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.

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?

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.

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.

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.

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.

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.