhaps too much to hope for.

One of the first thing which endeared her to me was when she was turning me over. Her supervisor, there to provide training during this initial visit, asked if rolling me was too difficult. The new HCA responded, "It's requires energy. That's why they call it work." That could easily be a McBride aphorism. It speaks to attitude.

The other thing I really liked is her almost immediate understanding of not only what needed to be done, but why it needed to be done the way it was done. She didn't quibble, noting immediately that the extra steps for cleanliness made sense due to my illness. The did the work quickly, with focus, yet not so quickly as to make me feel likea lump of meat to be tossed around.

Nobody completes everything their first time. We got close. Rather than make breakfast for me, I asked her to tidy the kitchen. Emma had already put the recycling in the hall, ready to go. My water jug was full. My bed was made. It was all good. I am impressed with this new caregiver. I hope she sticks around.

Oh, and she likes wine, especially red wine. That's an immediate win with me.