Monday, 18 June 2018

Meet Shelby, My New Live-In

Houston. We have a live-in. That's right, I am pleased to announce that I have hired a live-in caregiver. She starts on July 1. Shelby is from PEI, has trained as an HCA, and wants to come out west for a while. She's young, only 19, but this may be a real advantage. She comes with few complications, a willingness to do the job, and the enthusiasm of youth. It could be very good for me.

This, of course, will mean some changes, and some challenges, in my life. The biggest challenge will be the one I have feared all along, the financial challenge. We are skinning this cat close; I'll be running a deficit of only $14 a month. The real challenge will be in feeding a youngster on $300 a month. On top of that will be my own food costs and other expenditures. Having a live-in by no means offers any financial benefit to me; quite the opposite.

With that said, dismissing any other challenges is easy. This situation is definitely a win for me in so many ways, from flexibiity of care, consistency of care to increased activity and more "getting out". David is going to put Shelby on the van as an additional driver. That means I will have a driver during my days anytime I need one. It means I will have someone to help me get in and out of the doors downstairs, someone to help with laundry on a steady basis, another pupil for my cooking instructions.

For her, I admit right now the money is not great. On the other hand her work hours are very flexible and she will have no living costs beyond the $400 for room and board. There will certainly be more household costs, beyond food, Those are all in for her, things like electricity, laundry soap, toiletries, and all that. Then there will be the adventure. David and I are already planning a trip to Vancouver next month, and another trip later this summer. With Shelby along, those things become possible.

This is going to be a wonderful new chapter to my life with ALS. Things are looking up.

Sunday, 17 June 2018

The Pre-Roll

David took me to my niece's concert last night. Chelsea McBride's Socialist Night School; that's her. It was an exciting evening of interesting, eclectic music. Chelsea has always been that way, using music to express what she see's, presenting compositions which take different pathways, non-traditional jazz routes. Probably the most exciting part was watching Chelsea perform, and knowing her Mom was in the audience. Alas my brother, Matthew, is up north skippering a ship up and down the Mackenzie River. We are an unusual family, with unusual talents.

The sad part about last night was having to leave halfway through the show. Home Care waits for nobody; I had to be home by 9:45 PM at the latest. All right, my HCA did wait an extra 15 minutes. Between the timing of the intermission in Chelsea's performance and the drive home, we made it here at 9:30 PM, the normal timing for putting me to bed.

Sleeping was easy last night; I was exhausted after all the activity, along with a pre-bedtime glass of Scotch. At least it was easy until about 5:00 AM. That's when I woke up and realized my HCA had not positioned me to turn easily. In fact I could not roll on my side at all, the common state of affairs these days. Now, in order to make that movement, I have to be "pre-rolled" to ensure my hips are slanted enough that I don't actually roll as much as I complete the prior positioning. So, on a proper night, I am not really flat on my back, but positioned more in a 1/4 turn. From there, I can complete.

So, at about 6:00 AM, after trying any number of maneuvres on my own, I called the night nurse. Fortunately she was not all that busy, so she had time to come and help me reposition. It is my hope that all of this goes away once I have a live-in caregiver. I don't mean that I will wake her up at 5:00 AM. My hope is that, like my other evening HCA, she will learn the pre-roll as part of the routine, an important part, not to be forgotten.

Saturday, 16 June 2018

Tired Hands, Weak Eyes, Aging

I'm having trouble typing today. My fingers feel ever so slightly uncoordinated. My arms don't want to stay in place, wandering away towards my sides, making itd difficult to hit the center keys consistently. There's a lot be backspacing and correction going on here.

The magnify function in Chrome is on as well, showing this page at 125%. You see, my vision is worsening as I age, having nothing to do with ALS that I am aware of. As I have said in the past, having ALS does not give me any exemption from the illness of age and living in general. Methinks another visit to the optometrist is in order soon. He will demand bifocals. I will continue to resist, instead using the magnify function where it exists, be it Chrome, my TV or when reading a book online.

Part of this weakeness today is another damned infection. It seems the typical time between ending a course of antibiotics and the return of the infection is about five days. I will head into the doctor on Monday and start another course of medication. This time, however, I think I might ask for a longer term, lower grade antibiotic treatment. If I can't kill this infection, perhaps I can make a truce, like they did in the Korean War. I'll still be at war with the infection. It will still be trying to kill me. All I can do is hold it at bay, a foe unwilling to end the conflict on both sides.

Friday, 15 June 2018

Runaway Train

Beware of getting locked into a train of thought without considering other tracks. This happens often to me, where I get an idea, look for a specific outcome, then head down a set of tracks which completely misses other ways of doing things. Some call it tunnel vision.

With ALS, you simply cannot live that way. With ALS, just as with so much of life, the way you planned is not the way it's going to go. Often times, when faced with a challenge, I want to solve it my way, regardless of impact or issue. Then someone comes along, often David, who says "there is a simpler way to do this". Inevitably the simpler, or simplest, way is the best way.

The problem for me is that the simplest way generally includes an innate concession to this disease. I can't do it the way I want, because I am unable to do it the way I want. I can only do what ALS allows me to do. If I can't lift it, I have to ask someone to lift if for me. If I can't work the tools the way I want them to work, I either have to work them a different way or ask someone to work them my way.

The only problem is that I am often home along when I get an idea about a project or a problem. Take towels for example. My towel shelf is a mess, something I clearly attribute to my home care workers. I want it organized in a certain way, where all the towels come off the shelf and are then put back in the proper arrangement. I don't have the energy for that, nor do I see away through on my own.

So I have to wait until the right person comes along and says, "I'll do it, but this way might work better." Maybe I don't need my towels organized in a specific way. Maybe it's just as easy to leave them disorganized. After all, I don't pick them up any more. So if the HCA's are the ones who have to deal with them, it makes little sense to get tunnel vision when it comes to their organization.

There are lots of ways to do things. Some are better than others. The best ones are the ones where I don't have to expend the energy, where I can just let the train make its way down the tracks without me being in control. I don't have to manage everything, even though I really, really, really, really want to.

Thursday, 14 June 2018

What Will Tomorrow?

I am not sure how much more of this I can take, how much farther I can go. As much as I want to live, this disease is making that increasingly difficult. Even with the advent of a live-in caregiver, a situation we are on the cusp of resolving, life is becoming increasingly difficult for me. These days my breathing is becoming increasingly shallow; I run out of breath on a regular basis, finding myself lacking the expulsive power even to finish a sentence or tow.

Six months? A year? I'm not sure. My brain is so active these days with both the challenges and learning with respect to automation of my home as well as the philosophical elements which I am compelled to confront and contemplate daily. Time becomes irrelevant, near unimportant as I face the expected outcome. My life is nearing its end. Unfortunately I am interested in so many things, so much, that dying simply seems out of the question.

It almost seems unfair to ask a live-in to step into this kind of situation. How long will this job last? What emotional toll will it take to walk these months along side of me? There is no doubt that caring for me, or anyone in my position, will take an immense emotional toll. On the other hand, anyone stepping in now will have a clear view of the potential timeline and the expected pathway to the outcome. If they sign up for the job, they must accept these things.

So this has been my day today, wondering about these things. Tomorrow I will arise, to wonder again. Will I wonder about living and dying? Will I wonder about the emotional cost of caregiving? Or will I, with any luck at all, focus on the requirements and tasks of getting switches to work in my apartment, automated switches? Switches I think it will be. After all, at least I can do something about them.

Wednesday, 13 June 2018


My daughter Kate came down from Eckville today, a two hour drive, to bottle the wine for her wedding. We had a good visit too. The only downside was my realisation of how little of this I can really do now, how much of what used to be a great hobby of mine is now handed off to others. It frustrates me that I could do virtually nothing to help her, not even provide the odd instruction or two. She knows pretty much how to do it all.

The other distresssor was that she couldn't stay for dinner. Turns out she is the coach for her step-sons soccer team, the Unicorn-Dragons, a mixed gender team for 8 - 10 year olds. Given that she knows almost nothing about soccer, it's a good thing her husband is her assistant coach. I think it's terrific that she has jumped into the role of being a mother for her husband's three sons.

I love children. I love my own children, and their children. I love the children of my friends. In fact, that is one of the things I miss most of all, having my children and grandchildren visit me. I anticipate with anxiousness their pending arrival. I hate it when they have to go. I would like to spend more time with them whenever possible. I don't mean the intense "activity time" that inevitably happens when they come to visit from so far away. I mean that calmer time which can only happen when there is a degree of settlement upon them. It's not always calm, but it is wonderful.

If you have children, I encourage you to think about this. All day long in your hustle and bustle, your children are around you, if you are lucky, an appendage often digging into your ribs or pulling at your pocket. Yet when you finally get them to bed at night, you watch them in their sleeping innocence. This is the repayment for all your work, those few moments between their sleeping time and yours, when you can look at them unhurriedly, wonderingly.

Of course that wonder ends when they wake up in the middle of the night, coughing and hacking, and just have to crawl into bed with you. But then again, that's just part of the deal. There will come a day, one day, when it will be the last time you pick up your child, the last time your child crawls into bed with you, the last time you hold their hand. That is the saddest thing.

Tuesday, 12 June 2018

More Things Gone

This whole "losing my arm strength" thing is getting very annoying. Not only is almost everything too heavy for me to pick up, even something as small as a dozen eggs, but now my fingers have taken to locking up consistently whenever I extend them to reach, grab, or push something. It's like the knuckle joint on each finger actually inverts and locks during the process. Then I have to stop whatever it is I am doing, release the hand in question, or both hands sometimes, then shake them to loosen my fingers.

It's all kinds of things, though. For example, not only can I not roll over in bed, I can't even roll onto on side these days. This means when I am put to bed, I need to choose my position carefully as I will likely be there for at least 12 hours. I'm going to start asking my HCA's to put me on my side. I'll sleep that way for a few hours, then roll onto my back for the rest of the night.

Then there's my jackets and hoodies. I simply am not strong enough to pick them up over my head. I need someone to help me put them on. These days I take them with me and ask the first person I meet to help me, even if it's a stranger. Actually I ask strangers for a lot of help these days. I find people are almost always both willing and cheerful. They seem to innately understand the issue.

I've also discovered that I can no longer open some of my pill bottles, expecially the larger ones, which really aren't that large. The child-proof caps are also ALS-proof caps. I know I can get my medications in blister packs, although I don't know what that will cost. My current worry is whether or not I will be able to tear open the packaging.

And that's another thing... packaging. But this is enough complaining for today. I have a lot of reasons to dislike packaging, so more on that another day.