My final "actum histrionicus" for this year was to break, somehow, the tilt function on my power wheelchair. This is the function which leans the chair far backwards, allowing me to nap, or simply to slide back into the chair properly, an act which I was performing when the control stopped working. This failure left me in the far back lean position, unable to return vertical. It also left my HCA, Edith, scrambling to figure out what to do.
I knew what to do. The wheelchair has release rods, so it could easily be pushed out of the way. The challenge was getting the sling behind my back so I could be raised, Lazurus like, from the coffin confines of the PWC, into the air and onto my bed. Edith saw things differently. Instead she decided that, while lifting me was a good idea, safely putting me on the bed was too much to do. So, in her own method, she used the poorly positioned sling to lift me out of the PWC, let me hang in the air, pulled the PWC away, positioned the manual chair underneath me, and then put me down.
Who knows which method was better? Certainly not me. In her defence, I will say that she knew without instruction what to look for in terms of manual chair parts. She also knew, without instruction, how to assemble the manual chair. So perhaps her way was faster and easier. Regardless, she, with some rapidity uncommon to her, got me out of the broken PWC and into my manual chair. It is there I now sit. The power chair remains in its reclining position in my bedroom.
Unfortunately this is not only New Year's Eve, but it is Sunday too. This means I will be unable to reach anyone from whom I can request repairs until Tuesday, leaving me to use my manual chair for the next three days at a minimum, more likely for the next week or so. This means a substantial constraint on my activities. My arms are weak, too weak for substantial pushing of myself. I can handle the apartment, but no further.
Fortunately I have little to do over the next week. Tomorrow Kathy will come and clean my apartment, as well as doing laundry. After exercises, she will make me some of her famous sandwiches for lunch. Later in the day, my friend Bobbi will come and help me take down my Christmas tree as well as turning off my outside Christmas lights. They can come down later unless Bobbi wants to attempt is in sub-zero weather.
Wish me luck as I overwork weakened arms pushing myself about my apartment for a week or so. Wish me luck as I remain indoors until I get wheelchair power once again. I'm not getting better, but I am going backwards in things.
Sunday, 31 December 2017
Saturday, 30 December 2017
Training A New HCA
I hate getting a new Health Care Aide, a new home care worker. They don't know the routine. They don't know where things go. They don't know what to use or not. They don't know when I might need help or not. They hurt me when they work with my body. They are not aware of the wheelchair clearance so they break things. It takes time to train them in all of these things, time for them to learn what to watch out for, how to handle my body, what to cook.
Today is an excellent example. I have a new HCA, Yemi. She is a lovely person. All I have to do is train her. This morning, while getting me out of bed, she got distracted when I leaned back in my wheelchair. I can't see behind me so I depend on the HCA to tell me when I might be hitting something. I asked if the chair was okay and she said yes. Then I promptly hit the top of my dresser, scratching it even more, breaking a part off of the wheelchair. She did know what she was looking at, so she couldn't tell me what broke on the wheelchair. I could see the damage on the dresser, yet she was unable to distinguish it at first.
Then there was the dishwasher incident. It was nothing serious; it's just that she doesn't yet know where things go, so she has to guess and read labels and figure things out. The dishwasher was not emptied yesterday because she ran out of time. Today the dishwasher was half emptied, but many of the dishes were on the counter while she waited for my help. That meant she ran late today too, so I have no lunch or breakfast. I'm going to make some Kraft Dinner to tide me over.
With all of this, I am tired. My water jug is full but my mug is in the sink. I've got a cup of coffee, after spilling milk on myself. She was anxious to get finished here and move to her next client; she was 15 minutes late getting to me, and will be 15 minutes late getting to her next client, only because I almost shoved her out the door, leaving several small tasks for me to complete. That means I am, and will be, tired today. So, more naps, more small tasks. Things might get done; they might not.
All in all, I think Yemi will learn and do things so much faster as time goes by. She commented today that she had to do things faster, and I told her to focus on the list I have of most important things. I also said it would go faster as she learned more about my care. I hope so. She is from a culture where speed is often not the most important thing. I think she will learn. I hope she will learn. I can't afford to train another HCA. It's exhausting.
Today is an excellent example. I have a new HCA, Yemi. She is a lovely person. All I have to do is train her. This morning, while getting me out of bed, she got distracted when I leaned back in my wheelchair. I can't see behind me so I depend on the HCA to tell me when I might be hitting something. I asked if the chair was okay and she said yes. Then I promptly hit the top of my dresser, scratching it even more, breaking a part off of the wheelchair. She did know what she was looking at, so she couldn't tell me what broke on the wheelchair. I could see the damage on the dresser, yet she was unable to distinguish it at first.
Then there was the dishwasher incident. It was nothing serious; it's just that she doesn't yet know where things go, so she has to guess and read labels and figure things out. The dishwasher was not emptied yesterday because she ran out of time. Today the dishwasher was half emptied, but many of the dishes were on the counter while she waited for my help. That meant she ran late today too, so I have no lunch or breakfast. I'm going to make some Kraft Dinner to tide me over.
With all of this, I am tired. My water jug is full but my mug is in the sink. I've got a cup of coffee, after spilling milk on myself. She was anxious to get finished here and move to her next client; she was 15 minutes late getting to me, and will be 15 minutes late getting to her next client, only because I almost shoved her out the door, leaving several small tasks for me to complete. That means I am, and will be, tired today. So, more naps, more small tasks. Things might get done; they might not.
All in all, I think Yemi will learn and do things so much faster as time goes by. She commented today that she had to do things faster, and I told her to focus on the list I have of most important things. I also said it would go faster as she learned more about my care. I hope so. She is from a culture where speed is often not the most important thing. I think she will learn. I hope she will learn. I can't afford to train another HCA. It's exhausting.
Friday, 29 December 2017
Intruder Alert
I had a bit of a scary incident yesterday. I was in the middle of preparing things for dinner when a complete stranger opened my front door and stuck his head in. I asked him who the hell he was and what he wanted. He said he lived in Suite 409 and then asked if I knew what the time was. I know the guy in 409, and this was not him. I'm pretty sure he didn't need to know the time either.
He was a thief, most likely looking for an easy steal from apartments where nobody was home or where the door was unlocked. As my mind quickly put all the information together, I got angry. I told him in no uncertain terms to close my door and get out of my building. I used my anger to drive my voice, to press home my point. He quickly retreated. I quickly got back to my task at hand. Once finished I went to tell my neighbours, all of whom seemed to be not home at that time.
Funny thing is, I call it a bit of a scary incident yet I did not feel frightened in the least. He was a big man, but in my mind I already had a plan to drive right over him in my wheelchair, possibly holding him down for police. I also had a big knife in my hand, which I am certain he saw. Perhaps that impacted his decision to beat a rapid retreat. In all of this, my lack of fear in the incident is the most interesting to me.
I generally keep my front door unlocked when I am at home. This is to allow easy access for visitors, delivery people, home care workers and so on. I know who is coming, and generally when they are coming, except for deliveries from the pharmacy or UPS and such. I let people in to the building because I know they are coming here. What causes me some fear is when I am in bed at night, basically trapped without someone to help me get up. I'm not sure I can even do that solo any more. So night is the time for fright.
This incident reminds me once again that I should really look into a remote control lock, one that I can unlock from my bed. It would be safer, encouraging me to keep the door locked when I am not expecting anyone, or even when I am. The problem is cost; they generally run in the $300 range. I already have extra costs for January and February, what with mortgage and home insurance. At best, I won't be able to afford it until March, and by that time who knows what kind of shape I will be in.
He was a thief, most likely looking for an easy steal from apartments where nobody was home or where the door was unlocked. As my mind quickly put all the information together, I got angry. I told him in no uncertain terms to close my door and get out of my building. I used my anger to drive my voice, to press home my point. He quickly retreated. I quickly got back to my task at hand. Once finished I went to tell my neighbours, all of whom seemed to be not home at that time.
Funny thing is, I call it a bit of a scary incident yet I did not feel frightened in the least. He was a big man, but in my mind I already had a plan to drive right over him in my wheelchair, possibly holding him down for police. I also had a big knife in my hand, which I am certain he saw. Perhaps that impacted his decision to beat a rapid retreat. In all of this, my lack of fear in the incident is the most interesting to me.
I generally keep my front door unlocked when I am at home. This is to allow easy access for visitors, delivery people, home care workers and so on. I know who is coming, and generally when they are coming, except for deliveries from the pharmacy or UPS and such. I let people in to the building because I know they are coming here. What causes me some fear is when I am in bed at night, basically trapped without someone to help me get up. I'm not sure I can even do that solo any more. So night is the time for fright.
This incident reminds me once again that I should really look into a remote control lock, one that I can unlock from my bed. It would be safer, encouraging me to keep the door locked when I am not expecting anyone, or even when I am. The problem is cost; they generally run in the $300 range. I already have extra costs for January and February, what with mortgage and home insurance. At best, I won't be able to afford it until March, and by that time who knows what kind of shape I will be in.
Thursday, 28 December 2017
Making Dinner
A common theme for me these days is exhaustion, especially with my arms failing as they are. Simply picking something up off the floor is the exercise equivalent of heavy weight lifting. It's sufficiently wearing on my body that I get nauseous from the workout. Doing chores, even simple ones, can leave me bagged for the day. If I really get going, in one day I can wear myself out for three more.
The problem is that I still want to lead an active life, even if it is limited by my body. I still want to make nice meals for guests, go shopping for my own groceries, put a table cloth on the table, fold my own laundry. Yet all of these things wear me down, or wear my arms down, to the point where I shake and shiver. Then I have to stop; for how long I never really know. It depends on what I am trying to do and how much I am willing to suffer so I can do it.
Today I am making dinner for friends. I am about to start preparing things, cutting vegetables, making the salad, everything I can do before their arrival in about three hours. I will work slowly, steadily, determinedly, until I get as much done as I can without complete collapse. First comes cutting tomatoes and mozzarella cheese for a Caprese ring around the platter I will use for Risotto Saffrona with Seafood. The Risotto will be the last thing I make; somebody may have to help me with it. You would think cutting tomatoes and cheese would be a quick, simple thing. Not so for me. It will take a while, then I will need a rest.
Next will come the Lobster Bisque. Fortunately I cheat on that one. I just buy Tomato Basil Soup and add the Lobster bits. Still, it will take me more time than most since I have to chop a lobster tail into little bits and saute it, along with the rest of the things needing saute. I really should have a sous chef.
At least the salad should be easy. I bought pre-packaged salad. All I need to do is add some tomatoes and some salad shrimp; the shrimp comes out of a can, ready to use, so that makes life easier. In fact I cheat on a lot of stuff these days, things I would normally cook from scratch. I just can't do it anymore.
Then the Risotto. This is probably my greatest challenge. I need to work in front of the stove, sitting sideways in my wheelchair, stirring the rice, adding the broth, all the while twisting my body to see what I am doing, using my arms to work the rice until it is done.
I did not sleep well last night. I sure am going to tonight. Exercise tires everyone out, especially me, especially when even the simple things are like running a marathon or triathlon. To do dinner tires every part of me. I need to pace things so I am not too tired to entertain when my guests arrive, too tired to eat, too tired to stay up until 9:00 PM or later. I'll get there. It'll just take some doing.
The problem is that I still want to lead an active life, even if it is limited by my body. I still want to make nice meals for guests, go shopping for my own groceries, put a table cloth on the table, fold my own laundry. Yet all of these things wear me down, or wear my arms down, to the point where I shake and shiver. Then I have to stop; for how long I never really know. It depends on what I am trying to do and how much I am willing to suffer so I can do it.
Today I am making dinner for friends. I am about to start preparing things, cutting vegetables, making the salad, everything I can do before their arrival in about three hours. I will work slowly, steadily, determinedly, until I get as much done as I can without complete collapse. First comes cutting tomatoes and mozzarella cheese for a Caprese ring around the platter I will use for Risotto Saffrona with Seafood. The Risotto will be the last thing I make; somebody may have to help me with it. You would think cutting tomatoes and cheese would be a quick, simple thing. Not so for me. It will take a while, then I will need a rest.
Next will come the Lobster Bisque. Fortunately I cheat on that one. I just buy Tomato Basil Soup and add the Lobster bits. Still, it will take me more time than most since I have to chop a lobster tail into little bits and saute it, along with the rest of the things needing saute. I really should have a sous chef.
At least the salad should be easy. I bought pre-packaged salad. All I need to do is add some tomatoes and some salad shrimp; the shrimp comes out of a can, ready to use, so that makes life easier. In fact I cheat on a lot of stuff these days, things I would normally cook from scratch. I just can't do it anymore.
Then the Risotto. This is probably my greatest challenge. I need to work in front of the stove, sitting sideways in my wheelchair, stirring the rice, adding the broth, all the while twisting my body to see what I am doing, using my arms to work the rice until it is done.
I did not sleep well last night. I sure am going to tonight. Exercise tires everyone out, especially me, especially when even the simple things are like running a marathon or triathlon. To do dinner tires every part of me. I need to pace things so I am not too tired to entertain when my guests arrive, too tired to eat, too tired to stay up until 9:00 PM or later. I'll get there. It'll just take some doing.
Wednesday, 27 December 2017
Opening Doors
I was across the street at the mall today, shopping. All I really wanted were some groceries for dinner tomorrow. However a friend wanted to encourage me to get out, suggesting that we meet for coffee then do some random wandering through the mall to see if there were any interesting bargains to be had. There were not. By the time she was ready to go home, my back needed a rest. It's getting harder for me to sit up straight, even with the support of my power wheelchair.
Since I needed to go to Safeway for both drugs and food, I parked outside the store, inside the mall, leaned back in my chair and rested for about 15 minutes. I received the requisite stares of curiousity, leaving them be so that people could figure it out for themselves. After a rest, I went shopping.
My shopping excursion was uneventful, except for the absence of Romaine lettuce, thanks to an e-coli outbreak in eastern Canada. Safeway is part of Sobeys, the chain experiencing this issue with Romaine lettuce. They've told all their stores across Canada to remove this product in an abundance of caution. Much of their pre-packaged salad products contain Romaine lettuce. They are warehoused in Toronto and shipped nation wide. So an e-coli outbreak out east means no Romaine lettuce for me, unless I go to Co-op, about 20 minutes away in -20C weather. I would rather not.
It was on the way home that I started to have to deal with an issue which has been creeping up on me for some time. I noticed that I was having trouble pushing the button on my garage door opener. I can do it, but only if I focus on the button. The automatic push is gone. The same thing is happening with my ability to open doors, especially the heavy garage doors. I can still open them, but it is no longer a trivial task. I have to focus, to pay attention to the strength and coordination require to complete the action. This is how loss of function really becomes noticeable.
I has caused me to wonder. What will happen when I can no longer open those doors in the garage? Will I have to ask someone to accompany me every time I want to go outside? Will this pending loss of ability be the thing which drives me over the edge, taking me from living to dying? What other things will I lose along the way? How will that impact my ability to live in my own home, something I have sworn to do until death?
It's all a bit complicated, the way one thing impacts another. It's all small things adding to become big things. In the end, I am not sure what will get me first; death from complications of ALS, or sufficient losses such that my quality of life falls below what I see as an acceptable level. It's a terrible quandry, which is why I don't thing about it much. Better to focus on today, perhaps tomorrow, than worry about what might happen in a month or two. Who knows? They might find a treatment or cure that will work for me. I can hope for that. The rest is just noise and confusion.
Since I needed to go to Safeway for both drugs and food, I parked outside the store, inside the mall, leaned back in my chair and rested for about 15 minutes. I received the requisite stares of curiousity, leaving them be so that people could figure it out for themselves. After a rest, I went shopping.
My shopping excursion was uneventful, except for the absence of Romaine lettuce, thanks to an e-coli outbreak in eastern Canada. Safeway is part of Sobeys, the chain experiencing this issue with Romaine lettuce. They've told all their stores across Canada to remove this product in an abundance of caution. Much of their pre-packaged salad products contain Romaine lettuce. They are warehoused in Toronto and shipped nation wide. So an e-coli outbreak out east means no Romaine lettuce for me, unless I go to Co-op, about 20 minutes away in -20C weather. I would rather not.
It was on the way home that I started to have to deal with an issue which has been creeping up on me for some time. I noticed that I was having trouble pushing the button on my garage door opener. I can do it, but only if I focus on the button. The automatic push is gone. The same thing is happening with my ability to open doors, especially the heavy garage doors. I can still open them, but it is no longer a trivial task. I have to focus, to pay attention to the strength and coordination require to complete the action. This is how loss of function really becomes noticeable.
I has caused me to wonder. What will happen when I can no longer open those doors in the garage? Will I have to ask someone to accompany me every time I want to go outside? Will this pending loss of ability be the thing which drives me over the edge, taking me from living to dying? What other things will I lose along the way? How will that impact my ability to live in my own home, something I have sworn to do until death?
It's all a bit complicated, the way one thing impacts another. It's all small things adding to become big things. In the end, I am not sure what will get me first; death from complications of ALS, or sufficient losses such that my quality of life falls below what I see as an acceptable level. It's a terrible quandry, which is why I don't thing about it much. Better to focus on today, perhaps tomorrow, than worry about what might happen in a month or two. Who knows? They might find a treatment or cure that will work for me. I can hope for that. The rest is just noise and confusion.
Tuesday, 26 December 2017
Gilles and Hannah Visited Today
At last. A moment in the day when I have the energy and the quietude in which to write. I must confess that there was time this morning, after my HCA got me out of bed, where I could possibly have done some writing. However I chose to take that time to rest, to nap, from 11:30 AM to 1:30 PM; actually 1:37 PM to be exact, when the first of my guests arrived to visit.
Gilles and Hannah came to spend time with me today. They brought their son Innnuq and their daughter-in-law Iacha with them. It was a crash course in Richard for the youngsters, Gilles and Hanna having known me for years now. Talk about an amazing visit, filled with love and understanding. It was terrific, although far too short. It could have gone on for days and I would not have complained.
Hannah is the mother of Siobhan, a dear friend who also suffered and died with ALS. We met online, Siobhan and I, and were kindred spirits, connecting immediately. In one of my travels across the country, one of my attempts to run away from ALS, I went to meed Siobhan and family, her daughter Ella, her son Dom, her husband Tom, Gilles and Hannah, and even her sister. We had an absolutely fabulous visit, much like today's, where we talked, laughed, cried, and for a moment, one or two precious moments, forgot that we were people trapped in a common disease, a shared deathly challenge where we were certain we could not win.
Gilles is the loving father of Siobhan, gentle and kind, completely connected both spiritually and physically to his family, children and grandchildren. I could only hope to be as well connected emotionally to my children and grandchildren. Alas I am not he, although he will be the first to tell you that he is not me either. I love his view of the world, his generosity of spirit, his laughter.
To top it all off, Ryan and Andrea came to visit as well. Andrea has been so wonderful over the holiday, checking to see if I am all right, making sure I am not lonely or alone, coming to visit today even with other things on her schedule, demanding her time. Ryan, as you might guess, was already here on the 24th, fixing my dishwasher. He is such a terrific support.
For me, a great many days feel like Christmas. I have the gift of people around me who love and care for me, who help me, who look after me. Both near and far, I know there are people I can count on, as I must on a regular basis. I am not completely sure how it happened, what made it be, but I have two families; my brothers, children, and parents; those who surround me with love here in Calgary. I don't really know how it can get much better. Perhaps only if there was a cure, or even a viable treatment, for ALS. I have to say I am living the best life possible, as difficult as it is, with the help of these people. I am grateful.
Gilles and Hannah came to spend time with me today. They brought their son Innnuq and their daughter-in-law Iacha with them. It was a crash course in Richard for the youngsters, Gilles and Hanna having known me for years now. Talk about an amazing visit, filled with love and understanding. It was terrific, although far too short. It could have gone on for days and I would not have complained.
Hannah is the mother of Siobhan, a dear friend who also suffered and died with ALS. We met online, Siobhan and I, and were kindred spirits, connecting immediately. In one of my travels across the country, one of my attempts to run away from ALS, I went to meed Siobhan and family, her daughter Ella, her son Dom, her husband Tom, Gilles and Hannah, and even her sister. We had an absolutely fabulous visit, much like today's, where we talked, laughed, cried, and for a moment, one or two precious moments, forgot that we were people trapped in a common disease, a shared deathly challenge where we were certain we could not win.
Gilles is the loving father of Siobhan, gentle and kind, completely connected both spiritually and physically to his family, children and grandchildren. I could only hope to be as well connected emotionally to my children and grandchildren. Alas I am not he, although he will be the first to tell you that he is not me either. I love his view of the world, his generosity of spirit, his laughter.
To top it all off, Ryan and Andrea came to visit as well. Andrea has been so wonderful over the holiday, checking to see if I am all right, making sure I am not lonely or alone, coming to visit today even with other things on her schedule, demanding her time. Ryan, as you might guess, was already here on the 24th, fixing my dishwasher. He is such a terrific support.
For me, a great many days feel like Christmas. I have the gift of people around me who love and care for me, who help me, who look after me. Both near and far, I know there are people I can count on, as I must on a regular basis. I am not completely sure how it happened, what made it be, but I have two families; my brothers, children, and parents; those who surround me with love here in Calgary. I don't really know how it can get much better. Perhaps only if there was a cure, or even a viable treatment, for ALS. I have to say I am living the best life possible, as difficult as it is, with the help of these people. I am grateful.
Monday, 25 December 2017
Merry Christmas
Merry Christmas!
I know there are all kinds of my friends who celebrate different holidays. Even as I question the theology behind Christianity, my traditions are strong. Celebrating this day is as much a part of my soul as is my love of family, and my adventurous spirit. I have always loved this day, and always will.
It's the days before and after Christmas which cause me real grief. In the days leading up, I worry about so many things. Did I get the right gifts? Did I get enough gifts? Did I miss anyone? Do I have enough food for Christmas dinner? Should I invite others over, or is the guest list long enough? There are plenty of things to fret over, and fretting over things is one of my most excellent abilities.
Lately, though, I have been compelled by disease and finances to do less, to think in smaller terms. I did not do a giant Christmas party this year. Tonny did the arranging and held it here for me. He decided not to do gifts, a decision I am glad was made for me. I didn't have to worry. My family Christmas dinner is organized such that my daughter, Kate, and her family can help with the final preparations. Me? I'm am desperately trying to take it easy, although that's not working so good.
In order to force me to relax, I\ve made a martini for myself. It will take me at least a half hour to finish it, maybe more. In that time I will do my best to focus on my martini instead of things like Christmas lights, food to prepare, or anything else for that matter.
I desire only one thing for Christmas this year; a cure for ALS. This is the sixth Christmas where that has been my wish, my sixth Christmas where my abilities and strength are much less than last year. For the last couple of years I have needed help getting ready for Christmas, putting up the tree, decorating. Next year, if I am still here, I will need more help; I will be unable to do any of it at all. That is, unless someone comes up with a cure, a cure of ALS. Wouldn't that be a Christmas miracle worth having?
I know there are all kinds of my friends who celebrate different holidays. Even as I question the theology behind Christianity, my traditions are strong. Celebrating this day is as much a part of my soul as is my love of family, and my adventurous spirit. I have always loved this day, and always will.
It's the days before and after Christmas which cause me real grief. In the days leading up, I worry about so many things. Did I get the right gifts? Did I get enough gifts? Did I miss anyone? Do I have enough food for Christmas dinner? Should I invite others over, or is the guest list long enough? There are plenty of things to fret over, and fretting over things is one of my most excellent abilities.
Lately, though, I have been compelled by disease and finances to do less, to think in smaller terms. I did not do a giant Christmas party this year. Tonny did the arranging and held it here for me. He decided not to do gifts, a decision I am glad was made for me. I didn't have to worry. My family Christmas dinner is organized such that my daughter, Kate, and her family can help with the final preparations. Me? I'm am desperately trying to take it easy, although that's not working so good.
In order to force me to relax, I\ve made a martini for myself. It will take me at least a half hour to finish it, maybe more. In that time I will do my best to focus on my martini instead of things like Christmas lights, food to prepare, or anything else for that matter.
I desire only one thing for Christmas this year; a cure for ALS. This is the sixth Christmas where that has been my wish, my sixth Christmas where my abilities and strength are much less than last year. For the last couple of years I have needed help getting ready for Christmas, putting up the tree, decorating. Next year, if I am still here, I will need more help; I will be unable to do any of it at all. That is, unless someone comes up with a cure, a cure of ALS. Wouldn't that be a Christmas miracle worth having?
Sunday, 24 December 2017
Friends and Family, Near And Far
Today has been a good day, so far. I was up early this morning, at 9:00 AM of all things. This was because a friend of mine was coming to finish the repairs of the dishwasher that another friend could not finish for me last night. It's like I have this whole team of people who can help me when I really need it, and remind me that I don't always need help for everything.
There are some things, however, where it is just too much for me to manage myself. This month there are three mortgage payments. I thought I was okay. Then a couple of expenses came along and suddenly I was concerned. Out of nowhere, a family member gave me a Christmas gift which would well cover that extra payment. I am so grateful. I am also grateful that he encouraged me to think of myself in the process, perhaps spending some of the money frivolously on myself, perhas a bottle of Scotch or some Rum. Perhaps both!
I had a couple of friends come over last night, as I said earlier. Ostensibly they were here to clean up some of the little things which have been bugging me for ages. One of these chores was to tidy up the wiring behind the TV. It was messed up. While he did cable clean, she got into the kitchen and helped me cut up some fruit for a fruit plate tomorrow. When the wiring was finished, we all tried to pitch in and figure out the dishwasher. It got late so we had to stop in the middle of things. That's what lead to the other friend coming this morning to finish the job.
Of course there are the many other people whe are here for me, checking to see that I am okay, making sure I will not be alone on Christmas. As it happens, my daughter Kate and her family will be here tomorrow for Christmas dinner. I am reminded once again that while there are times when I feel so alone, there really are lots of people around me, and those afar who help in their own way. I can keep going for a while, stop worrying for a while, focus on living for a while. This is as good as it gets for me; it's as good as it gets for anyone. Thank you all.Fr
There are some things, however, where it is just too much for me to manage myself. This month there are three mortgage payments. I thought I was okay. Then a couple of expenses came along and suddenly I was concerned. Out of nowhere, a family member gave me a Christmas gift which would well cover that extra payment. I am so grateful. I am also grateful that he encouraged me to think of myself in the process, perhaps spending some of the money frivolously on myself, perhas a bottle of Scotch or some Rum. Perhaps both!
I had a couple of friends come over last night, as I said earlier. Ostensibly they were here to clean up some of the little things which have been bugging me for ages. One of these chores was to tidy up the wiring behind the TV. It was messed up. While he did cable clean, she got into the kitchen and helped me cut up some fruit for a fruit plate tomorrow. When the wiring was finished, we all tried to pitch in and figure out the dishwasher. It got late so we had to stop in the middle of things. That's what lead to the other friend coming this morning to finish the job.
Of course there are the many other people whe are here for me, checking to see that I am okay, making sure I will not be alone on Christmas. As it happens, my daughter Kate and her family will be here tomorrow for Christmas dinner. I am reminded once again that while there are times when I feel so alone, there really are lots of people around me, and those afar who help in their own way. I can keep going for a while, stop worrying for a while, focus on living for a while. This is as good as it gets for me; it's as good as it gets for anyone. Thank you all.Fr
Saturday, 23 December 2017
A Nap Is Never A Bad Thing
I understand why people give up. I understand why someone would just choose to stop living, then fade away either quickly or slowly. I can see how someone might stop eating, or even drinking, giving up the stuff of life because they are tired of living. I understand it; I even think about it some times.
Today is one of those days. The combination of pain, exhaustion, weariness; the feeling of pointlessness, of having no reason to keep going; I have those feelings some days. Today is one of them. I am certain that being tired is one of the most powerful reasons for giving up. If it's just too much, and you have no reason to keep going, why bother?
Fortunately for me, I both know that these days will pass, and have someone coming over in a couple of hours to help me around my apartment. One of my friends will come by. We will work on tidying up my TV cables and reconnecting things that are not working properly. Perhaps he will help me fix my dishwasher; it's not draining properly. Again.
Nevertheless, at this moment, right now, I just wish this was all over. The cruelty of a slow, tedious, crippling, humiliating death is far more than any one person should bear. Yet it is also a terrible thing for someone who loves you to bear. Perhaps it is good that I am alone, single, right now. This challenge can destroy relationships, turning lovers into nurses, turning partners into care givers. I don't want to do that to anyone. It's not fair.
So, today, I will just wait for company to come over. I will cut some fruit for a fruit plate. I will tidy the spare room. Perhaps I will even rack some wine, if I can. I will do something, anything, to take my mind off of my body, to focus on something which gives me pleasure, to be active. Or perhaps I will just sleep. After all, a nap is never a bad thing, unless you are driving.
Today is one of those days. The combination of pain, exhaustion, weariness; the feeling of pointlessness, of having no reason to keep going; I have those feelings some days. Today is one of them. I am certain that being tired is one of the most powerful reasons for giving up. If it's just too much, and you have no reason to keep going, why bother?
Fortunately for me, I both know that these days will pass, and have someone coming over in a couple of hours to help me around my apartment. One of my friends will come by. We will work on tidying up my TV cables and reconnecting things that are not working properly. Perhaps he will help me fix my dishwasher; it's not draining properly. Again.
Nevertheless, at this moment, right now, I just wish this was all over. The cruelty of a slow, tedious, crippling, humiliating death is far more than any one person should bear. Yet it is also a terrible thing for someone who loves you to bear. Perhaps it is good that I am alone, single, right now. This challenge can destroy relationships, turning lovers into nurses, turning partners into care givers. I don't want to do that to anyone. It's not fair.
So, today, I will just wait for company to come over. I will cut some fruit for a fruit plate. I will tidy the spare room. Perhaps I will even rack some wine, if I can. I will do something, anything, to take my mind off of my body, to focus on something which gives me pleasure, to be active. Or perhaps I will just sleep. After all, a nap is never a bad thing, unless you are driving.
Friday, 22 December 2017
Don't Do Drugs
I'm sleepy. I just finished a 2 hour nap. My sleepiness is, in part, due to my decision to stay up late last night, enjoying the company of a good friend along with a few glasses of rum and egg nog. I did not get my requisite beauty sleep of 12 hours, having so suffice with 10. It's not just the late night and ALS, however. The list of drugs I am on is getting longer and longer, and most of them list drowsiness and dizziness as side effects.
The worse was the Gentamycin. I ended with its notorious effects of vertigo and hearing loss. I wonder how long it will take for that to finally wear off. Perhaps it has gone as much as it will, with the other drugs making up for it. To combat the damage of the Gentamycin, I take Betahistine. Side effects are mild, only itching for me, although many people get a rash and stomach pain. Well, maybe I get the stomach pain too.
Of course there is the Ciprofloxacin I am on to combat my latest bladder infection. This powerful antibiotic is the same drug they use to treat Anthrax. For me the apparent side effects are limited and increase in the numbness, tingling, and the burning pain in my legs and feet, something which has existed for a long time, gettnig worse lately.
My newest medication is Gabapentin, ostensibly for the neuropathic in my legs and rear end. This stabbing, needle and fire pain can run wild one day yet be only mild or moderate today. This morning was bad; seemed the medication was doing anything at all. Common side effects of Gabapentin which I am dealing with are dizziness, drowsiness, and tiredness. It also may be adding to the swelling in my feet and pre-existing vision problems and coordination problems. I'm not sure if these last few are hitting me; I've been having problems with these things for a while.
The rest of the pharmacy I put in my body all have their own special effects, most commonly drowsiness. Not on that list is the Venlafaxine I take for the depression and congitive issues associated with ALS. It's side effects trouble with vision and increased bleeding with injuries.
There are more. Rivaroxaban to stop blood clots. Tamsulosin to increase urine flow. Ramapril to thin my blood and reduce heart problems. Metoprolol to stop me from stroking out. Zopiclone to help me sleep. Pantaloc for GERD. Each and every one of these medications have their own side effects, dizziness and drowsiness being fairly common. Some don't; they have their own special impacts. All of them do something in addition to their intended purpose.
So if I am tired, I get to blame late nights. I also get to blame ALS and the drugs. It doesn't really matter. I'm always tired. Only now I get dizziness to go with it. I've already given up driving, so I'm relatively safe. Now all I can say is "Don't do drugs, unless you have to."
The worse was the Gentamycin. I ended with its notorious effects of vertigo and hearing loss. I wonder how long it will take for that to finally wear off. Perhaps it has gone as much as it will, with the other drugs making up for it. To combat the damage of the Gentamycin, I take Betahistine. Side effects are mild, only itching for me, although many people get a rash and stomach pain. Well, maybe I get the stomach pain too.
Of course there is the Ciprofloxacin I am on to combat my latest bladder infection. This powerful antibiotic is the same drug they use to treat Anthrax. For me the apparent side effects are limited and increase in the numbness, tingling, and the burning pain in my legs and feet, something which has existed for a long time, gettnig worse lately.
The rest of the pharmacy I put in my body all have their own special effects, most commonly drowsiness. Not on that list is the Venlafaxine I take for the depression and congitive issues associated with ALS. It's side effects trouble with vision and increased bleeding with injuries.
There are more. Rivaroxaban to stop blood clots. Tamsulosin to increase urine flow. Ramapril to thin my blood and reduce heart problems. Metoprolol to stop me from stroking out. Zopiclone to help me sleep. Pantaloc for GERD. Each and every one of these medications have their own side effects, dizziness and drowsiness being fairly common. Some don't; they have their own special impacts. All of them do something in addition to their intended purpose.
So if I am tired, I get to blame late nights. I also get to blame ALS and the drugs. It doesn't really matter. I'm always tired. Only now I get dizziness to go with it. I've already given up driving, so I'm relatively safe. Now all I can say is "Don't do drugs, unless you have to."
Thursday, 21 December 2017
Blessing Or Curse
I've said before that there are things in my life, thanks to ALS, which are both blessings and curses, depending on how you look at them, in some cases quite literally. For example, the shades are drawn in the spare bedroom. Curse? I can't get my wheelchair past the end of the bed to open them, so the room stays dark all the time. Blessing? Thanks to the room being so dark, nobody can see how messy it is in that room unless they really look hard or turn on the light, something people rarely do.
Another visual element is also a blessing and a curse; the mirrors in my bedroom. The closet doors are mirror doors, reflecting the sunlight that comes in through my window, where the shades are not down. Even the effect of the small bedside light is amplified by the mirrors. Blessing? My bedroom is well lit most of the time, except on these, the darkest, shortest days of the year. Curse? That mirror gives me a horrifying view of my fully failed body every time I am in the sling, including a much unnecessary view of my lower anatomy, thanks to the bend in the sling.
Speaking of the sling, it too provides both a blessing and a curse, besides its base function of lifting me in and out of my bed. As many of you know, from reading or unfortunate actual experience, that sling positions my body such that my colon opens and my bowels release easily in the transit process. Curse? Obviously there are times, many times, when I don't want my bowels to release in transit, filling my pants with a stinky mess, or worse, depositing that mess on the floor beneath me.
Blessing? It may be hard to believe, but there are times when opening my lower end is exactly what I want to have happen. Often I am "lightly constipated". I'm not actually constipated; it's just that my core muscles are not strong enough to perform their required function. Putting me in the sling means I can fulfill that function with minimal muscle effort. It's easy to poop in the sling. Curse? Obviously the accidental poop is a curse, but there is another one even worse. When combined with the mirror reflecting that area of my anatomy, I get a full view of the bodily process when nobody really wants to see, not even the originator.
I have come to accept most of the things that curse my life thanks to ALS, even the terrible view when I am in the sling. My body has failed me. That's a fact. However what I can still do is allow myself to see the blessings in the midst of these curses. I have light in my room. I can get an interesting anatomical and bioligic view of myself daily, reminding me that I still have a body and parts of it still work. It's all in my point of view, blessing or curse.
Another visual element is also a blessing and a curse; the mirrors in my bedroom. The closet doors are mirror doors, reflecting the sunlight that comes in through my window, where the shades are not down. Even the effect of the small bedside light is amplified by the mirrors. Blessing? My bedroom is well lit most of the time, except on these, the darkest, shortest days of the year. Curse? That mirror gives me a horrifying view of my fully failed body every time I am in the sling, including a much unnecessary view of my lower anatomy, thanks to the bend in the sling.
Speaking of the sling, it too provides both a blessing and a curse, besides its base function of lifting me in and out of my bed. As many of you know, from reading or unfortunate actual experience, that sling positions my body such that my colon opens and my bowels release easily in the transit process. Curse? Obviously there are times, many times, when I don't want my bowels to release in transit, filling my pants with a stinky mess, or worse, depositing that mess on the floor beneath me.
Blessing? It may be hard to believe, but there are times when opening my lower end is exactly what I want to have happen. Often I am "lightly constipated". I'm not actually constipated; it's just that my core muscles are not strong enough to perform their required function. Putting me in the sling means I can fulfill that function with minimal muscle effort. It's easy to poop in the sling. Curse? Obviously the accidental poop is a curse, but there is another one even worse. When combined with the mirror reflecting that area of my anatomy, I get a full view of the bodily process when nobody really wants to see, not even the originator.
I have come to accept most of the things that curse my life thanks to ALS, even the terrible view when I am in the sling. My body has failed me. That's a fact. However what I can still do is allow myself to see the blessings in the midst of these curses. I have light in my room. I can get an interesting anatomical and bioligic view of myself daily, reminding me that I still have a body and parts of it still work. It's all in my point of view, blessing or curse.
Wednesday, 20 December 2017
Snow Danger
It snowed last night. Actually it started snowing at about noon yesterday and kept on snowing will past midnight. I know because I was up at midnight, waiting for the nurse who was taking the place of Kabira, my regular HCA. Unfortunately the snow, pretty as it was to watch, created danger for Kabira; she had a car accident. She was unhurt, but thanks to the accident she was unable to attend at my place for my regular evening care.
I was very upset when I got the call about Kabira. My concern was not about myself at all, but about her. Was she hurt? How bad was the accident? Will she be off work at all? As it turns out, she was not hurt at all and will be right back on track on Friday, after her regular two days off. Now I get to be a bit selfish, thankful that she will be here on schedule, here as planned. I depend on her, and the other HCA's, for the kind, quality care that I recieve consistently from them.
The whole incident reminded me once again how quickly these care workers become integrated into my daily life, how my concern for their well-being so quickly matches their concern for my well-being. I talk about them as a part of a team, my team, the team that works together even though they rarely meet, the team that keeps me going.
Today I'm staying indoors, intentionally. I have laundry to fold. I have mail to pick up. I could attempt one of those many things I can't ask an HCA to do, like cleaning out the fridge. Or I could just do nothing, take a rest, let the pain in my legs subside, sleep. For sure I am going to be grateful for the care I get, and that Kabira is okay. Snow is lovely to look at, but it carries its own dangers.
I was very upset when I got the call about Kabira. My concern was not about myself at all, but about her. Was she hurt? How bad was the accident? Will she be off work at all? As it turns out, she was not hurt at all and will be right back on track on Friday, after her regular two days off. Now I get to be a bit selfish, thankful that she will be here on schedule, here as planned. I depend on her, and the other HCA's, for the kind, quality care that I recieve consistently from them.
The whole incident reminded me once again how quickly these care workers become integrated into my daily life, how my concern for their well-being so quickly matches their concern for my well-being. I talk about them as a part of a team, my team, the team that works together even though they rarely meet, the team that keeps me going.
Today I'm staying indoors, intentionally. I have laundry to fold. I have mail to pick up. I could attempt one of those many things I can't ask an HCA to do, like cleaning out the fridge. Or I could just do nothing, take a rest, let the pain in my legs subside, sleep. For sure I am going to be grateful for the care I get, and that Kabira is okay. Snow is lovely to look at, but it carries its own dangers.
Tuesday, 19 December 2017
Egg Nog On The Carpet
I'm resting my left arm heavily on the pad of my laptop while I type, my right arm too, although not as much. This happenstance is due to my continuing loss of strength in my arms, my left more affected than my right. It is one of the oddities of this illness that I continue to have excellent fine motor control within my fingers while my arms collapse, their strength falling off a cliff.
This kind of loss leads to lots of unusual kinds of problems, situations where one would not expect to need a call for help. Today I wanted to get over to Safeway before writing, to pick up a few things I could not get at Costco or won't buy in supersize. Getting their early in the day was important. The snow is on its way; it began falling at around noon, about the same time as my day began.
I braved the elements, made my way across the street, purchased all my groceries, then came home, all rather uneventfully except for that final slide down the ramp to my garage. Even that was done at low speed, more fun than fear. It was when I got inside my apartment that the true fun began. I came in, moved the big basket with major items sideways off my lap and onto the counter. A break was in order after that effort, so I took a rest as well as taking a moment to check on something in the spare bedroom.
That was when disaster struck.
As I backed out of the bedroom door, I misjudged the door frame, crunching into it, not with my wheelchair but with the bag of groceries still hanging from the left handle of my power wheelchair, the bag of groceries containing my two 2L cartons of egg nog. In fact one of those cartons was the origin of the crunching sound I mentioned a moment ago.
As I repositioned to go into the kitchen where I planned to retrieve the contents out of my shopping bag one at a time, something I can almost still do with my left arm, I noticed a large spill of egg nog all round my wheelchair, on both the bedroom carpet at the doorway as well as in the entryway and hall. I reached round and grabbed the offending carton, removing it from the bag, then driving into the kitchen where I could put it on the counter. Of course the roll into the kitchen meant egg nog all along the floor as I travelled.
Once I get into the kitchen I attempted to remove the shopping bag extant. It was still too heavy for my left arm. So I went with my original place, to remove the articles contained therein one at a time. Except now they were covered with slick, slippery egg nog. I was unable to pick up the other egg nog, nor was I able to retrieve them jug of milk or whatever else was in that bag.
It was at this point I realised I was stumped. I had choice; it's just that none of my choices were good ones. I could just leave the bag and its contents in place until 6:15 PM when my dinner company is expected, asking them to help me clean up the mess. I could attempt some sort of contortion in my wheelchair to get a better grip on things, perhaps leaning backwards to let the bag rest on the floor, releasing the pull weight holding it to the chair, allowing me to clean up from there. Or I could call my elderly neighbours down the hall, the ones struggling with arthritis and Alzheimer's.
I went with calling the neighbours. Pat and Paul showed up a moment later. Pat, ever the organiser, took over the scene, handing Paul a mop with which he began cleanup. Alas Paul's Alzheimer's took over at this point, leaving him to forget water in the mop bucket. The mop itself was damp enough, and the egg fluid enough, that he did managed to soak up the mess. Pat, in the mean time, had taken the bag with the damaged goods and transferred it to the counter, including pouring what remained in the egg nog carton into a jug.
Now all I am left with is the ask of re-wiping the floor, putting away the groceries, and wiping down the counters. While this is still a substantial bit of work for me, I can only imagine with some degree of dread how much it would have taken out of me to tackle this current disaster without the help of my 75 and 87 year old neighbours. It's not the blind leading the blind. It's the frail helping the frail.
For those of you who think I should ask Home Care to help, recall that the HCA for these tasks won't be here until tomorrow morning, meaning sticky floors all night. On top of this, Home Care doesn't wash carpets, nor do I have a carpet cleaner of my own. The remnants tasks are mine to do; I will do them. It's just going to take a while.
This kind of loss leads to lots of unusual kinds of problems, situations where one would not expect to need a call for help. Today I wanted to get over to Safeway before writing, to pick up a few things I could not get at Costco or won't buy in supersize. Getting their early in the day was important. The snow is on its way; it began falling at around noon, about the same time as my day began.
I braved the elements, made my way across the street, purchased all my groceries, then came home, all rather uneventfully except for that final slide down the ramp to my garage. Even that was done at low speed, more fun than fear. It was when I got inside my apartment that the true fun began. I came in, moved the big basket with major items sideways off my lap and onto the counter. A break was in order after that effort, so I took a rest as well as taking a moment to check on something in the spare bedroom.
That was when disaster struck.
As I backed out of the bedroom door, I misjudged the door frame, crunching into it, not with my wheelchair but with the bag of groceries still hanging from the left handle of my power wheelchair, the bag of groceries containing my two 2L cartons of egg nog. In fact one of those cartons was the origin of the crunching sound I mentioned a moment ago.
As I repositioned to go into the kitchen where I planned to retrieve the contents out of my shopping bag one at a time, something I can almost still do with my left arm, I noticed a large spill of egg nog all round my wheelchair, on both the bedroom carpet at the doorway as well as in the entryway and hall. I reached round and grabbed the offending carton, removing it from the bag, then driving into the kitchen where I could put it on the counter. Of course the roll into the kitchen meant egg nog all along the floor as I travelled.
Once I get into the kitchen I attempted to remove the shopping bag extant. It was still too heavy for my left arm. So I went with my original place, to remove the articles contained therein one at a time. Except now they were covered with slick, slippery egg nog. I was unable to pick up the other egg nog, nor was I able to retrieve them jug of milk or whatever else was in that bag.
It was at this point I realised I was stumped. I had choice; it's just that none of my choices were good ones. I could just leave the bag and its contents in place until 6:15 PM when my dinner company is expected, asking them to help me clean up the mess. I could attempt some sort of contortion in my wheelchair to get a better grip on things, perhaps leaning backwards to let the bag rest on the floor, releasing the pull weight holding it to the chair, allowing me to clean up from there. Or I could call my elderly neighbours down the hall, the ones struggling with arthritis and Alzheimer's.
I went with calling the neighbours. Pat and Paul showed up a moment later. Pat, ever the organiser, took over the scene, handing Paul a mop with which he began cleanup. Alas Paul's Alzheimer's took over at this point, leaving him to forget water in the mop bucket. The mop itself was damp enough, and the egg fluid enough, that he did managed to soak up the mess. Pat, in the mean time, had taken the bag with the damaged goods and transferred it to the counter, including pouring what remained in the egg nog carton into a jug.
Now all I am left with is the ask of re-wiping the floor, putting away the groceries, and wiping down the counters. While this is still a substantial bit of work for me, I can only imagine with some degree of dread how much it would have taken out of me to tackle this current disaster without the help of my 75 and 87 year old neighbours. It's not the blind leading the blind. It's the frail helping the frail.
For those of you who think I should ask Home Care to help, recall that the HCA for these tasks won't be here until tomorrow morning, meaning sticky floors all night. On top of this, Home Care doesn't wash carpets, nor do I have a carpet cleaner of my own. The remnants tasks are mine to do; I will do them. It's just going to take a while.
Monday, 18 December 2017
I Need A Minion
There are all kinds of things bugging me in my apartment, things which need doing that I can no longer do, things which Home Care will not do, things which would make sense to some people and make no sense to others, things that I would do in a moment were it not for the ravages of ALS. These things range from the ridiculously simple, like picking up things that have fallen behind the couch, to full on chores, like emptying and cleaning my fridge.
The problem is that I feel guilty about asking people to do these things for me, and even worse when I want to micro-manage the process. Recently one of my friends was making nachos in the kitchen. I started saying how I wanted the cheese spread and used up. She got upset, left the kitchen, and told me if I wanted them done my way then I should do them. I completely understand that sentiment. So I tried my best, and only spilled about a third of them when I put the cookie sheet in the oven.
So when I look at my towels, disconcerted because they are not arranged the way I like them, I have little I can do or say. I don't have the strength to rearrange my towel cupboard everytime someone puts towels away in a fashion I don't like, nor can I sustain the awkward guilt that goes with asking someone to rearrange my towels for me just the way I like them. When I look at my pantry, I see things where I would like them tidier and more orderly, but to have that happen I need someone who either shares my sense of orderliness, or is willing to put up with me specifically directing the placement of each and every item.
This might seem a silly frustration in many ways. People help me. Towels get put away. Groceries go in the pantry. The fridge is, well, the fridge needs work. The real frustration lies in the enforced reality of not being able to do things for myself, the way I want them. If you don't like the way the books are on your bookshelf, you move them. If I don't like it, I have to lump it. If you don't like the way the cannisters are arranged on your counter, you rearrange them. If I don't like it, I have to lump if. If you don't... I think you might be getting the drift at this point. You pick it, you do it. With ALS, I just have to put up with all the little things which drive me crazy and make me upset.
If you want real, true distress, sit yourself in a chair for a day. Then, every time you want to do something, anything, ask someone else to do it for you. Don't get out of that chair, ever. Don't make anything, do anything, eat anything, drink anything, tidy anything, organizae anything unless you can do it while staying in that chair, and do it without lifting your arms past the armrests. Yes, you do get armrests. After all, you can't hold up your arms all day, can you?
What I need is a minion, someone who will unquestioningly do as I say when it comes to picking up, tidying up, organizing, cleaning. I need someone who will willingly be my hands and arms, not refuting how I want things, nor doing things they way they think is best but instead doing them as I ask, not because my way is better or worse, but because it matters to me. And that God damned cushion is still behind the couch!
The problem is that I feel guilty about asking people to do these things for me, and even worse when I want to micro-manage the process. Recently one of my friends was making nachos in the kitchen. I started saying how I wanted the cheese spread and used up. She got upset, left the kitchen, and told me if I wanted them done my way then I should do them. I completely understand that sentiment. So I tried my best, and only spilled about a third of them when I put the cookie sheet in the oven.
So when I look at my towels, disconcerted because they are not arranged the way I like them, I have little I can do or say. I don't have the strength to rearrange my towel cupboard everytime someone puts towels away in a fashion I don't like, nor can I sustain the awkward guilt that goes with asking someone to rearrange my towels for me just the way I like them. When I look at my pantry, I see things where I would like them tidier and more orderly, but to have that happen I need someone who either shares my sense of orderliness, or is willing to put up with me specifically directing the placement of each and every item.
This might seem a silly frustration in many ways. People help me. Towels get put away. Groceries go in the pantry. The fridge is, well, the fridge needs work. The real frustration lies in the enforced reality of not being able to do things for myself, the way I want them. If you don't like the way the books are on your bookshelf, you move them. If I don't like it, I have to lump it. If you don't like the way the cannisters are arranged on your counter, you rearrange them. If I don't like it, I have to lump if. If you don't... I think you might be getting the drift at this point. You pick it, you do it. With ALS, I just have to put up with all the little things which drive me crazy and make me upset.
If you want real, true distress, sit yourself in a chair for a day. Then, every time you want to do something, anything, ask someone else to do it for you. Don't get out of that chair, ever. Don't make anything, do anything, eat anything, drink anything, tidy anything, organizae anything unless you can do it while staying in that chair, and do it without lifting your arms past the armrests. Yes, you do get armrests. After all, you can't hold up your arms all day, can you?
What I need is a minion, someone who will unquestioningly do as I say when it comes to picking up, tidying up, organizing, cleaning. I need someone who will willingly be my hands and arms, not refuting how I want things, nor doing things they way they think is best but instead doing them as I ask, not because my way is better or worse, but because it matters to me. And that God damned cushion is still behind the couch!
Sunday, 17 December 2017
You Know Who You Are
The drugs are working. While I am far from feeling well, I am certainly getting better. The general exhaustion is lessening, as is the dizziness. I ate something this morning, a task I could not accomplish last night or yesterday morning, beyond a couple of slices of toast. I am slowly picking away at the remnant charcuterie from last night's party.
It was quite a party, too. Tonny contacted everybody; I didn't worry even the slightest about who was or was not going to be here. In fact when he offered to tell me who had responded yes, I said "Don't tell me. This is your gig." Bobbi arrived early, early enough to help me get the ham into the oven. She did an amazing job with the glaze; she herself declared it to be "very good". Tonny arrived and the others followed lickety split. Suddenly my home was filled with life and people. I was happy, even though still battling a terrible infection.
The only really difficult part of the evening came when we transferred me to the couch, and promptly yarded my catheter off, issuing a stream of urine all over my nether regions. It's so funny in a way. Everyone else seemed to take this as a kind of a non-event, like, "Richard pee'd on himself again? So what's new about that?" We then had a group debate as to whether I should try to re-catherize myself, a process prone to failure when I do it, or just use towels a soaker pads for the rest of the evening. One of my friends, a nurse by profession, even offered to help with the catheter attachment. I declined.
In the end, I decided to try to re-catherize, a task taking some 20 or so minutes, far longer than when the HCA's do it. I was only partly successful. It held for a bit, but I didn't get the tube for the bag properly attached. That's why it's important for me to do this laying down, or at least bent at a low angle. So it was back to towels, my small towels purchased just for this purpose, to use as soakers.
Nobody noticed. Nobody cared, Nobody said anything. The only mention was around the timing for my evening Home Care to arrive. As it ended up, the HCA arrived at almost 10:00 PM. Kabira, the HCA, confessed that she came late to give me more time with friends at the party. Her arrive signalled the winding up of things, although people were still tidying and putting away for a while afterwards. Anisa even folded my laundry!
It was a great party, made even better by the friends around me, not just those in attendance but those who couldn't attend yet are with me in so many other ways, helping constantly. I don't know if I will ever really get over my wonderment and joy with them. You know who you are. Thank you.
It was quite a party, too. Tonny contacted everybody; I didn't worry even the slightest about who was or was not going to be here. In fact when he offered to tell me who had responded yes, I said "Don't tell me. This is your gig." Bobbi arrived early, early enough to help me get the ham into the oven. She did an amazing job with the glaze; she herself declared it to be "very good". Tonny arrived and the others followed lickety split. Suddenly my home was filled with life and people. I was happy, even though still battling a terrible infection.
The only really difficult part of the evening came when we transferred me to the couch, and promptly yarded my catheter off, issuing a stream of urine all over my nether regions. It's so funny in a way. Everyone else seemed to take this as a kind of a non-event, like, "Richard pee'd on himself again? So what's new about that?" We then had a group debate as to whether I should try to re-catherize myself, a process prone to failure when I do it, or just use towels a soaker pads for the rest of the evening. One of my friends, a nurse by profession, even offered to help with the catheter attachment. I declined.
In the end, I decided to try to re-catherize, a task taking some 20 or so minutes, far longer than when the HCA's do it. I was only partly successful. It held for a bit, but I didn't get the tube for the bag properly attached. That's why it's important for me to do this laying down, or at least bent at a low angle. So it was back to towels, my small towels purchased just for this purpose, to use as soakers.
Nobody noticed. Nobody cared, Nobody said anything. The only mention was around the timing for my evening Home Care to arrive. As it ended up, the HCA arrived at almost 10:00 PM. Kabira, the HCA, confessed that she came late to give me more time with friends at the party. Her arrive signalled the winding up of things, although people were still tidying and putting away for a while afterwards. Anisa even folded my laundry!
It was a great party, made even better by the friends around me, not just those in attendance but those who couldn't attend yet are with me in so many other ways, helping constantly. I don't know if I will ever really get over my wonderment and joy with them. You know who you are. Thank you.
Saturday, 16 December 2017
Another Infection
I have another bladder infection, a serious one, unfortunately most likely one brought on by using the in/out catheters. The doctor in the hospital warned me this might happen. The doctor at the walk in clinic I saw yesterday thought it was likely as well. It all has to do with cleanliness while handling me and the catheter.
I am definitely not saying my Health Care Aides are not clean, they are very good about keeping me clean. However their protocol for catheterization is slightly different than the one provided by the doctor in the hospital, most notably around handing my penis during cleaning. The have a habit of cleaning me up, them letting go of things while they prepare for the next step. Unfortunately this has the effect of re-contaminating me right after decontaminating me. The bacteria gets cleaned off; the bacteria gets back on.
What I am doing is providing the HCA's with the protocol to read, the one provided by the hospital, and then insisting they do exactly what that protocol lays out as the process. Not only does it specify a process which ensures there is no re-contamination, it also says to use soap and water for cleaning, not the wet wips they seem so fond of.
So here I sit, drained for the day, hopefully not re-infected. I'm sore. I'm sweaty thanks to my fever. I\m tired. And I have a Christmas party here at my home tonight. Thank goodness my friends are looking after the work of it all. My job today will simply be to act as a guest, and rest in my wheelchair. I can do that.
I am definitely not saying my Health Care Aides are not clean, they are very good about keeping me clean. However their protocol for catheterization is slightly different than the one provided by the doctor in the hospital, most notably around handing my penis during cleaning. The have a habit of cleaning me up, them letting go of things while they prepare for the next step. Unfortunately this has the effect of re-contaminating me right after decontaminating me. The bacteria gets cleaned off; the bacteria gets back on.
What I am doing is providing the HCA's with the protocol to read, the one provided by the hospital, and then insisting they do exactly what that protocol lays out as the process. Not only does it specify a process which ensures there is no re-contamination, it also says to use soap and water for cleaning, not the wet wips they seem so fond of.
So here I sit, drained for the day, hopefully not re-infected. I'm sore. I'm sweaty thanks to my fever. I\m tired. And I have a Christmas party here at my home tonight. Thank goodness my friends are looking after the work of it all. My job today will simply be to act as a guest, and rest in my wheelchair. I can do that.
Friday, 15 December 2017
It's Never Just One Thing
I didn't write yesterday. Instead, I slept, spending the whole of the day laying in my bed, snoozing on and off, seriously sleeping at times. I did very little until my evening HCA came in at 9:30 PM. She was shocked, concerned that I had put myself to bed early because she was five minutes late. I let her off that hook right away. All that happened when she was here was the removal of my external catheter, a poor job a draining my bladder, and then back to sleep, only this time wearing a diaper instead of a catheter. I didn't need it; all things worked well last night.
I wish I could say that more often. Today my vertigo is super aggressive; the smallest move turns the world into a drunken dance without the benefit of alcohol. It leaves me pretty much constantly nauseous. This is now a daily thing, where some point of my day will be destroyed by vertigo, nothwithstanding the medication. I wish it were the only thing. Between the vertigo, the constant tiredness, the pain in my back and butt, the troubles with catheters. and the continual atrophy, I just can't seem to get a break from this disease.
What's worse, right now, is I feel like I am gettting sick again. I am going to the walk in clinic today to get a requisition for a urine test and blood test. My guess is that it will show a mild infection once again. It will mean another round of antibiotics, if the tests prove positive for infection, even a low grade infection.
My hope in sleeping all day yesterday was that I might wake up with some level of renewed energy, some sense of capacity, even the smallest willingness to take on a task or two. Alas it did not work out that way. I'm still tired, sleepy as can be. No new energy has found its way into my body. I'm beginning to think I'm reaching a new low level of phsical ability. Or maybe its another infection. Who the hell knows? Maybe both.
I wish I could say that more often. Today my vertigo is super aggressive; the smallest move turns the world into a drunken dance without the benefit of alcohol. It leaves me pretty much constantly nauseous. This is now a daily thing, where some point of my day will be destroyed by vertigo, nothwithstanding the medication. I wish it were the only thing. Between the vertigo, the constant tiredness, the pain in my back and butt, the troubles with catheters. and the continual atrophy, I just can't seem to get a break from this disease.
What's worse, right now, is I feel like I am gettting sick again. I am going to the walk in clinic today to get a requisition for a urine test and blood test. My guess is that it will show a mild infection once again. It will mean another round of antibiotics, if the tests prove positive for infection, even a low grade infection.
My hope in sleeping all day yesterday was that I might wake up with some level of renewed energy, some sense of capacity, even the smallest willingness to take on a task or two. Alas it did not work out that way. I'm still tired, sleepy as can be. No new energy has found its way into my body. I'm beginning to think I'm reaching a new low level of phsical ability. Or maybe its another infection. Who the hell knows? Maybe both.
Wednesday, 13 December 2017
I Like Clean Underwear
Who would have thought that the act of transferring half a basket of wet laundry from the washing machine into the dryer would have become such a Herculean task? It's almost of epic proportions these days, what with limited abilities and weakened arms. Today I tried to get it done. With some leveraging of a grabby stick and positioning of the laundry basked, I managed to dump the laundry into the dryer. At one point, however, I was fairly certain I would have to ask for help.
In fact I do often as for help with laundry these days. More and more, my Health Care Aides are doing this task for me. They take the laundry down the hall, load and start the wash, and when that's done they transfer it to the dryer. Most time I can take it from there, but some days the are here long enough to retrieve, if not fold it. Today the schedule was screwed up thanks to the Coordinators who don't coordinate for my home care agency provider, and someone using the dryers longer than necessary.
I have a kind of personal policy around this. I would prefer to leave someones laundry in whatever machine it is in, rather than taking it out so I can use the machine. I feel it is a kind of intrusion into privacy to handle some strangers clothing and intimate items. It just seems better to wait a bit, rather than rush the issue by unloading laundry and leaving it on the top of the machine while I go ahead and do mine. I am just not in that kind of rush.
Sadly, this policy may have to change soon, especially in light of my increasing limitations. I will soon have to depend on the HCA's to do all parts of the process, or ask someone else to help me if and HCA runs out of time. In some cases I may have to ask someone to come over and help me finish the process, meaning my own laundry could concievably sit in the machine for hours as I wait.
Who would have thought that one of the defining moments of my independence would come down to having clean underwear? It seems a bit unfair, doesn't it?
In fact I do often as for help with laundry these days. More and more, my Health Care Aides are doing this task for me. They take the laundry down the hall, load and start the wash, and when that's done they transfer it to the dryer. Most time I can take it from there, but some days the are here long enough to retrieve, if not fold it. Today the schedule was screwed up thanks to the Coordinators who don't coordinate for my home care agency provider, and someone using the dryers longer than necessary.
I have a kind of personal policy around this. I would prefer to leave someones laundry in whatever machine it is in, rather than taking it out so I can use the machine. I feel it is a kind of intrusion into privacy to handle some strangers clothing and intimate items. It just seems better to wait a bit, rather than rush the issue by unloading laundry and leaving it on the top of the machine while I go ahead and do mine. I am just not in that kind of rush.
Sadly, this policy may have to change soon, especially in light of my increasing limitations. I will soon have to depend on the HCA's to do all parts of the process, or ask someone else to help me if and HCA runs out of time. In some cases I may have to ask someone to come over and help me finish the process, meaning my own laundry could concievably sit in the machine for hours as I wait.
Who would have thought that one of the defining moments of my independence would come down to having clean underwear? It seems a bit unfair, doesn't it?
Tuesday, 12 December 2017
Weakening Arms
I forgot to ask my Health Care Aide to put my shoes on for me today. Thus I have no shoes on my feet, and I am thinking of going outside. It's not tremendously cold today, but once you add in the chill factor of me rolling along in my wheelchair at top speed, you can see how shoes can make a difference, if only to cut the wind.
The real problem is I am not longer able to put on my own shoes without great difficulty and a fair bit of luck. I've tried and failed several times recently. Thus, in my current situation, I am compelled either to go without shoes, chilling my feet substantially, or to ask for help from one of my neighbours, several of whom have helped in in the past with this predicament.
Unfortunately this is one of a number of things which have been lost to me of late, that ability to put on shoes. As my arms fail in earnest, more and more things are becoming too difficult for me to handle. Rolling over in bed is another of these normal things which is becoming near impossible. Yes, I can still do it. No, it is not easy. Sometimes I try and just give up after too much exertion. Most times I work like hell to get it done.
Then there is the continuing loss of ability to pick things up, especially things weighing anything more than a few ounces. Last night, after successfully using my urinal, it was so full I could barely lift it over to the dresser. I worried about dropping it, spilling the contents all over the floor. It's happened in the past; it will certainly happen in the future.
Making and eating a decent dinner is also becoming problematic. Eating is no challenge from a chewing or swallowing perspective. It's using a fork, without spilling, that is the issue. I can hold the fork just fine, but there are moments, fleeting as of yet, where picking it up when loaded with even the smallest amount of food causes sufficient shaking as to empty the contents thereon. As to cooking, it is difficult for me to lift things on and off the stove, in and out of the oven. It is almost impossible for me to stir and blend on the stove, unless I lift my wheelchair up to the point where the required actions take on a downhill slope. Then it gets easier.
Picking things up off the floor is impossible now unless I use a grabby stick. If I lean over in my wheelchair there is a substantial possibility that I will not be able to upright myself. It's happened a few times now where the only way I could get vertical again is by using various bits of furniture to pull myself back up after leaning over. At some point in the not too distant future it will become impossible.
Showering is becoming difficult as well, at least that part where I have to lift my arms. It means lathering and rinsing my scalp is a genuine chore, requiring all the limited strength I have to get my arms and hands up there, to pick up the shampoo bottle, to push down the dispenser handle, to move my hands without support. I am still moderately able, but the end is in sight.
There are so many more small things, things you don't think about until you have to do them, things which I have done as normal course since I was a small child. Using the remote control, holding my cell phone up while talking, reaching for things on a shelf, pouring a glass of wine from a full bottle; these are either lost to me now or quickly passing from view. All of this because my arm muscles are failing, struck with atrophy, thin and frail, both pain and limitation striking me, stealing my abilities. This is, once again, life with ALS.
The real problem is I am not longer able to put on my own shoes without great difficulty and a fair bit of luck. I've tried and failed several times recently. Thus, in my current situation, I am compelled either to go without shoes, chilling my feet substantially, or to ask for help from one of my neighbours, several of whom have helped in in the past with this predicament.
Unfortunately this is one of a number of things which have been lost to me of late, that ability to put on shoes. As my arms fail in earnest, more and more things are becoming too difficult for me to handle. Rolling over in bed is another of these normal things which is becoming near impossible. Yes, I can still do it. No, it is not easy. Sometimes I try and just give up after too much exertion. Most times I work like hell to get it done.
Then there is the continuing loss of ability to pick things up, especially things weighing anything more than a few ounces. Last night, after successfully using my urinal, it was so full I could barely lift it over to the dresser. I worried about dropping it, spilling the contents all over the floor. It's happened in the past; it will certainly happen in the future.
Making and eating a decent dinner is also becoming problematic. Eating is no challenge from a chewing or swallowing perspective. It's using a fork, without spilling, that is the issue. I can hold the fork just fine, but there are moments, fleeting as of yet, where picking it up when loaded with even the smallest amount of food causes sufficient shaking as to empty the contents thereon. As to cooking, it is difficult for me to lift things on and off the stove, in and out of the oven. It is almost impossible for me to stir and blend on the stove, unless I lift my wheelchair up to the point where the required actions take on a downhill slope. Then it gets easier.
Picking things up off the floor is impossible now unless I use a grabby stick. If I lean over in my wheelchair there is a substantial possibility that I will not be able to upright myself. It's happened a few times now where the only way I could get vertical again is by using various bits of furniture to pull myself back up after leaning over. At some point in the not too distant future it will become impossible.
Showering is becoming difficult as well, at least that part where I have to lift my arms. It means lathering and rinsing my scalp is a genuine chore, requiring all the limited strength I have to get my arms and hands up there, to pick up the shampoo bottle, to push down the dispenser handle, to move my hands without support. I am still moderately able, but the end is in sight.
There are so many more small things, things you don't think about until you have to do them, things which I have done as normal course since I was a small child. Using the remote control, holding my cell phone up while talking, reaching for things on a shelf, pouring a glass of wine from a full bottle; these are either lost to me now or quickly passing from view. All of this because my arm muscles are failing, struck with atrophy, thin and frail, both pain and limitation striking me, stealing my abilities. This is, once again, life with ALS.
Monday, 11 December 2017
It's About Quality Of Life
It has been once again suggested that I might move closer to my children if I want to see them more often. Prima facie that seems like a sound idea. Alas, it's the devil in the details that throw a spanner in the works. Were I able to move there while retaining all I have built here in Calgary, that would be wonderful. Alas, I cannot. As with any change, there are things to be gained and things to be left behind. There are several areas where this is true for me, several challenges which make any sort of move extremely difficult.
First there is the housing issue. I have a wheelchair accessible apartment directly across the street from a major shopping center and immediately beside a city transit stop. To sell my place here and move to Abbotsford would entail spending at least another $50,000 to $250,000 for an apartment there. Renting is no better; there are absolutely no accessible apartments for rent anywhere in the Greater Vancouver or Fraser Valley regions, no matter what the price.
I could go into a home, but it would mean going into a government facility, one where I would get no choice as to where I live. I could conceivably be place in a location even farther away from my children, like Prince Rupert! In addition, government home care facilities are notorious for their poor quality of care, be it in BC or Alberta.
Secondly, I would be moving from a province which, although not tops in general health care, is a world leader in the field of ALS. My own neurologist is currently leading one of the most innovative and hopeful studies for a drug to treat this horrible disease. The only ALS clinic in the Vancouver region is in downtown Vancouver, more than an hour from Abbotsford with no availability of transportation to and from. My medical care would be worse. My Home Care would be more costly. My quality of life would suffer substantially.
Thirdly, my financial situation would take a real hit. BC provides far lower assistance levels for people with disabilities such as mine. While not generous by any stretch, Alberta's AISH supplement provides me with a few hundred dollars more each month as opposed to the BC supplement. My quality of life would suffer substantially.
Fourth, the general cost of living in BC, especially anywhere near Vancouver, is much higher. You would need around 5,863.36C$ in Vancouver to maintain the same standard of life that you can have with 5,000.00C$ in Calgary (assuming you rent in both cities). That, in addition to the drop in financial support, would really put me behind, seriously impacting my quality of life.
On top of all of these things, I have built a pretty strong support network here in Calgary. That defnitely would not follow me to BC. I would move to a place far away from friends, except for those who live in BC. It would be unlikely that I would live close to my children; more likely I would still find myself a distance away.
While I am unhappy about not seeing my children or grandchildren as much as I would like, the bottom line is that relocating would simply be too costly and would most likely end with a reduced quality of life, and possibly even a shorter life span. I complain, but I am not likely to change anything.
First there is the housing issue. I have a wheelchair accessible apartment directly across the street from a major shopping center and immediately beside a city transit stop. To sell my place here and move to Abbotsford would entail spending at least another $50,000 to $250,000 for an apartment there. Renting is no better; there are absolutely no accessible apartments for rent anywhere in the Greater Vancouver or Fraser Valley regions, no matter what the price.
I could go into a home, but it would mean going into a government facility, one where I would get no choice as to where I live. I could conceivably be place in a location even farther away from my children, like Prince Rupert! In addition, government home care facilities are notorious for their poor quality of care, be it in BC or Alberta.
Secondly, I would be moving from a province which, although not tops in general health care, is a world leader in the field of ALS. My own neurologist is currently leading one of the most innovative and hopeful studies for a drug to treat this horrible disease. The only ALS clinic in the Vancouver region is in downtown Vancouver, more than an hour from Abbotsford with no availability of transportation to and from. My medical care would be worse. My Home Care would be more costly. My quality of life would suffer substantially.
Thirdly, my financial situation would take a real hit. BC provides far lower assistance levels for people with disabilities such as mine. While not generous by any stretch, Alberta's AISH supplement provides me with a few hundred dollars more each month as opposed to the BC supplement. My quality of life would suffer substantially.
Fourth, the general cost of living in BC, especially anywhere near Vancouver, is much higher. You would need around 5,863.36C$ in Vancouver to maintain the same standard of life that you can have with 5,000.00C$ in Calgary (assuming you rent in both cities). That, in addition to the drop in financial support, would really put me behind, seriously impacting my quality of life.
On top of all of these things, I have built a pretty strong support network here in Calgary. That defnitely would not follow me to BC. I would move to a place far away from friends, except for those who live in BC. It would be unlikely that I would live close to my children; more likely I would still find myself a distance away.
While I am unhappy about not seeing my children or grandchildren as much as I would like, the bottom line is that relocating would simply be too costly and would most likely end with a reduced quality of life, and possibly even a shorter life span. I complain, but I am not likely to change anything.
Sunday, 10 December 2017
It's All Too Much
There are some days, or more specifically, some moments in some days, where I just feel like giving up, like crawling into bed and staying there, or curling up in a ball like an armadillo hoping not to get crushed or destroyed by the predatorial nature of life itself. There was an event yesterday which did that to me, where I ended up feeling so bad, so incapable of living my life, that I just wanted to give it all up.
I was supposed to go to a Christmas party last night. Supposed to go. I ended up not going, basically for one reason and one reason alone. I am in a wheelchair. The wheelchair itself is not so much the issue as the concomittent effects of being in a wheelchair.
First, the back story. My friend Mike does not have a ramp at his place. However when he has a party and I can go, he gets a collection of the men there to lift me up his front stairs, wheelchair and all. What this means, however, is that to go to a party at his place, I am compelled to use my manual wheelchair, something which is becoming increasingly difficult. Nonetheless, I can do it.
The second actor in this play is Access Calgary. Their services are excellent, however they have a few guidelines which are of impact to me, the most significant being that their requirement is to pickup a passenger from their front door, help them to the small bus, and on the way home to repeat that process. They are no permitted to lose sight of their bus or the other passengers for safety reasons. In addition they are often required to take multiple passengers, so a bus ride that would normally take a half hour can sometimes take much longer.
On the other hand, Access Calgary provides an additional service called Access Calgary Extra. Due to my special needs, I have access to that service. It pays for a cab, a wheelchair cab, to come and get me, and return me, as they would with any other taxi. That means they can come down into my building's garage and pick me up, rather than having to wait on ths street for me to magically appear outside my front door.
So last night, I was to go to Mike's party in my manual wheelchair. Rather than go through the debate with Access Calgary about where they could pick me up, I opted for Access Calgary Extra, the subsidized cab ride. Early in the day, I call them and booked a cab for 5:00 PM. The party started, theoretically, at 5:15 PM but I needed to arrive late enough that there would be sufficient other men there to help carry me into the house. It's just under an hour from my place to Mike's; he lives in the deep south of the city while I live up in the northwest. There was Saturday night traffic to allow for as well.
At 5:00 PM I was dutifully waiting in my garage, having struggled to get into my manual chair, packing my contributions and present in a bag on the back of the chair, and wheeling myself downstairs through multiple doors with my ever weakening arms. Then I waited. At 5:30 PM, I called the cab company, Associated Cabs, to see what was happening. I was told it was a busy night, that wheelchair cabs are hard to get especially since they work as normal cabs too, and that I was next in line for a ride. I called again at 5:45 PM; same story. At 6:00 PM I gave up and went upstairs to my apartment. At 6:15 PM, Associated Cab called to tell me a cab would be on the way shortly. I told them to forget it, to cancel the cab. I would stay home.
This was not a "cut off my nose to spite my face" situation. It was a very real acceptance on my part of the energy needed to get back downstairs in my manual wheelchair, Furthermore by the time I got to Mike's, which would have been about 7:30 PM, the party would be well underway with my having missed much of it. Finally, I knew that I would have to leave at about 9:00 PM to get home on time for Home Care to assist me in getting to bed. Cabbing for two hours to enjoy 90 minutes of a party just did not make sense.
Where this left me is feeling very defeated, both by the constraints on my life set in place by other people who have no interest in truly helping me live as much as I can, and by the limitations of my own physical self. Plain and simple, I can't do it anymore, whatever it may be. For certain if I am going out, my power wheelchair is now a requirements, not an option.
I also felt very alone last night, a feeling that continues with me today. ALS is an isolating disease. My friends, like Tonny yesterday, try hard to keep me in their social loop. Some do better than others. My children are all far from me now, with Kate being the closest at 2 hours away, held even more away with a new husband and family. The others are out in BC, near where there mother lives. It's easy for them, mostly, to see their mother, for grandchildren to visit grandmother. It's difficult for me since, as they are ready to remind me, I decided to stay in Calgary.
It's easy to see where bitterness is creeping into my psyche as well, the kind of bitterness which will isolate me even more. The constant losses, the perpetual inabilities, the dependency on care givers and friends and family and even strangers, the exhaustion in simple daily living. It all wears me down, grinding me ever smaller, ever diminishing. Nobody wants to be around a person who is bitter and angry. I'm angry. I'm sad. I'm weak. I'm tired. And now I'm even crying. It's all too much.
I was supposed to go to a Christmas party last night. Supposed to go. I ended up not going, basically for one reason and one reason alone. I am in a wheelchair. The wheelchair itself is not so much the issue as the concomittent effects of being in a wheelchair.
First, the back story. My friend Mike does not have a ramp at his place. However when he has a party and I can go, he gets a collection of the men there to lift me up his front stairs, wheelchair and all. What this means, however, is that to go to a party at his place, I am compelled to use my manual wheelchair, something which is becoming increasingly difficult. Nonetheless, I can do it.
The second actor in this play is Access Calgary. Their services are excellent, however they have a few guidelines which are of impact to me, the most significant being that their requirement is to pickup a passenger from their front door, help them to the small bus, and on the way home to repeat that process. They are no permitted to lose sight of their bus or the other passengers for safety reasons. In addition they are often required to take multiple passengers, so a bus ride that would normally take a half hour can sometimes take much longer.
On the other hand, Access Calgary provides an additional service called Access Calgary Extra. Due to my special needs, I have access to that service. It pays for a cab, a wheelchair cab, to come and get me, and return me, as they would with any other taxi. That means they can come down into my building's garage and pick me up, rather than having to wait on ths street for me to magically appear outside my front door.
So last night, I was to go to Mike's party in my manual wheelchair. Rather than go through the debate with Access Calgary about where they could pick me up, I opted for Access Calgary Extra, the subsidized cab ride. Early in the day, I call them and booked a cab for 5:00 PM. The party started, theoretically, at 5:15 PM but I needed to arrive late enough that there would be sufficient other men there to help carry me into the house. It's just under an hour from my place to Mike's; he lives in the deep south of the city while I live up in the northwest. There was Saturday night traffic to allow for as well.
At 5:00 PM I was dutifully waiting in my garage, having struggled to get into my manual chair, packing my contributions and present in a bag on the back of the chair, and wheeling myself downstairs through multiple doors with my ever weakening arms. Then I waited. At 5:30 PM, I called the cab company, Associated Cabs, to see what was happening. I was told it was a busy night, that wheelchair cabs are hard to get especially since they work as normal cabs too, and that I was next in line for a ride. I called again at 5:45 PM; same story. At 6:00 PM I gave up and went upstairs to my apartment. At 6:15 PM, Associated Cab called to tell me a cab would be on the way shortly. I told them to forget it, to cancel the cab. I would stay home.
This was not a "cut off my nose to spite my face" situation. It was a very real acceptance on my part of the energy needed to get back downstairs in my manual wheelchair, Furthermore by the time I got to Mike's, which would have been about 7:30 PM, the party would be well underway with my having missed much of it. Finally, I knew that I would have to leave at about 9:00 PM to get home on time for Home Care to assist me in getting to bed. Cabbing for two hours to enjoy 90 minutes of a party just did not make sense.
Where this left me is feeling very defeated, both by the constraints on my life set in place by other people who have no interest in truly helping me live as much as I can, and by the limitations of my own physical self. Plain and simple, I can't do it anymore, whatever it may be. For certain if I am going out, my power wheelchair is now a requirements, not an option.
I also felt very alone last night, a feeling that continues with me today. ALS is an isolating disease. My friends, like Tonny yesterday, try hard to keep me in their social loop. Some do better than others. My children are all far from me now, with Kate being the closest at 2 hours away, held even more away with a new husband and family. The others are out in BC, near where there mother lives. It's easy for them, mostly, to see their mother, for grandchildren to visit grandmother. It's difficult for me since, as they are ready to remind me, I decided to stay in Calgary.
It's easy to see where bitterness is creeping into my psyche as well, the kind of bitterness which will isolate me even more. The constant losses, the perpetual inabilities, the dependency on care givers and friends and family and even strangers, the exhaustion in simple daily living. It all wears me down, grinding me ever smaller, ever diminishing. Nobody wants to be around a person who is bitter and angry. I'm angry. I'm sad. I'm weak. I'm tired. And now I'm even crying. It's all too much.
Saturday, 9 December 2017
I Can Only Hope
Some mornings go well. Others do not. It is the natural ebb and flow of things that make the variability in outcomes. Today is a morning which went not so well. For starters my HCA, Olga, called me at 10:30 AM to tell me she would be here at 11:00 AM. No worries, although I was struggling with having to try peeing into a full urine jug. I am sure you can surmise the outcome.
When she did arrive, she did the morning catheterization only to discover there was blood in my urine again. This was not the same as last week; this time it was, or appears to be, a smaller amount, something that happened during catheterization. Nonetheless, Olga felt duty bound to call the clinical nurse at CBI Homecare whereupon they had a very long discussion about the amount of blood, the colour of my urine, other potential symptoms includin pain of which I have none. All this while I am laying on the bed, naked, awaiting the next step in my morning routine.
Oh, and I forgot to mention; my friend Tonny had arrived to make Saturday breakfast for me, something he does every couple of weeks. Tonny wasn't all that freaked out about any of my stuff; he is an inately calm person. Still, he's cooking breakfast for me while Olga is trying to figure out what to do next.
On top of all of this is the fact that Olga is running late, and is now compelled to spend more time than planned looking after my needs. Unfortunately this leads to rushing things. Rushing things is something you definitely cannot do with my condom catheters. Their ability to hold depends on holding me until my essential part is warm, then attaching the catheter properly, then holding me again until the glue sets. It takes time, a fair bit of time she didn't really have. So in the end, my catheter was not well attached. You can guess what that means.
So now, a couple of hours later, I have blown off the catheter, soaked my clothing, and I've had to call for additional help, if it ever gets here. Getting help on a Saturday is not an easy thing. Everybody wants their weekends off, to live their own lives with their family and friends. So here I sit, wet, slowly getting colder and more uncomfortable, with clean laundry in the dryer, waiting for me to get to it. That clean laundry, by the way, is my replacement clothing. So, that's next. At least the morning is over and I am on to the afternoon. I can only hope.
When she did arrive, she did the morning catheterization only to discover there was blood in my urine again. This was not the same as last week; this time it was, or appears to be, a smaller amount, something that happened during catheterization. Nonetheless, Olga felt duty bound to call the clinical nurse at CBI Homecare whereupon they had a very long discussion about the amount of blood, the colour of my urine, other potential symptoms includin pain of which I have none. All this while I am laying on the bed, naked, awaiting the next step in my morning routine.
Oh, and I forgot to mention; my friend Tonny had arrived to make Saturday breakfast for me, something he does every couple of weeks. Tonny wasn't all that freaked out about any of my stuff; he is an inately calm person. Still, he's cooking breakfast for me while Olga is trying to figure out what to do next.
On top of all of this is the fact that Olga is running late, and is now compelled to spend more time than planned looking after my needs. Unfortunately this leads to rushing things. Rushing things is something you definitely cannot do with my condom catheters. Their ability to hold depends on holding me until my essential part is warm, then attaching the catheter properly, then holding me again until the glue sets. It takes time, a fair bit of time she didn't really have. So in the end, my catheter was not well attached. You can guess what that means.
So now, a couple of hours later, I have blown off the catheter, soaked my clothing, and I've had to call for additional help, if it ever gets here. Getting help on a Saturday is not an easy thing. Everybody wants their weekends off, to live their own lives with their family and friends. So here I sit, wet, slowly getting colder and more uncomfortable, with clean laundry in the dryer, waiting for me to get to it. That clean laundry, by the way, is my replacement clothing. So, that's next. At least the morning is over and I am on to the afternoon. I can only hope.
Friday, 8 December 2017
Supervisor Required
So. My caregiver on Friday is a young girl, all of 20 going on 21. She makes the distinction, as most of us did, wanting to seem older, more responsible than someone a couple of years out of high school. She is good at what she does, but lacks experience in a couple of areas, most notably in catheters. In order to get checked out on how to do the various catheters I need, she would need a supervisor. Except the homecare coordinators forgot about that.
When Mikhaila arrived this morning I asked her about a supervisor. She had no idea what was going on, nor had she any real experience with either in/out catheters or the external, condom catheters I wear during the day. She was very reluctant to try doing them without a supervisor, so we decided to call the office and ask one to come out. Unfortunately my regular supervisor, Erin, has today off. This means the covering supervisor, in this case Aragash, was busier than a one armed paper hanger with and itchy rear end. She said she would come as quickly as she could.
As quickly as she could in fact meant 90 minutes. I don't blame her at all. She was covering for another supervisor today as well as working with her own team and clients. And because the in/out catheter is the first thing in my day for any number of reasons, we simply had to wait. That wait meant I would miss out on exercises today. It's not the end of the world, but I let my displeasure be clearly known. I have a limited number of hours in my life; I don't like to waste them waiting on someone else's mistake.
We did finally get the whole catheter thing done. Mikhaila was deeply concerned; it was her first time. With furrowed brow and tongue held firmly at the side of her mouth, she inserted the catheter, slid it all the way to my bladder, and drained me. Then, after my shower, I explained the workings of the condom catheter. She grasped both the principal and the attending member, put the thing on, and attached it to my leg bag.
Now she is an expert, at least where my private parts are involved. That's the last HCA needing this kind of supervision so, hopefully, from here on in time will be conserved, no supervisor required.
When Mikhaila arrived this morning I asked her about a supervisor. She had no idea what was going on, nor had she any real experience with either in/out catheters or the external, condom catheters I wear during the day. She was very reluctant to try doing them without a supervisor, so we decided to call the office and ask one to come out. Unfortunately my regular supervisor, Erin, has today off. This means the covering supervisor, in this case Aragash, was busier than a one armed paper hanger with and itchy rear end. She said she would come as quickly as she could.
As quickly as she could in fact meant 90 minutes. I don't blame her at all. She was covering for another supervisor today as well as working with her own team and clients. And because the in/out catheter is the first thing in my day for any number of reasons, we simply had to wait. That wait meant I would miss out on exercises today. It's not the end of the world, but I let my displeasure be clearly known. I have a limited number of hours in my life; I don't like to waste them waiting on someone else's mistake.
We did finally get the whole catheter thing done. Mikhaila was deeply concerned; it was her first time. With furrowed brow and tongue held firmly at the side of her mouth, she inserted the catheter, slid it all the way to my bladder, and drained me. Then, after my shower, I explained the workings of the condom catheter. She grasped both the principal and the attending member, put the thing on, and attached it to my leg bag.
Now she is an expert, at least where my private parts are involved. That's the last HCA needing this kind of supervision so, hopefully, from here on in time will be conserved, no supervisor required.
Thursday, 7 December 2017
Senescence
I'm late in writing today. The only excuse is that I am exhausted, or at least incredibly sleepy. I'm not sure if it is from being over-active the last few days, especially after the incident on Monday, or if it is the Zopiclone I took last night, it's effects hanging on, doping out my day. Either way all I have managed to do so far today is sit in my power wheelchair, napping, occasionally shifting position, mostly drifting in and out of sleep.
Most likely it is the effects of all things combined. Although it wasn't much, bleeding internally, inside of my bladder, clotting suppressed by medications, certainly has an effect. Just getting over a long, stubborn infection in that same organ is almost certainly having an effect. My toss and turn night on Tuesday night did a fair bit of damage to my energy levels. And of course yesterday itself, with laundry, shopping, cooking, and bottling wine was the kind of day sure to sap my strength.
The most frustrating part of all of this is how long it takes my body to recover these days, from almost any insult, be it self-inflicted or otherwise. Certainly a part of this is age; I am, after all, in my sixties now. I would refer to myself as a sexogenarian, but that just sounds weird. Regardless of how you put it, I am at an age where my body would slow down, ALS or not. Were I better, I would be stronger, more enduring, more capable, yet still in my sixties. I am no longer a young man.
I don't mind getting older. I would like to get a lot older, but with the normal effects of aging. I don't want to go on too long with both senescence and ALS. It's a tough combination. One, or the other, that's it. I just seems fair, a reasonable thing to ask for.
Most likely it is the effects of all things combined. Although it wasn't much, bleeding internally, inside of my bladder, clotting suppressed by medications, certainly has an effect. Just getting over a long, stubborn infection in that same organ is almost certainly having an effect. My toss and turn night on Tuesday night did a fair bit of damage to my energy levels. And of course yesterday itself, with laundry, shopping, cooking, and bottling wine was the kind of day sure to sap my strength.
The most frustrating part of all of this is how long it takes my body to recover these days, from almost any insult, be it self-inflicted or otherwise. Certainly a part of this is age; I am, after all, in my sixties now. I would refer to myself as a sexogenarian, but that just sounds weird. Regardless of how you put it, I am at an age where my body would slow down, ALS or not. Were I better, I would be stronger, more enduring, more capable, yet still in my sixties. I am no longer a young man.
I don't mind getting older. I would like to get a lot older, but with the normal effects of aging. I don't want to go on too long with both senescence and ALS. It's a tough combination. One, or the other, that's it. I just seems fair, a reasonable thing to ask for.
Wednesday, 6 December 2017
Thank You
I am constantly in a state of gratitude for the kind and generous support I get, from family, from friends, from people who follow my blog, and sometimes from complete strangers or people at least two degrees of separation from me. It reminds me of how fortunate I am, notwithstanding this one small medical issue. I am a lucky man, perhaps one of the luckiest people I know.
My biggest concern these days is saying thanking, both personally and often, to those who help me out both financially and physically. I find myself often without energy to respond to those I should respond to, without energy to say even a simple thank you with an email. You might think it is easy, but today I find myself worn out just typing out this blog. And I don't want to say something trite or repetitive. In fact I often don't know what to say at all.
There are people, and you know who you are, who have continuously supported me financially for a long time, people who have made donations through my blog and people who have emailed me with Interact bank transfers. I am always humbled, by both the small and the large contributions. These are people who are giving what they can, in whatever way they can, to help me live these last days and weeks of my life. I am in awe of their generosity.
Life has been good to me, until recently. Even the first few years of ALS were not all that bad. Then, a couple of years ago, my own money ran out. I had outlived my financial capabilities. These days it is truly a month to month existence. Yet I am calm, confident that no matter what happens things will all work out. It is only due to the kind support of others that I can feel this calm, this sense that everything will be fine. You, those who help, make a great deal of positive impact on my life. Thank you.
My biggest concern these days is saying thanking, both personally and often, to those who help me out both financially and physically. I find myself often without energy to respond to those I should respond to, without energy to say even a simple thank you with an email. You might think it is easy, but today I find myself worn out just typing out this blog. And I don't want to say something trite or repetitive. In fact I often don't know what to say at all.
There are people, and you know who you are, who have continuously supported me financially for a long time, people who have made donations through my blog and people who have emailed me with Interact bank transfers. I am always humbled, by both the small and the large contributions. These are people who are giving what they can, in whatever way they can, to help me live these last days and weeks of my life. I am in awe of their generosity.
Life has been good to me, until recently. Even the first few years of ALS were not all that bad. Then, a couple of years ago, my own money ran out. I had outlived my financial capabilities. These days it is truly a month to month existence. Yet I am calm, confident that no matter what happens things will all work out. It is only due to the kind support of others that I can feel this calm, this sense that everything will be fine. You, those who help, make a great deal of positive impact on my life. Thank you.
Tuesday, 5 December 2017
Or Maybe Not
I'm feeling pretty good today, kind of mellow and relaxed. This is, of course, not counting the perpetual vertigo, dizziness with almost every move, and nausea intermittently all day and night. Funny thing; those issues don't seem to stop me from feeling good, from enjoying my morning, from making plans for the day. They are just another part of a continually failing body. That's all.
It's December, time to put up Christmas decorations. Dion put up my outside lights and garland on Sunday, so I am already ahead of the game. While he was at it he kindly brought my Christmas tree and decorations up from my storage locker. My plan for today is to rearrange the living room enough so that the tree can be setup and decorated either later today or tomorrow. There is no rush.
There is no rush for anything. I am in the conundrum of a place where I have lots of time, but not a lot of time left. My days are mostly slow, unhurried affairs, with plenty of room for interruption and distraction. There are very few things in my apartment needing to be done, and those which are awaiting attention need not have it any time soon. My biggest thing right now is one of my perpetual tasks, tidying up the spare room. I tend to toss things in there to get them out of the way, eventually filling the bed and floor space such that I need to take an afternoon, probably with a helper, to tidy it up. The helper can do it all in a few minutes; it will take me most of the afternoon. That's just how it is.
For today, it's the Christmas tree. At least I think that is what I will do. First I want to finish my coffee, contemplate life, perhaps have a nap, and see what the afternoon brings. I am expecting my Case Worker from the ALS Society to drop by this afternoon. I have a couple of things I need his help with. After that, another nap or rest of some sort. Then, maybe, the Christmas tree. Or maybe not.
It's December, time to put up Christmas decorations. Dion put up my outside lights and garland on Sunday, so I am already ahead of the game. While he was at it he kindly brought my Christmas tree and decorations up from my storage locker. My plan for today is to rearrange the living room enough so that the tree can be setup and decorated either later today or tomorrow. There is no rush.
There is no rush for anything. I am in the conundrum of a place where I have lots of time, but not a lot of time left. My days are mostly slow, unhurried affairs, with plenty of room for interruption and distraction. There are very few things in my apartment needing to be done, and those which are awaiting attention need not have it any time soon. My biggest thing right now is one of my perpetual tasks, tidying up the spare room. I tend to toss things in there to get them out of the way, eventually filling the bed and floor space such that I need to take an afternoon, probably with a helper, to tidy it up. The helper can do it all in a few minutes; it will take me most of the afternoon. That's just how it is.
For today, it's the Christmas tree. At least I think that is what I will do. First I want to finish my coffee, contemplate life, perhaps have a nap, and see what the afternoon brings. I am expecting my Case Worker from the ALS Society to drop by this afternoon. I have a couple of things I need his help with. After that, another nap or rest of some sort. Then, maybe, the Christmas tree. Or maybe not.
Monday, 4 December 2017
Bladder Trauma
It's another late blog entry today. That's because it was another hospital visit today, unplanned and right from the get go. While Kathy, my HCA, and Erin, her supervisor, were here this morning, we all noticed blood in my urine, bright red blood, both in the jug from last night and in the catheter tray this morning. We were all speculating as to what it might be, but all of us thought, collectively, that it was a good idea to head me over to the hospital and get it checked out. I called 911.
This time I went to a different hospital, Peter Lougheed Center. It was much like Foothills Hospital, right down the the constant, ongoing construction which has been taking place for years in both hospitals. I don't know how the province prioritizes things like this, but these renovations, in both hospitals, have been going on for years, many years. One hopes the province can find the money one day to finish this work. As it stands now, they offer excellent service in the worst of conditions, renovation conditions.
When I got to the hospital, it was about 12:45PM. Nobody seemed in a hurry to see me, so I relaxed and waited for the long haul. It really wasn't that long at all when you take into account all they had to do. First there was blood to draw for the laboratory, to test for all kinds of things, especially hemoglobin count to see if my kidneys were functioning properly. Then there was urine to extract with an in/out catheter to test for bacterial infection. There were also, of course, the obligatory meetings with busy nurses and a very busy doctor.
All the medical professionals helping me today were women, and all of them seemed to need to closely inspect my genitalia for suspect damage, including a fully manual check of the status of my testicles. I told no jokes. In some ways I was more concerned than usual, in that nobody has ever inspected me that closely in the past. Nonetheless, after inspection and tests, the doctor concluded that the blood in my urine was mostly likely from "trauma" to my bladder from the insertion of the in/out catheter last night.
On a more pleasant note, I ran into one of my friends while I was in the hall at the hospital. She works there as a Social Worker, a resource I have had to draw on now and again. She wouldn't have even known I was there except for running across me in the hall. Her two visits made the day so much nicer. She is a wonderful person and we had so much to catch up on. I am certain I will have her and her partner over for dinner sometime soon.
So you see, a hospital visit for me isn't always bad news. Sometimes, rarely, good things can happen at the hospital.
This time I went to a different hospital, Peter Lougheed Center. It was much like Foothills Hospital, right down the the constant, ongoing construction which has been taking place for years in both hospitals. I don't know how the province prioritizes things like this, but these renovations, in both hospitals, have been going on for years, many years. One hopes the province can find the money one day to finish this work. As it stands now, they offer excellent service in the worst of conditions, renovation conditions.
When I got to the hospital, it was about 12:45PM. Nobody seemed in a hurry to see me, so I relaxed and waited for the long haul. It really wasn't that long at all when you take into account all they had to do. First there was blood to draw for the laboratory, to test for all kinds of things, especially hemoglobin count to see if my kidneys were functioning properly. Then there was urine to extract with an in/out catheter to test for bacterial infection. There were also, of course, the obligatory meetings with busy nurses and a very busy doctor.
All the medical professionals helping me today were women, and all of them seemed to need to closely inspect my genitalia for suspect damage, including a fully manual check of the status of my testicles. I told no jokes. In some ways I was more concerned than usual, in that nobody has ever inspected me that closely in the past. Nonetheless, after inspection and tests, the doctor concluded that the blood in my urine was mostly likely from "trauma" to my bladder from the insertion of the in/out catheter last night.
On a more pleasant note, I ran into one of my friends while I was in the hall at the hospital. She works there as a Social Worker, a resource I have had to draw on now and again. She wouldn't have even known I was there except for running across me in the hall. Her two visits made the day so much nicer. She is a wonderful person and we had so much to catch up on. I am certain I will have her and her partner over for dinner sometime soon.
So you see, a hospital visit for me isn't always bad news. Sometimes, rarely, good things can happen at the hospital.
Sunday, 3 December 2017
Happy Day
I find it interesting, almost fascinating, that, while in the midst of a terrible illness, uncertain about where the money for next month will come from, unable to accomplish even a fraction of what I used to be able to do, here I sit, feeling almost content, perhaps fully content. I am comfortable in the midst of my body's discomfort. I am happy, even though I have so much to be unhappy about.
I won't lie. I'm not feeling well. In fact, thanks to vertigo, I'm not even feeling all that good. Yet within me, within my spirit, I am calm, capable. While I am not enthused, I am certainly ready for a good day. The greatest difficulty I face is a body which is failing me. In my heart and mind, all that can be good is good, all that can be happy is happy, all that can be content is content.
Perhaps that is what makes this state of mind so interesting. How can I possibly be happy like this when so much is failing in my life and body? How can I possibly feel this content when I have lost so much of my physical ability? I suspect the reality lies in my now learned ability to see how much my body is not me, to see how much my spirit and mind live inside of a dying outer physical husk. It is an interesting philosophical, psychological study, to see myself living and dying at the same time.
It might be the Christmas music playing on my sound system. It might be the care from Samhar this morning. It might be the fruit plate I made yesterday and am enjoying today. Yet I don't think so. I have learned that happy surroundings don't make me happy. What makes me happy is the gratitude I feel for having today, for having lived through many days past, for the hope of a better tomorrow. What makes me content is knowing that I am safe, in good hands, surrounded by people who love me, who care about me, who give me a reason to keep living. I am happy when I remember how fortunate I am.
I'm going to have a good day, a happy day. ALS be damned.
I won't lie. I'm not feeling well. In fact, thanks to vertigo, I'm not even feeling all that good. Yet within me, within my spirit, I am calm, capable. While I am not enthused, I am certainly ready for a good day. The greatest difficulty I face is a body which is failing me. In my heart and mind, all that can be good is good, all that can be happy is happy, all that can be content is content.
Perhaps that is what makes this state of mind so interesting. How can I possibly be happy like this when so much is failing in my life and body? How can I possibly feel this content when I have lost so much of my physical ability? I suspect the reality lies in my now learned ability to see how much my body is not me, to see how much my spirit and mind live inside of a dying outer physical husk. It is an interesting philosophical, psychological study, to see myself living and dying at the same time.
It might be the Christmas music playing on my sound system. It might be the care from Samhar this morning. It might be the fruit plate I made yesterday and am enjoying today. Yet I don't think so. I have learned that happy surroundings don't make me happy. What makes me happy is the gratitude I feel for having today, for having lived through many days past, for the hope of a better tomorrow. What makes me content is knowing that I am safe, in good hands, surrounded by people who love me, who care about me, who give me a reason to keep living. I am happy when I remember how fortunate I am.
I'm going to have a good day, a happy day. ALS be damned.
Saturday, 2 December 2017
Touching Me
I felt compelled to admit something which I find personally embarrasing to my HCA, Samhar, today. We were discussing the best method for getting my external catheters to hold properly. It was a problem again last night, a problem with messy consequences. Inevitably the discussion turned to the benefits for the glue if I have a semi-erect penis. This is a decidedly difficult topic for me. The admission I had to make to Sam is that it is also a process which kind of feels good, so I feel improper when discussing it with an HCA.
The wonderful thing about Samhar is she has no issues in discussing this most personal of topics with me. Her first response was "Of course it feels good. It feels good for everybody." Of course my well tuned North American sense of personal shame about anything feeling good jumped to the fore. I said to her that this was an intimate act that didn't seem right with a care worker, especially one with a husband and two children. She said "Don't be silly. It's a part of life for everyone. It's natural."
I continued to have difficulty with having the discussion in an unstilted, direct manner. So Sam told me the story of her five year old boy, a story she has told me before when I first started needing serious help with the catheters. She was dressing him one day when she noticed he had an erect penis. It happens on little boys, even babies in the womb. As she says, it is a natural function. As to her son, she looked at him and he said "It's okay, Mommy. I'm just playing." Samhar laughed, her boy laughed. I think she also took a layer of shame away from him, something so valuable in mental well being.
Her point in telling me this story was to help me with my own shame about my body, my reactions to having my private parts touched, sometimes at length and in stimulating ways. This has always been one of the most difficult parts of care for me, accepting that these women are touching me in intimate places, in ways that have to happen but have unintended consequences. It doesn't seem to bother any of them as much as it bothers me.
I am sure part of it is my fear of being accused of something sexual when in fact it is something over which I have little control. Another part is my natural embarrasment, courtesy of our Puritan society, about being touched like that. Then, all I do is think about Samhar's little boy. It's okay. I just have to get used to it.
The wonderful thing about Samhar is she has no issues in discussing this most personal of topics with me. Her first response was "Of course it feels good. It feels good for everybody." Of course my well tuned North American sense of personal shame about anything feeling good jumped to the fore. I said to her that this was an intimate act that didn't seem right with a care worker, especially one with a husband and two children. She said "Don't be silly. It's a part of life for everyone. It's natural."
I continued to have difficulty with having the discussion in an unstilted, direct manner. So Sam told me the story of her five year old boy, a story she has told me before when I first started needing serious help with the catheters. She was dressing him one day when she noticed he had an erect penis. It happens on little boys, even babies in the womb. As she says, it is a natural function. As to her son, she looked at him and he said "It's okay, Mommy. I'm just playing." Samhar laughed, her boy laughed. I think she also took a layer of shame away from him, something so valuable in mental well being.
Her point in telling me this story was to help me with my own shame about my body, my reactions to having my private parts touched, sometimes at length and in stimulating ways. This has always been one of the most difficult parts of care for me, accepting that these women are touching me in intimate places, in ways that have to happen but have unintended consequences. It doesn't seem to bother any of them as much as it bothers me.
I am sure part of it is my fear of being accused of something sexual when in fact it is something over which I have little control. Another part is my natural embarrasment, courtesy of our Puritan society, about being touched like that. Then, all I do is think about Samhar's little boy. It's okay. I just have to get used to it.
Friday, 1 December 2017
Dressing Me
One of the more annoying things about dealing with Advanced ALS, as the doctors now call it, and the near full paralysis which encompasses me now, is accepting the reality that I can no longer dress myself. Someone else has to do it for me. That means someone else is putting on my underwear, socks, condom catheter, pants, shirt, and even my shoes. These days even a shirt is nearly too much for me to put on myself. I simply can't lift my arms above my shoulders, nor do I have the strength, particularly on my left side, to push or pull an arm through a sleeve.
If you have never had to do it, you should try it, dressing someone who is lying down and not moving, just dead wieght and meat on the bed. This is not like dressing an active child; it's much more difficult. In fact there is a whole branch of forensics based on the reality that it is almost impossible to dress someone properly if you are not experienced with it. My HCA's dress and undress people every day; they are experienced yet even they have problems on a regular basis.
The biggest problem for them is, of course, my compression socks, the most difficult part of my wardrobe. Even I have trouble with them, so it is no surprise that the Home Care Aides fight to get these socks on me, hurting me along the way whenever a sock snags a toe. I have, more than once, heard a curse word escape near silently from their lips as they tug and pull and peel these damned socks over my dead feet.
This, by no means negates the other difficulties. Putting on my catheter bag is simple enough, except when it comes to tightening the elastic straps. It's not their body, so they can't tell when the straps are too tight or too loss. I often have to adjust the straps myself as the day wears on. Getting pants and underwear on means flipping me from side to side several times, all the while trying to ensure my underwear are on in the right direction, and my zipper is at the front, not skewed off to the side.
Shirts are mostly difficult because I can do little to help. The HCA's must lift and pull my arms through these days. The are compelled to tug and tuck my shirts, ensuring they get all the way down in the back, and well over my belly in the front. It's really shoes which seem to be the easiest of things, almost always going on the right foot, sometimes after I point it out, rarely causing pain except when a foot gets dropped. Shoes are perhaps the easy reward for the struggle of the rest of the process.
It takes a fair bit of time to get me dressed. It takes patience on my part and on the part of anyone helping me. It takes an understanding of body mechanics, how things move and where clothing should sit or fit. It takes knowledge of how my body is failing, and what needs to happen to help me. Then, magically, it is all done and I am dressed for the day, usually. Sometimes things are less than perfect, but then again, so is much of my life.
If you have never had to do it, you should try it, dressing someone who is lying down and not moving, just dead wieght and meat on the bed. This is not like dressing an active child; it's much more difficult. In fact there is a whole branch of forensics based on the reality that it is almost impossible to dress someone properly if you are not experienced with it. My HCA's dress and undress people every day; they are experienced yet even they have problems on a regular basis.
The biggest problem for them is, of course, my compression socks, the most difficult part of my wardrobe. Even I have trouble with them, so it is no surprise that the Home Care Aides fight to get these socks on me, hurting me along the way whenever a sock snags a toe. I have, more than once, heard a curse word escape near silently from their lips as they tug and pull and peel these damned socks over my dead feet.
This, by no means negates the other difficulties. Putting on my catheter bag is simple enough, except when it comes to tightening the elastic straps. It's not their body, so they can't tell when the straps are too tight or too loss. I often have to adjust the straps myself as the day wears on. Getting pants and underwear on means flipping me from side to side several times, all the while trying to ensure my underwear are on in the right direction, and my zipper is at the front, not skewed off to the side.
Shirts are mostly difficult because I can do little to help. The HCA's must lift and pull my arms through these days. The are compelled to tug and tuck my shirts, ensuring they get all the way down in the back, and well over my belly in the front. It's really shoes which seem to be the easiest of things, almost always going on the right foot, sometimes after I point it out, rarely causing pain except when a foot gets dropped. Shoes are perhaps the easy reward for the struggle of the rest of the process.
It takes a fair bit of time to get me dressed. It takes patience on my part and on the part of anyone helping me. It takes an understanding of body mechanics, how things move and where clothing should sit or fit. It takes knowledge of how my body is failing, and what needs to happen to help me. Then, magically, it is all done and I am dressed for the day, usually. Sometimes things are less than perfect, but then again, so is much of my life.
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