Almost exactly two years ago, my Dad suffered his first in a series of 'stroke-like-events' that would continue to occur at almost regular intervals.
We thought we were going to lose him. He couldn't speak, he suddenly couldn't walk, and he couldn't make sense of anything around him. We had no idea how to deal with this sort of thing, having never experienced it before, and really had no idea what to expect.
After a few days, however, he was able to walk again, and talk also. He had to focus really hard to pull up the right words and sometimes he said completely the wrong thing when he meant something entirely different. He also taught himself how to read again.
Months later, it happened again. This time he was worse - nearly comatose - for a day or two, before gradually 'bouncing back' and fighting to reteach himself how to do the simple tasks we take for granted like turning on the tv and walking down the street.
Then again, accompanied by grand mal seizures that made everyone afraid to leave him alone for any length of time.
The doctors were at a loss to explain what was happening to my Dad. They could verify that there was a significant amount of bleeding occuring in his brain, but they couldn't tell us why or what was causing it. They bounced him back and forth from taking blood thinners to prevent clotting and stopping the blood thinners to stop the bleeding.
One of these events left him angry and violent and aggitated about everything. I couldn't have a conversation with him without having him react irrationally to someone that didn't make any sense to me. I was afraid for my Mom's safety living in the house with him.
A few months ago, he landed in the hospital and we thought it was really the end for him. The doctors - still at a loss to give us any real answers - informed us that his brain was too badly damaged to survive another bleed, but they still were not at all sure they could stop another. They said there was 'not much good brain left'.
And then he didn't change. This one surprised us, because in the past, he had always survived the first few days and then gradually improved. This time he didn't. He had a feeding tube inserted into his stomach because he became unable to eat. He could barely move his arms and feet, but not enough to adjust himself in bed and required the use of a sling and two nurses to get him into a wheelchair just so he could be upright for awhile.
He could no longer go home. We were also aware that his brain was damaged enough that he didn't understand why he couldn't return home, but not so much that he didn't understand that home was still where he really wanted to be.
He went on the list for a care home.
The unfortunate thing about care homes in our city is that the vast majority of them are populated almost entirely by people who are 90+ years old. There are one or two exceptions, but the waiting lists are years long, and we had to take the first bed that came available for him. I'm glad to say the care home he is in has incredible staff - the nurses are wonderful and compassionate. I think they feel a special connection to my Dad, because he is so young and the situation must not be as common as I thought it must be.
However, they spend much of their time trying to keep Dad away from the rest of the care home population because, as one nurse said to me, 'It must be so damned depressing!'.
The last few months have been peppered with reports of 'he's going downhill again...' with 'he has an infection of...' or 'he's not responding again...' or 'his oxygen levels are down and he's having trouble breathing...'.
Last weekend my Mom called me in tears saying that a nurse had predicted that he wouldn't live through the night. This was 'it'. My aunt hopped a late night flight from where she lives a province away to be with her big brother as he died. We kept vigil at his bedside for three days.
But he didn't die.
On Monday morning, he woke up, sort of. He opened his eyes and was able to twitch his left hand. He could move his eyes side to side to watch my daughter run around his room.
He seemed to hear and understand me when I told him I was expecting another baby girl - that all of his direct descendents were officially female - and I even secretly told him what we were planning to name her, and he seemed pleased, or so I imagined.
Then a few days later, he stopped responding again. According to the nurses he has been exhibiting all of 'the signs', and they have been giving us information and pamphlets about what to expect just before and at 'the end'.
He has had a near-constant fever, and he has bed sores that are getting rapidly worse. He has been getting a morphine derivitave and sedatives continuously to keep him as comfortable as possible, but there is nothing more they can do for him medically.
And yet he seems to be holding on. His body is fighting it with everything it can, but at the same time it seems to be falling apart. I am worried about my Mom as she sits by his bedside day after day, watching and waiting - getting thinner and struggling to remember to take care of herself. I am so glad the nurses are bringing her breakfast, and the rest of us have been bringing her lunches and snacks.
I'm worried about the baby that has been growing in my body for five months and despite my attempts to feed it, I am still five pounds lighter than I was when I got pregnant. I worry that my ability to remember to feed myself is diminishing as I a struggle to remember to feed my Mom.
My Dad's family is struggling to deal with all of this, with some people pointing fingers at doctors and other family members - desperate for someone to blame, for some REASON this is happening.
And I worry about my Dad who has been trapped in his shell of a body for months, unable to move or talk or do anything. I worry that his brain is functioning enough for this to be torturous for him. He was never good at sitting still, and I can't imagine a worse hell than being so unable to do anything when you are the sort of person who never stopped before.
My Dad is dying. If he sits up tomorrow and starts talking, no doctor will be able to explain how or why, and it will be nothing short of a miracle. I believe in God, but I don't believe He works this way. There is nothing I can do to stop my Daddy from leaving this earth. And I catch myself praying earnestly that this will end... quickly. His body can't take this anymore, and if his mind is 'awake', it must be nothing short of torture for him. And maybe this is selfish, but our emotions can't take this anymore either. We have been saying goodbye for months, and it feels like a cruel sort of cosmic teasing that we aren't able to 'move on' and properly mourn.
More from living