Routine Returns

They're gone, all of them. Mary, Rose and Quinn are on their way to the airport thanks to David. My Home Care Aide, Olga, came at 10:00 AM and left at about the same time as the kids. It went, in merely a moment, from being a whirlwind of activity to being near silent, with only the whirring of the fridge and the rushing noise of traffic passing by on the street below.

That whirlwind, of course, has left behind its scattered remnants as all whirlwinds must do. There is a basket of linens for me to launder, bits and pieces of paper here and there, a cot to put away. Yet there really is very little evidence that the kids were ever here. Mary tidied, put away, and left me very little to do afterwards. I suspect my largest task will be folding the cot; I'm going to ask David to help me with that once he returns from the airport.

Now I get to savour these moments of quietude, this time of stillness. I get to contemplate once again the impact of seeing my ex-wife yesterday. I get to smile inwardly at the reluctance of my grandson, Quinn, to even leave my apartment. I get to relish my moments of a made bed, a tidy home, a clean kitchen. I get to bring order and timeliness back into my life. Routine returns.

All of this doesn't mean my life suddenly becomes empty. I already have wine bottling going on this afternoon. Those who are helping me will stay for dinner, and perhaps a few glasses of new wine, this evening. Tomorrow will be a day of rest, perhaps. We'll see how I feel. I know for certain I don't have to do any shopping. My fridge is full. My freezer is full. My pantry is full. My wine rack is full. The only thing missing is a decent bottle of Scotch. I seem to go through a lot of that stuff these days.

I Am Happy

Today, for the first time since I left her in 2011, I saw my ex-wife in a social setting. I've seen her in divorce court, forced to go to BC twice, once before diagnosis and once after. Other than that I have only spoken to her on the phone once, when her brother died. Beyond that, nothing. So it was interesting to see her today, to see how I would react.

My first glimpse of her was when she walked in the door. I had no real reaction, and actually paid very little attention to her. I think she was rather disconcerted by this. I don't know what she was expecting, but a joyful reunion was not something I was up for. Her first glance at me was filled with this doleful look of pity, or perhaps sadness on her part. I'm not sure what she was feeling. I'm guessing she was processing the fact that I wasn't heartbroken or in need of her approbation.

We were at Kate's engagement lunch, along with Phil, his boys, his parents, his sister and her partner, Mary, and her children. I was near the middle. Mary sat between us and she sat a couple of seats away. Quinn was next to her and I commented on how excited he had been to know that he was going to see her at lunch. There was little said after that, except to discuss the death of one of our children's friends and a diagnosis of Parkinson's for one of my life long friends. Beyond that, I spent my lunch enjoyng a lively chat with Phil's family.

The most distressing part was at the end of lunch. Once again that look of pity came over her, a look that almost repulsed me. I need no pity. She said "I hope you find peace and love." "I already have", I responded. It was not a planned response. Those words popped out of my mouth before I could even think about them. Of course words often pop out of my mouth before I think of them. Perhaps a kinder person might have said thank you, or responded with a similar emotional expression. I did not.

Then I started thinking about it. I found peace almost immediately after leaving the marriage. I have been very happy over the last six years, enjoying life as much as I can. As to finding love, I am surrounded by it, with friends and family constantly uplifting me as I struggle with ALS. What I haven't found is a lover, someone to be with me in a physical sense. Yet I am happy, happier than I ever could have been had I been living with that pitying look and her emotionally controlling framework.

Yes, I have found peace and love. I don't know if she has. Would it be too cruel to say I don't really care? Does it make me a bad person that I am concerned about my own well-being first? I guess as a human being I hope she finds what she is looking for out of life. I want her to be happy too. She didn't seem that way today, except for those few moments when we talked about others. As to me, I am in a good space. I am happy.

Royal Tyrell Museum

It's been quite the day today, a day of highs and lows, joy and sadness. I couldn't write this morning; we were pushing hard to get out to Drumheller and the Royal Tyrell Museum. Home Care came late, and so did our drive, Isaiah. He is Phil's son. Phil is now officially my daughter, Kate's, fiance. The engagement lunch is tomorrow but the news is out. So we were in a hurry.

I want to say that I took my daughter, Mary, any my grandchilren, Rose and Quinn, to the Royal Tyrell Museum. That would only be partly true. Certainly I was the orchestrator of the event. Certainly I treated them all, including Isiah, to the museum. Alas, I did not do the driving. I am now certain; I am no longer able to drive at all. My arm strength has fallen enough in the last six weeks such that I can no longer safely drive any distance at all.

As a part of that general weakness in my arms, I can no longer consistently raise my arms above my shoulders. I can do it now and again, but there are enough times when I cannot that I will not put my trust in my own strength. The exhaustion has increased as well, so driving for two hours there and two hours back is just too much risk.

Thankfully Isiah is young and strong. He made the two hour trek from Eckville down to Calgary, then drove the two hours to Drumheller. He helped load and unload my power wheelchair, spent time with the kids, and was kind beyond measure. When Kate called to see how it went today, I told her she should tell Phil to be proud of Isaiah. He was terrific.

With his help, the day with the kids was terrific too. Alas we have worn out poor Quinn. He is so tired now he is crying himself to sleep. But what can you expect with such a full day for such a little boy. He's only three. While most times he is fun and happy, right now he has had enough.

I mean the fun and happy part. We had so much fun at the dinosaur museum, with the kids happily running from exhibit to exhibit, Mary taking dozens of photographs, and me tooling around in my power wheelchair. Actually, thanks to Isaiah driving, I maintained a good energy level for almost the whole day. Still, after the day, and after cooking dinner, I kind of feel like Quinn. I won't cry, but I am getting pretty tired.

Having the kids here is great fun. I am so grateful for them, and for Mary for bringing them out to visit, taking the time and trouble to make sure they are looked after and having fun. I confess that she is better with them than I was with her when she was that age. She has a lot of patience with them, at the same time keeping discipline, all the while managing both their needs and hers. I am proud of her, and her kids too.

Driver, Please?

This first significant disappointment from my loss of driving has occurred. It didn't take long. I didn't expect it would take long, yet even so this is distressing. My daughter, Mary, along with my grandchildren Rose and Quinn are visiting with me this week. Mary has expressed a desire to go up to Drumheller for the day, for a "last road trip" with me. She's not been there, nor have her children. It would be terrific day.

Unfortunately I can no longer drive my truck. In addition Mary doesn't drive. So that means finding a volunteer to take tomorrow off, and to drive us there, visit the dinosaur museum with us, and drive us back. I actually had two people lined up to do this for me, one plus a backup. Unfortunately, for business reasons, both have had to cancel. With no driver, the Drumheller trip to the Dinosaur Museum is unlikely to happen.

On top of the lack of a helper for the day, I am exhausted again. Yesterday was moderately busy, so I pushed get though. The end result was that I was too wound up to sleep. I didn't have a cookie. That would take too long, so I took a sleeping pill. Now I am dealng with the groggy aftereffets. I'm tired, certainly too tired to push myself for a 2 hour drive each way.

This is disappoining. I'm going to see if I can get a volunteer for Thursday. If not, then Mary will have already had that last road trip without knowing it. It's a bugger, but that's the way it is.

More Grandchildren Visiting

Mary is coming today, along with Rose and Quinn. This will mean each of my children, along with their respective children, will have been to visit me over the last couple of months. They know what is happening, wisely choosing to visit while I can still be active, while they can do more with me than sit by a bedside or push a wheelchair around my apartment.

This is not to say that my infirmitude will begin immediately. Actually it's been "beginning" for quite some time. Today Mary will see progression from the last time I saw her, back in April when David took me down for my Mom's birthday. She will see ever encroaching weakness, ever decreasing ability. She will see the increased exhaustion, the rapid tiring. All of this was true back in April as well; now she will see it in more intense manner.

What I do with her and the kids is somewhat up to her. I say "somewhat" because there I things I know will entertain them, things I have done before, things I know I can do in my power wheelchair. This wonderfull wheelchair will enable me to take them to the zoo, thanks to Calgary's C-Train. Thanks to help from David, assuming it all works out, I can go to Drumheller and take the kids to the dinosaur museum, once again using my PWC as my main means of support. If it all gets to be too much, all I have to do is lean back and take a nap. I know it works; I've done it before with my other grandchildren.

The are here until Saturday morning. It will be a busy few days but I hope to get some sleep along the way. The kids are small; they go to bed early. Mary usually goes to bed at 8 or 9 at night to help settle the kids. I'll have a cookie at 7:00 PM; that'll make me sleep. That's my only real worry about this week, getting enough rest. I'm fairly sure I can manage that.

Food, Toilet, Pills

I'm up, out of bed. This is no small accomplishment given the way I feel today. I've been struggling since last night with an upset stomach, along with it's outlier components of diarahhea and nausea. None of it is serious. None of the possibilities have come to pass except one. This morning, once seated on my commode chair, my bottom end started production before I could get myself over the toilet. Thank goodness my HCA, Kathy, was here. Thank goodness she dismissed it as a mere trifling event, nothing to give a second thought.

My HCA's are all really good that way. Not once, in all my care, have the criticized the outcomes of my illness. They have been almost constantly encouraging and supportive. I know they are paid to do that, but it still matters. Their encouragement is sometimes the only thing that makes me get up on any given morning.

The real problem is that any small illness, be it a random bacteria or a raging cold virus, has the ability not only to leave me seriously ill, but in many cases, dead. My own immune systems is so compromised, so constantly fighting against ALS, that it has little ability to combat most common illnesses. What happens is that the fight against a germ wears me out, as does the fight against ALS. So the smallest of things can lay me out for a day or two.

That's what happened today. I got up. I had my morning coffee and a sandwich. I started to fall asleep at the table, so, eventually, after fighting it for a while, I went to bed for a nap, thinking I would get up in a few hours. I took an Immodium to be safe. That was 7 hours ago. The two things that finally forced me out of bed were another trip to the toilet and the need to put food into the fridge. Oh, and pills too. Can't forget my own personal pharmacy. They are here in the kitchen, waiting to be sorted for the week. So, food, toilet, pills; those are the reasons for my writing today.

More Sleepy Days

Yesterday was a sleep day. I've been writing that a lot lately. It's just easier to stay in bed some days. Even today I feel like I could go back to sleep, and stay there. I wonder if I will ever experience another day where I am energetic, refreshed, willing to do things, go places. As of this moment, I doubt it. I suspect tired is the way I will live the rest of my life, they way I have lived it for a long tim now.

Yesterday's tired was to be expected. It all started on Thursday, actually. I had a busy day on Thursday. Anne and I went shopping at the Wine Warehouse, picking up two more kits, the ones courtesy of Jade and Travis. I was going to start them Friday, but I had problems which I will touch on shortly. Then I thought I would make them Saturday, but I was asleep. Now I am hoping for more energy tomorrow. We'll see.

In addition to the wine, I went grocery shopping for fruit. Anne was kind enough to go look for something at HomeSense for me. I am looking for a 2 or 3 bottle small wine rack to put white wine in my fridge. Then we went to my apartment where Anne retrieved the laundry and I started to put groceries away. After that, a few drinks then bed. It made Thursday a long day.

As to Friday, I slept fairly well after a moderately late evening. I managed to get about 10 hours of sleep, still a couple of hours short of what I really need, but enough to keep me going for the day. Unfortunately the day held difficult surprises for me. First, there was a good part. I got up. My new HCA made me a bit of breakfast, although she did not manage to clean up afterwards. Anne helped with that later in the day when she got here.

As to me, after breakfast and blogging, I went to put on a catheter. That way I would not have to worry about going pee while the party was on. Unfortunately, in the midst of attachment, my bladder decided to relieve itself. I got wet. So I decided to sling myself onto my bed where I would both change as well as finish putting on the catheter.

So, I slung myself. As I began to lift, the sling spread my butt cheeks. My colon, sensing this opportunity, decided to release its minor contents. I was trapped with open butt cheeks. It happened. So there I was, slinging about with wet and dirty clothing, wondering what to do next. My commode chair was out of reach, so that did not help. The only thing I could come up with was to transfer to my bed, from whence I could reach my commode chair. On the bed I would strip off my dirty clothes, then transfer to the commode chair, then head for the bathroom to clean myself up. After that, I would redress, finally attaching that God damned condom catheter.

Alas, while stripping off my soiled clothing, I discovered the contents thereof were more liquid than solid, spreading easily as I moved about. Now, rather than a dirty bum, I had shit from ass to ankle. Worse yet, I managed to spread it onto the sling and onto my bedsheets. Committed as I was, I had to keep going. I worked towards the commode chair, now spreading the mess even further. I finally got the commode chair into place, then used the sling to put myself onto my chair, spreading the mess further onto my sling. At last I made it into the chair, filth and all.

I went to the bathroom, cleaned myself as best I could, and returned to my bed to dress myself and condomize. The bed was a mess. The commode chair was a mess. I had peed and pooped on my pants and underwear. Nonetheless I was dedicated to cleaning it up before company arrived in a couple of hours. So my first step was to get dressed. I covered the dirty sheet with a towel, thus creating even more laundry, and finally did dress myself, including the addition of the catheter bag, but not the catheter itself.

After dressing, I started the cleanup. First I used napkins to get at the stuff I could wipe off. Then I took the upper bedsheet, all my dirty clothes, and finally went to attack my bottom sheet. I could get the near corners easily. I moved into the corner of my bed and the dresser, using the dresser and M-rail as a support system while I reached far across the bed. It was in the midst of that when I realized I had forgotten to put on my wheelchair brakes.

The chair went backwards. I remained braced by the dresser and M-rail. A loss of balance was achieved with me leaning forwards, too far forwards. While I struggled for a bit to regain an upward balance, I just went further and further forwards and down. Ultimately I was so out of balance I just fell fowards, out of my wheelchair.

I managed to get back into my sling. In my infinite wisdom, I had taken the dirty one off the lift and replaced it with the clean one from the living room, all while in my commode chair. After all, I was at least reasonably clean by this time. I lifted myself back up, put myself back into my sling, and said to myself "To hell with this nonsense". Anne was one of a few good friends coming for dinner, and she got here early; I had asked for that when I called her after falling out of my wheelchair.

When she got here the first thing she did was strip my bed and get the laundry started. Then she remade the bed. After that she helped me make my fruit plate for the dinner. Mike, another friend, was coming to cook. Anita brought Apple Crisp for dessert. Steve and Ray brough snacks for games afterwards. Rhonda brought a deli plate for the same. I provided wine, cookies, and dessert.

By the time the evening ended it was well past midnight. So, for two days I was busy, especially Friday. For two nights I was getting by on 8 to 10 hours sleep. So I slept all day Saturday. Even today I feel like I could sleep the whole day away. My get up and go has got up and went. That's ALS and exhaustion in action.