A line in the sand... I drew a line in the sand once. Then I drew it again, and again after that. My last line in the sand looked pretty much as I do now, yet here I am again, only this time there is no line. My hands are no longer strong enough to draw that line. I am no longer certain about where I am going, where I will end up.
That's the problem with a line in the sand; the smallest breeze can erase it. The slightest change in direction, in condition, in approach can make that line irrelevant, causing it to disappear as grains of silica on the lip of a dune. I've given up on lines in the sand. My horizon, much like the lip of that dune, is ever-shifting, ever-changing.
I no longer think of my life in terms of can or can't, will or won't. These days my life is more about what, right now, do I need to keep going. The concept of a future has become increasingly unimportant as I draw closer to that day when I will not have one.
For all but the strongest of us, we will see our lines shift and sway with the wind. Only the few will draw that line firmly, daring never to cross it, taking the decision when the line has arrived. For the rest of us, we will cling to life desperately, blazing through that line in the sand like a missile over the desert itself. We will ignore this one, drawing immediately the next one, until we are no longer able to draw lines. Then the line won't matter. The decision will no longer be in our hands.
Tuesday, 7 August 2018
Monday, 6 August 2018
A Tale Of Two HCA's
I have two new HCA's working for me, one of whom wants to do a good job but struggles, the other of whom doesn't really want to do a good job yet still struggles. It's interesting to see the approach taken by the two of them. While the first does her best to pay attention to what she is doing, the second is almost completely unaware of what's going on while she works with me, seeming almost resentful about having to do the work.
So lets start with the most problematic, my new morning HCA. She has been through this routine a couple of times. When she arrived she said she wanted to get the commode chair. I said she had to drain me first, to which she replied "We can drain you in the shower." I think somehow, notwithstanding other mornings, that I might magically drain my own bladder while sitting in the shower. I know others can do that; alas I cannot.
She grabbed the catheter supplies and started the process of draining me. I reminded her that we had to do peri-care first, to which she said "Why do we have to do peri-care? You're going into the shower." I reminded her that I didn't want he shoving that catheter down my urethra without cleaning that area first. She was unimpressed.
There were a couple of other questions like that, none of them seeming to come from curiousity about process. Instead they fell into the category of asking why she had to do something, looking for a way to not do it. I could attribute them to a desire to fine efficiencies. Somehow, based on tone of voice and approach, they didn't sound like that.
The worst moment came when she was transferring me into my commode chair. She had the brakes on the chair, while the chair feet were braced against by bedframe. When the chair became jammed, she went to move it back, only to realize the brakes were on. She undid one brake. As she moved to the other side I said "Be careful. This chair is going to fall.." My warning went unheeded. She undid the other brake. My commode chair slammed to the ground, potentially hurtling me onto the floor. I was ready, my hands gripped tightly to the handles. I knew my warning would go unheeded.
Perhaps the best one of the morning was when we were close to done, having successfully failed to do exercises or make breakfast. She was wondering if we could start making some sandwiches. I asked her if she had read the list on the door. She said "I know what is on the list!" I replied "Then why don't I have any water on the table." She filled my water jug.
The list on my apartment door shows the five most important things the HCA must do in the mornings. They are
The floor is still stained and dirty. The garbage and recycling are both full. As to making the bed, well, she took a minimalist approach; no quilt, sheet only, and it was upside down with the head at my feet and the foot at my head.
The there is my new night HCA. She is trying hard. I know it's difficult for her; she's a mother of four so her days are long. I am her last client of the day. Yet each time she is here she has become more proficient, getting things done in a timely manner, remembering the things I need in place before she leaves. The final thing on her list to remember is plugging in my power chair. I am confident she will get that done tonight.
I will leave you to decide what the difference is between the two, and why. For me, I just have to live with it until things can change. Today we did not do my exercise. I have had no breakfast; I won't eat until dinner in about 3 hours. I'll live.
So lets start with the most problematic, my new morning HCA. She has been through this routine a couple of times. When she arrived she said she wanted to get the commode chair. I said she had to drain me first, to which she replied "We can drain you in the shower." I think somehow, notwithstanding other mornings, that I might magically drain my own bladder while sitting in the shower. I know others can do that; alas I cannot.
She grabbed the catheter supplies and started the process of draining me. I reminded her that we had to do peri-care first, to which she said "Why do we have to do peri-care? You're going into the shower." I reminded her that I didn't want he shoving that catheter down my urethra without cleaning that area first. She was unimpressed.
There were a couple of other questions like that, none of them seeming to come from curiousity about process. Instead they fell into the category of asking why she had to do something, looking for a way to not do it. I could attribute them to a desire to fine efficiencies. Somehow, based on tone of voice and approach, they didn't sound like that.
The worst moment came when she was transferring me into my commode chair. She had the brakes on the chair, while the chair feet were braced against by bedframe. When the chair became jammed, she went to move it back, only to realize the brakes were on. She undid one brake. As she moved to the other side I said "Be careful. This chair is going to fall.." My warning went unheeded. She undid the other brake. My commode chair slammed to the ground, potentially hurtling me onto the floor. I was ready, my hands gripped tightly to the handles. I knew my warning would go unheeded.
Perhaps the best one of the morning was when we were close to done, having successfully failed to do exercises or make breakfast. She was wondering if we could start making some sandwiches. I asked her if she had read the list on the door. She said "I know what is on the list!" I replied "Then why don't I have any water on the table." She filled my water jug.
The list on my apartment door shows the five most important things the HCA must do in the mornings. They are
- Make my bed and ensure the sling is setup for the next use.
- Ensure my water jug and mug are filled.
- Sweep or mop the floors as needed.
- Empty or start the dishwasher as needed. Clean other dishes not in the dishwasher.
- Take out the garbage or recycling as needed.
The floor is still stained and dirty. The garbage and recycling are both full. As to making the bed, well, she took a minimalist approach; no quilt, sheet only, and it was upside down with the head at my feet and the foot at my head.
The there is my new night HCA. She is trying hard. I know it's difficult for her; she's a mother of four so her days are long. I am her last client of the day. Yet each time she is here she has become more proficient, getting things done in a timely manner, remembering the things I need in place before she leaves. The final thing on her list to remember is plugging in my power chair. I am confident she will get that done tonight.
I will leave you to decide what the difference is between the two, and why. For me, I just have to live with it until things can change. Today we did not do my exercise. I have had no breakfast; I won't eat until dinner in about 3 hours. I'll live.
Sunday, 5 August 2018
The Burden
I'm tired. So many of my thoughts these days range to the negative, to the failure of my life, to the illness riddled depths to which I have fallen. I must take great care these days when I say, or write, these thoughts which dominate my reflections, which overshadow my ruminations. It is nearly impossible to see the world through sunny ways while I live these deeply darkened days.
I am distraught. My ability to sustain a positive thought or view is near worn away to a nub. Here I sit with the second half of my Dad's aphorism. How can it get worse, or more importantly, more realistically, how will it get worse? I know for a fact that it will. I am no longer Sisyphus. Instead I am on a long, slow slide which ends at the river Styx.
So what have I got to live for? What keeps my going against such great distress? Well, I, like my Dad again, want to see what happens tomorrow. Oddly enough I still live with that ghost of hope, that idea that something good might happen for me, that tomorrow, or even today, might include something which lifts this cloud of grey from me. I live in the constant hope of a better tomorrow, as insane as that may be with a disease like ALS.
So why do I continue to live with such unimaginable challenge? Unfortunately the only option is to die from this challenge. I have so many things in my life which make it easier to live, which lift the burden from me. I have things mechanical, things electronic. I have people, the most important thing to have, who care about me, who will help me. While this is an incredibly lonely journey, I cannot say that I have ever been alone on this journey, not from the first moment of diagnosis even up to this day.
I am loved. This matters. Those who love me do the things which keep me going, right from the smallest bit of help to the substantial. This is, perhaps, the most important outcome from ALS, to have learned who loves me, how far they will go to care for me. Even those who, like me, have so so little are still there, pitching in, helping me carry the load. The burden may be upon my shoulders, but it is easy to carry when shared so much.
I am distraught. My ability to sustain a positive thought or view is near worn away to a nub. Here I sit with the second half of my Dad's aphorism. How can it get worse, or more importantly, more realistically, how will it get worse? I know for a fact that it will. I am no longer Sisyphus. Instead I am on a long, slow slide which ends at the river Styx.
So what have I got to live for? What keeps my going against such great distress? Well, I, like my Dad again, want to see what happens tomorrow. Oddly enough I still live with that ghost of hope, that idea that something good might happen for me, that tomorrow, or even today, might include something which lifts this cloud of grey from me. I live in the constant hope of a better tomorrow, as insane as that may be with a disease like ALS.
So why do I continue to live with such unimaginable challenge? Unfortunately the only option is to die from this challenge. I have so many things in my life which make it easier to live, which lift the burden from me. I have things mechanical, things electronic. I have people, the most important thing to have, who care about me, who will help me. While this is an incredibly lonely journey, I cannot say that I have ever been alone on this journey, not from the first moment of diagnosis even up to this day.
I am loved. This matters. Those who love me do the things which keep me going, right from the smallest bit of help to the substantial. This is, perhaps, the most important outcome from ALS, to have learned who loves me, how far they will go to care for me. Even those who, like me, have so so little are still there, pitching in, helping me carry the load. The burden may be upon my shoulders, but it is easy to carry when shared so much.
Saturday, 4 August 2018
No Sleep Machine Please
Two o'clock. That seems to be my normal beginning of functioning for my day. It's not when I get up, or even when I wake up. Thanks to ALS, waking up often precedes the act of getting out of bed by anywhere from one to three hours, sometimes more depending on the schedules of my various HCA's. No, what usually happens is when I finally am in my chair, mobile and rolling, I have coffee and breakfast, followed immediately by a nap. Then, at about 2:00 PM, I wake up, not really ready to roll, but at least prepared to attempt it.
Two o'clock. That seems to by my normal time to wake up in the middle of the night, often driven to wakefulness by nightmares or dreams. On a regular basis I wake up so quickly I can still hear the echos of the last midnight scream bouncing off the walls of my bedroom. I do not sleep well after 2:00 AM, usually taking at least an hour to shake the aftermath of a nightmare, only to awaken every hour or so thereafter, leaving me wide awake for when my one of my various HCA's arrive.
If I could, I would take a sleeping pill every night just to escape this wakeful pattern. I don't. The sleeping pills hang on for a long time, making me even more sleepy and groggy the following day. Even after 2:00 PM, assuming my drugged nap doesn't run longer than normal, I find it a challenge to be active in any intelligent manner. Often a sleeping pill at night turns in to a totally non-functioning day to follow.
Sleep issues are normal for people with ALS. We need more sleep than most people can possibly understand. Twelve hours out of any day is not an uncommon sleep cycle. The reverse happens too, where we PALS find ourselves unable to sleep in a normal pattern, wakefulness dogging us to the point where we find more that 20 has passed without having a useful sleep. So we are sleep deprived the next day.
Sleep is a big deal. I'm not sure if I want to sleep or if I fear sleep. Sleep brings the dreams, waking me in the middle of the night. Wakefulness carries my exhaustion into the next day. I will most likely die in my sleep, my core muscles unable to push, my diaphragm unable to force CO2 out of my lungs in sufficient quantity to keep my brain alive.
Yet sleep I must. Sleep I will, Whether drugged or not. It is one of those basic human functions, one of the functions I am already beginning to lose as my diaphragm and core muscles weaken. Sleep I will, one day raging in a dream I will pass into that long darkness, staying asleep forever. I wonder if the dreams will follow me into death? Or are they the strange workings of a mind deprived of adequate air?
By the way, to those of you prepared to tell me I should get a Bi-PAP or some other machine to help me sleep, don't bother. This is one of the battles I will leave my body to fight. Soon enough the battle will end. Soon enough I will sleep well again. I don't want a machine.
Two o'clock. That seems to by my normal time to wake up in the middle of the night, often driven to wakefulness by nightmares or dreams. On a regular basis I wake up so quickly I can still hear the echos of the last midnight scream bouncing off the walls of my bedroom. I do not sleep well after 2:00 AM, usually taking at least an hour to shake the aftermath of a nightmare, only to awaken every hour or so thereafter, leaving me wide awake for when my one of my various HCA's arrive.
If I could, I would take a sleeping pill every night just to escape this wakeful pattern. I don't. The sleeping pills hang on for a long time, making me even more sleepy and groggy the following day. Even after 2:00 PM, assuming my drugged nap doesn't run longer than normal, I find it a challenge to be active in any intelligent manner. Often a sleeping pill at night turns in to a totally non-functioning day to follow.
Sleep issues are normal for people with ALS. We need more sleep than most people can possibly understand. Twelve hours out of any day is not an uncommon sleep cycle. The reverse happens too, where we PALS find ourselves unable to sleep in a normal pattern, wakefulness dogging us to the point where we find more that 20 has passed without having a useful sleep. So we are sleep deprived the next day.
Sleep is a big deal. I'm not sure if I want to sleep or if I fear sleep. Sleep brings the dreams, waking me in the middle of the night. Wakefulness carries my exhaustion into the next day. I will most likely die in my sleep, my core muscles unable to push, my diaphragm unable to force CO2 out of my lungs in sufficient quantity to keep my brain alive.
Yet sleep I must. Sleep I will, Whether drugged or not. It is one of those basic human functions, one of the functions I am already beginning to lose as my diaphragm and core muscles weaken. Sleep I will, one day raging in a dream I will pass into that long darkness, staying asleep forever. I wonder if the dreams will follow me into death? Or are they the strange workings of a mind deprived of adequate air?
By the way, to those of you prepared to tell me I should get a Bi-PAP or some other machine to help me sleep, don't bother. This is one of the battles I will leave my body to fight. Soon enough the battle will end. Soon enough I will sleep well again. I don't want a machine.
Friday, 3 August 2018
Low Functioning Day
I am having a low functioning day today. This is as opposed to a non-functioning day. A low functioning day means I still have the strength to write, and possibly do something if accompanied by someone who will help me with doors and such. Non-functioning days are those where there is no blog entry, mostly.
Here is a good example of the difference. Today my HCA started my laundry. I don't know what state it is in right now, wet in the washer or dry in the dryer. I don't know how far she got. I also don't really care. I am going to ask my next HCA to check it for me. She will take it the next step, whatever that may be. My functioning level is enough to be aware of it, to ask for help with it. A non-functioing day would be where I don't even ask the HCA to start the laundry, where I just give up the day without a fight.
It's not that there is any particular fight on a low-functioning day, at least not more than the usual ALS fight to keep going. It just feels like a non-functioning day is a fight to even move about. At least today I can do that, move about. I've even had visitors; the visitor from the ALS Society fixed my wheelchar headrest along with putting a screw into the the A/C window panel so I could start the A/C.
My neighbour came over to visit. She has terminal lung cancer, as my Dad did when he died. She is in that final stage where the doctors have given her a couple of months or less to live. It's kind of odd; we compare notes on the dying process. Hers is faster than mine. I envy her. Inspite of being very weak, she can still walk as she did today, from her apartment two doors down into mine. I envy her. She has a husband beside her who, despite increasing dementia issues, loves her. I envy her.
Perhaps that is what a low-functioning day really is. I don't have the energy to do much, except to waste emotional energy on wishing my illness wouldn't leave me in such a limited state. Oh well, I am hoping to get out shortly, over to Safeway. David is coming for dinner but I've asked him if he can help me get through my apartment doors to do some shopping. That might even be functioning.
Here is a good example of the difference. Today my HCA started my laundry. I don't know what state it is in right now, wet in the washer or dry in the dryer. I don't know how far she got. I also don't really care. I am going to ask my next HCA to check it for me. She will take it the next step, whatever that may be. My functioning level is enough to be aware of it, to ask for help with it. A non-functioing day would be where I don't even ask the HCA to start the laundry, where I just give up the day without a fight.
It's not that there is any particular fight on a low-functioning day, at least not more than the usual ALS fight to keep going. It just feels like a non-functioning day is a fight to even move about. At least today I can do that, move about. I've even had visitors; the visitor from the ALS Society fixed my wheelchar headrest along with putting a screw into the the A/C window panel so I could start the A/C.
My neighbour came over to visit. She has terminal lung cancer, as my Dad did when he died. She is in that final stage where the doctors have given her a couple of months or less to live. It's kind of odd; we compare notes on the dying process. Hers is faster than mine. I envy her. Inspite of being very weak, she can still walk as she did today, from her apartment two doors down into mine. I envy her. She has a husband beside her who, despite increasing dementia issues, loves her. I envy her.
Perhaps that is what a low-functioning day really is. I don't have the energy to do much, except to waste emotional energy on wishing my illness wouldn't leave me in such a limited state. Oh well, I am hoping to get out shortly, over to Safeway. David is coming for dinner but I've asked him if he can help me get through my apartment doors to do some shopping. That might even be functioning.
Thursday, 2 August 2018
Sorry, Not Sorry If I Offend You
I have reached the age, especially with ALS, where I really don't want to work on my "personal issues", where I don't want to feel like I have to apologize for being who and what I am. I have so little life left, I want to spend it feeling good about myself, enjoying who I am no matter what that is. Perhaps I've reached that age where I should be yelling at kids to get off of my lawn.
This is not to say that I don't care what other people think. It actually hurts me quite deeply when people point out a failing of mine, or suggest that I would get on better with others if I did this or did that. But that deep hurt is really kind of shallow. I shake it off, like snow on a dog's back, then I keep living, not unchanged but not committed to some drastic personality adjustment just because someone said I should do it.
That's why I think I am so lucky with the friends I have around me. Mostly they don't ask me to change things about myself. True, they do express times when they wish I wasn't quite as much of me as I can be from time to time. True, we have differences, even arguments; they flow both ways. But just as much as I take them for who and what they are, they take me just the same.
All of this arises from a comment this morning. I was told that some of the HCA's from "certain cultures" don't like working with me because of my sense of humour. First of all, in my defense, I work very hard not to say anything inappropriate to any of my caregivers. I am respectful of them, and grateful for all they do.
Now, in response to the comment... "certain cultures"? I know we live in a multi-cultural society and I am the first to say we should be sensistive to, and recognize the differences of, culture. The issue I have is two-fold. Humour is the only way I can survive some of the embarrassing and humiliating stuff I have to go through with this disease. It's a joke; get over it. Second, while your culture may be important to you, mine is to me as well. I am not offended by things which may offend you. When you are in my home, perhaps you should adjust to my culture!
Finally, if you are an HCA, you are going to run into all kinds of awkward situations, not for yourself but for those to whom you are providing care. My whole like is full of awkward these days. I piss myself in public. My catheter bag shows at the bottom of my pants. When I eat, I make a terrible mess; I need help sometimes. So try all of this on for size, then worry about what offends you.
This is not to say that I don't care what other people think. It actually hurts me quite deeply when people point out a failing of mine, or suggest that I would get on better with others if I did this or did that. But that deep hurt is really kind of shallow. I shake it off, like snow on a dog's back, then I keep living, not unchanged but not committed to some drastic personality adjustment just because someone said I should do it.
That's why I think I am so lucky with the friends I have around me. Mostly they don't ask me to change things about myself. True, they do express times when they wish I wasn't quite as much of me as I can be from time to time. True, we have differences, even arguments; they flow both ways. But just as much as I take them for who and what they are, they take me just the same.
All of this arises from a comment this morning. I was told that some of the HCA's from "certain cultures" don't like working with me because of my sense of humour. First of all, in my defense, I work very hard not to say anything inappropriate to any of my caregivers. I am respectful of them, and grateful for all they do.
Now, in response to the comment... "certain cultures"? I know we live in a multi-cultural society and I am the first to say we should be sensistive to, and recognize the differences of, culture. The issue I have is two-fold. Humour is the only way I can survive some of the embarrassing and humiliating stuff I have to go through with this disease. It's a joke; get over it. Second, while your culture may be important to you, mine is to me as well. I am not offended by things which may offend you. When you are in my home, perhaps you should adjust to my culture!
Finally, if you are an HCA, you are going to run into all kinds of awkward situations, not for yourself but for those to whom you are providing care. My whole like is full of awkward these days. I piss myself in public. My catheter bag shows at the bottom of my pants. When I eat, I make a terrible mess; I need help sometimes. So try all of this on for size, then worry about what offends you.
Wednesday, 1 August 2018
An Adjustable Bed
After months of pricing, pondering, and procrastinating, I've finally gotten myself an adjustable bed. This is one of the most difficult purchases I have made of late, the combination of cost and alternatives continuing to drive me to delay. In the end, after all considerations, the queen sized adjustable bed just seemed to be the right way to go.
I had saved, and have been holding onto savings for the better part of a year. I've been hiding that money, from myself as well as others, so it would be there when I finally decided what to do. It's true that the ALS Society oif Alberta would have provided me with a single sized hospital bed, one with all the bells and whistles. However my experience in hospitals has profoundly affected my view of these beds in the negative. Hospital beds are made for the hospital, not for the sleeper. They are narrow and short. My feet always hang over the end.
Buying a used bed was big on my list. In fact that's why I've taken so long to make this decision. I've been checking online week after week to see what I could get. What's interesting is that the price differential between a used adjustable bed and a new adjustable bed is usually about $200. In some cases the used beds actually cost more than the low end new beds.
So I looked on Amazon for the lowest priced head and foot adjustable bed. Interestingly enough, the bed I eventually selected has some higher end features that beds in this class usually don't have. For example there is a massage function along with a Zero G setting, plus the ubiquitous USB ports that seem to come attached to almost every piece of furniture these days.
The bed is a Classic Brands Comfort Adjustable Bed Base with Massage, Wireless Remote and USB Ports, Queen Sized. I managed to get it when it was $100 off the list price. Why I don 't know. Amazon still confuses me sometimes. I also managed to get free shipping! It is now sitting, unassembled, in my living room. That's the last most frustrating part of this whole exercise. I've got the bed, but I lack the strength to assemble it. Fortunately Dion is coming over in about 3 hours to take over that part.
Note that I have said nothing about a mattress. I can save about $450 by using my existing inner coil mattress. This is your standard mattress, the kind most of us have. These mattresses are probably the worst performing for an adjustable bed, a trade-off I have to make right now. Better to have this than spent even more money. I want to try both mattresses to see which works best. My hope is that Dion will be patient with that extra effort.
So now, with this adjustable bed, I will be able to sit up rather than lay on my back staring at the ceiling. I will be able to use my tablet and laptop in bed; at least I hope that will be possible. I will be able to adjust position somewhat during the night by raising myself up and using the slope to aid in turning. I'll be able to raise my feet to help keep he edema at bay. It all adds up to a much better quality of life.
I had saved, and have been holding onto savings for the better part of a year. I've been hiding that money, from myself as well as others, so it would be there when I finally decided what to do. It's true that the ALS Society oif Alberta would have provided me with a single sized hospital bed, one with all the bells and whistles. However my experience in hospitals has profoundly affected my view of these beds in the negative. Hospital beds are made for the hospital, not for the sleeper. They are narrow and short. My feet always hang over the end.
Buying a used bed was big on my list. In fact that's why I've taken so long to make this decision. I've been checking online week after week to see what I could get. What's interesting is that the price differential between a used adjustable bed and a new adjustable bed is usually about $200. In some cases the used beds actually cost more than the low end new beds.
So I looked on Amazon for the lowest priced head and foot adjustable bed. Interestingly enough, the bed I eventually selected has some higher end features that beds in this class usually don't have. For example there is a massage function along with a Zero G setting, plus the ubiquitous USB ports that seem to come attached to almost every piece of furniture these days.
The bed is a Classic Brands Comfort Adjustable Bed Base with Massage, Wireless Remote and USB Ports, Queen Sized. I managed to get it when it was $100 off the list price. Why I don 't know. Amazon still confuses me sometimes. I also managed to get free shipping! It is now sitting, unassembled, in my living room. That's the last most frustrating part of this whole exercise. I've got the bed, but I lack the strength to assemble it. Fortunately Dion is coming over in about 3 hours to take over that part.
Note that I have said nothing about a mattress. I can save about $450 by using my existing inner coil mattress. This is your standard mattress, the kind most of us have. These mattresses are probably the worst performing for an adjustable bed, a trade-off I have to make right now. Better to have this than spent even more money. I want to try both mattresses to see which works best. My hope is that Dion will be patient with that extra effort.
So now, with this adjustable bed, I will be able to sit up rather than lay on my back staring at the ceiling. I will be able to use my tablet and laptop in bed; at least I hope that will be possible. I will be able to adjust position somewhat during the night by raising myself up and using the slope to aid in turning. I'll be able to raise my feet to help keep he edema at bay. It all adds up to a much better quality of life.
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