Wednesday, 28 February 2018

I'm A T-Rex

The last couple of days have been really difficult. It has been a couple of days where psychological adjustment has been as driven by ALS as physical adjustment. In the last couple of days, I have reached the failure point on my left arm, and pretty much on my right arm too. I now have to have help in the shower washing my hair, help with shaving as I am no longer strong enough to lift the electric razor, help with picking up anythnig and everything, help with eating. That's the biggie.

Help with eating was something I hadn't thought that much about. You see I thought that bulbar ALS would impact me first, taking away my ability to swallow. It had not occurred to me that I would still be able to swallow just fine, but would be unable to lift a chicken drumstick up to my mouth. That's what happened yesterday. That's when I hit that psychological wall, the one where I realized with complete solidity that I was going to die.

It kind of happened the day before, on Monday, as well, while I was lifting a can of beans. I had been shopping and was taking full advantage of the lift on my wheelchair to position myself higher than the groceries, so I would not have to extend my arms in order to lift. Yet even then I could not get a can of kidney beans out of the shopping basket. So I left them, and asked Kathy to do it when she got here Tuesday.

Even now I am having to rest my hands heavily on my laptop in order to be abe to type. It's another thing where adjustment is key. I knew I would lose my arms, as I am doing. I hadn't thought about what it would be like to try to type without being able to hold up my arms. Yet it's not as if I can't get my arms and hands to work. It's just that any target for my arms that is more than immediately next to me requires that I kind of toss my arm out, hoping the momentum gets my hand close enough to where I can grasp the target, using whatever I can to rest my upper arms along the way.

Breakfast cereal is a great example. I keep it on top of the freezer. I cannot get my arms up hight enough to reach the cereal, even with lifting my wheelchair. So what I do is get my arm as high as I can, then let it rest against the side of the freezer. At this point my hands come into play. I use my fingers to slowly lift and pull my arm up, up to where I can rest it once again on the edge of the top of the freezer. Finally, hands only work their way to the box I want. I grab it, then let gravity bring down my target. Getting it back up there is something I leave to the HCA's. I should let them get it down too, but I want to do at least something for myself.

The secret adjustment I have made, for the most part. is to keep my upper arms close to my body. That way I will have maximum lifting strength from them. There will be no extension strength; that ship has sailed. So I revert to using my upper arms only. It's kind of if I have become a T-Rex, with really short, and really weak, arms. Except I don't get to rip my food apart with giant teeth and clawed feet.

Monday, 26 February 2018

An Open Letter To My Children

To my children...

I am going to die soon. Likely not today or tomorrow. Probably not this week. March seems like it might be okay. After that, life is a crap shoot. You never know. So I wanted to share a few things with you, while I still have a chance. You see, or what you don't see, the weakness in my arms makes it difficult to get my hands up to the table and keyboard. The shakiness in my hands makes it difficult to type consistently; some days are good, some days are not. Soon I may go to voice control. So here is what limited wisdom I have which I feel might be useful to you.

My death will impact you in ways you are not prepared for, in ways you may not understand even once you get there. I am sure you will miss me, or miss what used to be me. I am just as sure you will not miss some things about me. You see, in addition to being a parent, I am also a child. When my Dad died, I was surprised at some of the things I dealt with afterwards, things I did not expect, things I will not share here. You will go through it too, dealing with your loss, your grief, probably even your guilt. It's just the way it works. How you deal with it is up to you. What you have to deal with is also up to you. Just be prepared and know in advance that I understand.

Be kind to your mother, and your in-laws. They are aging quickly. I will soon be gone and will not be a part of your support equation. When the time comes to care for your Mom, or your in-laws, your children will see this. They will model their treatment of you on the way you treat your parents. They will learn about love, respect, intimacy, care, and so much more as you care for an aging parent. Be good. Be kind. Be loving. Hope that what you give represents what you would like to get.

Support one another. I was raised by a father who did not believe that model. I have tried all my life to do better, yet at this point I feel like I have failed, and thus I feel like I have failed as a father, just like the way I feel about my Dad. It is a vicious circle. Break it. Constantly be in touch with each other as the years pass. Forgive one another. Judge not; just let it go. Be the first sibling on the call list for your other siblings. Be the second. Be the third. Be on that list. I wish I had done more, done better at this. I hope my siblings will forgive my failing.

Show your children that love and forgiveness go far beyond the front doors of your home. Let them know that it is more than just those you see each day. Demonstrate the care and forgiveness that you have for your family, for your friends, even for a complete stranger. Be helpful so your children know that helping others should be their first response. That also means helping them first, even before yourself, until they are adults, no longer needing your help. Then you can enjoy watching them share that lesson with their children, as I have loved watching it grow in yours.

Take care of yourself, in body, mind, and spirit. If you are not healthy, how can you have the strength needed to help others? Be active. That way you can chase after your grandchildren; yes, that will happen sooner than you think. Eat well. That doesn't mean avoiding everything which the world says is bad for you. It means eating those foods which nourish you, giving you the strength to do what you wish, when you wish. Read, as you do, to yourself and your children. Dr. Seuss contains many great lessons for adults too! But then again, a decent novel every once in a while never hurts. Take a moment in time each day, be at a few minutes or as much as an hour, to simply empty your mind of your daily cares and focus inward. Whatever your spirit may contain, feed it the positive food that you feed your body. You are loved. You are beautiful. You are kind. You are wise. Take the time to remind yourself of these things.

Spend the money. Sometimes you will have more. Sometimes you will have less. One day you will realise how much you can do with so little, and how little you really need. So you can save, although it is difficult with families depending on you. Yet, at the same time, know that there are simply times and events in life where you should spend the money. Buy those school pictures. I so desperately wish I had done that. You were beautiful children, just are you are beautiful adults. I just miss those children so much. I wish I had the pictures. Go on a family vacation; you know all about that. I never made a lot of money, but I am really proud of what we could do with the money we made. I believe your lives are better for it. I know mine is. I have the memories, so much more valuable than the money.

Respond to the pain in your life. Pain is nature's way of saying you are off course. Don't ignore it. Don't see it as a necessary part of life. If you are in pain, change something, anything, to get yourself back on course. Change does not mean you have failed at something; it means you are changing direction to get more out of life. Remember my three rules. If it ain't fun, don't do it. If you have to do it, find a way to make it fun. If you can't find a way to make it fun, pretend until it's over, and get it over with as quickly as you can.

Look forward in life, but live in the moment. The past is in your wake, a memory of what you have left behind. You can't change it; don't dwell on it. The future is what you are planning for, not what will happen. You don't know what will happen, not tomorrow, not even later today. So yes, plan for a future, but focus your energy on where you are now. Look at me. I planned. I saved. I had a retirement plan all mapped out. I will never get to live it, beyond what I have lived since diagnosis. That day changed me forever. I learned, in the time it takes to say those three little letters, that all my planning, all my saving, all my dreaming meant nothing.

When I left your Mom, I was changing course, leaving behind the pain and heading down a new path. Then, less than a year later, that path was stolen from me. So, once again in pain, I changed course. I began to ask myself "What about today?"; "Why am I waiting?" As it turns out, I failed to die on schedule. This, so far, has been my greatest single mistake. While I have enjoyed the extra time, my pain continues, increasing daily, and I cannot change my path, except to make an early departure.

That brings me back to where I began. It is entirely likely that one night soon I will decide to go to sleep with no plan for waking up. I will change my path from life to death, and hope the pain ends there. No more weakness. No more shaking. Just peace and rest. I will not, I can not, tell you when. That's because I don't know myself. But one day, all too soon, it will happen. Just know that my last thoughts will be of you, the greatest accomplishment in my life, the best thing I ever did. I love you.

Sunday, 25 February 2018

Food Sins

Tonight's dinner is French Bread, perhaps with a bit of melted cheese on top, along with Asiago Cheese and Artichoke Dip. I did not make the bread. I did not make the dip. Even the melted cheese will be pre-shredded, if I use it at all. I have to express some disappointment in all this. It's not really what I like to do.

If you now anything about me, you know how much I love to cook, to make my own meals, along with it's concommitant activity of grocery shopping. I probably spend far more on groceries than I should, yet somehow I manage to consume most, if not all, of the fresh food each week. Even the frozen food slowly wears away, along with the canned goods in my pantry.

The problem is that cooking for one has become too much effort. In fact cooking at all has become a substantial effort. I rarely cook solo anymore; I need help so I count on friends coming over. It is only then that I actually get busy in the kitchen, or rather at my table. I can't work on the kitchen counters; fortunately I can still work on my dining table, cutting and chopping at a level more convenient to me.

Still, I find myself increasingly purchasing prepared foods, something antithetical to my approach to food. I hate the idea of industrial food, yet I am more and more compelled towards it thanks to my own failing abilities. I mean, so much prepared food is overloaded with sugar, salt, and unhealthy kinds of fats. I admit I have always had some commercial food stocks; some things just work better that way. For example, I buy Chick Peas, Kidney Beans, Black Beans and Brown Beans by the can. I also buy mixed beans, but not the Bean Salad prepared stuff. I make my own Bean Salad.

There are a number of things I like to eat, and make regularly. Almost all of them these days have some prepared food component. Ceasar Salad; I used the prepared dressing rather than making my own. Mushrooms. I buy the sliced ones these days so I don't have to slice them. I buy cooked shrimp now rather than raw; it just takes too much to cook and peel it all. There are other nasty little food sins I won't confess here, but trust me, I'll sin rather than not eat.

Having ALS is all about making compromises with your own body. I will do what I can, as long as I can. At some point, I won't be able to do any of my own food preparation. Then it will be Meals on Wheels. I'm resisting that with all of my being. That seems the greatest food sin of all to me.

Saturday, 24 February 2018

Small Complaints

I don't have much to complain about when it comes to my caregivers. Nonetheless, I can find something. I'm talented that way; I have the ability to find something wrong in almost every situation. I am a risk finder. Still, truth is truth. The reality is that most of my care giver complaints are not directed at the care givers at all, but at the organizations behind them. The agency I am compelled to deal with is rife with internal incompetence. So it should come as no surprise that small amounts of this drip over on the the HCA's. So here goes.

Why do my caregivers all seem to find "special" places for things I use in my daily life. They put the cutlery in the utensil drawer. They put the big knives in the cutlery drawer. They put mixing bowls in with the cereal bowls. Now mostly these are just small irritations. Yet even with the labels on the cupboard doors, they all get it wrong on a regular basis. I swear sometimes they hide things on purpose, just to get me active in searching for them, like some kind of exercise plan.

Catheters. I use two condom catheters a day. No problem. Take it off of me and throw it in the garbage. Put one on me, and throw the little blue pull tab on the floor, or on the bed, or on the dresser, but rarely in the garbage. I find these little suckers all over the place, and they are almost impossible for me to pick up with my grabby stick. There is one on the floor in front of my dresser right now, and it's been there for several days. They seem to become invisible to HCA eyes once they hit the floor, or the dresser, or the bed, and so on, and so on, and so on.

Catheters, part duex. How come the HCA's can't agree on a place for my in/out catheters after first use. We use them twice a day, once in the morning and once at night. My HCA's seem to take some bizarre pleasure out of putting them in a different place every morning, leaving the night care giver to hunt around the bathroom, my bedroom, the kitchen, and so on, and so on, and so on.

How come my HCA's get to see me naked every single day, and yet I never get to see them naked. After all, fair is fair, right? On the other hand I have to pay them in order to get them to deal with my whale sized body. It must be awful for them to deal with my various unruly body parts. Still, if they were to pay me, I think I could return the favour. No?

Okay, perhaps I went a bit too far. I really shouldn't complain about anything. After all, it doesn't really help. I can teach them about utensil placement. I can get them coordinated on catheter containment. I doubt any amount of encouragement will help with the naked thing. Oh well. Tomorrow is another day.

Friday, 23 February 2018

Self-Managed Exhaustion

I feel like I have taken a real beating today. It was evaluation day, where the Occupational Therapist from Alberta Health Services was evaluating the level of care I needed. She was quite business-like in all of this. She watched me go through my catheter routines, my toileting routine, my shower routine, my re-dressing routine, and every other morning routine you can think of. The only part she didn't get to see was exercises; the HCA came early and the OT came late, so no exercises today.

Measured, and found wanting; that;s how I felt after all of it. The OT talked and asked a lot about the current care I was receiving, yet placed no focus on my deteriorating condition and likely future care needs. She seemed more interested in my medical equipment than my medical needs. Fortunately David was here to help me keep some perspective. Yet still it is exhausting to be subjected to questioning, like the crook in the police interrogation chamber. And at the end, I was the guilty party, unable to be sick enough to get more hours of funding. I'm not sure if this is what will happen. This is just how I feel.

The OT made one thing completely clear. I would not get funding for a live-in care giver. If I wanted that level of care, I would have to supplement the funding from AHS. The best I can hope to do in my situation, based on her comments, was to take the management load off of AHS and transfer it to my own shoulders. The only advantage to that would be getting to choose and schedule my own care givers.

My current care givers mostly do a good job. There are several of them, so I really have a team of people caring for me. I see no advantage to changing that. So I am guessing Self-Managed Care is not for me. I am disappointed to have put in all this effort for what appears to be no gain. I don't know for sure. I won't find out for a week or so. But I have a bad feeling about this.

Thursday, 22 February 2018

I Wait, Wet

One of the reasons I want to move towards a live-in care giver has to do with emergency requirements, like today's little event. My catheter came off. today. This is something which happens, if not on a regular basis, at least often enough to be a nuisance. It seems like I will go for some length of time without a problem, then, for no discernable reason, the sucker will escape its bonds and glue, and I end up messing up a perfectly good pair of pants.

So here I sit, wet pants and uncomfortable. It has taken me 15 minutes to get ahold of a coordinator at CBI, my home care provider. Once I finally did get ahold of a coordinator, she said it would take about a half an hour to 45 minutes to get someone here to help me. Shortly after the HCA called and said it would more likely be 3:30 PM before she got here, a full 45 minutes. Reality and experience suggests this wait will more likely be a full hour. So, by the time I am clean and dry, I expect it will be an hour and 15 minutes of sitting in wet pants, waiting.

Live-In care would have resolved this issue in less than 10 minutes. What's more, the live-in care giver would have been the person who attached the catheter, giving him or her the opportunity to learn from the experience, to see what can happen if things are rushed or not done properly.

Live-in Care would also provide for the smaller things in life. I forgot to buy butter yesterday. I wanted to go to the store today. In fact I was getting ready to do just that when the catheter came off. A Live-In Care giver would have just run across the street to Safeway and gotten the butter, without me having to go through the exercise of dressing and heading out into the cold of winter in my power wheelchair.

Tomorrow is my assessment to determine what level of care I need, and how much AHS will provide in funding. It is my sincere hope that this will provide enough so that I can hire a live in. I will likely spend a lot less time in soiled clothing after that.

Wednesday, 21 February 2018

Butter, And Getting Old

I'm out of butter. The reason I am out of butter is simple; I didn't buy any. The reason I didn't buy any is a bit more complex. When I see butter go on sale, I buy several pounds of it then freeze it. Butter keeps really well in the freezer, sometimes for months on end. The problem is I don't check to see how much butter I have until I need a pound of butter. Then I forget about it, until I look for butter and I have none. Like yesterday.

No worries, I said to myself. Co-op has butter on sale this week for $2.99 pound. That's a full dollar off. Time for me to stock up again. So I hopped on the bus over to Brentwood, were my doctot's office happens to be. Hmmm. I haven't been feeling great for a few days now. I should get a urine test to see if if I have another bladder infection. I do. We talked about various solutions, including perhaps going on a low dose antibiotic as a preventive measure, a prophylaxis as it it called. He is going to call me tomorrow with the culture result to see what antibiotics I should use, at which point we will decide about the prophylactic solution.

So, out of the doctor's office and across the parking lot to Co-op I go. They have lots of stuff I like on sale this week; next week too, but I was there today. For butter. I shopped for about an hour and came away with some chicken, some steaks, from fresh vegetables; lots of good stuff. I paid the $75 for groceries, grateful as this is the last of my money for this month. We packed all my purchased treaasures into my cloth shopping bags. I headed out across to the bus stop and caught my bus home.

Once at home I unpacked the groceries and realized I had forgotten to buy butter. I am truly getting old.

Today my friend Bobbi stopped by. I told her this story. We laughed. Then, on her way home, she stopped at a Co-op to buy some butter for me, a surprise. She called me, telling me that no butter was on sale at Co-op anywhere. I was confused, so I looked at the weekly flyer again. It was not butter on sale, but margarine. I never purchase or use margarine.

I called Bobbi and told her about my mistake. We laughed. Once again, I am truly getting old.

Tuesday, 20 February 2018

I'm Not Exaggerating

As my level of dependency increases, it becomes increasingly difficult for those who don't see me daily, or near daily, to understand what is happening to me. Worse than that, I find it increasingly difficult to communicate these difficulties in a way that makes sense. It's easier to describe a significant issue, people can relate to it. But how do you describe a dozen small issues that combine to block your way?

I've known for a long time that for an issue to go badly wrong, there had to have been a series of smaller issues, unimportant issues, which lead there. In and of themselves, each of these smaller issues would seem insignificant. Yet when placed in a row, collectively they provide the basis for disaster, or perhaps just big time problems.

There is an old adage which describes this problem well. "For the want of a nail, the shoe was lost. For the want of a shoe, the horse was lost. For the want of the horse, the rider was lost. For the want of a rider, the battle was lost. For the want of the battle, a kingdom was lost. All for the want of a nail."

For me, it goes like this. My right arm is my dominant arm. That means my muscles in that arm work harder than the left arm. As such I have an almost permanent muscle tear in my right arm, even though my arm is still somewhat usable. That weakness and tear in my right arm means I can no longer pull myself while attempting to roll over in bed. My breathing has ever so slightly weakened. Not so much as you would notice it, but enough that it makes sleeping on my back uncomfortable. No worries, I don't like to sleep on my back anyways.

So I am compelled to sleep on my left side, and only my left side. This constant placement of my hip along with the lack of muscle mass in my buttocks means extra pressure on that one point of my body. That extra pressure means pressure sores on the point where hip meets limited muscle meets bed meets skin. Those pressure sores turn into full on bed sores.

Now lets go the extra step. Let's say a bed sore develops, as expected. I will have to be positioned differently each night until the sore clears up. But I have the same issues on the other side, so there is potential for another bed sore. Now let's talk about infection, something which happens to me easily. An infection, especially a serious one, would put me in the hospital. In fact it would be potentially fatal.

So now, because my right arm hurts, well, you can fill in the blank. Some of you will dismiss this as exaggeration, a highly unlikely scenario. Except that it has already happened to others, be they pALS or bedridden for some other reason. So when I complain about what you think is some minor thing, it's not minor. nor does it stand alone. There are lots of little things happening. They all add up to something big.

Monday, 19 February 2018

Frozen In Place

What makes me get depressed? It's a difficult question given that I have an illness of which depression is one of the noted side effects. It kind of makes sense. Let's face it, when someone tells you that you are terminal and there is nothing they can do to help you, it's kind of depressing. On the other hand, besides this constant, general underlaying sense of depression, for which I take medication, I have these moments where the feeling seems to sweep into me, washing over me like a wave upon the sand.

I was feeling pretty good an hour ago. I had eaten my brunch, had my cup of coffee, and was resting in my chair, almost at the edge of having a nap. My body needed the rest, yet my mind was active, unwilling to let go of any number of thoughts and ideas drifting through. Then, just a few minutes ago, depression hit, driving me senselessly to the edge of tears, making me wonder why I was doing all of this.

Maybe it's not really depression. Maybe it's the kind of sadness which goes with realizing the futility of things. Like a robotnic labourer on a production line, what I do now means nothing to me. I will do the same thing tomorrow; it will have the same sense of meaningless to it. The next day, and the day after that, also hold that emptiness which sadness can flood into and fill.

There are things I want to do, things I need to do. David has agreed to take me down to Vancouver from March 19th to 24th. I need to line up a caregiver to go with us; that's high on the list. I also need to contact a few different hotels to see what they have to offer in terms of room concessions for caregivers; in the UK the caregiver room was complimentary, and attached to the handicapped room. I doubt we will get that luck in Canada; this country is so backwards when it comes to helping handicapped travelers, or handicapped people in general. Did you know that Denmark will pay for prostitutes for handicapped people struggling with sexual needs? Now that's progressive.

Right now I am frozen in place. I need to do one thing, something, anything which will get me started. Once I take the first step, metaphorically of course, then the next will come naturally. I just have to get the enthusiasm for step one. First, perhaps, another cup of coffee. Then I'll go get the mail which has been piling up since last week. Then, maybe, I'll start with the hotels.

Saturday, 17 February 2018


My upper body has been in a state of fairly rapid decline. If I coul guide anyone with this disease, it would be to say "use it while you can". When you lose it, you really notice it, in both large and small ways. So here are some of the things, large and small, which have changed for me lately.

I can no longer scratch the top of my head, mostly. This is especially true if I am wearing a long-sleeved shirt. The weight of the sleeve is enough to keep my arm from lifting up to that height. So if I have an itch up there, I either have to use something else to scratch it, or somehow use one arm to lift the other high enough to get the job done. Of course this is not a constancy. On a good day, I can still scratch that itch. On a bad day, well, you know. Oh, today is a good day, so far.

I can no longer fold my large towels. I lost the ability to fold sheets some time ago. That was mainly because I could not stand up and engage the folding process properly. Now I cannot fold my larger towels, in part for a similar reason, that they are too big for me to handle, but also, in part, because they have become too heavy for me to lift. I leave it to others now.

I can no longer roll over in bed, mostly. This is, again, due to a conflation of issues. First of all, my catheter constrains me at night. If I roll over completely I run the risk of disconnection. But what is worse, even without the catheter the best I can do is roll up on my side, and not all the time. If there is the smallest of obstacles, like a sheet tucked under me or a pillow beside me, I am stuck. Once I am freed of all obstacles, I still can't do it without help. My arms are no longer strong enough to pull me over, unless the stars align and the moon shines bright. Then, maybe.

Almost every time I bend over in a mostly vain attempt to pick something up off the floor, I soil myself. Yes, that is a polite way of saying I have a bowel movement. I'm not sure why my body insists on doing this. I just happens. So these days, mostly, when I drop something, I either leave it for someone else to pick up, or I use a grabby stick.

There are all kinds of other things which have changed for me lately, what with the loss of my arms. While this process is not complete, it is moving along. Other things will change. I will decline. That's just the way it is.

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.

Thursday, 8 February 2018

Something Or Nothing

Yesterday my Health Care Aide showed up with the sniffles and a bit of throat clearing. I asked if she thought she had a cold. She said "No. It's just the cold air outside affecting my sinuses." I wasn't so sure, and asked if she had a mask with her. She didn't. So I compromised and sent her off after getting me out of bed; no exercises, no breakfast. I had a fruit plate in the fridge.

Today I woke up with a bit of a headache and swollen glands in my neck, around my ears. I have a slight fever, but it might be a bladder infection or something else. My head is a bit fuzzy too, but I'm not sure if this is vertigo possibly, since I stopped taking my vertigo pills a few days ago on the advice of my doctor. If my vertigo comes back or gets worse, then I will go back on the pills. As to whether or not I'm getting a cold or some similar virus, it will take a day or three to really find out.

I am terrified of getting a serious cold. In my weakened immune state, I have a hard time fighting off bacterial infections, and no hope at all against viral infections where I don't have some form of internal immunity from prior attacks. If I get a cold, odds are fair that it will turn into pneumonia. Pneumonia is high on my "things that can kill me" list. It's how a great many ALS patients die.

I can fight a bacterial infection, like my recurring bladder infections, with antibiotics. I can do nothing against viral infections except hope that my body can fight back. It's why I get a flu shot every year. But the common cold has already put me in the isolation ward in the hospital once. I don't want to go back.

Blaming the care worker is not really fair. I don't know that she was incorrect. I have no proof that she had a cold or flu, except that she booked off today. Hell, I don't even know if I have cold or flue. I won't know for a few days. She was, or possibly was not, in the very same position. The only thing is that I am immuno-suppressed while she is not. Erring on the side of caution is just something I have to do these days.

If it's nothing, then nothing further will be said. If it's something, trust me, I will have something to say about it.

Wednesday, 7 February 2018

Feeling Mellow

I have not felt this relaxed and rested in a very long time. No more do I look to feel the recovery, the energy of a good night of sleep. These days the best I can hope for is to wake up feeling calm, rested, and relaxed. That's today. In spades.

This level of restedness can best be attributed to alcohol and drugs. that combination of all things evil. Last night I had three glasses of wine, Richard sized. When my HCA arrived at 9:30 PM, I was physically exhuasted from making wine and preparing ribs for a planned dinner today. My body had been working incredibly hard, lifting things, cutting things, getting and putting things in and out of fridges and cupboards. All that while I had my wine, and a bit of fruit for snacking.

When bedtime came, my body was beat. Unfortunately my mind was anything but. For an hour I lay in bed, tossing and turning the limited amount I can do these days. Even that was wearing my already worn body. So I gave up and took a Zopiclone. It worked, but not all that quickly. I think it was about midnight before I finally hit the heavy sleep zone. However, from then until 10:00 AM, I was out, totally asleep.

On waking up today, I felt almost mellow, a feeling I still have. It's that rested kind of feeling where you know there is nothing pushing you, nothing which must be done. I can just sit here, watch the day go by, perhaps even have a nap or two. Mellow. That's the right word for it.

Tuesday, 6 February 2018

Escaping Prison

The snow outside is absolutely beautiful, clinging to the trees like frosting, sparkling in the sunlight, muffling the sounds of traffic below into an unnatural quietude. It is a Currier and Ives Christmas card, people walking about bundled up in coats and scarves and touques, all to buffer the chill of winter here in Calgary.

The snow outside is a prison, keeping me trapped indoors, making the sidewalks and roadways impassable for my power wheelchair, the slippery roads and cars whooshing by causing me concern, perhaps even fear, as I contemplate the passage from here to the mall across the street. The icy air and chill wind confirm even more completely my decision to stay indoors, locked away from the winter here in Calgary.

There are forever two sides to see, even when I look out over the scene playing before me through my balcony window. The window itself really isn't; it's actually a large sliding glass door with two equally large glass panels on either side. In deference to the icy winds and cold temperatures of winter here, the glass is all heavy, double-paned, with two sliding doors, a double-paned inside door and a single-paned outer door. That way you can have the inner door open during the cool of spring or the warmth of summer, and then use the inner door to block out the cold of winter.

Yet today I am tired of being a prisoner. The snow has stopped falling for today. The sun is out, clear and cold in the deep blue sky above. The temperature is a chill -13C; that's 9F for my American friends. No matter what scale you use, it's cold outside. I will bundle up just like everyone else. My heavily line sheepskin slippers are already on my feet, offering more protection than my shoes. I don't wear boots anymore; it's almost impossible for the HCA's or anyone else to get them onto my limp and non-cooperative feet and legs. I will wear a cap and the hood from my hoodie. I will have gloves on and zippers done up. 

I'l be okay. I'll enjoy it. I've been trapped indoors for almost a week. The forecast calls for more snow and icy conditions for the next week. After that, even the meteorologists admit to basically guessing, no matter how educated that guess may be. It is mid-winter. I have to take my opportunities where I find them. Today is an opportunity. I shall escape this prison of my apartment, breaking free to the great outdoors, to feel the fresh, albeit cold, air on my skin.

Monday, 5 February 2018

Nap Needs

One of the most frustrating things about having ALS is the constant tiredness and the inability to recover in any sort of timely manner from any substantial exertion. Even small exertions can leave me helpless for a half hour or even longer.

On Saturday night I stayed up late. I got into binging on a Netflix show. Home care was all mess up because of the snowy roads, so I ended up getting evening care at around 11:00 PM. I decided to stay up, have a few adult beverages and watch their newest offering, Altered Carbon. It was an interesting show, and I got quickly hooked into it. So I stayed up, sufficiently late that I am embarrassed to say how late. Let's just say that when I fell asleep in my chair, I knew it was time to go to bed.

Getting into bed was no issue. I had my sling behind me on my wheelchair and was already wearing my nighttime urine bag. So I just slung in. I slept, sort of, until home care arrived at 11:30 AM, once again delayed by snow. Then I got up, facing the music. If you can't do the time, don't do the crime.

Sunday was a semi-lazy day. I did a bit of laundry, but I didn't fold it, except for some towels. I baked some bacon, getting it ready to put into single slices for the freezer. And I napped. When my HCA came early, at 8:30 PM, I said "yes, put me to bed now." I slept until 11:00 AM this morning.

Yet even with all that rest, I have spent all of today napping, unable to get past my need for sleep recovery, unable to push the machine that was once my body past torpidity. It's taken me the whole day just to get to my laptop, to do my daily mail and blog checks. Even now I am ready for an early bedtime tonight, looking forward to it, in fact. So, for someone who will easily get 12 hours of sleep for recovery, why is it that it takes me at least 2 days or more to recover from 6 hours of lost sleep?

I used to do the late nights with ease, on a regular basis. Now I am like a small child, unable to get by without lots of sleep and a nap or two each day. And even the smallest task requires that I stop and rest afterwards. Another part of living with ALS. Living. Humph!

Saturday, 3 February 2018

Wheelchair Lights

I was in Canadian Tire the other day, not for any particular reason, just for a bit of fun looking around. While there I noticed some LED strips designed to go on the inside of a car or along the running boards of a truck. I had been thinking for some time about putting lights on the back of my wheelchair, given that I am often out after dark, rolling home from shopping or a movie or something of that sort.

I decided to check with Home Mobility Solutions, the folks who maintain my manual chair, my bed lift, and the Power Wheelchair supplied to me by the ALS Societ of Alberta. It was my intent to add these light strips onto the back of my wheelchair, then wire them into a toggle switch which would have to be added to the control panel. No big deal, right?

At the same time I sent a letter asking the ALS Society if I might make this custom addition to their wheelchair. It's not the kind of thing they do, and if they did they would be required to use a different controller with the control switches already built in, along with the manufacturers lighting system, a process costing somewhere around $1,500. They don't see that as a wise expenditure, a position I completely agree with.

On the other hand, I can get the light strips at Canadian Tire for anywhere from $20 to $40, depending on features and brightness. My idea was to put orange on the front and red on the back, possibly blinking on the back but definitely not on the front. So my cost might run from $40 to $80. A toggle switch could be had for about $8.00. Again, no big deal, right?

Then comes the labour needed to attach this setup. If my brother Jim were here, I would ask him to do it. If I were not stuck in this chair I would do it myself, but that's kind of silly if you think about it. Unfortunately I don't know any auto electric savvy people here in Calgary who I might ask for help. So I asked Home Medical Solutions what they would charge.

They felt it would take up to two hours to do the wiring, not an unreasonable estimate. They also said they would only charge the shop rate of $80, but would prefer to do the work in their shop. That means I would be back in my manual chair for a day or two, a bit of a challenge for me in that it would mean staying in my apartment. While staying in my apartment for a day or two is not too rough, especially in mid-winter, spending $40 for parts and $160 for labour is not my idea of a good time.

On the other hand I have gotten by without lights for a few years now. I really don't need them. It was just an idea. Trust me, if I had another $200 to spend, I can think of far better places to spend it. For example, on Scotch, or on another wine kit, or perhaps even on groceries. I'm going to keep this idea in the back of my head. Maybe I can talk my brother Jim into doing it for me.

Friday, 2 February 2018

Will You Take Me For A Drive?

After much discussion back and forth, a decision has been made. I will not sell my truck just yet. Instead it will be insured for the year so that David and others can take me for a ride now and again, perhaps even a road trip of sorts. So the truck has been insured. I'll do the registration in a day or two.

What this means is that anyone of my friends nearby can take me for a drive, perhaps out to Cross Iron Mills, or even a day trip, perhaps to Lake Louise. More extensive trips are possible, with hotels and such, but they will have to happen with a trained caregiver along for the ride. That may soon happen of its own course as I am working to switch to Self-Managed Care and looking for a live-in caregiver.

If anyone wishes to take me for a ride, there are two things which will be important. First of all, learning to transfer me from my Power Wheelchair to the passenger side of my truck. It's not all that difficult as they are nearly level with one another. All that is needed is a push up a transfer board into the truck. Several people have already done this. It's just figuring out what way works best for the driver.

The next element is getting my wheelchair into the back of the truck. Any number of people have done this. They can tell you that it is both more difficult than you might think, but also easier than it seems once you figure it out. In order to get my Power Wheelchair into the back of the truck, there is the ramp for starters. It needs to be pulled out and set up. I can do this myself, so it's not all that difficult, just a bit heavy.

Once the ramp is in place the fun begins. Once I am in the truck, the driver needs to take my wheelchair to the back of the truck, set the seat at about a 45 degree angle, then drive it up the ramp. Once on the truck gate, the control arm needs to be folded back for clearance, then the chair can be driven into the truck bed. Others have done this and tell me it's not that hard once you do it the first time.

You don't need to be strong for this. All you need is a bit of flexibility when it comes to driving the chair into the truck bed. Katherine used to do this, and she was tiny. On the other hand she could handle the bending over while moving the chair into the truck. That's the real key.

So friends, don't be frightened. If you have an afternoon and would like to take me for a drive, I am up for it. We can do a practice run with the wheelchair first, then off we go!

Thursday, 1 February 2018

Another Damned Bladder Infection

I'm tired today. I took a sleeping pill last night; they always leave me feeling a bit groggy the next day. Same with the pot brownies, only they left me feeling a bit high the next day. Choose your poison, I guess.

I'm tired for another reason too. I am fighting another bladder infection. This one is a low grade infection, the kind I had for most of last year. What happens is these low grade infections settle in, waiting for a moment when my system is particularly weak, then flair up, becoming not only a full blown infection, but an infection with the potential for sepsis.

Dealing with the low grade bladder infections is the same as dealing with the full blown monsters; antibiotics. Only this time we are not starting with a full 10 course of Cipro. Instead I have taken the single dose Monurol that I have on hand, hoping that it will work as well as it did when David and I were in Scotland. When I got my infection there, I took the Monurol and things cleared up in less than 48 hours. Essentially it's kind of an overnight cure, specifically targeted towards bladder infections. It's not even pills; it's a powder you mix with water and drink.

All of that aside, I am still tired, from the combination of sleeping pills and the bladder infection. Fortunately I have absolutely nothing planned for this afternoon. I will nap. I will rest. I will drink plenty of water. I might even watch some TV. Mostly I will do nothing. With any luck I will be over the infection by tomorrow.