Storyline: Thinking in Autumn Colours
“I feel different this morning! I feel good. My head is clear. The cloud following me around is gone.”, Alex announces coming down the stairs after his morning wake-up routine.” It is October 26, 20 days of him being out of the hospital. This is the first day he says he felt normal. I have been waiting for this moment even if it is short-lived. It marks significant progress.
And yes, he is present. He did his morning meds, then gathered the garbage and put it on the curb and after the morning feed brought the empty bins inside the garage.
During the course of the day, I wanted him to elaborate.
“A lot of the time I felt like 2 different entities walking next to each other: my body and my brain… I felt one today” he says.
It is a good day for him. In the afternoon he drove the car to the corner (about 1 km from home) to fill it up with gas. First time since all this happened.
“Welcome back Love” I say opening the door and giving him a hug.
And as in the old days when he is feeling well is when I go down. Perhaps because of rain and my bones aches, or perhaps because I had a few errands to do in the morning or perhaps because he is well enough to perform all the tasks around administering meds, food and water without my help, all the accumulated stress from the last two months rolled over me. I barely can move.
He administers his chemo drug, which is the one I have to mask up and put gloves just to help him.
“I feel present” he says in the afternoon and 10 min later falls asleep.
In the evening he is willing to try the syringe food administering. If you remember the first 3 days left without home care help, I was pushing food with syringes. Slowly with big breaks, so one cup will take a few hours. This evening he did the 2 cups (500ml) for less than an hour. This, if it goes well will allow us to do day trips in what’s left of the fall.
Despite the fact that he was still in aFib, and relatively low blood pressure, this was by far his best day.
Next day, he said he was 90% present. He talks about his brain and his body being separate entities. I still can’t quite understand it, but he says they are 10% diverged. Well 90% is not the 100% of the previous day, but it is still darn good.
It appeared to be a gorgeous sunny autumn day. I had planed our first day trip to Kleinberg. I had prepared our lunches (ha, his is easy, it comes cooked from the pharmacy), water and necessary tools (syringes, etc.) for administering his food and water. Since Doranya is winterized, we left the medications for home administering, split between morning and late afternoon.
During the day he achieved a lot more than 90% presence.
After the morning feed, meds and water intake he checked Doranya’s tire pressure and pumped some air into them, then we took her for a ride. I drove first to Appliance Canada and we found a replacement for our broken dishwasher. After finding what we wanted, he did the talk with the sales rep and signed the contract. Then Doranya lead us to Kleinberg. We had her there exactly a year ago. The parking lot was empty then. It was really busy now, but we managed to find a corner to park. We feel really good in our little home on wheels. It was lunch time and Alex took
his lunch using a syringe (and even recorded it), while I ate my sandwiches at the front. Then we did a short walk. After all it was his first time outside our neighbourhood in this condition. While I was driving back home, he felt tired and had his late afternoon nap at home.
The next few days albeit with some minor setbacks the progress was obvious. After the first week I tried to engage him with small tasks. Update our financial records and download bank statements, wash a glass or two, wash the stove top, fix the doorbell, then progressing with gathering the garbage around the house, looking into the broken dishwasher (nope, can’t be repaired! More accurately, it’s getting old and is not worth the cost to repair – A), taking the bug screens down from the windows, clean and wash the lawnmower. That last one was a big effort for him (Fighting a heavy headache – A). For the past 4 months the guys (Boyko and Dili’s boyfriend) had cut the grass, but it didn’t come even to my mind that the lawnmower had to be cleaned to remove accumulated mulch.
He even unloaded the car’s summer tires (on rims) on Oct 25 after Alexis, who was helping on Sunday with some handyman work, had loaded the winter ones for me to drive to the dealership for changeover.
And today is a month after he was discharged from the hospital. Things are really good. He has taken the ownership of his feeding. One meal a day via syringe with the goal to move to twice and by the spring everything to be delivered by syringe. This will allow us to travel with Doranya again. He is participating a lot more in our daily life, his walks are longer and his improvement obvious. Now, if only he could start swallowing again! (I heartily second that! – A)
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