End stage Parkinsons nightmare

[Ilikeyoursleeves]

Hi, not sure what I’m looking for from my post but I don’t know where else to express just how relentless and awful things are just now.

My dad has had Parkinson’s for what seems like forever, I actually can’t remember him being healthy now. He fell a year and a half ago and ended up having to go into a care home. My mum died several years ago after 12 years of dementia so my life has been relentless with looking after ill parents.

I had to clear out my dads house (on my own as my siblings are utterly useless) to sell once he went into the care home and that’s a whole other emotional story. He’s been sitting in his room now for 17 months, doesn’t like interacting with anyone, has never even sat in the garden or left the home in that whole time (I have tried). He has no existence or quality of life. He now cannot walk at all, he can’t get up without the assistance of two carers, he can’t get to the toilet himself, he has to wear incontinence pads, he is so depressed that he has said he no longer wants to be here.

He has recently taken a nose dive in that he is barely eating, not drinking much, having swallowing difficulties, and when I saw him this week he couldn’t even speak. As in he was just whispering. His voice would come and go but he said this was the PD now affecting his voice. He has lost lots of weight, is like a bag of bones withered and slumped in a chair. He has no life, is so tired and it’s just so awful to watch him slowly and so horribly going through this.

I am finding myself googling ‘how long is end stage Parkinsons’ all the time and as bad as it sounds, I hope every day that I get a phone call to say he’s died. But instead I get calls to say how much they are trying to make sure he gets more calories, how they are giving him antibiotics to treat infections etc, how they are basically prolonging his utter hell and torture. I actually want him to die so this hell ends for him but that sounds utterly wrong and taboo to say so I don’t say it.

His Dr is planning on calling me to discuss things as I asked the care home if his recent downturn is now palliative care territory but they wouldn’t say. I’m his POA but he’s still of very sound mind so makes all his own decisions. I feel I need to have an honest and frank conversation with him about his medical help and does he want to keep going. I’m not sure how much I can say to his Dr when he still has capacity. I know he’s in hell though and I want this to end for him, and for me.

If anyone has been in this position it would be great to hear from you. Thanks if you got this far.

😢

Hi there, I went to a private neurologist in Queen Square for a consultation about my involuntary movement disorder (called tardive dyskinesia that was caused by some prescribed off label antipsychotic after a head injury and post concussion syndrome). My movement disorder is actually almost the opposite of Parkinson's (ie hyperkinetic as opposed to a lack of movement that comes with Parkinson's).

I self diagnosed mu condition and I saw 4 different neurologists, before the 5th one confirmed that I had TD. The one in Queen Square wasn't the one who had confirmed it; quite the opposite - he told me that it was a functional neurological disorder and more to do with the software that has gone wrong in the brain, as opposed to the actual hardware (a physical problem).

I'm pretty certain that I was gaslighted by him and the previous 3 neurologists as they never like to admit these drugs are neurotoxic and can cause problems. As a result, i don't trust many doctors these days, but obviously there are some good ones amomg the bad.

I'm pretty sure that Levodopa and the other Parkinson's medication can cause the condition that I have eventually. In fact, I'm certain that I've seen a few symptoms in recent videos of Michael J Fox, who has obviously taken the meds for years. I know dyskinesia is a known side effect of dopamine agonists like Levodopa.