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.
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