I Am an Orphan

Many months ago, I dreamt my dad had died and told my best friend. He did yesterday. I didn’t want to add it to yesterday’s good news that came hours before his death.

I don’t know what happened exactly. He had had a fall and was taken to hospital with a large bump on his face. It looked bad. (From the photo sent) He also looked thinner than ever. I can’t say how long he lay there with no help. Sadly, he kept rebuffing my brother and I when we wanted to hire a full time caregiver for him. My other in law even (again) got social workers to go investigate but he was adamant that he is fine with the level of neglect he was living with.

Saturday, my husband went to the hospital to see how he was. We’d heard that he was to be discharged as they had said he didn’t need hospital anymore. But when he got there, the hospital said he wouldn’t be allowed to see him-that ward only allowed those who had taken him there too see him. It is Trauma-Frail Care Centre. Weird rules and no rule bending. Groote Schuur Hospital sucks! How can you not allow a one person to see a patient given he was alone!? There didn’t even need to be a swop. He was alone. 💔🥹

I guess now that he has died, we know his situation was critical . But I wish he’d known we’d tried. I don’t know if he was conscious and aware of all those hours in hospital and thinking nobody cared to see him . I don’t know if he was in pain. He’d been put on oxygen but was now off it and when he’d arrived at hospital he had apparently been talking, telling them his eye and wrist were sore.

That’s what bothers me the most. The morgue I got for my mom didn’t do an autopsy for her. They just wrote “natural causes.” I surmised that it was her heart because the doctor duringa previous hospitalization the year before, had told me she was dying of congenital heart failure and she had been coughing for some months at night-something I know comes with it. But I still wanted to know if that was the real reason it if she’d fallen and the back twisting that happened as she fell out of bed is what killed her. I wanted full knowledge. Stroke? Heart? Fall? And here we are again. Stroke? Heart? Fall? Brain bleed after the fall? I’ll never know.

I’ve been up since midnight. I took my Salazopyrin tablets yesterday only because in getting worse and there’s still no word from the doctor. But midnight, I woke up to the room spinning fast as I lay on my right side. I then tried to sit up to go to the loo but the room was still spinning and I felt like I was going to fall over even while seated.

I am guessing it’s the meds so I’ll go off them. But then I’ll lose the little impact it has had. And it does not help that google says arthritis in the neck of an AS patient can cause the same symptoms. I’ll try going off the Salazopyrin even though my knees no longer feel like they are cracking. But it’s dangerous. I even considered crawling to the toilet! It lasted till 1:30.

And then, my non verbal angel woke up at 2am. The other day it was 4am, then 3am and all those times, she stays up. So I’ve been awake for ages guys! And I’m sad for my dad and in pain. So much pain. Typing hurts. Elbows, wrists, thumbs. And my back is getting no reduction in pain at all.

I phoned the rheumy’s rooms and the best I got was that I’ll be copied in to an email going to the Cosentyx nurse who is meant to teach me how to inject it. Except, I don’t have meds to inject! And it’s not like you can the script today and then get the meds tomorrow.

Life stinks. All of it. I am so sad over my dad. He deserved to be treated with love and dignity. Sadly, he chose the person who was living with him who was not loving nor caring. And because he was compos mentis, the social workers couldn’t force anything on him. Hands tied. Bad last memories. And a dad who died with bedsores from home. I am heartbroken.