I could write a book filled with blog posts about disaster nights. These events, in and of themselves, tell clearly of the progressive nature of ALS and the precipitousness of the slope from able to unable. Most disaster nights involve either blood or feces or urine. Last night was not a trifecta. The best I could do is two out of three; blood was not one of them.
The event, in and of itself, was not particularly noteworthy, except perhaps for the massiveness of the cleanup required. The real element of memorability was the duration. The initiating event, the loss of a catheter, occurred at around 3:45 AM. The secondary event happened during the lengthy, 8 hour delay while I waited for help, around an hour before help finally arrived at 11:30 AM. My body decided it had waited long enough for its normal daily ablutions, and since one was happening, the other might as well happen too.
At the first incident, I called Alberta Health Services On-Call Night Support. There was no answer. I left a message. I called again at 4:30. There was no answer. I left a message. I called at 5:00. There was no answer. I left a message. Then I drifted off, awakening when the phone range at 6:00 AM. It was the AHS Night Nurse Coordinator calling to tell me there were no nurses on shift, that she would refer my call to the morning team arriving at 8:00 AM. Right there that would take me to 4 hours plus, and I know from experience that, thanks to weather and a holiday weekend, it would take at least a couple of hours for them to get to me after that.
So I waited, trying to sleep until 7:00 AM when my plan was to call CBI Home Care, the agency which provides my services. That's when I discovered that their telephone lines were either jammed or for some reason non-functional. So I tried, and tried, and tried, hoping to get through. That happened at about 8:00 AM, still my 4 hours in, and I received the same kind of information. There would be no HCA until my 10:30 AM regular appointment. It's the Easter long weekend, and there is a snowstorm outside.
So I lay there in bed, adding fuel to the fire beneath my body; liquid fuel. It was shortly thereafter that solid fuel decided to make an appearance. I continued to lay in the foul slurry beneath my butt, waiting for the magical hour when someone, anyone, would come to my aid. Ten-thirty came and went, as did eleven. Finally, at 11:30 AM, a caregiver arrived. She was new. She had never done either kind of catheter I needed. She knew nothing about my exercises and didn't have time for them in her schedule regardless. She was double-booked.
I looked at her. She looked at me, sniffing suspiciously. She ran to call a supervisor. Unfortunately the supervisor was an hour away. I needed cleaning. I needed cathetering. So she set to it, doing the best she could considering her inexperience and my inability to be patient given the circumstance. By this time the acid in my urine was beginning to burn my skin. I could feel it. It hurt.
It took almost an hour just to get me, and my bed, cleaned up. The damaged goods are in the laundry right now, almost dry. Next I have to wash my quilt, the one my Mom's quilting group made for me. It's not really that wet, more just damp, but it needs the washing. And finally there will be one last load for my regular clothing, including the pants I just peed into. That's right. The condom catheter put on my by the new caregiver failed on first usage. All told, I've been sitting in my own urine for pretty much 11 out of the last 12 hours.
This is why a live-in makes so much sense. Caregiver quality has very little to do with skills, and a lot to do with proximity. It should would have last night.
Friday, 30 March 2018
Thursday, 29 March 2018
Doing Well
It's lasagna day today. Dan, Emily and David are here for a late dinner. Dan and Emily had to work, so they arrived at 6:30 PM. However Emily had made some lasagna noodles. She wanted them in the lasagna, so we waited for her arrival for assembly. Prior to assembly, I made the various sauces and other ingredients. Once Emily and Dan arrived, we put together what I refer to as my $35,000 lasagna.
Why $35,000 lasagna? Well, Dion and I were eating a lasagna I made. He made a comment about how good it was. I said "It should be good. It costs $35." He said "What? $350." The bidding went up from there until we got tired at $35.000. I use a lot of cheese in this lasagna. It weighs a lot. It's very good.
In a lot ways, I have a lot of fun and a pretty good life. I have friends who will help me make terrific dinners. I have friends who will take me out at night, now that I have a van. I have people in my life who are worried not only about my physical well being, but my financial and emotional well being too. Even though I have lots to worry about, I have people who worry for me and with me.
Today has been a good day for this. The van arrived today. The truck left today, which in it's way is a good thing. Lasagna is in the oven, almost ready to eat. I'm doing well. It's all I can ask for.
Why $35,000 lasagna? Well, Dion and I were eating a lasagna I made. He made a comment about how good it was. I said "It should be good. It costs $35." He said "What? $350." The bidding went up from there until we got tired at $35.000. I use a lot of cheese in this lasagna. It weighs a lot. It's very good.
In a lot ways, I have a lot of fun and a pretty good life. I have friends who will help me make terrific dinners. I have friends who will take me out at night, now that I have a van. I have people in my life who are worried not only about my physical well being, but my financial and emotional well being too. Even though I have lots to worry about, I have people who worry for me and with me.
Today has been a good day for this. The van arrived today. The truck left today, which in it's way is a good thing. Lasagna is in the oven, almost ready to eat. I'm doing well. It's all I can ask for.
Wednesday, 28 March 2018
Tomorrow Is A Long Way Off
The loss of use of my left arm yesterday didn't so much scare me as it did remind me of where all this was going. ALS doesn't take things suddenly. It creeps up until something fails for the first time, mostly likely when you are tired. Then, like me today, some level of functionality returns, after a night of rest. My left upper arm is not working. My left lower arm is working today. My left hand is fairly functional, along with my left wrist.
Notwithstanding the return in function of my left arm, there are still plenty of things which have become impossible, or nearly impossible, thanks to its slow failing. Try opening a can of sardines, the kind with the pull off lid, with only one hand. It's not easy. Ask me how I know. Then there is the whole pill taking routine. For a long time I have put my pills in my left hand, tossed them into my mouth, then had a sip of water from a cup held in my right hand. Now I have to used my right hand to help my left hand up to my mouth, so a caregiver had to hold the cup for me, or it has to sit beside me on a table or stand.
Putting groceries away has become decidedly difficult; last night Kabira put them away for me. Getting things in and out of the fridge, especially if they weigh more than 500 grams or so, is tremendously difficult. I can still do it. It just takes longer, requires more effort, and has the high probability of a spill.
Today I am going to find out how I will do taking laundry out of the dryer. Samhar put it in the dryer, but had to leave before it was done. I am fairly sure I can do it. Most of the work is done by my right hand. The problem comes with trying to open the laundry room door with a basket of laundry on my lap and a useless left arm. That should be exciting.
Loss of one arm will eventually be followed, slowly, but the loss of the other. That will be a touchpoint, a decision point, a time when facts must be faced. I didn't really want things to go this far, yet here I am, willing staying. I simply don't know how I will feel in a few months. I can't look that far ahead. Even tomorrow is a long way off.
Notwithstanding the return in function of my left arm, there are still plenty of things which have become impossible, or nearly impossible, thanks to its slow failing. Try opening a can of sardines, the kind with the pull off lid, with only one hand. It's not easy. Ask me how I know. Then there is the whole pill taking routine. For a long time I have put my pills in my left hand, tossed them into my mouth, then had a sip of water from a cup held in my right hand. Now I have to used my right hand to help my left hand up to my mouth, so a caregiver had to hold the cup for me, or it has to sit beside me on a table or stand.
Putting groceries away has become decidedly difficult; last night Kabira put them away for me. Getting things in and out of the fridge, especially if they weigh more than 500 grams or so, is tremendously difficult. I can still do it. It just takes longer, requires more effort, and has the high probability of a spill.
Today I am going to find out how I will do taking laundry out of the dryer. Samhar put it in the dryer, but had to leave before it was done. I am fairly sure I can do it. Most of the work is done by my right hand. The problem comes with trying to open the laundry room door with a basket of laundry on my lap and a useless left arm. That should be exciting.
Loss of one arm will eventually be followed, slowly, but the loss of the other. That will be a touchpoint, a decision point, a time when facts must be faced. I didn't really want things to go this far, yet here I am, willing staying. I simply don't know how I will feel in a few months. I can't look that far ahead. Even tomorrow is a long way off.
Tuesday, 27 March 2018
A Planned Departure
It will come as no surprise to some of you, and a disappointment to others, that I had planned a MAID exit for March 15th of this year. That's why I was getting all the MAID stuff together last December. That's why I got a Family Doctor to work with me. That's why I made sure I had enough wine and food in my apartment for a decent wake. So why am I still here?
Well, I guess the truth is that I am still more afraid of dying than I am of living. I knew things were going to get bad, and then worse. I knew I was going to become a captive in my own home. I knew I would have little to no contact, real physical contact, from my family, given their distance and issues. I knew my finances were going to get tougher than they already are. I knew I would lose my ability to lift my arms, let alone anything else. I knew I would pretty much lose all my ability to cook, the effort of it far surpassing any joy I get from it.
Yet I enjoy being here. David made the decision to leave all the more difficult with his decision to support my sale of the truck and purchase of the van. Without his financial assistance, that would never have happened. That, plus his promise of at least a couple of road trips, is enough to keep me wanting to be around until at least the summer. My daughter asked me to stick around until she has her wedding celebration this summer, although I suspect I will be in pretty bad shape by then. After all, I could not raise my left arm today.
Then the idea of live-in care made even more things seem possible. I can cook if I have a sous-chef. I can still go shopping, as long as someone helps with the stuff on the high shelves and carrying the bags. I will have company, companionship, even if it is paid help. The only hurdle I have this the shortfall in budget from AHS, about $500 a month. When I sell the truck, David has offered to make some of that available to me; I feel it might be a bridge too far. David has already invested a lot of his time and life in making mine better. Still, there is hope. It can happen.
I think the thing that worries me the most, the thing that will impact me the most, is the responsibility of having to pay someone that money every month, knowing that if I don't have it, I would be in serious trouble. A commitment to payroll is a big deal. Thanks to the GoFundMe, I have a couple of months in the bank. If I cut down on my food and liquor expenses, I can reduce that deficit, perhaps. Those are the only adjustment I can make. I've already almost completely eliminated dining out, going to movies, going to trivia nights. I don't have much room left. I guess that is what scares me the most. Asking for help for me is one thing. Asking for help so I can pay a live-in caregiver is something completely different.
And just so you know, the whole MAID thing is off the table for now. I have made no future appointments.
Well, I guess the truth is that I am still more afraid of dying than I am of living. I knew things were going to get bad, and then worse. I knew I was going to become a captive in my own home. I knew I would have little to no contact, real physical contact, from my family, given their distance and issues. I knew my finances were going to get tougher than they already are. I knew I would lose my ability to lift my arms, let alone anything else. I knew I would pretty much lose all my ability to cook, the effort of it far surpassing any joy I get from it.
Yet I enjoy being here. David made the decision to leave all the more difficult with his decision to support my sale of the truck and purchase of the van. Without his financial assistance, that would never have happened. That, plus his promise of at least a couple of road trips, is enough to keep me wanting to be around until at least the summer. My daughter asked me to stick around until she has her wedding celebration this summer, although I suspect I will be in pretty bad shape by then. After all, I could not raise my left arm today.
Then the idea of live-in care made even more things seem possible. I can cook if I have a sous-chef. I can still go shopping, as long as someone helps with the stuff on the high shelves and carrying the bags. I will have company, companionship, even if it is paid help. The only hurdle I have this the shortfall in budget from AHS, about $500 a month. When I sell the truck, David has offered to make some of that available to me; I feel it might be a bridge too far. David has already invested a lot of his time and life in making mine better. Still, there is hope. It can happen.
I think the thing that worries me the most, the thing that will impact me the most, is the responsibility of having to pay someone that money every month, knowing that if I don't have it, I would be in serious trouble. A commitment to payroll is a big deal. Thanks to the GoFundMe, I have a couple of months in the bank. If I cut down on my food and liquor expenses, I can reduce that deficit, perhaps. Those are the only adjustment I can make. I've already almost completely eliminated dining out, going to movies, going to trivia nights. I don't have much room left. I guess that is what scares me the most. Asking for help for me is one thing. Asking for help so I can pay a live-in caregiver is something completely different.
And just so you know, the whole MAID thing is off the table for now. I have made no future appointments.
Monday, 26 March 2018
I Slept All Day So Far
I think today is a day off. I've been sleeping for pretty much all of it, after a disastrous night.
Sunday, 25 March 2018
No Tylenol Please
I'm feeling a little down today. My left shoulder is hurting me, as are the bottoms of my feet. The shoulder is muscle pain while the foot is nerve pain. I take Gabapentin for the nerve pain, but I have nothing but Tylenol for the muscle pain. The problem is that Tylenol does not play real well with all the other medications I take, so I don't like to take it. I can, but I have to watch out for kidney and liver damage.
This focus on kidney and liver damage is hitting home right now. Recently my nephew had a complete kidney and liver failure. He has been battling kidney disease for some time now. It finally came to a point of failure. He will need a transplant if he is to continue living. For now he is on dialysis daily, with a dialysis unit being set up at home.
Of course not all of these things are covered by our health care system. My brother thinks that it will take somewhere in the neighbourhood of $60,000 over the next year, if you include the time he has to take off work to care for his son. There will be lots of visits back and forth to clinics and hospital, along with lots of medications and home equipment. I know a lot about this, except my knowledge is around ALS support, not kidney support or liver disease.
I did offer my kidneys and liver, post-mortem. My brother feels that it might be better if I held on to them for a while. He is right in that regard. Post-mortem would definitely come sooner if it could help my nephew. Even if we did one kidney and a partial liver, my own life would become dramatically more precarious than it is now.
Of course we don't even know if I am a match, although I am the right blood type. Also, I would have to be two months without consuming alcohol before any sort of transplant could take place. Still, it would be worth it. In his early twenties, my nephew has a lot of road ahead of him, whereas I have most of mine behind me.
This focus on kidney and liver damage is hitting home right now. Recently my nephew had a complete kidney and liver failure. He has been battling kidney disease for some time now. It finally came to a point of failure. He will need a transplant if he is to continue living. For now he is on dialysis daily, with a dialysis unit being set up at home.
Of course not all of these things are covered by our health care system. My brother thinks that it will take somewhere in the neighbourhood of $60,000 over the next year, if you include the time he has to take off work to care for his son. There will be lots of visits back and forth to clinics and hospital, along with lots of medications and home equipment. I know a lot about this, except my knowledge is around ALS support, not kidney support or liver disease.
I did offer my kidneys and liver, post-mortem. My brother feels that it might be better if I held on to them for a while. He is right in that regard. Post-mortem would definitely come sooner if it could help my nephew. Even if we did one kidney and a partial liver, my own life would become dramatically more precarious than it is now.
Of course we don't even know if I am a match, although I am the right blood type. Also, I would have to be two months without consuming alcohol before any sort of transplant could take place. Still, it would be worth it. In his early twenties, my nephew has a lot of road ahead of him, whereas I have most of mine behind me.
Saturday, 24 March 2018
Caregiver Costs
It's nice when day can turn around completely, from the disaster of morning home care to a terrific evening with friends. That was yesterday. It started with a real run-in with my home care workers, and ended with David and Anne helping me figure out the live-in worker numbers. Along the way, David and I took the first steps in solving my transportation dilemma. David bought a wheelchair van for my use. Once we finalize the paperwork on it next week, we will immediately start the process of selling my pickup truck.
Both the live-in care worker and the transition from truck to van are pretty good indicators of how my life has changed over the last 6 months. From being able to get into the truck and drive it, albeit with a bit of help in the getting in part, down to not only being unable to drive, but unable to make the transfer from wheelchair to passenger seat. All of this is due to the dramatic loss of upper body strength.
Then there is the live-in caregiver part. I really only need about 4 or so hours per day of dedicated care. Some days it is even less than that. For example, on Monday I need an hour of personal care that includes helping me with toileting, showering, catheterization, dressing, and so on. I also need about an hour for Range of Motion Exercises. However I only do the exercises on Monday, Wednesday, and Friday. Then I occasionally need a half hour to an hour in the afternoon, dealing once again with toileting and a potential catheter adjustment, as well as a reminder to take my medications. Finally, I need about an hour of personal care once again as I go to bed in the evening.
In addition to that personal care, there are meals and such which I need help with, but which the caregiver will also be making for his or her self. I'm not sure if that should be added in or not, so in an abundance of caution, I am adding a half hour for lunch preparation and a half hour for cleaning afterwards. I am also adding an hour for major apartment cleaning every Monday. All totalled, it is about 28 hours over a 7 day week of dedicated work.
However the live-in is entitled to at least one day a week of unpaid time off. Let's say that's Monday, one of the heaviest days. I will have to hire a separate person to take over that time. The time allocation for Monday is 5 hours. This means the live-in will have dedicated work time of 23 hours over a 6 day work week, or about 4 hours per day on average. On the other hand, I will expect the live-in to share in the tidying, laundry, and other normal household chores, along with being "on call" for most afternoons. Evenings are optional.
That takes care of the working engagement and some of the living engagement. As a home, the caregiver will share this apartment with me, although he or she will have a bedroom with a TV and Roku. I am uncertain how we will work it out, but I don't have a lot of choice in the matter. I need someone around during some of the day, and all of the night. The caregiver will have to truly live here.
The Province of Alberta through the Alberta Health Care Self-Managed Care program will fund $2,987.39 for care. Their estimate is that I need 35.6 hours per week of care. The differential is in things like laundry, additional personal care, and additional incidental care. The AHS "pay rate" for this care is about $20/hour. I would like to stay close to that number, but there are expenses imputed into that pay rate, things like CPP, EI, taxes, WCB and such. So I need to set aside about 15% of that funding for employment costs, along with about $100 for accounting and tax filing costs.
In the end, it looks like I can offer $2,400 or so as pay for the live-in, and about $100/day for backfill of roughly five days a month. This does not include room and board, which I will peg at $450 a month, with room for negotiation. It means the live-in will have almost $2,000 a month clear, after he living expenses. That's a whole lot more pocket money that I have. It seems like a good deal to me.
Both the live-in care worker and the transition from truck to van are pretty good indicators of how my life has changed over the last 6 months. From being able to get into the truck and drive it, albeit with a bit of help in the getting in part, down to not only being unable to drive, but unable to make the transfer from wheelchair to passenger seat. All of this is due to the dramatic loss of upper body strength.
Then there is the live-in caregiver part. I really only need about 4 or so hours per day of dedicated care. Some days it is even less than that. For example, on Monday I need an hour of personal care that includes helping me with toileting, showering, catheterization, dressing, and so on. I also need about an hour for Range of Motion Exercises. However I only do the exercises on Monday, Wednesday, and Friday. Then I occasionally need a half hour to an hour in the afternoon, dealing once again with toileting and a potential catheter adjustment, as well as a reminder to take my medications. Finally, I need about an hour of personal care once again as I go to bed in the evening.
In addition to that personal care, there are meals and such which I need help with, but which the caregiver will also be making for his or her self. I'm not sure if that should be added in or not, so in an abundance of caution, I am adding a half hour for lunch preparation and a half hour for cleaning afterwards. I am also adding an hour for major apartment cleaning every Monday. All totalled, it is about 28 hours over a 7 day week of dedicated work.
However the live-in is entitled to at least one day a week of unpaid time off. Let's say that's Monday, one of the heaviest days. I will have to hire a separate person to take over that time. The time allocation for Monday is 5 hours. This means the live-in will have dedicated work time of 23 hours over a 6 day work week, or about 4 hours per day on average. On the other hand, I will expect the live-in to share in the tidying, laundry, and other normal household chores, along with being "on call" for most afternoons. Evenings are optional.
That takes care of the working engagement and some of the living engagement. As a home, the caregiver will share this apartment with me, although he or she will have a bedroom with a TV and Roku. I am uncertain how we will work it out, but I don't have a lot of choice in the matter. I need someone around during some of the day, and all of the night. The caregiver will have to truly live here.
The Province of Alberta through the Alberta Health Care Self-Managed Care program will fund $2,987.39 for care. Their estimate is that I need 35.6 hours per week of care. The differential is in things like laundry, additional personal care, and additional incidental care. The AHS "pay rate" for this care is about $20/hour. I would like to stay close to that number, but there are expenses imputed into that pay rate, things like CPP, EI, taxes, WCB and such. So I need to set aside about 15% of that funding for employment costs, along with about $100 for accounting and tax filing costs.
In the end, it looks like I can offer $2,400 or so as pay for the live-in, and about $100/day for backfill of roughly five days a month. This does not include room and board, which I will peg at $450 a month, with room for negotiation. It means the live-in will have almost $2,000 a month clear, after he living expenses. That's a whole lot more pocket money that I have. It seems like a good deal to me.
Friday, 23 March 2018
I Understand About Being Frightened
I want to start this post by apologizing to my kids, my ex-wife, and to all those people over the years whom I may have intimidated, and even frightened, by my physical presence and power of voice. Today I got a very clear lesson on what it is to be on the recieving end. I had a run-in with my caregiver, and she responded with rough handling and loud argument. I was afraid. I was afraid she would hurt me; she did, but not enough to complain. I was afraid she would act against me in some manner; she was more petty than anything. Nonetheless I spent my morning in fear, eventually asking her to leave early just so I could feel safe again.
The real problem arose with the care agency, CBI. Once again they screwed up my scheduling. Unfortunately this was after Edith, The Shuffler, had been told she would no longer be taking care of me on Fridays. This was in response to complaints I made about her lack of attentiveness and unwillingness to do exercises. Of course she took this as a rebuke. I don't blame her; it was.
The supervisor asked the agency to provide a new caregiver for Fridays. They did, but then immediately double booked her, effectively delaying my morning from 10:30 AM to 11:30 AM or even later. I said this was unacceptable, especially since the new caregiver would require supervision, and the supervisor was scheduled to arrive at 10:30 AM. Once again the CBI coordinators failed to coordinate. So I asked them to fix it.
They did fix it. They sent Edith.
When Edith arrived things were tentative to say the least. We both tried to avoid the elephant in the room. It seemed to be working all right until I asked her to walk through the new, clean, no-touch catheter technique. Edith has trouble with the concept of a sterile process, so there was some discussion about some of the steps and requirements. Aggressive discussion. Loud voices
After some degree of success, and some degree of failure, in the new catheterization process, Edith hung me in my sling and went to the kitchen, telling me to call if I needed help. This is not a failing, except her response time when I need help leaves something to be desired. I would get faster help calling 911. Nonetheless, when I had had enough unproductive time in the sling, she put me in my commode chair and walked away, telling me to ask if I needed help.
Of course I needed help! I had already told her I would need help in the shower, but she failed to understand that meant staying there with me. She went back to the kitchen. So I did my best on my own, unwilling to ask once again for help I was supposed to be getting in the first place. After I was showered, I did call for help. She opened the bathroom door, stood back, and watched me struggle with my commode chair to get into the bedroom. Then I had to ask her to help me towel dry.
After I was dry, she put me in the sling and on the bed, ready to dress. After putting on my condom catheter, something she always does well, she began to flip me about like I was some sort of rag doll so she could put on my catheter bag, my socks, my underwear and my jeans. There was no injury here, just pain from my rather damaged body. I felt like I was being punished.
Then I got a phone call from Yvonne, the new HCA who was originally scheduled for today, the one who was supposed to be my Friday regular. She said she would be here in 10 minutes; no supervisor, no advance warning. I suspect the non-coordinators in the CBI office had something to do with it. I asked Yvonne to call her supervisor to find out what was happening. She didn't understand; ESL problems. So I got upset and said "Never mind. Do what you are going to do."
I called the supervisor. She tried explaining things. By this time I was so upset and frustrated I just told her, with Edith in the room, that I wanted everybody gone from my apartment. No exercises please. I actually began to cry with the frustration of it all, until I managed to get ahold of myself. Edith was still in the room, knowing that "everybody" meant her too. She had to finish dressing me. It would be polite to say that the next 20 minutes were quiet, perhaps a bit chilly.
This was not a good day. I do understand more about how I must have frightened people in the past. Once again let me say how sorry I am. I get it now.
The real problem arose with the care agency, CBI. Once again they screwed up my scheduling. Unfortunately this was after Edith, The Shuffler, had been told she would no longer be taking care of me on Fridays. This was in response to complaints I made about her lack of attentiveness and unwillingness to do exercises. Of course she took this as a rebuke. I don't blame her; it was.
The supervisor asked the agency to provide a new caregiver for Fridays. They did, but then immediately double booked her, effectively delaying my morning from 10:30 AM to 11:30 AM or even later. I said this was unacceptable, especially since the new caregiver would require supervision, and the supervisor was scheduled to arrive at 10:30 AM. Once again the CBI coordinators failed to coordinate. So I asked them to fix it.
They did fix it. They sent Edith.
When Edith arrived things were tentative to say the least. We both tried to avoid the elephant in the room. It seemed to be working all right until I asked her to walk through the new, clean, no-touch catheter technique. Edith has trouble with the concept of a sterile process, so there was some discussion about some of the steps and requirements. Aggressive discussion. Loud voices
After some degree of success, and some degree of failure, in the new catheterization process, Edith hung me in my sling and went to the kitchen, telling me to call if I needed help. This is not a failing, except her response time when I need help leaves something to be desired. I would get faster help calling 911. Nonetheless, when I had had enough unproductive time in the sling, she put me in my commode chair and walked away, telling me to ask if I needed help.
Of course I needed help! I had already told her I would need help in the shower, but she failed to understand that meant staying there with me. She went back to the kitchen. So I did my best on my own, unwilling to ask once again for help I was supposed to be getting in the first place. After I was showered, I did call for help. She opened the bathroom door, stood back, and watched me struggle with my commode chair to get into the bedroom. Then I had to ask her to help me towel dry.
After I was dry, she put me in the sling and on the bed, ready to dress. After putting on my condom catheter, something she always does well, she began to flip me about like I was some sort of rag doll so she could put on my catheter bag, my socks, my underwear and my jeans. There was no injury here, just pain from my rather damaged body. I felt like I was being punished.
Then I got a phone call from Yvonne, the new HCA who was originally scheduled for today, the one who was supposed to be my Friday regular. She said she would be here in 10 minutes; no supervisor, no advance warning. I suspect the non-coordinators in the CBI office had something to do with it. I asked Yvonne to call her supervisor to find out what was happening. She didn't understand; ESL problems. So I got upset and said "Never mind. Do what you are going to do."
I called the supervisor. She tried explaining things. By this time I was so upset and frustrated I just told her, with Edith in the room, that I wanted everybody gone from my apartment. No exercises please. I actually began to cry with the frustration of it all, until I managed to get ahold of myself. Edith was still in the room, knowing that "everybody" meant her too. She had to finish dressing me. It would be polite to say that the next 20 minutes were quiet, perhaps a bit chilly.
This was not a good day. I do understand more about how I must have frightened people in the past. Once again let me say how sorry I am. I get it now.
Thursday, 22 March 2018
Not Motivated
I am tired, worn out. I have done nothing today other than chat on Facebook and watch Netflix. Oh, and I folded a towel and a shirt from the laundry I did yesterday. Yet my arms hurt. My left shoulder hurts, and now the right one is getting in the game too. My hands are getting tired when I type more than a few lines, my wrists too. I had forgotten that my wrists are part of this process; they have muscles in them, not just bone.
This weariness, if that is the right word for it, has been with me all week. I ran out of milk on Saturday. Rather than go over to Safeway, I used Bailey's in my coffee and forwent pancakes on Sunday. On Monday I asked my HCA to get it for me while I was hanging about in my sling, something this is definitely not supposed to do.
All week I have had $200 in USD and a check for $19 in my wallet, waiting for me to go to the nearest credit union to deposit. Yet all week I have demured, rather sitting in my chair, watching something on Netflix, or napping. That post-brunch nap has become a constant of about 2 or 3 hours, making my day increasingly shorter. It's also less effort, so my evenings seem better than my days.
This is kind of new; it's been sneaking up on me for a while. I am in a place where I am beginning to do almost anything to avoid expending energy, to avoid effort in any way. I just don't feel up to it. I know that there are things which will inspire me to action, things which will energize me. People come to visit, and I get upbeat. Yet beyond that incentive to interaction, I prefer to sit these days, mostly not moving.
I don't like this feeling, this inaction. I just can't seem to get past it. I am not motivated. Mostly, I am just tired.
This weariness, if that is the right word for it, has been with me all week. I ran out of milk on Saturday. Rather than go over to Safeway, I used Bailey's in my coffee and forwent pancakes on Sunday. On Monday I asked my HCA to get it for me while I was hanging about in my sling, something this is definitely not supposed to do.
All week I have had $200 in USD and a check for $19 in my wallet, waiting for me to go to the nearest credit union to deposit. Yet all week I have demured, rather sitting in my chair, watching something on Netflix, or napping. That post-brunch nap has become a constant of about 2 or 3 hours, making my day increasingly shorter. It's also less effort, so my evenings seem better than my days.
This is kind of new; it's been sneaking up on me for a while. I am in a place where I am beginning to do almost anything to avoid expending energy, to avoid effort in any way. I just don't feel up to it. I know that there are things which will inspire me to action, things which will energize me. People come to visit, and I get upbeat. Yet beyond that incentive to interaction, I prefer to sit these days, mostly not moving.
I don't like this feeling, this inaction. I just can't seem to get past it. I am not motivated. Mostly, I am just tired.
Tuesday, 20 March 2018
AHS SMC
So I had my meeting with the Alberta Health Services Self-Managed Care programme director today. We went through the various options around funding and requirements. According to her, I might be close to having enough for what I want, a live-in caregiver. In my situation very little makes sense in terms of self-managed care. I do well with the existing system, except when I find myself alone with a minor, non-emergent issue, like a dropped glass of water or some such thing. Yet I need more care.
AHS is prepared to provide me with funding possibly up to $3,000 a month, although the current level of care is only funded at about $2,700 a month. The difference has to do with the amount of care I currently use versus what I could be using. It would be in my best interest if I ran up my care needs at the moment. Of course this is precisely why the SMC director suggested she might see if she could get it all the way up to $3,000.
The way the budget breaks out is roughly $2,300 - $2,500 for a live-in. From that wage I am permitted to deduct about $140 for board and $300 for meals. I can use either of those to add incentive, for example not charging for board, but charging for meals. In addition, if I charge for meals, I can allow her to retain some of those funds so she can shop for herself, getting the kinds of foods she prefers. The balance of the funds would go to cover five to six days a month, allowing the live-in one dedicated day per week off, along with coverage for statutory holidays.
It's the whole holiday part that is the biggest problem. First of all, if I pay the holiday coverage $20/hour, and reduce my care level on that one day, I could probably get the cost down to less than $100 per day. I don't think there is a minimum number of call-out hours in the case of home care. Nonetheless, weekend and holiday coverage will likely be as much as $500 a month.
Then there are the costs associated with having an employee and doing the paperwork. There is an agency in Edmonton who will do all of this remotely for as little as $100 a month, however there are the costs associated with setting up a company to do the hiring. I am investigating the possibility of using the agency as the corporate entity. Then there are things like banking costs, CPP. EI and vacation pay. All of these must come out of the SMC funding.
No matter how I look at it, I am likely going to be cutting the edges around how much I pay, or having to come up with roughly $200 to $300 additional funding each month. As time goes by, my funding level will likely increase, which leaves me with the option of waiting for a while, until I am really in bad shape, then applying for SMC. I'm not sure I want to do that. I need help now. As with all things, it's the money. It's always the money.
AHS is prepared to provide me with funding possibly up to $3,000 a month, although the current level of care is only funded at about $2,700 a month. The difference has to do with the amount of care I currently use versus what I could be using. It would be in my best interest if I ran up my care needs at the moment. Of course this is precisely why the SMC director suggested she might see if she could get it all the way up to $3,000.
The way the budget breaks out is roughly $2,300 - $2,500 for a live-in. From that wage I am permitted to deduct about $140 for board and $300 for meals. I can use either of those to add incentive, for example not charging for board, but charging for meals. In addition, if I charge for meals, I can allow her to retain some of those funds so she can shop for herself, getting the kinds of foods she prefers. The balance of the funds would go to cover five to six days a month, allowing the live-in one dedicated day per week off, along with coverage for statutory holidays.
It's the whole holiday part that is the biggest problem. First of all, if I pay the holiday coverage $20/hour, and reduce my care level on that one day, I could probably get the cost down to less than $100 per day. I don't think there is a minimum number of call-out hours in the case of home care. Nonetheless, weekend and holiday coverage will likely be as much as $500 a month.
Then there are the costs associated with having an employee and doing the paperwork. There is an agency in Edmonton who will do all of this remotely for as little as $100 a month, however there are the costs associated with setting up a company to do the hiring. I am investigating the possibility of using the agency as the corporate entity. Then there are things like banking costs, CPP. EI and vacation pay. All of these must come out of the SMC funding.
No matter how I look at it, I am likely going to be cutting the edges around how much I pay, or having to come up with roughly $200 to $300 additional funding each month. As time goes by, my funding level will likely increase, which leaves me with the option of waiting for a while, until I am really in bad shape, then applying for SMC. I'm not sure I want to do that. I need help now. As with all things, it's the money. It's always the money.
Monday, 19 March 2018
Not Much
The last few weeks and months have seen a dramatic decline in the ability of my arms. The loss of strength has been substantial, having now reached the point where even lifting my arms is a challenge. To put this into practical perspective, three weeks ago I discovered I could no longer wash the top of my head. I won't say wash my hair; that would be hyperbole in the extreme. Two weeks ago I discovered that I could no longer wash under my armpits. Today, for example, my HCA had to hold up my arms while I tried to wash. Next week she will have to do the whole process for me. And this week I discovered I can no longer wash my face. I can't get my hands up there.
This is the phase of ALS I have dreaded the most, the loss of my arms and hands. This is where I will lose all independence, having to rely on someone else to perform the most basic of functions for me. I lost the ability to wipe my own ass quite some time ago. Now even personal hygiene is getting beyond my shattered abilities. If I am to continue living much longer, I am going to have to adjust to someone else handling pretty much everything for me, even cooking. I'll have to learn to drink wine and Scotch through a straw.
There are plenty of people living with these limitations, and more. I am not sure about their quality of life, but I suspect they have a very strong reason for living. I am not so sure about that for myself. I continually face the question about how long I want to live like this, how long I want to go on. I think about it every day now, about whether I have gone on far enough, whether I should call it a wrap.
The story of my life is coming to a slow, tormented conclusion. My last act is far too drawn out to still be engaging, either to myself or anyone else. I see very little reason for continuing to exist in this state. I am not sure what I have to live for these days. As to quality of life, well, it's going, going, going, gone. I am becoming less and less able, more and more disabled. I can do so little. So much of my doing requires the help of others. I feel like it is too much to ask. All the while the question of what next lingers before me. The best answer I can come up with is "not much".
This is the phase of ALS I have dreaded the most, the loss of my arms and hands. This is where I will lose all independence, having to rely on someone else to perform the most basic of functions for me. I lost the ability to wipe my own ass quite some time ago. Now even personal hygiene is getting beyond my shattered abilities. If I am to continue living much longer, I am going to have to adjust to someone else handling pretty much everything for me, even cooking. I'll have to learn to drink wine and Scotch through a straw.
There are plenty of people living with these limitations, and more. I am not sure about their quality of life, but I suspect they have a very strong reason for living. I am not so sure about that for myself. I continually face the question about how long I want to live like this, how long I want to go on. I think about it every day now, about whether I have gone on far enough, whether I should call it a wrap.
The story of my life is coming to a slow, tormented conclusion. My last act is far too drawn out to still be engaging, either to myself or anyone else. I see very little reason for continuing to exist in this state. I am not sure what I have to live for these days. As to quality of life, well, it's going, going, going, gone. I am becoming less and less able, more and more disabled. I can do so little. So much of my doing requires the help of others. I feel like it is too much to ask. All the while the question of what next lingers before me. The best answer I can come up with is "not much".
Sunday, 18 March 2018
The Last Ride
I went for a ride in my truck today. It was probably the last ride I will ever take in it. Over the last few weeks it has become increasingly difficult to get me into the front seat, even from my elevated wheelchair. Notwithstanding David's valiant efforts, it was decidedly difficult for him today. It seems the time has come where my truck is no longer an asset, but is, instead, a liability.
Fortunately I am in the process of getting a van to replace the truck. It will be a handicapped accessible van, all setup for wheelchair access and transport. Tomorrow David and I will discuss the available opportunities for this kind of van with the Accessible Vehicles Solutions owner here in Calgary. He says he has a few ideas he could discuss with us. I hope it works.
Still, having the van does not mean a return to mobility. I doubt that I will be able to drive it, even if it has full "Easy Access" controls. These are special, light touch, electronic controls intended for someone in a position like me, or for quadraplegics and so no. I would like to try, but even so, eventually that too would be lost to me.
What I will need, if I ever want to do another road trip in my life, is a driver, a caregiver, and the money required to get on the road again. I would love to do it, in defiance of all odds, flying in the face of all expectations.The only real question, once these minor details are resolved, is where to go. There are so many places left to explore, so many to visit once again.
Fortunately I am in the process of getting a van to replace the truck. It will be a handicapped accessible van, all setup for wheelchair access and transport. Tomorrow David and I will discuss the available opportunities for this kind of van with the Accessible Vehicles Solutions owner here in Calgary. He says he has a few ideas he could discuss with us. I hope it works.
Still, having the van does not mean a return to mobility. I doubt that I will be able to drive it, even if it has full "Easy Access" controls. These are special, light touch, electronic controls intended for someone in a position like me, or for quadraplegics and so no. I would like to try, but even so, eventually that too would be lost to me.
What I will need, if I ever want to do another road trip in my life, is a driver, a caregiver, and the money required to get on the road again. I would love to do it, in defiance of all odds, flying in the face of all expectations.The only real question, once these minor details are resolved, is where to go. There are so many places left to explore, so many to visit once again.
Saturday, 17 March 2018
Sterile Documentation
I've done very little today. In fact I did absolutely nothing from 12:30 to 3:30 PM except to nap, doze, and think. It is a dangerous thing to do, as often in these states my mind begins to dwell on the negative. I let anger about my illness and bitterness about my life outcome take over my normal, happy self. I get resentful, particularly about my ex-wife, about having spent most of my life supporting my marriage and family, only to end up alone and in this situation.
It's pointless. I am where I am. The past is the past. Today is where I have to live.
Speaking of today, this morning a Licenced Practical Nurse accompanied my Health Care Aide. Accompanied is probably not the correct way to put it. The LPN couldn't come until 11:15 AM. The HCA arrived about 10 minutes after that. So I stayed in bed for almost an extra hour today. The LPN was there to teach the HCA about proper sterile procedures for doing my in/out catheters. My doctor is convinced that my repeated infections are due to non-sterile conditions with catheterization.
This does not include the bladder infections in the years gone by. They are most likely caused by lack of sterile conditions as well, mostly with the condom catheters. However those infections happened perhaps every three months or so. While not ideal, it is better than currently, where they happen one right after the other.
The arrival of the LPN did not necessarily mean the implementation of a sterile, or at least semi-sterile procedure. The agency refuses to provide staff with sterile gloves. If I want that level of clean, I have to pay for the gloves myself. I have already contacted Alberta Health along with the Health Minister regarding this cost, but don't hold your breath. Even "free" health care has its expenses.
Nor did the LPN have a clear, step by step procedure for doing a sterile in/out catheter process. It seems her ideas of sterile differ very greatly from mine, and from the HCA's too. So after completion of a rather haphazard process, I did what I do best. I documented the procedure using best practice information from Internet research along with "in use" process where it aligned or could be adapted to approximate best practice or sterile practice. It would be fair to say I have some expertise in this kind of thing.
It's not a perfect document. There is no surety that the agency will use this document or support this process. After all, I am at their mercy. Nonetheless I am a strong advocate for myself, especially around not dying from infections. If they don't follow this process, I am going to ask both my Health Care Nurse Coordinator from AHS and the Clinical Coordinator from CBI why, or rather, why not.
And I am really, really good at this kind of documentation. They should pay me for this stuff.
It's pointless. I am where I am. The past is the past. Today is where I have to live.
Speaking of today, this morning a Licenced Practical Nurse accompanied my Health Care Aide. Accompanied is probably not the correct way to put it. The LPN couldn't come until 11:15 AM. The HCA arrived about 10 minutes after that. So I stayed in bed for almost an extra hour today. The LPN was there to teach the HCA about proper sterile procedures for doing my in/out catheters. My doctor is convinced that my repeated infections are due to non-sterile conditions with catheterization.
This does not include the bladder infections in the years gone by. They are most likely caused by lack of sterile conditions as well, mostly with the condom catheters. However those infections happened perhaps every three months or so. While not ideal, it is better than currently, where they happen one right after the other.
The arrival of the LPN did not necessarily mean the implementation of a sterile, or at least semi-sterile procedure. The agency refuses to provide staff with sterile gloves. If I want that level of clean, I have to pay for the gloves myself. I have already contacted Alberta Health along with the Health Minister regarding this cost, but don't hold your breath. Even "free" health care has its expenses.
Nor did the LPN have a clear, step by step procedure for doing a sterile in/out catheter process. It seems her ideas of sterile differ very greatly from mine, and from the HCA's too. So after completion of a rather haphazard process, I did what I do best. I documented the procedure using best practice information from Internet research along with "in use" process where it aligned or could be adapted to approximate best practice or sterile practice. It would be fair to say I have some expertise in this kind of thing.
It's not a perfect document. There is no surety that the agency will use this document or support this process. After all, I am at their mercy. Nonetheless I am a strong advocate for myself, especially around not dying from infections. If they don't follow this process, I am going to ask both my Health Care Nurse Coordinator from AHS and the Clinical Coordinator from CBI why, or rather, why not.
And I am really, really good at this kind of documentation. They should pay me for this stuff.
Friday, 16 March 2018
More HCA Training
I just got a call from the nurse supervisor for my HCA. She advised me that she would be coming at 5:00 PM to supervise the in/out catheter process. This is happening because I complained that the routine the HCA's use is not sterile, nor does it follow what is called the "no touch method" during the process.
The "no touch" method is very specific about what steps must be taken to ensure that a sterile field is maintained around the head of my penis. It safeguards against any contamination after I have been cleaned and that particular area of my body is sterile. The basic rule is that when the HCA starts this process, at not time must my penis be placed in a position of re-contamination, nor should any of the apparatus be handled in a way to cause contamination.
All this concern around contamination comes from my continuing stream of bladder infections. My doctor is certain the re-infection after we clear up a previous infection comes from lack of sterile conditions for my in/out catheter. There are similar problems with my condom catheters however they are not inserted into my body in any way, so it's not as big a deal.
So my complaint has generated a response. The nurse called about my 5:00 PM HCA visit, advising me she would be here to do range of motion training. I corrected her and said "catheter training". Unfortunately for her, my 5:00 PM visit involves no catheter changes whatsoever. Those happen first thing in the morning and last thing in the evening; when I get up, and when I go to bed. She didn't seem to be aware of this pattern. The coordinators had not told her what the 5:00 PM visit was about, so she assumed it would be that visit.
Now I am worried about the nurse knowing what she is doing. I am concerned.
The "no touch" method is very specific about what steps must be taken to ensure that a sterile field is maintained around the head of my penis. It safeguards against any contamination after I have been cleaned and that particular area of my body is sterile. The basic rule is that when the HCA starts this process, at not time must my penis be placed in a position of re-contamination, nor should any of the apparatus be handled in a way to cause contamination.
All this concern around contamination comes from my continuing stream of bladder infections. My doctor is certain the re-infection after we clear up a previous infection comes from lack of sterile conditions for my in/out catheter. There are similar problems with my condom catheters however they are not inserted into my body in any way, so it's not as big a deal.
So my complaint has generated a response. The nurse called about my 5:00 PM HCA visit, advising me she would be here to do range of motion training. I corrected her and said "catheter training". Unfortunately for her, my 5:00 PM visit involves no catheter changes whatsoever. Those happen first thing in the morning and last thing in the evening; when I get up, and when I go to bed. She didn't seem to be aware of this pattern. The coordinators had not told her what the 5:00 PM visit was about, so she assumed it would be that visit.
Now I am worried about the nurse knowing what she is doing. I am concerned.
Thursday, 15 March 2018
Panoply
It's been a rough couple of days, partly my fault, partly the fault of ALS, and partly a dental issue which is nobody's fault at all. I am writing now, reluctantly, because I know if I don't write today there will be concern amongst those following me. So here is the story, starting with my part.
On Tuesday night, Anne and Anisa came over the bottle wine. I would like to say they helped me bottle wine, but that would completely misrepresent the situation. I was banished to the living room while they did the work. At least they let me get involved in making dinner, a little bit. So, banished as I was while they worked, I had nothing to do but test the new wine and drink some of the aged wine for comparison. The new wines were a Chardonnay and a Cabernet Sauvignon. The aged wine was a Montepulciano. I'm not sure they were fair comparisons.
Anyways, we bottled wine. Then we had dinner. Then we bottled more wine. Then we cleaned up. This whole process took us well past my normal bedtime, so I decided to make a night of it. I had my HCA set my sling into the wheelchair so I could sling myself to bed. I asked Danny, who came after all the wine was bottled thus forcing himself into the position of clean-up, to put a tie-down strap across my bed so I could pull myself instead of just hanging in the air hoping for a breeze or gravity or some other non-intertial factor to drive me across the bed in my sling.
My friends left. I stayed up. Late. Very late. It's something I don't often get to do, so it was 2:00 AM before I decided to stop binging on Netflix. I wheeled into my bedroom, lifted out of my wheelchair, grabbed the strap and pulled. This is when I discovered that the pull put me at 90 degress to the bed's direction. I had no manner in which to rotate the sling. I was over the bed, trapped in the wrong direction.
When in doubt, use force. That's what my Dad always said. He wasn't often correct, but it was what he always said. So I heaved myself back to the wheelchair, wanting to use it as a twist and push object in order cross the bed while spinning into position. Unfortunately I failed to notice that my catheter night bad had slipped from it's position on my lap, hanging itself just low enough to snag the edge of the bed's sideboard. I pushed. Hard. The night bag snagged. My catheter came snapping off of my penis allowing the whole shooting match to fall to the floor.
On the other hand, the twist worked, in two ways. First, I found myself such that with a minor effort I could do the last spin and drop nicely into bed. Now remember. I am in my sling. By this time I had been working on this effort for nearly a half hour... in the sling. So I reached down and grabbed the bed sheet, that reach creating a substantial forward bend in my body, thus releasing a small but not trivial bowel movement. I set down on the bed, laid in place, and called Home Care to come and clean me up. It was now 2:29 AM.
The Night Nurse from Home Care arrived at 3:20 AM. It only took her about 30 minutes to clean my up. She was off and at the ripe hour of 4:00 AM I finally tried to sleep. Unfortunately try is all I could do. Sleep would not come. I tried turning, sleeping on my side then on my back. I tried counting; I must have counted to a hundred at least half a dozen times. Then, in one final, desparate effort, I thought I would try to turn competely over, something almost impossible for me to do. The advantage of this effort is that it would exhaust me as well and put me on my other side, relieving the pain in my left shoulder as well as the pressure on my left butt cheek.
It was 6:00 AM. To make myself ready, I grabbed the catheter night bag, lifted it across the bed, then inadvertently dropped it, where it came to rest for a moment halfway between the top of the bed and the floor, the weight of it all hanging on my catheter's condom. The condom held, however the penis band slid off, leaving the condom hanging by the thinnest threads of flesh. I was twisted on the bed, having shifted my head and shoulders to the right while my non-cooperative feet stayed on the left side.
I decided to keep going, knowing full well what would happen in the course of the activity. I forced the roll of my feet using my shoulders and arms to well past their full extent. It hurt. I groaned in pain as my body slowly toppled over to the right, enough in place so I could sleep. Then it happened again. My condom came off. I grabbed my pee jug, put it beside me, and decided to sleep, peeing into the jug if required.
Pee came. Sleep did not. At all. Finally at 7:15 AM I gave it all up, calling for CBI Home Care. They sent Samhar, my regular HCA. She arrived at 8:04 AM, tidied me up once again, and was on her way by 8:30 AM. I rolled on my side and finally felt the delicious flavour of sleep in my brain. I managed to sleep for about 90 minutes.
Samhar arrived at 10:30 AM for my normal morning routine. I was so exhausted I did not shower. She wiped me down instead. She put my in my power wheelchair where I spent most of the day napping. My only task was to put the laundry into the dryer, then take it out when it was done. However I had a 4:10 PM appointment to get a filling repaired. I napped past my deadlines, so I only managed to get the laundry into the dryer at about 3:00 PM.
I went to the dentist for what I thought was a simple filling replacement. This was at 4:10 PM on Wednesday. We began trying to freeze the maleficent tooth. It refused, and refused, and refused. The dentist ended up using over a dozen injections of freezing agent in various areas of my jaw and lower lips. Finally the tooth and jaw froze up, along with everything on the left side of my face right up to my ears and halfway up my nose. He fixed the tooth in about 45 minutes. I was sent home.
There was never so much joy within as there was when Kabira came early last night. I was into bed at 9:00 PM. I took a zopiclone, sending myself in the the deepest, most enduring sleep one can imagine. I didn't wake up until 10:30 AM today, at the arrival once again of Samhar. I also awoke to discover that my jaw was still frozen. We did our morning routine. Samhar put me in my chair. I was still exhausted, still needing rest.
Unfortunately this morning was the day when the ALS Society was coming to repair the damaged wheel on my wheelchair. The bearings on the front right caster had completely shattered on the inside of the wheel. Alan and James from the Society arrived at 11:38 AM. They worked for about 90 minutes on my chair, while, at the same time, my AHS Nurse Coordinator arrived to review some things from me arising out of our Tuesday visit. I was on the couch until all parties were done and I could get back into my PWC.
Once in, I parked in front of my window and napped until about 5:00 PM today, when I started this blog post. It's taken me 40 minutes to write this. The freezing is just now finally leaving me. I'm tired. I want to go to bed. It is my sincerest hope that my HCA for tonight arrives early, as early as right now perhaps.
On Tuesday night, Anne and Anisa came over the bottle wine. I would like to say they helped me bottle wine, but that would completely misrepresent the situation. I was banished to the living room while they did the work. At least they let me get involved in making dinner, a little bit. So, banished as I was while they worked, I had nothing to do but test the new wine and drink some of the aged wine for comparison. The new wines were a Chardonnay and a Cabernet Sauvignon. The aged wine was a Montepulciano. I'm not sure they were fair comparisons.
Anyways, we bottled wine. Then we had dinner. Then we bottled more wine. Then we cleaned up. This whole process took us well past my normal bedtime, so I decided to make a night of it. I had my HCA set my sling into the wheelchair so I could sling myself to bed. I asked Danny, who came after all the wine was bottled thus forcing himself into the position of clean-up, to put a tie-down strap across my bed so I could pull myself instead of just hanging in the air hoping for a breeze or gravity or some other non-intertial factor to drive me across the bed in my sling.
My friends left. I stayed up. Late. Very late. It's something I don't often get to do, so it was 2:00 AM before I decided to stop binging on Netflix. I wheeled into my bedroom, lifted out of my wheelchair, grabbed the strap and pulled. This is when I discovered that the pull put me at 90 degress to the bed's direction. I had no manner in which to rotate the sling. I was over the bed, trapped in the wrong direction.
When in doubt, use force. That's what my Dad always said. He wasn't often correct, but it was what he always said. So I heaved myself back to the wheelchair, wanting to use it as a twist and push object in order cross the bed while spinning into position. Unfortunately I failed to notice that my catheter night bad had slipped from it's position on my lap, hanging itself just low enough to snag the edge of the bed's sideboard. I pushed. Hard. The night bag snagged. My catheter came snapping off of my penis allowing the whole shooting match to fall to the floor.
On the other hand, the twist worked, in two ways. First, I found myself such that with a minor effort I could do the last spin and drop nicely into bed. Now remember. I am in my sling. By this time I had been working on this effort for nearly a half hour... in the sling. So I reached down and grabbed the bed sheet, that reach creating a substantial forward bend in my body, thus releasing a small but not trivial bowel movement. I set down on the bed, laid in place, and called Home Care to come and clean me up. It was now 2:29 AM.
The Night Nurse from Home Care arrived at 3:20 AM. It only took her about 30 minutes to clean my up. She was off and at the ripe hour of 4:00 AM I finally tried to sleep. Unfortunately try is all I could do. Sleep would not come. I tried turning, sleeping on my side then on my back. I tried counting; I must have counted to a hundred at least half a dozen times. Then, in one final, desparate effort, I thought I would try to turn competely over, something almost impossible for me to do. The advantage of this effort is that it would exhaust me as well and put me on my other side, relieving the pain in my left shoulder as well as the pressure on my left butt cheek.
It was 6:00 AM. To make myself ready, I grabbed the catheter night bag, lifted it across the bed, then inadvertently dropped it, where it came to rest for a moment halfway between the top of the bed and the floor, the weight of it all hanging on my catheter's condom. The condom held, however the penis band slid off, leaving the condom hanging by the thinnest threads of flesh. I was twisted on the bed, having shifted my head and shoulders to the right while my non-cooperative feet stayed on the left side.
I decided to keep going, knowing full well what would happen in the course of the activity. I forced the roll of my feet using my shoulders and arms to well past their full extent. It hurt. I groaned in pain as my body slowly toppled over to the right, enough in place so I could sleep. Then it happened again. My condom came off. I grabbed my pee jug, put it beside me, and decided to sleep, peeing into the jug if required.
Pee came. Sleep did not. At all. Finally at 7:15 AM I gave it all up, calling for CBI Home Care. They sent Samhar, my regular HCA. She arrived at 8:04 AM, tidied me up once again, and was on her way by 8:30 AM. I rolled on my side and finally felt the delicious flavour of sleep in my brain. I managed to sleep for about 90 minutes.
Samhar arrived at 10:30 AM for my normal morning routine. I was so exhausted I did not shower. She wiped me down instead. She put my in my power wheelchair where I spent most of the day napping. My only task was to put the laundry into the dryer, then take it out when it was done. However I had a 4:10 PM appointment to get a filling repaired. I napped past my deadlines, so I only managed to get the laundry into the dryer at about 3:00 PM.
I went to the dentist for what I thought was a simple filling replacement. This was at 4:10 PM on Wednesday. We began trying to freeze the maleficent tooth. It refused, and refused, and refused. The dentist ended up using over a dozen injections of freezing agent in various areas of my jaw and lower lips. Finally the tooth and jaw froze up, along with everything on the left side of my face right up to my ears and halfway up my nose. He fixed the tooth in about 45 minutes. I was sent home.
There was never so much joy within as there was when Kabira came early last night. I was into bed at 9:00 PM. I took a zopiclone, sending myself in the the deepest, most enduring sleep one can imagine. I didn't wake up until 10:30 AM today, at the arrival once again of Samhar. I also awoke to discover that my jaw was still frozen. We did our morning routine. Samhar put me in my chair. I was still exhausted, still needing rest.
Unfortunately this morning was the day when the ALS Society was coming to repair the damaged wheel on my wheelchair. The bearings on the front right caster had completely shattered on the inside of the wheel. Alan and James from the Society arrived at 11:38 AM. They worked for about 90 minutes on my chair, while, at the same time, my AHS Nurse Coordinator arrived to review some things from me arising out of our Tuesday visit. I was on the couch until all parties were done and I could get back into my PWC.
Once in, I parked in front of my window and napped until about 5:00 PM today, when I started this blog post. It's taken me 40 minutes to write this. The freezing is just now finally leaving me. I'm tired. I want to go to bed. It is my sincerest hope that my HCA for tonight arrives early, as early as right now perhaps.
Tuesday, 13 March 2018
Cushion Adjustment
Pain. Butt pain. It's not like I am the Princess and the Pea. It's just that there are so many things which impact my comfort, and more importantly, the level of pain I experience on a daily basis. Never mind the neuralgia. Never mind the pulled muscles. Plain old butt pain from sitting in a wheelchair all day is probably the worst.
Yesterday the ALS Society delivered a new cushion for my PWC. It's slightly larger than the old one, allowing for the larger seat on the chair. Yes, my ass is getting bigger. There are no exercises you can do in a chair, or on the bed, which will reduce butt size on a near quadraplegic. So this new cushion is intended to provide more support to a larger me.
The problem is that the cushion was delivered fully inflated. This is significant, as even a posterior well padded does not respond well to a cushion well inflated. The cushion is resistant to self-adjustment, something it is designed to do, when it is fully inflated. There is just too much air in there for things to slip and slide from valve to valve. Each bubble is full already.
What needs to happen now is I need a cushion expert, or more correctly as seating specialist, to come and help me adjust this cushion. There is actually quite a lot of skill involved. You have to measure the pressure in four distinct points while I am seated on the chair. It means sliding your hand under my butt, palm down, to determine the level of resistance between me, the chair, and the cushion. If you can move your fingers down, touching the chair surface, without much resistance, the cushion is low. If you can't move your fingers down, the cushion is too full.
It is not as simple as it sounds. There is a fair degree of subjective judgement in how far down you should be able to push, somewhere between 1/4" and 1/2", as well as judging when it is too hard to push down. You might think that would be easy, but it's not. Last time I got my cushion adjusted, the specialist took almost 20 minutes to get it right.
This is part of the reason I hate change. It takes a lot to get some of this stuff just right. Now we've had to change my chair cushion, which triggers all kinds of additional change. It takes time. It takes people with skills. It's tiring, both waiting for people and waiting while they work.
Yesterday the ALS Society delivered a new cushion for my PWC. It's slightly larger than the old one, allowing for the larger seat on the chair. Yes, my ass is getting bigger. There are no exercises you can do in a chair, or on the bed, which will reduce butt size on a near quadraplegic. So this new cushion is intended to provide more support to a larger me.
The problem is that the cushion was delivered fully inflated. This is significant, as even a posterior well padded does not respond well to a cushion well inflated. The cushion is resistant to self-adjustment, something it is designed to do, when it is fully inflated. There is just too much air in there for things to slip and slide from valve to valve. Each bubble is full already.
What needs to happen now is I need a cushion expert, or more correctly as seating specialist, to come and help me adjust this cushion. There is actually quite a lot of skill involved. You have to measure the pressure in four distinct points while I am seated on the chair. It means sliding your hand under my butt, palm down, to determine the level of resistance between me, the chair, and the cushion. If you can move your fingers down, touching the chair surface, without much resistance, the cushion is low. If you can't move your fingers down, the cushion is too full.
It is not as simple as it sounds. There is a fair degree of subjective judgement in how far down you should be able to push, somewhere between 1/4" and 1/2", as well as judging when it is too hard to push down. You might think that would be easy, but it's not. Last time I got my cushion adjusted, the specialist took almost 20 minutes to get it right.
This is part of the reason I hate change. It takes a lot to get some of this stuff just right. Now we've had to change my chair cushion, which triggers all kinds of additional change. It takes time. It takes people with skills. It's tiring, both waiting for people and waiting while they work.
Monday, 12 March 2018
Fingernails
How do you cut, or trim, your fingernails?
There are only two or three ways to answer that question. You can cut them with nail scissors. You can use some sort of special nail trimming tool. Or you can cut them with nail clippers. Me? I prefer the clippers, especially over the last few years as I have slowly been losing fine motor control and strength in my hands and arms. Then, beyond the tool you use, there is one way, and only one way, to cut your own finger nails. That is using the left hand to cut the right, and the right hand to cut the left.
Unfortunately that slow degradation of ability in my left hand has become a true problem for trimming my nails. My right hand is up to the task. I grip the clippers between my thumb and the side of my index finger, position the business end on the target, and clip away. On the other hand, quite literally, it is not quite as easy. I grip the clippers in the same manner, between my thumb and index finger, position the business end on the target, but do not have sufficient strength to overcome the resistance presented by the nail itself. I can easily operate the clippers until such point as I actually want to clip something. Then it all comes to a grinding, back-pressured halt.
Instead, to clip my right fingers with my left hand, I am compelled to place the clippers between the ball of my hand, at the base of my thumb, then put the other part across three or four of the fingers, those fingers providing the leverage for clippage. It's not as accurate a method as the designed method, the one with the thumb and index finger. That means I inevitably have jagged little bits here or there which I may or may not be able to file off, depending on the cooperation of my hands, along with my now failing hand-eye coordination.
It will come time, soon, when I will have to ask Home Care about trimming my nails. I'm not sure if it will be part of my Care Plan. I know that Foot Care is considered outside of the HCA realm, meaning they are not permitted to even trim my toenails. I suspect that hand care, or more correctly, fingernail care will likely not be covered either. That will mean paying extra, or just letting my nails get sufficient long such that someone gets sufficiently disgusted and trims them for me. I'll let you all know how this works out.
There are only two or three ways to answer that question. You can cut them with nail scissors. You can use some sort of special nail trimming tool. Or you can cut them with nail clippers. Me? I prefer the clippers, especially over the last few years as I have slowly been losing fine motor control and strength in my hands and arms. Then, beyond the tool you use, there is one way, and only one way, to cut your own finger nails. That is using the left hand to cut the right, and the right hand to cut the left.
Unfortunately that slow degradation of ability in my left hand has become a true problem for trimming my nails. My right hand is up to the task. I grip the clippers between my thumb and the side of my index finger, position the business end on the target, and clip away. On the other hand, quite literally, it is not quite as easy. I grip the clippers in the same manner, between my thumb and index finger, position the business end on the target, but do not have sufficient strength to overcome the resistance presented by the nail itself. I can easily operate the clippers until such point as I actually want to clip something. Then it all comes to a grinding, back-pressured halt.
Instead, to clip my right fingers with my left hand, I am compelled to place the clippers between the ball of my hand, at the base of my thumb, then put the other part across three or four of the fingers, those fingers providing the leverage for clippage. It's not as accurate a method as the designed method, the one with the thumb and index finger. That means I inevitably have jagged little bits here or there which I may or may not be able to file off, depending on the cooperation of my hands, along with my now failing hand-eye coordination.
It will come time, soon, when I will have to ask Home Care about trimming my nails. I'm not sure if it will be part of my Care Plan. I know that Foot Care is considered outside of the HCA realm, meaning they are not permitted to even trim my toenails. I suspect that hand care, or more correctly, fingernail care will likely not be covered either. That will mean paying extra, or just letting my nails get sufficient long such that someone gets sufficiently disgusted and trims them for me. I'll let you all know how this works out.
Sunday, 11 March 2018
The HCA Dance
There are HCA's who work with me who always seem to be in a rush, going through the motions as quickly as possible, sometimes so quickly that they forget things. Now I understand that things can be forgotten, especially when there are so many little things day to day. Yesterday, for example, my HCA forgot to put on my shoes, even though I had asked. She wasn't rushing. It was just one of those things. On the other hand, for some of them the hurry is a constant. Asking them do to something different, something new, is almost guaranteed to draw a scowl.
I've had an idea for quite some time as to why some are hurried where others are not. So today I asked my morning HCA about how her work was structured and how she got paid for it. The conversation was enlightening.
First of all, the HCA's are often given multiple clients with either the same time or within a narrow block of time. The "coordinators" then leave it to the HCA's to negotiate their schedule. That's why one of my Saturday HCA's asked if she could be here at 10:00 AM instead of 10:30 AM. She has two clients in the same time window. By adjusting me forward a bit, and the other client back a bit, she can care effectively for both of us. However some of the HCA's seem unable to do this negotiation well, ending up with crowded schedules where they have to hurry through to see everybody.
I try to be flexible with these needs. I recognize that others have care needs and waiting is frustrating for all of us. I am reasonable. In most cases if they HCA needs a half hour here or there, I don't make a fuss. If it gets to be an hour, then I start to assert myself. It sets a boundary, and it makes life more manageable for them.
The second factor is how they are paid. If the HCA is given an hour to work with me, but finishes in 30 minutes, the HCA is paid for the full hour regardless. So if an HCA can cram two people into a slot designed for one, or even close to that, the HCA gets paid more, as much as twice the normal hourly rate. Getting done with me in a hurry when there is another client waiting means they make more money.
In this area I am not terribly flexible. Cheating my time to make more money doesn't seem right to me, especially when the rush produces errors in care. I have enough issues with my health. I don't need to let that profit motive make things worse for me. I understand their point of view; their hourly rate is really low, barely above minimum wage. So by cramming they can make a better income. I need them to understand my point of view, that rushing my care insults my humanity and can end up in disaster.
I've had an idea for quite some time as to why some are hurried where others are not. So today I asked my morning HCA about how her work was structured and how she got paid for it. The conversation was enlightening.
First of all, the HCA's are often given multiple clients with either the same time or within a narrow block of time. The "coordinators" then leave it to the HCA's to negotiate their schedule. That's why one of my Saturday HCA's asked if she could be here at 10:00 AM instead of 10:30 AM. She has two clients in the same time window. By adjusting me forward a bit, and the other client back a bit, she can care effectively for both of us. However some of the HCA's seem unable to do this negotiation well, ending up with crowded schedules where they have to hurry through to see everybody.
I try to be flexible with these needs. I recognize that others have care needs and waiting is frustrating for all of us. I am reasonable. In most cases if they HCA needs a half hour here or there, I don't make a fuss. If it gets to be an hour, then I start to assert myself. It sets a boundary, and it makes life more manageable for them.
The second factor is how they are paid. If the HCA is given an hour to work with me, but finishes in 30 minutes, the HCA is paid for the full hour regardless. So if an HCA can cram two people into a slot designed for one, or even close to that, the HCA gets paid more, as much as twice the normal hourly rate. Getting done with me in a hurry when there is another client waiting means they make more money.
In this area I am not terribly flexible. Cheating my time to make more money doesn't seem right to me, especially when the rush produces errors in care. I have enough issues with my health. I don't need to let that profit motive make things worse for me. I understand their point of view; their hourly rate is really low, barely above minimum wage. So by cramming they can make a better income. I need them to understand my point of view, that rushing my care insults my humanity and can end up in disaster.
Saturday, 10 March 2018
No Concessions, No Stopping
Through a rousing night of beer and movies, I have arisen, seemingly untouched by my malfeasance, except perhaps a bit of rumbling in the depths of my body. I have awoken, renewed once again to face the coming days, weeks, possibly even months, with all that my spirit and body can derive from within. Even though I should, and most certainly will, fail, now, over time, tomorrow, I will not surrender all in my life which I have forged out of the darkness. I shall move, forward, as I can, or in my mind, as I must, never ceasing to enjoy, to love, to laugh, to live. Beer, wine, and all.
It is at the core of all which I believe, that life prevails, no matter what the circumstance. I am, like the Masai of South Kenya and Tanzania, firmly convicted that we make this journey but once, that we walk in light until our evening falls, never to pass this way again. It is incumbent, therefore, that I, that we, that all of us, whether together or alone, should make this journey with the full knowledge of its ultimate end, and in so doing, perforce find, every step of the way, the wonder and joy that is there for us. I choose life, for as long as I can, as much as I can.
I will make no concession, to this illness, to those who would have me live less of a life, to those who would cast me as profligate, irresponsible, failed. To all those who would say that I must give in, I will not listen. To all those who would say I cannot continue like this, I will not listen. I will instead listen to my heart, my spirit, doing that which it tells me to do until the day comes when I can do it no longer. I will fight for my life, fight until I lay choking in the dust of my own steps, reaching out with failed fingers to grasp that next piece of beauty in which I walk.
To those who make this walk with me, I can offer nothing except my ever increasing gratitude. As my path becomes increasingly difficult, it is you who clear the way so I may take that next step, find that next adventure, seize that next moment. To those who help in whatever way they can, there is so little I can offer in return except to share the wonder and joy of this passage, this journey which, but for you, would be lonely and dark. You are the light that shines for me, enabling me, encouraging me to live, and be alive within that life.
There is nothing else, nothing as good, nothing as lovely, as life.
It is at the core of all which I believe, that life prevails, no matter what the circumstance. I am, like the Masai of South Kenya and Tanzania, firmly convicted that we make this journey but once, that we walk in light until our evening falls, never to pass this way again. It is incumbent, therefore, that I, that we, that all of us, whether together or alone, should make this journey with the full knowledge of its ultimate end, and in so doing, perforce find, every step of the way, the wonder and joy that is there for us. I choose life, for as long as I can, as much as I can.
I will make no concession, to this illness, to those who would have me live less of a life, to those who would cast me as profligate, irresponsible, failed. To all those who would say that I must give in, I will not listen. To all those who would say I cannot continue like this, I will not listen. I will instead listen to my heart, my spirit, doing that which it tells me to do until the day comes when I can do it no longer. I will fight for my life, fight until I lay choking in the dust of my own steps, reaching out with failed fingers to grasp that next piece of beauty in which I walk.
To those who make this walk with me, I can offer nothing except my ever increasing gratitude. As my path becomes increasingly difficult, it is you who clear the way so I may take that next step, find that next adventure, seize that next moment. To those who help in whatever way they can, there is so little I can offer in return except to share the wonder and joy of this passage, this journey which, but for you, would be lonely and dark. You are the light that shines for me, enabling me, encouraging me to live, and be alive within that life.
There is nothing else, nothing as good, nothing as lovely, as life.
Friday, 9 March 2018
A New FRS
I decided to do a new ALS Functional Rating Score. I scored a 22, where 40 is normal and zero is, well, zero. This score does not really represent a clear picture of what is happening to me until you see it in a longitudinal graph, or until you look at the segmentation over my whole body. It is then that a clearer picture of what my decline looks like.
I haven't done one of these in a long time. A slow decline allows me the luxury of ignoring this kind of score. I know how things are changing. I know where I am losing strength. I don't really need the FRS Score to determine anything. On the other hand, it does help me put my decline in perspective. It also helps me frame some of the coming decisions in my life.
First of all, that score of 22 is down from a 28 about 14 months ago. Losing 6 months in just over a year does ramp up my progression rate, yet I am still in the 90th percentile of ALS progression rates. It also reflects the reality of last year, with the significant, continuing loss of strength in my arms. My head and torso remain marginally impacted, unless you consider the near total loss of my lower core muscles. What that torso really reflects is the strength remaining in my breathing. I haven't done a breathing score lately, but I can tell my diaphragm strength is diminishing, ever so slowly.
The other thing this score shows is that from diagnosis, at about a 38, I have lost more than a third of my bodily strength, all in my legs and arms. I am almost halfway gone, yet I still have marginal strength in my arms, and plenty of strength in my head. It also paints an ugly picture of where I am going next. I will steadily move towards being a head, with a barely functional lump of a body beneath it. No hands, no arms, no legs, limited breathing, yet fully capable of expressing how it feels to die this way.
Maybe I should ignore my FRS Score for a while longer. There really is no good outcome from this.
I haven't done one of these in a long time. A slow decline allows me the luxury of ignoring this kind of score. I know how things are changing. I know where I am losing strength. I don't really need the FRS Score to determine anything. On the other hand, it does help me put my decline in perspective. It also helps me frame some of the coming decisions in my life.
First of all, that score of 22 is down from a 28 about 14 months ago. Losing 6 months in just over a year does ramp up my progression rate, yet I am still in the 90th percentile of ALS progression rates. It also reflects the reality of last year, with the significant, continuing loss of strength in my arms. My head and torso remain marginally impacted, unless you consider the near total loss of my lower core muscles. What that torso really reflects is the strength remaining in my breathing. I haven't done a breathing score lately, but I can tell my diaphragm strength is diminishing, ever so slowly.
The other thing this score shows is that from diagnosis, at about a 38, I have lost more than a third of my bodily strength, all in my legs and arms. I am almost halfway gone, yet I still have marginal strength in my arms, and plenty of strength in my head. It also paints an ugly picture of where I am going next. I will steadily move towards being a head, with a barely functional lump of a body beneath it. No hands, no arms, no legs, limited breathing, yet fully capable of expressing how it feels to die this way.
Maybe I should ignore my FRS Score for a while longer. There really is no good outcome from this.
Thursday, 8 March 2018
Not Strong Enough
I'm not strong enough. It's become the watchword phrase of my existence these days. Roll over in bed? I'm not strong enough. Wash my head in the shower? I'm not strong enough. Pass the potatoes? I'm not strong enough. Fold the laundry? I'm not strong enough. There once was a time when very little caused me to say that phrase. Now, it's a constant.
There was a time when I was strong enough, even after my legs had failed me. Pick up a grandchild? No problem. Move a box of wine? No problem. Sit up in bed? No problem. Yet all of these and so much more are lost to me now. If I think of life before ALS, it never crossed my mind that there would be a day when even the simplest of things requiring the most basic of strength would be far too much for me.
I think that's one of the toughest things for my children to deal with, that I am not the big, strong Dad they once had. I know it is for me. To concieve of me as weak and failing is something totally foreign to them. It must be even more difficult with me out of sight, here in Calgary. As they say; out of sight, out of mind. Who the hell are "they" anyways?
I get used to it, although with each passing day, with each failing event, it gets increasingly difficult to live like this. Imagine going to bed at night and staying where you are put by someone else. It's not quite that bad, as I can roll onto my side a bit, with the help of the M-rail, but only to one side, which ever is closest to the rail. The long roll to the other side of the bed qualifies as turning over. I'm not strong enough.
Still, my mind is strong. My spirit is taking a beating these days, yet it seems to stand up against the onslaught of ALS. My humour, though darker than ever, remains relatively intact. I can still type. I can still feed myself, mostly. I can still watch TV, roll around in my chair, shop for groceries. Well, mostly. Even some of these things are problematic at times. Yet there is some strength left in me. For some things, I am still strong enough.
There was a time when I was strong enough, even after my legs had failed me. Pick up a grandchild? No problem. Move a box of wine? No problem. Sit up in bed? No problem. Yet all of these and so much more are lost to me now. If I think of life before ALS, it never crossed my mind that there would be a day when even the simplest of things requiring the most basic of strength would be far too much for me.
I think that's one of the toughest things for my children to deal with, that I am not the big, strong Dad they once had. I know it is for me. To concieve of me as weak and failing is something totally foreign to them. It must be even more difficult with me out of sight, here in Calgary. As they say; out of sight, out of mind. Who the hell are "they" anyways?
I get used to it, although with each passing day, with each failing event, it gets increasingly difficult to live like this. Imagine going to bed at night and staying where you are put by someone else. It's not quite that bad, as I can roll onto my side a bit, with the help of the M-rail, but only to one side, which ever is closest to the rail. The long roll to the other side of the bed qualifies as turning over. I'm not strong enough.
Still, my mind is strong. My spirit is taking a beating these days, yet it seems to stand up against the onslaught of ALS. My humour, though darker than ever, remains relatively intact. I can still type. I can still feed myself, mostly. I can still watch TV, roll around in my chair, shop for groceries. Well, mostly. Even some of these things are problematic at times. Yet there is some strength left in me. For some things, I am still strong enough.
Wednesday, 7 March 2018
Grist
I want to go somewhere, somewhere away from here, somewhere I can sit on a beach, somewhere people bring me nice drinks with paper umbrellas. I surely don't need a vacation; I don't go to work at all. I surely don't need a break; my life is easy, undemanding. Yet still, I want to go somewhere.
Perhaps the real problem for me is boredom, combined with the many, ever increasing limitations in my life. I have trouble opening the doors in my apartment building. They are not designed for a near quadraplegic. I have trouble washing my head and under arms in the shower; my HCA's have to help me with it these days. I'm getting increasingly upset with how these losses are impacting me. Today I couldn't put my toothbrush away; the cup was on the shelf, too high. I ended up pulling the cup down, putting my toothbrush into it, then sliding the cup back up on the shelf where it tipped upright thanks to gravity.
I'm tired of being here, in this space, physically and psycholgically. Unfortunately I neither have the funds nor the health care aide to simply jump up and go. Furthermore, my AHS Nurse Coordinator has been off with a serious illness for the last few weeks. That leaves me with only a temporary nurse providing coverage, offering no real advocacy. It means my self-managed care application is kind of in limbo, awaiting the return of my coordinator.
There is the possibility that I am getting increasingly frustrated by how much my life patterns are in the hands of other people. It turns out that a 9:30 PM bedtime visit is considered on time anywhere from 9:00 PM to 10:00 PM. So if I am watching a show, like I was last night, enjoying a glass of wine, like I was last night, it all comes to a grinding halt well before planned because the HCA wants to slap me into bed and get home as fast as possible. I can't blame the HCA. The provider, CBI, says these are Alberta Health Services guidelines. The only person who can help me with this is my AHS Nurse Coordinator, the one off sick.
I'm feeling helpless, inadequate, angry. I feel like I am fighting the system all the time, for every little thing I need. I certainly gain victories over some of the issues; I also suffer a lot of setbacks. While people may care, the system does not. There are rules, regulations, guidelines, expectations, all set to keep the system functioning properly. I understand the need. I just dislike being grist for the mill.
Tuesday, 6 March 2018
Potpourri
Porpourri: a mixture of things.
My thoughts are often not straight in a row. In fact most time they are a random flow of conciousness which takes a fair degree of discipline and orderliness to arrange into something which resembles effective prose. Most times my mind leaps about, grasping one thought after another, kind of like Tarzan swinging through the jungle, only in my case someone greased the vine. I often fall off topic.
Things I can still fold: most of my shirts, small towels, face clothes, pillow cases, underwear, socks.
Things I can no longer fold: dress shirts - I can neither fold nor hang them, sheets regardless of size, jeans, pants in general, large towels, table clothes, soaker pads for my bed, quitls and blankets.
Things I can still open: milk cartons mostly, juice boxes mostly, wine when I use a corkscrew, a bottle of Scotch as long as it has a cork in it, Kraft Dinner boxes, most cans if I use my electric can opener, most other processed food boxes, a bag of Prunes as long as I use scissors.
Things I can no longer open: any plastic container with a tear away tab, liquor bottles with twist off tops, anything else with a twist off top, those resealable containers with the zipper type seals, cans with pull off lids.
I spent most of today sitting in the sun streaming through my front window, napping on and off, playing with my phone. This is becoming my day more and more, as I am able to do less and less. I was going to go to the movies, to see Black Panther, but I decided not to. It was too much effort. Instead, Tonny and David came by for dinner; steak and potato salad. Easy to make, fun to eat. I did get over to Safeway. I needed milk, but I bought a bunch of other stuff too, including profiteroles and mini eclairs. I can eat whatever I want.
If you want a real good anatomy lesson, think about this. These days when I can't produce a bowel movement in my commode chair, we put me in the sling to make things happen. Recently we moved my dresser from beside my bed to the end of my bed, replacing it with a night table which is lower and easier for me to reach. The unintended consequence is that the mirror on my dresser gives me a full view of that lower portion of my anatomy as I sit there in the sling. I now have a thorough understanding of the parts involved and the actions which take place down there when I do finally produce a bowel movement.
How was your day?
My thoughts are often not straight in a row. In fact most time they are a random flow of conciousness which takes a fair degree of discipline and orderliness to arrange into something which resembles effective prose. Most times my mind leaps about, grasping one thought after another, kind of like Tarzan swinging through the jungle, only in my case someone greased the vine. I often fall off topic.
Things I can still fold: most of my shirts, small towels, face clothes, pillow cases, underwear, socks.
Things I can no longer fold: dress shirts - I can neither fold nor hang them, sheets regardless of size, jeans, pants in general, large towels, table clothes, soaker pads for my bed, quitls and blankets.
Things I can still open: milk cartons mostly, juice boxes mostly, wine when I use a corkscrew, a bottle of Scotch as long as it has a cork in it, Kraft Dinner boxes, most cans if I use my electric can opener, most other processed food boxes, a bag of Prunes as long as I use scissors.
Things I can no longer open: any plastic container with a tear away tab, liquor bottles with twist off tops, anything else with a twist off top, those resealable containers with the zipper type seals, cans with pull off lids.
I spent most of today sitting in the sun streaming through my front window, napping on and off, playing with my phone. This is becoming my day more and more, as I am able to do less and less. I was going to go to the movies, to see Black Panther, but I decided not to. It was too much effort. Instead, Tonny and David came by for dinner; steak and potato salad. Easy to make, fun to eat. I did get over to Safeway. I needed milk, but I bought a bunch of other stuff too, including profiteroles and mini eclairs. I can eat whatever I want.
If you want a real good anatomy lesson, think about this. These days when I can't produce a bowel movement in my commode chair, we put me in the sling to make things happen. Recently we moved my dresser from beside my bed to the end of my bed, replacing it with a night table which is lower and easier for me to reach. The unintended consequence is that the mirror on my dresser gives me a full view of that lower portion of my anatomy as I sit there in the sling. I now have a thorough understanding of the parts involved and the actions which take place down there when I do finally produce a bowel movement.
How was your day?
Monday, 5 March 2018
From Truck To Van, Fearfully
Many of you will already know this, some not, so I am taking this opportunity to share with you the GoFundMe campaign which my friend David has started to assist me in getting a wheelchair van. I struggle with this, the constant need to ask for help with so many things in my life. Some of my pleas are active, some are passive, but any time I ask for help I feel diminished. In part that is why David is doing this for me, instead of my doing it for myself. It's is a bit of emotional sleight of hand, where I can convince myself that its not really me asking.
This particular need in my never-ending emotionally and financially sucking wound of needs is really about getting me out of my apartment more. Like a fool, I had this ridiculous belief that all and sundry would be more than willing to heft me into my truck, load my wheelchair into the back, and take me somewhere, anywhere, on an ongoing basis. Of course that was just wishful thinking. My truck is large, intimidating. I am large, also intimidating when it comes to transferring me in and out of the truck. So far David has been the only one willing to take on this burden.
When I bought that truck, it was the one I had wanted my whole life. It's big, big enough to pack full of gear for hunting, fishing, camping, whatever I wanted. It's powerful, strong enough to pull a travel trailer for getting out into the bush, strong enough to haul a flatbed with a quad and camping gear, strong enough to haul all of that plus a large moose out of the woods, strong enough to haul my sailboat on a trailer from here to the Gulf of Mexico. It's a four wheel drive, capable of handling the most difficult of back woods roads.
Unfortunately, thanks to ALS, I've never gotten to use it as I wished. On the other hand, it is a great truck for road tripping, with lots of room in the back for wheelchair, commode chair, ramp, hoyer lift, luggage, medical supplies. I've done lots of road tripping with it. Alas, I can do no more, or very little more. Getting me in and out, along with getting my wheelchair in and out, has become a substantial barrier.
So it will be sold, likely over the next few weeks. The problem is that a wheelchair van with similar mileage and appropriate configuration will cost more that $10,000 additional to what I will get from selling the truck. My biggest fear is that I will sell the truck and end up getting nothing at all, simply because of cost. David assures me this won't happen, but the fear remains.
I wonder what will happen if I get a van? Will more people take me places, since it will be easier to get me in and out? If I actually really get a live-in caregiver, will he or she be able to drive it? If it's rigged up for assisted hand controls, might I even be able to drive once again? I love my truck. Will I feel that same kind of satisfaction from a wheelchair van?
I don't know any of this, and that fear is causing a kind of stasis. I am afraid to sell the truck for fear of not getting something else. I am afraid to sell the truck because, well, it's the truck I always wanted. I'm afraid of change, particularly if it brings no improvement to my life. I don't know how long I am going to live. I am certain I will want to live longer if I regain this kind of mobility. I also know that I will still continue to be dependent on others to drive me. If I do nothing, nothing bad will happen. If I do something, well, I don't know what will happen. I'm afraid.
This particular need in my never-ending emotionally and financially sucking wound of needs is really about getting me out of my apartment more. Like a fool, I had this ridiculous belief that all and sundry would be more than willing to heft me into my truck, load my wheelchair into the back, and take me somewhere, anywhere, on an ongoing basis. Of course that was just wishful thinking. My truck is large, intimidating. I am large, also intimidating when it comes to transferring me in and out of the truck. So far David has been the only one willing to take on this burden.
When I bought that truck, it was the one I had wanted my whole life. It's big, big enough to pack full of gear for hunting, fishing, camping, whatever I wanted. It's powerful, strong enough to pull a travel trailer for getting out into the bush, strong enough to haul a flatbed with a quad and camping gear, strong enough to haul all of that plus a large moose out of the woods, strong enough to haul my sailboat on a trailer from here to the Gulf of Mexico. It's a four wheel drive, capable of handling the most difficult of back woods roads.
Unfortunately, thanks to ALS, I've never gotten to use it as I wished. On the other hand, it is a great truck for road tripping, with lots of room in the back for wheelchair, commode chair, ramp, hoyer lift, luggage, medical supplies. I've done lots of road tripping with it. Alas, I can do no more, or very little more. Getting me in and out, along with getting my wheelchair in and out, has become a substantial barrier.
So it will be sold, likely over the next few weeks. The problem is that a wheelchair van with similar mileage and appropriate configuration will cost more that $10,000 additional to what I will get from selling the truck. My biggest fear is that I will sell the truck and end up getting nothing at all, simply because of cost. David assures me this won't happen, but the fear remains.
I wonder what will happen if I get a van? Will more people take me places, since it will be easier to get me in and out? If I actually really get a live-in caregiver, will he or she be able to drive it? If it's rigged up for assisted hand controls, might I even be able to drive once again? I love my truck. Will I feel that same kind of satisfaction from a wheelchair van?
I don't know any of this, and that fear is causing a kind of stasis. I am afraid to sell the truck for fear of not getting something else. I am afraid to sell the truck because, well, it's the truck I always wanted. I'm afraid of change, particularly if it brings no improvement to my life. I don't know how long I am going to live. I am certain I will want to live longer if I regain this kind of mobility. I also know that I will still continue to be dependent on others to drive me. If I do nothing, nothing bad will happen. If I do something, well, I don't know what will happen. I'm afraid.
Sunday, 4 March 2018
Help! I've Slumped And I Can't Sit Up
I have company coming for lunch. It's sufficiently difficult these days to entertain that I was going to skip my blog, using the time to prepare. Unfortunately ALS had other plans for me. While I was getting a couple of things out of the freezer to prepare for my guests, I leaned down to reach for something on the bottom shelf, only to discover that I can no longer raise myself up from that position, even with the use of my arms, such as they are.
The combination of loss of my upper core muscles, the lower ones having failed me some time ago, with weakness in my arms overall, means my trunk weight is too much for me to lever vertically having slanted it horizontally. It means, officially and definitively, that I can sit up but not bend over.
Before anyone starts asking any foolish questions, yes. I had my seatbelt on. These days it goes on as soon as I get in the chair. So it was not so much a case of "I've fallen and I can't get up", as it was a case of "I'm bent over and I can't sit up". My body was bent with only the seatbelt preventing full collapse to the floor.
This is not just one, or even one group, of muscles which are failing here. It is the combined failure of my lower core, my upper core, my back, my shoulders, my upper arms, my lower arms, and even my hands. We forget sometimes that our movements are an orchestration, many muscles working together to perform one task, or a sequence of tasks. Basically I am now dead from the neck down, excepting shoulders. You can write your own joke here.
How did I recover? In that bent over shape, I manoeuvered my power wheelchair over to the table. Then, after several attempts using the table, I managed to get myself leaning mostly sideways. I then pushed myself with weakened arms far enough back so that the armrests on my chair would aid in reducing slumpage. Then I used the table as a push point to force myself backwards along the armrest, finally sliding into sufficient position that I would sort of slump upright instead of sideways or downwards. Centering and stabilization was accomplished using my weakened shoulder and neck muscles. I am once again vertical.
Now, company will be here in 20 minutes. Screw it. They're going to have to help with making lunch. I'm done.
The combination of loss of my upper core muscles, the lower ones having failed me some time ago, with weakness in my arms overall, means my trunk weight is too much for me to lever vertically having slanted it horizontally. It means, officially and definitively, that I can sit up but not bend over.
Before anyone starts asking any foolish questions, yes. I had my seatbelt on. These days it goes on as soon as I get in the chair. So it was not so much a case of "I've fallen and I can't get up", as it was a case of "I'm bent over and I can't sit up". My body was bent with only the seatbelt preventing full collapse to the floor.
This is not just one, or even one group, of muscles which are failing here. It is the combined failure of my lower core, my upper core, my back, my shoulders, my upper arms, my lower arms, and even my hands. We forget sometimes that our movements are an orchestration, many muscles working together to perform one task, or a sequence of tasks. Basically I am now dead from the neck down, excepting shoulders. You can write your own joke here.
How did I recover? In that bent over shape, I manoeuvered my power wheelchair over to the table. Then, after several attempts using the table, I managed to get myself leaning mostly sideways. I then pushed myself with weakened arms far enough back so that the armrests on my chair would aid in reducing slumpage. Then I used the table as a push point to force myself backwards along the armrest, finally sliding into sufficient position that I would sort of slump upright instead of sideways or downwards. Centering and stabilization was accomplished using my weakened shoulder and neck muscles. I am once again vertical.
Now, company will be here in 20 minutes. Screw it. They're going to have to help with making lunch. I'm done.
Saturday, 3 March 2018
The Wait Is Killing Me
It's been another day where I have done nothing but sleep. I seem to be having a lot of these lately, days where any activity seems like more than I would wish to do, where any difficulty in getting out of my apartment is enough to keep me in. Inertia. I am an object at rest. I will remain at rest until some outside force causes me to move. As to a force causing me to stop, that's an easy one. You already know the answer.
I was going to go out today, but fate and the weather had other plans. So instead I stayed in, looking out my window, drifting through the day, sometimes waking, sometimes sleeping, all the time aware of the cold and snow just outside my window. It is still winter, for a while yet.
I'm tired of waiting. I would say the waiting is killing me, but that is far to trite, the obvious irony dripping from it like syrup down the side of pancakes. Yet I am tired of the wait. I want to do something in that time, be active in what remains of my time here. I want to go somewhere, do something, meet someone, eat, drink, play.
Then it happens. I start doing something. Within minutes I am so tired I have to stop. Carrying the laundry down the haul means taking a half an hour afterwards to allow my ever diminishing body to recover. Going over to the mall, especially in this weather, feels like a million mile trek. I need encouragement, a reason to go, a need that takes me somewhere worth the weariness.
It's not that I can't; it's that my default state has become inert, without motion. My muscles have weakened to the point their own absolute zero, that place where all movement stops. The muscles in my legs have so diminished that their shape has now become bent, following the line of the bone, rather than the shape of the muscle, only curved a bit somehow. My left foot forever points outwards unless forced in. I have lost that one golden jewel on my feet; I can no longer wiggle my big toe, not at all.
I suppose I shall say it. It's just laying there staring in my face. Yes, the wait is killing me. I'm now a long term member in a club people are dying to get out of. Perhaps I will watch something on Netflix, folding laundry one piece at a time with a rest of five or ten minutes between each piece. I'll drink some wine; the wine bottle is getting heavier, heavy enough that I now use two hands sometimes. Maybe I will eat; I don't need much these days, so potato salad from Costco and perhaps a few sardines.
My God my life has become so pathetic.
I was going to go out today, but fate and the weather had other plans. So instead I stayed in, looking out my window, drifting through the day, sometimes waking, sometimes sleeping, all the time aware of the cold and snow just outside my window. It is still winter, for a while yet.
I'm tired of waiting. I would say the waiting is killing me, but that is far to trite, the obvious irony dripping from it like syrup down the side of pancakes. Yet I am tired of the wait. I want to do something in that time, be active in what remains of my time here. I want to go somewhere, do something, meet someone, eat, drink, play.
Then it happens. I start doing something. Within minutes I am so tired I have to stop. Carrying the laundry down the haul means taking a half an hour afterwards to allow my ever diminishing body to recover. Going over to the mall, especially in this weather, feels like a million mile trek. I need encouragement, a reason to go, a need that takes me somewhere worth the weariness.
It's not that I can't; it's that my default state has become inert, without motion. My muscles have weakened to the point their own absolute zero, that place where all movement stops. The muscles in my legs have so diminished that their shape has now become bent, following the line of the bone, rather than the shape of the muscle, only curved a bit somehow. My left foot forever points outwards unless forced in. I have lost that one golden jewel on my feet; I can no longer wiggle my big toe, not at all.
I suppose I shall say it. It's just laying there staring in my face. Yes, the wait is killing me. I'm now a long term member in a club people are dying to get out of. Perhaps I will watch something on Netflix, folding laundry one piece at a time with a rest of five or ten minutes between each piece. I'll drink some wine; the wine bottle is getting heavier, heavy enough that I now use two hands sometimes. Maybe I will eat; I don't need much these days, so potato salad from Costco and perhaps a few sardines.
My God my life has become so pathetic.
Friday, 2 March 2018
Snow Exhaustion
Exhastion. It's constant and invasive. Here it is 3:00 PM and I am ready for a nap, perhaps an hour or two. It doesn't really matter that much today. It's snowing here in Calgary. I am a shut-in once again. The streets are covered. The sidewalks are covered. The mall parking lot is covered. Everywhere I look there is snow, snow that will stick around for at least a couple of weeks or more.
I'm supposed to go to a retirement party tomorrow afternoon for Jane Rivest, one the the leading ALS advocates here in Alberta. She works for the ALS Society, however it is now time for her to step back and rest, letting others take over the load. My plan was to catch the bus, then the C-Train to a station near where the party is being held, then use my power chair to go the 8 or 10 blocks remaining. Thanks to this snow, that's out of the question. I'm thinking a cab might be more effective. My cab rides are subsidized, but still, it is not without some cost. Reliability will be a challenge as well.
On Sunday I am going to Emma's for dinner. I've already arranged for Access Calgary to take me there and back. The problem is that, thanks to this snow, they can't confirm a pick-up or delivery time for Sunday evening. I\m sure they will get here, and there, and back. I'm just not sure when.
This is my reality these days, that I depend on things like transit, cleared sidewalks, arrival and departure times, availability of cabs and such. All of this wears me down, adding to the build in exhaustion of ALS. I really do need that nap.
I'm supposed to go to a retirement party tomorrow afternoon for Jane Rivest, one the the leading ALS advocates here in Alberta. She works for the ALS Society, however it is now time for her to step back and rest, letting others take over the load. My plan was to catch the bus, then the C-Train to a station near where the party is being held, then use my power chair to go the 8 or 10 blocks remaining. Thanks to this snow, that's out of the question. I'm thinking a cab might be more effective. My cab rides are subsidized, but still, it is not without some cost. Reliability will be a challenge as well.
On Sunday I am going to Emma's for dinner. I've already arranged for Access Calgary to take me there and back. The problem is that, thanks to this snow, they can't confirm a pick-up or delivery time for Sunday evening. I\m sure they will get here, and there, and back. I'm just not sure when.
This is my reality these days, that I depend on things like transit, cleared sidewalks, arrival and departure times, availability of cabs and such. All of this wears me down, adding to the build in exhaustion of ALS. I really do need that nap.
Thursday, 1 March 2018
Care Plans
We are increasing my level of care today. Good thing. I am having a rough day, the kind where I wish I could crawl back into bed and stay there. Unfortunately I need someone around to help me with that, someone to get me up if I need to get up, especially if I need to go to the toilet. So even a day when I really want to take it easy relies on the care of others.
This new level of care includes some additions to my daily care plan, including shaving me when I ask, helping me wash in the shower, and a short visit at around 5:00 PM to help me empty my catheter bag. It's been getting overfilled some days, the back pressure causing the catheter to come loose. That's another thing they will check at 5:00 PM; making sure my catheter is well attached, re-attaching it if needed. Oh, and reminding me to take my afternoon medications. I've been forgetting them lately.
When the Health Care team at Alberta Health Services issues a new "care plan" to cover these changes and additions, they send it to CBI, the agency who provides my home care. The CBI Supervisor for my area comes over and puts the new care plans into my care log, a green folder with all the instructions and such in it. Today I took some time to review the care plan.
One of the first things I noticed is the lack of clarity in much of the instructions. An item, or several items, will be listed off on a care plan sheet, with a simple check mark beside them. Most of them on the afternoon sheet are about medications, something which is true for me also. I have been forgetting my afternoon meds. Then there is a follow up page for notes. Mine has instructions to empty my catheter bag, something which is becoming difficult for me, and to help me with toileting.
That's sort of the real agenda here. My catheter, when it comes off, tends to come off around that time of day. With someone emptying the bag and assisting with "toileting", it means that the HCA will perforce need to check whether the condom portion is still firmly attached. It also means if I leaned over to pick something up while in the confines of my chair, any surprises will be dealt with rather than being left until bed time.
It's kind of an interesting read, if you can decipher it. This plan spells out, in skeleton form, what care I am to be given. As a framework it means the HCA's can either do the minimum or seek to fulfill the greater objecticve of making it safe for me to live at home. I am fortunate that most of them do the latter. The only one who consistently works towards minimum is my night HCA. I am almost always the last on her list, so she just wants to do what must be done, then get out as quickly as possible. Yet, even with that, the care level is excellent. Excellent is not written in the plan; it must be written on the heart.
This new level of care includes some additions to my daily care plan, including shaving me when I ask, helping me wash in the shower, and a short visit at around 5:00 PM to help me empty my catheter bag. It's been getting overfilled some days, the back pressure causing the catheter to come loose. That's another thing they will check at 5:00 PM; making sure my catheter is well attached, re-attaching it if needed. Oh, and reminding me to take my afternoon medications. I've been forgetting them lately.
When the Health Care team at Alberta Health Services issues a new "care plan" to cover these changes and additions, they send it to CBI, the agency who provides my home care. The CBI Supervisor for my area comes over and puts the new care plans into my care log, a green folder with all the instructions and such in it. Today I took some time to review the care plan.
One of the first things I noticed is the lack of clarity in much of the instructions. An item, or several items, will be listed off on a care plan sheet, with a simple check mark beside them. Most of them on the afternoon sheet are about medications, something which is true for me also. I have been forgetting my afternoon meds. Then there is a follow up page for notes. Mine has instructions to empty my catheter bag, something which is becoming difficult for me, and to help me with toileting.
That's sort of the real agenda here. My catheter, when it comes off, tends to come off around that time of day. With someone emptying the bag and assisting with "toileting", it means that the HCA will perforce need to check whether the condom portion is still firmly attached. It also means if I leaned over to pick something up while in the confines of my chair, any surprises will be dealt with rather than being left until bed time.
It's kind of an interesting read, if you can decipher it. This plan spells out, in skeleton form, what care I am to be given. As a framework it means the HCA's can either do the minimum or seek to fulfill the greater objecticve of making it safe for me to live at home. I am fortunate that most of them do the latter. The only one who consistently works towards minimum is my night HCA. I am almost always the last on her list, so she just wants to do what must be done, then get out as quickly as possible. Yet, even with that, the care level is excellent. Excellent is not written in the plan; it must be written on the heart.
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