My caregiver needs have been resolved, at least for now. One thing I have learned in this process is that nothing is certain until it is done, no shift is filled until the shift is over. As one of my friends taught me, a contract is not a contract until the last cheque clears the bank. Even so, it feels great to have my own caregiving team starting on October 1.
I've already instituted one of the most significant changes to my care plan. From now on, exercises will happen in the evenings, arms and legs on alternating days with Sunday as a holiday. My hope is that this change will mean I am less exhausted in the mornings. In addition, since I set the care plan, I'm comfortable that there will be no arguments when it comes to laundry or such. I'm also expecting my apartment will be somewhat tidier.
What's really great about this team is that two out of three of them are up for travel, especially road trips. They are all in agreement that a travel day does not mean extra pay; they will be paid the normal daily hours. They will, however, get their own room at night. That can be a challenge for costs, but I want to find a way to do a couple of road trips over the fall and winter. I may have to sell my soul to raise the money, but then again my soul ain't worth all that much these days.
The other exciting thing is that two of the three are amenable to live-in; one of them is doing that already but wants some extra work, something I should have encouraged Shelby to do more of. On top of that, one of them knows a person who is explicitly looking for a live-in position. She's going to send me a resume tomorrow.
Now the challenge is the wait until October 1. That's 12 days where a lot of things can change. I hope they don't; you just never know. I'm going to have to remain anxious, probably even after everything kicks into gear. Worry? I can do that, right?
Tuesday, 18 September 2018
Monday, 17 September 2018
A New Hire
I've hire my first caregiver in the journey to replace Shelby. She will be the "coverage" person, intended to cover weekends and holidays. It's good to have that done. Tomorrow I am expecting to hire either one or two more candidates to cover the "full time" slot; one to work most days and another to work a couple of evenings a week.
This whole process has demonstrated to my why it has been so difficult for CBI to find competent, dedicated workers to care for me. As the supervisor said today, while training yet another new person, "there are those for whom this is a passion, and those for whom this is just a job." I've seen a lot of that in both the resumes I've reviewed and the people I've interviewed. What I have come to re-learn, as I have learned in the past, is that trusting my instincts along with a steely-eyed resume review, is the best way to do the hiring. If something feels off, listen to that feeling.
I'm ready to get back to self-managed care. It's a fair bit of work on my part, although David has agreed to help me with the paperwork. I actually thought about hiring someone for five hours a week just to provide an hour of supervision and coverage each weekday. I had someone specific for that role, but she can't do it, so I let it pass.
The live-in role is still a working plan, but the urgency is gone with live-out staff on board. The live-in would give me companionship along with care, providing me with a roommate for at least some of my days. I liked that when Shelby was here. I would like it again. For now, though, the first bridge has been crossed. Christine starts next Sunday or Monday, depending on what the other caregivers want.
This whole process has demonstrated to my why it has been so difficult for CBI to find competent, dedicated workers to care for me. As the supervisor said today, while training yet another new person, "there are those for whom this is a passion, and those for whom this is just a job." I've seen a lot of that in both the resumes I've reviewed and the people I've interviewed. What I have come to re-learn, as I have learned in the past, is that trusting my instincts along with a steely-eyed resume review, is the best way to do the hiring. If something feels off, listen to that feeling.
I'm ready to get back to self-managed care. It's a fair bit of work on my part, although David has agreed to help me with the paperwork. I actually thought about hiring someone for five hours a week just to provide an hour of supervision and coverage each weekday. I had someone specific for that role, but she can't do it, so I let it pass.
The live-in role is still a working plan, but the urgency is gone with live-out staff on board. The live-in would give me companionship along with care, providing me with a roommate for at least some of my days. I liked that when Shelby was here. I would like it again. For now, though, the first bridge has been crossed. Christine starts next Sunday or Monday, depending on what the other caregivers want.
Sunday, 16 September 2018
Another Winter
I've reverted back to my lap desk. It's easier for eating and typing than using the dining room table. It also allows me to write whilst sitting in front of my window, looking at my tree. Today the sky is dim, a soft grey from horizon to horizon, not quite threatening rain yet not quite providing confidence enough to go out without a coat. There is a chill in the air as it struggles to warm up past freezing.
It may technically be summer for another week, but fall is definitely here in Calgary. The leaves have turned on all but the most hardy of deciduous trees, many of them already fallen, scattering on the grass like a poor man's carpet, showing bits of green through the covering pattern of yellow. The sidewalks and streets have been attacked by the street sweepers and landscapers, leaves thrown into the gutters, there to rest until the next rain or melting snow pushes them downwards where they will clog the gutters, overflowing them into the streets where passing traffic will turn it all into a glorious mess.
It doesn't rain here like it does on the coast. Calgary rains come and go, rather than settling in for months on end. The horizon here is open, rather than encamped by mountains on almost all sides. Certainly I get to see the mountains, often. They are an hours drive to the west, yet visible from here within the city on a clear day, and most days are clear. Even this cold front which brings the clouds and showers will be gone by tomorrow, only to return in a few days, then once again leave.
When the cold of winter finally arrives, perhaps in late October, the skies will be brilliantly blue once again, clearing the air, making the distance seem immeasurable, bringing the far mountains into near focus, spiking the air with a chill. Then too, the winds will come, making me all the happier to sit in front of my window, warm in my apartment, watching the wizards of winter wend their way.
I hope I am still here for that. It would be nice to have another winter.
It may technically be summer for another week, but fall is definitely here in Calgary. The leaves have turned on all but the most hardy of deciduous trees, many of them already fallen, scattering on the grass like a poor man's carpet, showing bits of green through the covering pattern of yellow. The sidewalks and streets have been attacked by the street sweepers and landscapers, leaves thrown into the gutters, there to rest until the next rain or melting snow pushes them downwards where they will clog the gutters, overflowing them into the streets where passing traffic will turn it all into a glorious mess.
It doesn't rain here like it does on the coast. Calgary rains come and go, rather than settling in for months on end. The horizon here is open, rather than encamped by mountains on almost all sides. Certainly I get to see the mountains, often. They are an hours drive to the west, yet visible from here within the city on a clear day, and most days are clear. Even this cold front which brings the clouds and showers will be gone by tomorrow, only to return in a few days, then once again leave.
When the cold of winter finally arrives, perhaps in late October, the skies will be brilliantly blue once again, clearing the air, making the distance seem immeasurable, bringing the far mountains into near focus, spiking the air with a chill. Then too, the winds will come, making me all the happier to sit in front of my window, warm in my apartment, watching the wizards of winter wend their way.
I hope I am still here for that. It would be nice to have another winter.
Saturday, 15 September 2018
Mourning
I'm at sorry I haven't posted lately. I've been mourning the loss and failure of my sex life. It's gone, it's just gone, and I really miss it.
I don't really feel like writing a lot these days. In fact most days I don't feel like writing at all. It's not so much the work as it is that I just don't feel like I have anything left to say.
The truth is I'm tired of living with this disease. I'm tired of life in general this way, and I don't really know what to do anymore. I wake up each day. I eat my breakfast, and I go on. Unfortunately much of that go on is just sitting in my apartment watching Netflix or looking out my window watching people walk through the parking lot across the street.
No, I'm not going to end my life anytime soon. I'm just not having a lot of fun. I do enjoy time with friends, but there is no one to hold me during the day or lie with me at night. I'm alone, alone in my fight with ALS, notwithstanding all of the others around me who struggle with the same battle. No matter what you say, we all do it alone when it comes to the end, or even part way through.
This is a terrible disease, a disease that I have to deal with in the terrible part right now. I just wish there was a little fun to be had.
Thursday, 13 September 2018
Laundry And Shopping
My friend Brad has been over for most of the afternoon. He just left about 15 minutes ago. I asked him to come over today, to help me with a couple of household chores; doing some laundry and doing some shopping. In both of these there is a small story, enlightening nonetheless.
Laundry is a task which has been taken care of by my HCA's for a very long time, at least a couple of years. Yet on Monday when I asked my newest HCA to do a load of laundry, she refused, declaring it not to be in the care plan. I repeated the request on Tuesday, at which point she got quite huffy, declaring that she is not supposed to do work that is not on the care plan. I asked why all the other HCA's were doing it for me, at which point she got even huffier. I backed down, deciding instead to talk to her supervisor.
The RN Supervisor came to visit today. I asked her about the laundry. She read the care plan, only to tell me that a some point the "Wash" checkbox for laundry had been checked, but nothing else. She went on to tell me that even the "Wash" instruction had been crossed out. I asked about the past, to which she shrugged her shoulders, telling me they shouldn't have been doing it. It is not on the care plan.
I wonder about a couple of things here. Why, knowing full well that I cannot do my own laundry, would my AHS caseworker have started to note "Wash, Dry, Fold", only to scribble it out after checking the first box? Second, how could this process have gone on so long without someone noticing, until a fairly lazy HCA seeking to avoid a task discovered the error?
In defence of the RN Supervisor, she had been trying to contact my AHS Caseworker to get an updated care plan. The reality is that time allotments for me are based on the care plan. If there is time allotted for doing laundry, which there is, it had damned well better be on the care plan. If no, someone is either paying for a service not delivered or not being paid for the work they do.
Shopping, on the other hand, is a task home care will not do. It is not within their mandate. I don't mind so much; I enjoy doing my own grocery shopping. The problem is that increasingly the barriers to my life make it more difficult for me to get out of my building. This makes going shopping a challenge, one I will often pass on, instead asking friends to pick up things for me. Then, every once in a while, I will impose on one of my friends to make a major shopping trip with me. It's fun for me, and I get some great company.
Both of these situations highlight the differences between self-managed care and vendor-managed care. With vendor-managed care, a case worker with AHS writes the care plan. Part of their mandate is to deliver only those services with they feel I need, within the AHS guidelines. On the other hand, with self-managed care, I write the care plan with whatever I think I need, as long as I stay within the AHS budget. That's why I am working so hard, why David and Anne are working so hard, to get a self-managed caregiver for me. It's what I will need increasingly as I get worse and worse.
Laundry is a task which has been taken care of by my HCA's for a very long time, at least a couple of years. Yet on Monday when I asked my newest HCA to do a load of laundry, she refused, declaring it not to be in the care plan. I repeated the request on Tuesday, at which point she got quite huffy, declaring that she is not supposed to do work that is not on the care plan. I asked why all the other HCA's were doing it for me, at which point she got even huffier. I backed down, deciding instead to talk to her supervisor.
The RN Supervisor came to visit today. I asked her about the laundry. She read the care plan, only to tell me that a some point the "Wash" checkbox for laundry had been checked, but nothing else. She went on to tell me that even the "Wash" instruction had been crossed out. I asked about the past, to which she shrugged her shoulders, telling me they shouldn't have been doing it. It is not on the care plan.
I wonder about a couple of things here. Why, knowing full well that I cannot do my own laundry, would my AHS caseworker have started to note "Wash, Dry, Fold", only to scribble it out after checking the first box? Second, how could this process have gone on so long without someone noticing, until a fairly lazy HCA seeking to avoid a task discovered the error?
In defence of the RN Supervisor, she had been trying to contact my AHS Caseworker to get an updated care plan. The reality is that time allotments for me are based on the care plan. If there is time allotted for doing laundry, which there is, it had damned well better be on the care plan. If no, someone is either paying for a service not delivered or not being paid for the work they do.
Shopping, on the other hand, is a task home care will not do. It is not within their mandate. I don't mind so much; I enjoy doing my own grocery shopping. The problem is that increasingly the barriers to my life make it more difficult for me to get out of my building. This makes going shopping a challenge, one I will often pass on, instead asking friends to pick up things for me. Then, every once in a while, I will impose on one of my friends to make a major shopping trip with me. It's fun for me, and I get some great company.
Both of these situations highlight the differences between self-managed care and vendor-managed care. With vendor-managed care, a case worker with AHS writes the care plan. Part of their mandate is to deliver only those services with they feel I need, within the AHS guidelines. On the other hand, with self-managed care, I write the care plan with whatever I think I need, as long as I stay within the AHS budget. That's why I am working so hard, why David and Anne are working so hard, to get a self-managed caregiver for me. It's what I will need increasingly as I get worse and worse.
Wednesday, 12 September 2018
No News From The ALS Clinic
I went to the ALS clinic today. I really don't care to go to the clinic anymore. First, the appointments are in the morning; this morning I had to wake up at 8:00 AM to get an Access Calgary bus at 9:10 AM for a 10:30 AM appointment. Second, the transit logistics are terrible; I finished my appointment at 1:00 PM, the Access Calgary bus was scheduled for 2:00 PM, it took 2 hours to make the 45 minute trip. And third, I learn very little that I already don't know, if anything at all.
This marathon effort today produced very little news. My lung volume is low while my breathing is fine. My diaphragm is a lot weaker, but my CO2 output is normal. Oh, and I gained 1 pound a month over the last year, all on my belly. It was interesting. On hearing the weight gain, the respirologist said "Oh, that's good." I'm not sure if it is good because I gained weight or good because I didn't gain a lot more weight.
I've come to the place where I am now comfortable with the fact that I am going to continue to gain weight until I stop eating. I plan on eating and drinking for as long as possible! After all, I am in no position to exercise it away. I am the most sedentary of sedentary people, immobile from the shoulders down. As to when I stop eating, I'm fairly sure that event is well on it's way. I'm having plenty of trouble getting the fork to my mouth these days, and it's only going to get worse.
When it comes to my breathing, I've got a long way to go yet. There are plenty of people out there with only one lung; that means a lung volume capacity of 50%. I can get well below that before it becomes serious. The same is true with my diaphragm and breathing in general. Yes, I get tired, short of breath. Yet I am still breathing well overall.
All in all, it was a "stay the course" kind of a day; nothing dramatic, nothing exciting, things progressing as one might expect. It really kind of fits in with my general approach to this, that I will let nature take its course. That doesn't mean giving up. I\ll keep living as well as I can for as long as I can. Once that comes to an end, so do I. No fuss, no muss, no bother. It just seems like the right thing to do, living one day at a time.
This marathon effort today produced very little news. My lung volume is low while my breathing is fine. My diaphragm is a lot weaker, but my CO2 output is normal. Oh, and I gained 1 pound a month over the last year, all on my belly. It was interesting. On hearing the weight gain, the respirologist said "Oh, that's good." I'm not sure if it is good because I gained weight or good because I didn't gain a lot more weight.
I've come to the place where I am now comfortable with the fact that I am going to continue to gain weight until I stop eating. I plan on eating and drinking for as long as possible! After all, I am in no position to exercise it away. I am the most sedentary of sedentary people, immobile from the shoulders down. As to when I stop eating, I'm fairly sure that event is well on it's way. I'm having plenty of trouble getting the fork to my mouth these days, and it's only going to get worse.
When it comes to my breathing, I've got a long way to go yet. There are plenty of people out there with only one lung; that means a lung volume capacity of 50%. I can get well below that before it becomes serious. The same is true with my diaphragm and breathing in general. Yes, I get tired, short of breath. Yet I am still breathing well overall.
All in all, it was a "stay the course" kind of a day; nothing dramatic, nothing exciting, things progressing as one might expect. It really kind of fits in with my general approach to this, that I will let nature take its course. That doesn't mean giving up. I\ll keep living as well as I can for as long as I can. Once that comes to an end, so do I. No fuss, no muss, no bother. It just seems like the right thing to do, living one day at a time.
Tuesday, 11 September 2018
Too Tired
I hate days like today, days where I wake up on a downhill slope and the activities of my day simply accelerate the slope. My arms are weak and floppy. My eyes don't seem to want to focus. I started the day tired and have moved on the deeply exhausted. These days, the kind of days which confirm that I am truly unwell, are the ones which I would prefer to sleep through.
After writing the first paragraph I was so exhausted I stopped for 15 minutes. On returning to my laptop, I find myself worse yet. This is it. No more. I will post this simple note in hopes that you all understand.
After writing the first paragraph I was so exhausted I stopped for 15 minutes. On returning to my laptop, I find myself worse yet. This is it. No more. I will post this simple note in hopes that you all understand.
Subscribe to:
Posts (Atom)