Shower Help

It's happened. Today I had my first home care assisted shower. It wasn't that big a deal, except that it was. It is the demarcation point, the stepping stone from one level to another, a change in my level of care indicating the progression of ALS. Yesterday I showered without help; today I showered with someone there to help me.

It was a bit awkward at first. The Home Care Aide who normally works with me on Wednesday and Friday is off on sick leave with a broken arm. So I have been getting a rotation of new caregivers, people I have never met before. In addition, whenever there is change in the care plan, a nurse/supervisor comes by to check the care plan and ensure the HCA is able to do the work. Today the nurse happened to have a new nurse employee with her for orientation. In the end I had three women in my bedroom all looking at me, naked except for my boxer shorts, and discussing how to handle me in the the shower.

In the end, there was only the one caregiver, a woman who had never seen me before but clearly knew what she was doing. The others left; this new woman and I got to know each other a bit, a polite prelude to her dealing with me completely naked. I used the toilet first, enjoying that last moment of privacy. Then in she came to assist with my transfer onto the shower seat. I drew the shower curtain, stripped off my boxers, and showered. She stood on the other side of the curtain, ready to help if I called out.

Once my shower was complete, I drew aside the curtain and was fully exposed. Nothing happened. The world did not end. There was no reaction on her part or mine. Our job was simply to see that I transferred safely back into my wheelchair and then onto my bed, where I would dress myself. In fact she had a couple of helpful suggestions for the process, all very professional and appropriate. There was no embarrassing moment, no feeling of inadequacy or awkwardness.

As I dressed we discussed possible changes to my care schedule. I am going to shift from Monday-Wednesday-Friday to Tuesday-Thursday-Saturday. When I first started care I was trapped in the "weekend" metaphor. Over the last year I have come to realize that my whole life is a weekend; no day is better than any other. With a shift to Tuesdays and Thursdays, I get to sleep in longer on the other days. Since I go out Tuesday and Thursday evenings, it will mean I can get some extra sleep on the morning after my late nights.

And it means I will have a shower before I go out.

Another Rough Night

The term "a rough night" is almost becoming mundane in my life, a near trite commentary on what is becoming a standard part of my existence. Last night was another rough one, a night where sleep was slow in coming and fast in leaving, a night where pain wandered its way through my upper muscles and lower joints, a night where my increasingly present coughing spells managed to be bad enough that rest was impossible.

The sleeping part is only a small component of what makes a rough night. Sleep for me has become the standard in my life. Regardless of when I lay my head down, I am tired. Regardless of when I rise, I am tired. A rough night is when I lay my head down, exhausted from the day, and find that sleep just eludes, that slumber sits on the edge of my consciousness teasing my body with the promise of escape all the while failing to deliver me in the mindlessness. When I finally do sleep, it is fitful, easily interrupted, leaving me once again to hope for its return.

Then comes the aching pain that can wander its way around my body. The pain is not quite enough to respond to drugs, but just enough to make itself known. It's not steady enough for me to capture and contain; it comes and goes, moving about to where it will without seeming rhythm or rhyme. It can leave for hours only to return, wandering from my arms to my knee, waking me in its arrival then leaving me thereafter, awake and wanting to sleep once again.

Last night brought the roughest of night time visitors, the cough I get when my throat gets itchy. It is as if the muscles in the back of my throat a working at cross purposes, with the cilia lifting up and the swallowing pushing down. It starts as a tickle, as if I had some sort of throat irritation. I clear my throat and it gets no better. The irritation and discomfort increases until I am in a full blown hacking attack. I sit up, drink water, cough and clear, yet with all of this nothing really changes. Finally, for no apparent reason other than ALS, my throat tickle disappears and once again I find myself trying to sleep. Fortunately these coughing attacks are sufficiently exhausting that sleep is quick in coming.

There are the usual interruptions, having to go pee, wanting to shift position, and all the other little things in sleep that leave most of us untroubled. I wish it were so. Between all of these visitors at night, the last 18 hours I spent in bed resulted in about 12 hours of inconsistent sleep. Finally I am up and about, hoping for a few hours of life before I try once again to sleep, perchance to dream.

I Smell Bad

This disease is filled with frustration, lots and lots of it. The frustration comes in small bits and in big chunks, wrapped around incidents that seem like nothing when taken on their own as well as incidents that are massive and impactful no matter what context you use. Mostly it's upsetting; sometimes, plenty of times, it has the potential to make me downright angry were it not for a willful desire on my part to keep anger to a minimum. And then there are the times when I just want to cry.

This morning is a great example of the kinds of large and small limitations and changes that one could easily dismiss, and then find that they cannot be ignored. The shower is a great place to start. This will likely be the last week of my life where I can take a shower unaided, where I will get myself onto the shower bench, wobble my way through washing myself, and transfer back to my wheelchair. That, in and of itself, is upsetting; to realize that another change in how I live is on the way and that there is bugger all I can do about it. It's just another thing I will be ultimately forced to accept.

Then there are the smaller things, the less visible things. For example, when you spend your whole life sitting in a wheelchair, the skin in your perineal areas never gets to "air out". Since you are not standing, since there is no movement within that realm, there is a perpetual bit of dampness, a combination of sweat, urine and the remnants of the last shower that just did not get dried off. Given that perpetual bit of dampness, that area of my body smells. No matter what I do, no matter how much I scrub, no matter what scents or fragrances I use, nothing will ever make my perineum smell like a spring daisy, or anything else other than slightly dank and dirty.

I know this is true. I just got out of the shower. After an extensive period of scrubbing, washing, soaping, rinsing and rewashing, after drying repeatedly, there is just the lightest fragrance of crotch rot. I hate this; I cleaned it, I know I cleaned it, I know how to clean it. But there it is.

That smell is because my legs are forever pressing inwards, the dead muscles like flanks of meat pushing sideways under the weight of my body. That constant closure to the any air motion means I never really get dry down there. I think I am going to start taking some time after every shower to just lay in bed, spread-eagle, so I can dry off. Except that I cannot spread-eagle my legs. The muscles don't work. And that leads to the next frustration, the next aggravation, the next anger.

Sometimes I Don't Eat What I Cook

At last my home is empty. I have had guests in my home from my first waking moment until now... and I have loved every minute of it. I am continually given the gift of friendship and companionship from those around me. It makes my days alive, vibrant with conversation and company.

My apartment smells of BBQ ribs in the slow cooker. I have dinner made for six. Now that my company is gone, I am eating alone. I am not really all that hungry. I suspected Kate will get most of these ribs; I am certain she will appreciate them. I love to cook; it's the whole eating thing which can be problematic for me. In spite of my best efforts, my appetite disappears easily and quickly. So a terrific batch of ribs can smell like heaven to me, yet still I will be unable to eat.

I am pretty much okay with that. I do the best I can. What I have learned is to eat when I am hungry, eat what I can when I want it, and don't worry about the rest. I know people with ALS who worry a lot about what they eat. The consume supplements and pills and special foods. In the end, I'm not sure it makes all that much difference. ALS is random; sometimes it goes slowly and other times quickly. Sometimes diet matters and other times it does not. All I know for sure is that I should eat when I am hungry.

I find that having something to drink improves my appetite. Late nights seem to do it as well. I get "snacky" after 10:00 PM, whether here or out. I suspect it has to do with my eating cycle. Generally by that time of night it is several hours since eating last, enough time for appetite to rebuild and return. Oddly enough, what I eat is relatively unimportant, it's just that I eat.

There is no predicting this. Some days I crave a plate of vegetables. Other days nothing will do except some ribs, all salty and meaty. The other night, at about 1:00 AM, I ate about a half a dozen slices of Swiss cheese wrapped with prosciutto ham. I just couldn't get enough of it. Like the paleolithic hunter, there was food and I hungered. I ate.

It is a victory to me when I can eat. Often it has nothing to do with what I cook. Here, today, I have this terrific batch of BBQ ribs. Yet what I am hungry for is the cold, leftover KFC chicken in the fridge. All that effort to make a great meal, and I will eat cold leftovers. No matter; I am eating, keeping my calorie count up. That's enough to chew on for today.

What Do I Value About Myself

I am using one of Kate's "prompt" cards today, a question about me and my life as a prompt to write something. The card says "The thing I value most about myself is...". It's an interesting prompt, causing me to wonder about the difference between something I value about myself and something I like about myself. In the end, perhaps it is a difference of degree, or perhaps it is something of myself that brings value to others. I'm not completely sure.

There is one thing I do know for sure. The one thing in myself that I both like and value is my ability to persist. I once said to a friend that I was "as persistent as the sea." It's not just that I don't give up easily, as surely I do not. It's not just that I keep trying, trying to live, trying to love, trying to keep going. It is much more, something deeper than that.

There is a problem trying to explain this attitude of persistence. Perhaps the best I can do is say that I keep moving forward, assuming forward is the best direction in which to move. There are times when forward motion is no longer possible, so I try to find another direction that works. Nonetheless, I keep moving, keep trying to get to my destination. The funny thing is that my destination can change so much, can move without plan or intent. Life just does that.

Think of it this way. When I was 56 years old, I left my wife permanently, planning to rebuild my life here in Calgary. Not everything was bad in my old life; there were plenty of things I liked, plenty of reasons which may have made another person decide to stay. Yet I did not; I left. I had persisted in working on my marriage for many years until, at the end, I learned that I needed to change direction.

Directional change was forced on me only 10 months later, when I was diagnosed with ALS. I had already started rebuilding my life, rebuilding my career, rebuilding my relationships with my children. Now, through no fault or plan of my own, my direction had to refocus; I had to shift direction. Yet I persisted in trying to build my new life, persisted in being who I was and who I am.

Now I am persisting again, living with ALS. I just don't know how to give up on life, how to stop living. It seems to be the only thing I really do well, to keep going, to persist. I have seen others around me surrender, give up in the face of terrible odds. I choose, willfully, to persist, to keep going, to live. It's really my only choice, and it is something I value.

I Am Blank

I am blank. It's been one of those days where nothing has happened, except the need for sleep and the long day in bed. Kate is over; I finally got out of bed when she rang to get in the front door. I am making a simple meal of pork chops in mushroom gravy with rice on the side, plus a few tomato slices to add some colour to the plate. We will eat in a minute or two, once the rice is done.

As I sit here typing in my blog, Kate is texting away on her new phone. She is excited by the ability to text quickly, to respond to a message in near real time. Apparently her old phone was very slow with this function. It's good to have her just sit here, humming a melody, sharing her thoughts with friends, chatting away with me about her side of the conversation. This is one of the good things about being a parent, when you can be with someone you know so intensively and intently, someone whom you held at birth and how share gentle time and space with.

I am not sure how my evening will go. There are no plans, no goals for the day. Perhaps I might do laundry. Perhaps I might go to a movie. It doesn't really matter. It's that quiet kind of day, that kind of day with nothing in it. Even home care failed to come today to do home making, although a care aide did come to stretch me. The home maker will come tomorrow to clean.

The easy quietude is so kind to my spirit. This lack of scheduled intensity, the absence of plan, makes it easier to live an easy life, the kind I need. Stress is a killer and I don't want to die. So a blank slate today is good for me.

The Lighter Load

I am not very good at staying angry; it's just not something I can do. I've always been this way. I get angry, then like a storm passing in the night the anger blows away. Sometimes the tempest is wild, sometimes mild, but always full on and soon gone. I just cannot seem to remember the anger, nor the pain that goes with it.

This may be a good thing or it may be a bad thing depending on where you stand in an argument. My ex-wife could remember every insult, every slight, every misstep. She could recall them on a moments notice, dredging them up out of her memory whether from last week, last month, or 25 years ago. I am told that women have a better memory for these things than men do. I don't know, nor do I understand why anyone would carry that kind of baggage around with them.

The downside, of course, with my inability to sustain my anger is that I rarely won, or win, an argument. I was, and still am, almost always the first to cave; I just couldn't, and still can't, hold out long enough. Over the years, I began to become more careful about what I said to my then wife, not just in terms of saying things that might upset her, something I seemed forever capable of doing, but also in terms of expressing how I felt about something or what my point of view was on something. She had the ability to recall these comments or expressions or feelings years afterwards, hauling them out in a future argument, ready to remind me of something I had long forgotten. I used to call it "weaponizing"; I would not say things lest she weaponize them a some future point.

All of this is to say that in most of my personal relationships, I am quick to forget that which caused anger, quick to forgive that which caused pain. There are perhaps only a handful of incidents throughout my life which have struck me so seriously that I remember them still, only a few hurts that cut so deep as to stay with me. Yet even these I try to let go of, try not to carry around. The longer you live, the more stuff you have along for the ride.

I prefer to forget the anger and hurt and pain, and just remember the good stuff. It ain't easy, but then again, neither is it easy to carry that weight. I prefer the lighter load.