Grist

I want to go somewhere, somewhere away from here, somewhere I can sit on a beach, somewhere people bring me nice drinks with paper umbrellas. I surely don't need a vacation; I don't go to work at all. I surely don't need a break; my life is easy, undemanding. Yet still, I want to go somewhere.

Perhaps the real problem for me is boredom, combined with the many, ever increasing limitations in my life. I have trouble opening the doors in my apartment building. They are not designed for a near quadraplegic. I have trouble washing my head and under arms in the shower; my HCA's have to help me with it these days. I'm getting increasingly upset with how these losses are impacting me. Today I couldn't put my toothbrush away; the cup was on the shelf, too high. I ended up pulling the cup down, putting my toothbrush into it, then sliding the cup back up on the shelf where it tipped upright thanks to gravity.

I'm tired of being here, in this space, physically and psycholgically. Unfortunately I neither have the funds nor the health care aide to simply jump up and go. Furthermore, my AHS Nurse Coordinator has been off with a serious illness for the last few weeks. That leaves me with only a temporary nurse providing coverage, offering no real advocacy. It means my self-managed care application is kind of in limbo, awaiting the return of my coordinator.

There is the possibility that I am getting increasingly frustrated by how much my life patterns are in the hands of other people. It turns out that a 9:30 PM bedtime visit is considered on time anywhere from 9:00 PM to 10:00 PM. So if I am watching a show, like I was last night, enjoying a glass of wine, like I was last night, it all comes to a grinding halt well before planned because the HCA wants to slap me into bed and get home as fast as possible. I can't blame the HCA. The provider, CBI, says these are Alberta Health Services guidelines. The only person who can help me with this is my AHS Nurse Coordinator, the one off sick.

I'm feeling helpless, inadequate, angry. I feel like I am fighting the system all the time, for every little thing I need. I certainly gain victories over some of the issues; I also suffer a lot of setbacks. While people may care, the system does not. There are rules, regulations, guidelines, expectations, all set to keep the system functioning properly. I understand the need. I just dislike being grist for the mill.

Potpourri

Porpourri: a mixture of things.

My thoughts are often not straight in a row. In fact most time they are a random flow of conciousness which takes a fair degree of discipline and orderliness to arrange into something which resembles effective prose. Most times my mind leaps about, grasping one thought after another, kind of like Tarzan swinging through the jungle, only in my case someone greased the vine. I often fall off topic.

Things I can still fold: most of my shirts, small towels, face clothes, pillow cases, underwear, socks.

Things I can no longer fold: dress shirts - I can neither fold nor hang them, sheets regardless of size, jeans, pants in general, large towels, table clothes, soaker pads for my bed, quitls and blankets.

Things I can still open: milk cartons mostly, juice boxes mostly, wine when I use a corkscrew, a bottle of Scotch as long as it has a cork in it, Kraft Dinner boxes, most cans if I use my electric can opener, most other processed food boxes, a bag of Prunes as long as I use scissors.

Things I can no longer open: any plastic container with a tear away tab, liquor bottles with twist off tops, anything else with a twist off top, those resealable containers with the zipper type seals, cans with pull off lids.

I spent most of today sitting in the sun streaming through my front window, napping on and off, playing with my phone. This is becoming my day more and more, as I am able to do less and less. I was going to go to the movies, to see Black Panther, but I decided not to. It was too much effort. Instead, Tonny and David came by for dinner; steak and potato salad. Easy to make, fun to eat. I did get over to Safeway. I needed milk, but I bought a bunch of other stuff too, including profiteroles and mini eclairs. I can eat whatever I want.

If you want a real good anatomy lesson, think about this. These days when I can't produce a bowel movement in my commode chair, we put me in the sling to make things happen. Recently we moved my dresser from beside my bed to the end of my bed, replacing it with a night table which is lower and easier for me to reach. The unintended consequence is that the mirror on my dresser gives me a full view of that lower portion of my anatomy as I sit there in the sling. I now have a thorough understanding of the parts involved and the actions which take place down there when I do finally produce a bowel movement.

How was your day?

From Truck To Van, Fearfully

Many of you will already know this, some not, so I am taking this opportunity to share with you the GoFundMe campaign which my friend David has started to assist me in getting a wheelchair van. I struggle with this, the constant need to ask for help with so many things in my life. Some of my pleas are active, some are passive, but any time I ask for help I feel diminished. In part that is why David is doing this for me, instead of my doing it for myself. It's is a bit of emotional sleight of hand, where I can convince myself that its not really me asking.

This particular need in my never-ending emotionally and financially sucking wound of needs is really about getting me out of my apartment more. Like a fool, I had this ridiculous belief that all and sundry would be more than willing to heft me into my truck, load my wheelchair into the back, and take me somewhere, anywhere, on an ongoing basis. Of course that was just wishful thinking. My truck is large, intimidating. I am large, also intimidating when it comes to transferring me in and out of the truck. So far David has been the only one willing to take on this burden.

When I bought that truck, it was the one I had wanted my whole life. It's big, big enough to pack full of gear for hunting, fishing, camping, whatever I wanted. It's powerful, strong enough to pull a travel trailer for getting out into the bush, strong enough to haul a flatbed with a quad and camping gear, strong enough to haul all of that plus a large moose out of the woods, strong enough to haul my sailboat on a trailer from here to the Gulf of Mexico. It's a four wheel drive, capable of handling the most difficult of back woods roads.

Unfortunately, thanks to ALS, I've never gotten to use it as I wished. On the other hand, it is a great truck for road tripping, with lots of room in the back for wheelchair, commode chair, ramp, hoyer lift, luggage, medical supplies. I've done lots of road tripping with it. Alas, I can do no more, or very little more. Getting me in and out, along with getting my wheelchair in and out, has become a substantial barrier.

So it will be sold, likely over the next few weeks. The problem is that a wheelchair van with similar mileage and appropriate configuration will cost more that $10,000 additional to what I will get from selling the truck. My biggest fear is that I will sell the truck and end up getting nothing at all, simply because of cost. David assures me this won't happen, but the fear remains.

I wonder what will happen if I get a van? Will more people take me places, since it will be easier to get me in and out? If I actually really get a live-in caregiver, will he or she be able to drive it? If it's rigged up for assisted hand controls, might I even be able to drive once again? I love my truck. Will I feel that same kind of satisfaction from a wheelchair van?

I don't know any of this, and that fear is causing a kind of stasis. I am afraid to sell the truck for fear of not getting something else. I am afraid to sell the truck because, well, it's the truck I always wanted. I'm afraid of change, particularly if it brings no improvement to my life. I don't know how long I am going to live. I am certain I will want to live longer if I regain this kind of mobility. I also know that I will still continue to be dependent on others to drive me. If I do nothing, nothing bad will happen. If I do something, well, I don't know what will happen. I'm afraid.

Help! I've Slumped And I Can't Sit Up

I have company coming for lunch. It's sufficiently difficult these days to entertain that I was going to skip my blog, using the time to prepare. Unfortunately ALS had other plans for me. While I was getting a couple of things out of the freezer to prepare for my guests, I leaned down to reach for something on the bottom shelf, only to discover that I can no longer raise myself up from that position, even with the use of my arms, such as they are.

The combination of loss of my upper core muscles, the lower ones having failed me some time ago, with weakness in my arms overall, means my trunk weight is too much for me to lever vertically having slanted it horizontally. It means, officially and definitively, that I can sit up but not bend over.

Before anyone starts asking any foolish questions, yes. I had my seatbelt on. These days it goes on as soon as I get in the chair. So it was not so much a case of "I've fallen and I can't get up", as it was a case of "I'm bent over and I can't sit up". My body was bent with only the seatbelt preventing full collapse to the floor.

This is not just one, or even one group, of muscles which are failing here. It is the combined failure of my lower core, my upper core, my back, my shoulders, my upper arms, my lower arms, and even my hands. We forget sometimes that our movements are an orchestration, many muscles working together to perform one task, or a sequence of tasks. Basically I am now dead from the neck down, excepting shoulders. You can write your own joke here.

How did I recover? In that bent over shape, I manoeuvered my power wheelchair over to the table. Then, after several attempts using the table, I managed to get myself leaning mostly sideways. I then pushed myself with weakened arms far enough back so that the armrests on my chair would aid in reducing slumpage. Then I used the table as a push point to force myself backwards along the armrest, finally sliding into sufficient position that I would sort of slump upright instead of sideways or downwards. Centering and stabilization was accomplished using my weakened shoulder and neck muscles. I am once again vertical.

Now, company will be here in 20 minutes. Screw it. They're going to have to help with making lunch. I'm done.

The Wait Is Killing Me

It's been another day where I have done nothing but sleep. I seem to be having a lot of these lately, days where any activity seems like more than I would wish to do, where any difficulty in getting out of my apartment is enough to keep me in. Inertia. I am an object at rest. I will remain at rest until some outside force causes me to move. As to a force causing me to stop, that's an easy one. You already know the answer.

I was going to go out today, but fate and the weather had other plans. So instead I stayed in, looking out my window, drifting through the day, sometimes waking, sometimes sleeping, all the time aware of the cold and snow just outside my window. It is still winter, for a while yet.

I'm tired of waiting. I would say the waiting is killing me, but that is far to trite, the obvious irony dripping from it like syrup down the side of pancakes. Yet I am tired of the wait. I want to do something in that time, be active in what remains of my time here. I want to go somewhere, do something, meet someone, eat, drink, play.

Then it happens. I start doing something. Within minutes I am so tired I have to stop. Carrying the laundry down the haul means taking a half an hour afterwards to allow my ever diminishing body to recover. Going over to the mall, especially in this weather, feels like a million mile trek. I need encouragement, a reason to go, a need that takes me somewhere worth the weariness.

It's not that I can't; it's that my default state has become inert, without motion. My muscles have weakened to the point their own absolute zero, that place where all movement stops. The muscles in my legs have so diminished that their shape has now become bent, following the line of the bone, rather than the shape of the muscle, only curved a bit somehow. My left foot forever points outwards unless forced in. I have lost that one golden jewel on my feet; I can no longer wiggle my big toe, not at all.

I suppose I shall say it. It's just laying there staring in my face. Yes, the wait is killing me. I'm now a long term member in a club people are dying to get out of. Perhaps I will watch something on Netflix, folding laundry one piece at a time with a rest of five or ten minutes between each piece. I'll drink some wine; the wine bottle is getting heavier, heavy enough that I now use two hands sometimes. Maybe I will eat; I don't need much these days, so potato salad from Costco and perhaps a few sardines.

My God my life has become so pathetic.

Snow Exhaustion

Exhastion. It's constant and invasive. Here it is 3:00 PM and I am ready for a nap, perhaps an hour or two. It doesn't really matter that much today. It's snowing here in Calgary. I am a shut-in once again. The streets are covered. The sidewalks are covered. The mall parking lot is covered. Everywhere I look there is snow, snow that will stick around for at least a couple of weeks or more.

I'm supposed to go to a retirement party tomorrow afternoon for Jane Rivest, one the the leading ALS advocates here in Alberta. She works for the ALS Society, however it is now time for her to step back and rest, letting others take over the load. My plan was to catch the bus, then the C-Train to a station near where the party is being held, then use my power chair to go the 8 or 10 blocks remaining. Thanks to this snow, that's out of the question. I'm thinking a cab might be more effective. My cab rides are subsidized, but still, it is not without some cost. Reliability will be a challenge as well.

On Sunday I am going to Emma's for dinner. I've already arranged for Access Calgary to take me there and back. The problem is that, thanks to this snow, they can't confirm a pick-up or delivery time for Sunday evening. I\m sure they will get here, and there, and back. I'm just not sure when.

This is my reality these days, that I depend on things like transit, cleared sidewalks, arrival and departure times, availability of cabs and such. All of this wears me down, adding to the build in exhaustion of ALS. I really do need that nap.

Care Plans

We are increasing my level of care today. Good thing. I am having a rough day, the kind where I wish I could crawl back into bed and stay there. Unfortunately I need someone around to help me with that, someone to get me up if I need to get up, especially if I need to go to the toilet. So even a day when I really want to take it easy relies on the care of others.

This new level of care includes some additions to my daily care plan, including shaving me when I ask, helping me wash in the shower, and a short visit at around 5:00 PM to help me empty my catheter bag. It's been getting overfilled some days, the back pressure causing the catheter to come loose. That's another thing they will check at 5:00 PM; making sure my catheter is well attached, re-attaching it if needed. Oh, and reminding me to take my afternoon medications. I've been forgetting them lately.

When the Health Care team at Alberta Health Services issues a new "care plan" to cover these changes and additions, they send it to CBI, the agency who provides my home care. The CBI Supervisor for my area comes over and puts the new care plans into my care log, a green folder with all the instructions and such in it. Today I took some time to review the care plan.

One of the first things I noticed is the lack of clarity in much of the instructions. An item, or several items, will be listed off on a care plan sheet, with a simple check mark beside them. Most of them on the afternoon sheet are about medications, something which is true for me also. I have been forgetting my afternoon meds. Then there is a follow up page for notes. Mine has instructions to empty my catheter bag, something which is becoming difficult for me, and to help me with toileting.

That's sort of the real agenda here. My catheter, when it comes off, tends to come off around that time of day. With someone emptying the bag and assisting with "toileting", it means that the HCA will perforce need to check whether the condom portion is still firmly attached. It also means if I leaned over to pick something up while in the confines of my chair, any surprises will be dealt with rather than being left until bed time.

It's kind of an interesting read, if you can decipher it. This plan spells out, in skeleton form, what care I am to be given. As a framework it means the HCA's can either do the minimum or seek to fulfill the greater objecticve of making it safe for me to live at home. I am fortunate that most of them do the latter. The only one who consistently works towards minimum is my night HCA. I am almost always the last on her list, so she just wants to do what must be done, then get out as quickly as possible. Yet, even with that, the care level is excellent. Excellent is not written in the plan; it must be written on the heart.