Saturday, 27 May 2017

This Gardening Thing

I have a garden on my balcony! It's not quite done yet; the last couple of planters need to be filled in and put in place. Andrea and Dan are coming over this afternoon to help with that. I am so excited to see them in place that I don't know if I can wait until 3:00 PM for them to show up. I might just sit out there and enjoy what is done already, perhaps with a Gin and Tonic.

Gardening is not, nor never really has been, a thing for me. I've always enjoyed the idea conceptually, planting a seed, watching it grow, enjoying the harvest. It's just that the whole dirt and flowers and weeds and watering stuff never really held much pleasure for me. It just seemed like a lot of work. Yes, gardens look lovely, and I truly appreciated the work my ex-wife did with flowers and plants. She was the natural gardener in our house. I was the heavy lifting kind of helper.

Something happened last year. I got a hanging basket or two, really enjoying the flowers and sunshine while sitting on my balcony. This year I decided to go to town with the project. There are now four box planters on my balcony railing, two complete and two for completion today. There are also two hanging baskets with a variety of flowers, hung low from the ceiling on chain so they are easy to see. There is a third one which I don't quite know what to do with. I'll decide that today. Finally, there is a pepper plant, complete with a pepper, and a beefsteak tomato plant, both set into the end of the balcony against a climbing trellis.

If I am still alive next year, and capable of doing or directing the work, I'm already thinking of doing something different, perhaps a potted clematis for that trellis, and maybe cherry tomatoes in one of the rail planters. It has gotten me, this gardening thing. I kind of like it.

Friday, 26 May 2017

Too Tired

I'm tired, too tired to write. I'l see how I feel later in the day.


It's later in the day. I'm still fairly much exhausted, even though I slept will last night. I think it might be a hangover from the Zopiclone. This would be my second night in a row where I have taken one and a half tablets. Sure, it knocks me out, but it continues to have an affect even this afternoon.

I'm kind of emotionally tired and upset as well. I sent out an invitation to my "gang" asking if anyone wanted to come help me with planting up my planters, and then staying for a BBQ. I got no answers. Nobody wanted to come. It was bound to happen sooner or later. After all, it's summer. People have gardens of their own, plans for their weekends. I am the only one with nothing but free time on my hands.

Oh well, onward and upward. At least I can putter away on these things on my own. Instead of a BBQ, I am going to go out to a 40th Anniversary Star Wars party with some other friends at a local pub.

Thursday, 25 May 2017

No Breakfast Today

On Tuesday, Wednesday, Thursday, and Friday, my HCA, Micheal arrives at 9:00, in theory. In practice, he usually gets here about 10 to 15 minutes early, so I wake up at 8:45 or so. Saturday through Monday start at 10:30 AM. I made this schedule change in the forlorn hope that I might get more useful stuff done in the earlier parts of my day. The truth is that these are the days where I tend to have a long nap in the afternoon.

These are also the days with Micheal. He is a reasonable care aide, his biggest asset being his reliability. While the nature of the job means there will be so irregularity in his arrival and departure, he is almost always here when he says he will be here, and when he is late I know something serious has happened.

Micheal has his limitations. Part of his job is to make me breakfast. If I am lucky, I get a fried egg sandwich once out of the five days he is with me. More often I get myself a bowl of cereal or some fresh fruit, perhaps both. Today I got nothing; I have to fend for myself. He simply doesn't cook. He says I am like a woman because I cook, and I prefer to have my laundry folded and put away, rather than just dumped into a drawer or left in the basket. I will be discussing this with his supervisor in the next few days.

His other challenge is initiative in being helpful. He will do exactly what it says on his list of things to do. No more. Today I had plants in the sink from watering them last night. He calls to me and asks me to take the plants out of the sink. I asked him about help with watering and he said "No. I am not a horticulturalist." Given that he is here five days out of seven, this could be a problem.

Today I am going to meet with my Home Care Coordinator Nurse, Dani. I am going to talk to her about help with my laundry and help with watering my flowers. I am also going to discuss getting a therapy pet, one to keep me company and perhaps help pick things up when I drop them, or do light switches when I forget. My thought is to have a doggy pad on the deck. I wonder how Micheal will respond if and when theses things are added to his duties. I suspect he will do them, reluctantly, just like making breakfast for me.

Wednesday, 24 May 2017

Arms and Clowns

I couldn't sit up in bed this morning. I don't mean it took me several tries. Several tries is how every morning goes these days. I am having increasing trouble getting from a laying position to a sitting position. This morning, after several tries, I couldn't do it at all. I wore myself out, fell backwards from my partial attempt, and just laid there, wondering what I might do.

So I made a couple of phone calls, looked at the nasty weather outside, and rested. Then, after about 15 minutes, I tried it again. This time I repositioned my body a bit, adjusted my angle to the M-rail a bit, and, after two or three attempts, managed to get upright. It's all about the physics, the placement of my lifting arm and bracing arm, where my center of mass and balance are, and how I feel in my arms.

When I first wake up, or when I first try to sit up, I am fairly sure that all the muscles involved are not involved, even though they should be. I think it takes my body a while to become fully functional, or as fully functional as it can get these days. The continual loss of strength in my arms is what is causing me so much trouble with sitting up. I can no longer just pull myself upright. I am too weak. These days I have to wake up, rest up, then, hopefully, get up.

Even after doing all this, it wasn't enough when my day started. I had to wait, and go through a whole other round of attempts and struggles. Now that I am up, in my wheelchair, dressed, my arms are aching and sore from the effort, especially my left upper arm, right next to my shoulder. This is the worst area of failure right now.

I've felt this coming. I've seen this coming. I've known it would happen. It is the precursor to the final event, where I will be completely unable to do this alone, where I will need help in even the simple act of getting upright. When? I don't know. The parade has begun but the clowns haven't shown up yet. When they do, I won't be laughing.

Tuesday, 23 May 2017

My Green Thumb

It's late. That's how it goes some days. I've spent most of my day today, of all things, gardening. You need to know that I am not naturally a gardener. I can barely tell an azalea from a zinnea, a vegetable from a fruit, a herb from a weed. In truth, my ex-wife was the gardener, one of her talents that I continue to admire. She could take all these plants and work them into something beautiful. Mine? The would mostly die.

I'm hoping that won't happen to me this year. I'm hoping the hanging baskets and herb garden and tomato plant and pepper plant all survive my clumsy hand. I'm hoping the ledge baskets will thrive in spite of my inability to know what one is from the other. I am putting my faith in those who help me, regular watering, and the power of nature.

I cannot give a real reason why I want a garden on my balcony this year. I've not had one in years past. I've spent my summers doing things that took me away from my apartment, busy with social activities and road trips. This year won't be all that different. I am away for a couple of weeks in June, with other plans for a variety of short trips in July and August. On top of that I am expecting visitors during that time, a time far too busy for me to fuss over a garden.

The need for a volunteer gardener has been noted in previous entries to this blog. Well things just got real. I apparently have a balcony filled with members of the Kingdom Plantae, all needing loving care and attention. This is not one of my skills.

So far, today, I have managed to put together the Herb Garden. This involves the potting of five plants from the nursery. I setup the hanging herb basket, filled it with moistened potting soil, and transferred the plants from their nursery pots into the herb garden basket. Yay!! I am a gardener. The hanging baskets are up. I've put the tomato and pepper plants against the far wall of the balcony with a fancy metal trellis behind them. Next comes the four rail mounted potting frames.

Of course none of this would happen without the extensive help of so many people. Dion helped me pick the plants. Anisa helped me modify the rail boxes so they would fit on the rails. Anne helped me with positioning the pepper and tomato plants, along with hanging the hanging baskets. She also set me up to do the Herb Garden.

Let's see what tomorrow brings. More gardening I suspect. I cannot do this quickly, but I can do it. That's what matters.

Monday, 22 May 2017

Feeling Good

I feel good today. I got plenty of sleep last night. Kathy, my HCA, has cleaned my apartment top to bottom. She made me sandwiches, the kinds she makes that I really like. I've had a shower and used the bathroom with no issues. I just feel good.

This doesn't mean any sort of sudden strength. Nor does it mean the pain stops or the body exhaustion goes away. It's a mental thing, where my spirits are up, where I emotionally feel good. Even as I write this, my eyelids are heavy with body exhaustion. In spite of 12 hours of good, solid sleep, I am still tired. My shoulders are hurting along with my upper arms. My body aches, everywhere, even in the dead muscles.

But here I am, saying I feel good today.

It's the strangest thing to live in this body, to feel my mind separate from it on such a regular basis, to know that there is never a good day for my body when it comes to ALS. The secret to life, mine, yours to any life really, is to recognize that you are not your body, that the person you are is held within your emotions, your attitudes, your spirits. Your body will fail you, I guarantee it. Your mind is yours to keep, regardless.

I suppose that's why I think Alzheimer's is so much worse than ALS. We are intellectual creatures, simply inhabiting a physical body. To lose the mind and keep the body seems far more unfair than to lose the body and keep the mind. I enjoy so much in my life with the help of others, so many things where devices replace legs and arms. I have an active mind, in spite of a failing body. And every once in a while I get to feel good, really good. Like today.

Sunday, 21 May 2017

To Sleep, Perchance To Dream

I dislike days like today, days where I feel tired, where I am tired, but I can't sleep. It started last night, after an absolutely terrific get together with friends. We visited, had great food and wine, laughed and talked. Then everybody went home. That's my worst part of every evening, when everybody leaves and I am once again home alone. Then I decided to watch a bit of Netflix. Next thing I know it's 3:00 AM and I am still wide awake.

I remember seeing the sunrise on the horizon as I finally fell into a fitful sleep. I woke up every hour, whether I wanted to or not, not having to pee or anything, just waking up so I could look at the clock and wonder if I had actually slept. I must have, at least for some of it. Then, after about six hours of nonsensical psuedo-resting, my Home Care Aide arrived to help me get up and get dressed.

She is a 30 something young Mom from Byelorus. Her English is not all that good, but we get by when she has to fill in, generally for Micheal. He likes to take the odd Sunday off, especially if he is lightly booked. Olga, yes that's her name, is chipper and hard working, wanting to do her best and do it well. There's not a lot of nonsense about her, but she can smile and appreciate the humour in some parts of my life.

When she walked into my bedroom this morning, she looked at me and grinned. She knew I hadn't slept much. She knew I was on the edge of sending her away. It wouldn't matter; the HCA's get paid for their time here whether I accept their help or not. Regardless, she looked at me and we exchanged the usual morning pleasantries, though not always pleasant from me. Then she said, "Where you want me to start?"

I must have looked confused, because she repeated herself with some clarification. "Where you want me to start? Here or kitchen?" I realized she was offering me an extra hour of rest, which I gladly took. Off she went to the kitchen, tidying and, at the end of her efforts, cooking an omelette for me. When she returned to me, slumped as I was on the bed, she helped me into my sling. While I went to the washroom, she did more tidying. After I was done, she helped me onto the bed and began to help me dress.

Then her time ran out. I am certain she expected me to stay in bed. The omelette would have gone in the fridge. She would have gone on her way. I would have gone back to sleep. I kind of did that. I was partly dressed when I sent her on her way. As she closed the door, I lay down once again, for yet another couple of hours faking sleep, dozing lightly, feeling the sun heating my room, feeling sleepy but not sleeping.

I am up now, still feeling sleepy. I ate my omelette, my eyes still demanding closure while my brain demands that I be alert. I didn't bother with the rest of dressing; no pants, no compression socks. I'm just going to sit around today and do as little as possible. Then, in about six hours, I will go to bed again, this time with a double dose of Zopiclone. I will sleep tonight.