Mourning who he was
I know this is just going to be an echo of what many others before me have experienced, but I just need to whine into the void I suppose. Or the void of similar people. It's going to be all over the place though.
My dad was diagnosed early, when I was around 25 (I'm 41 now). My sister burst into tears when he was diagnosed, whereas I had a more "That's horrible but its okay! It's not a death sentence cancer or something". I think my knowledge was so tangential- celebrities stories kind of thing - that I didn't consider what a long, horrible degradation this would be.
In the past seven-ish years its gotten so hard for him, my mum caring for him and for my own ASD brain. It's difficult for me to see him getting worse and worse - I've always had a sensitivity around people becoming very ill and/or near death, so it being my most beloved person isn't really making it easier.
It makes me so distressed to see him just a shell of who he was. To think that the him I adore is trapped inside this Parkinsons affected brain and body and I can't reach him. One time when I was with him and his hallucinations were awful, not only couldn't I get him to rest but he looked at me like he didn't know me and that really... sticks with me I guess.
I have cfs/me so I don't have the ability to go and help as much as I would like to, but today I am going to sit with him while mum has some time out the house, and I truly hate that I'm so upset and worked up before going. It doesn't help that I don't get asked in much advance- mum literally asks the day before, even though I say I need more prep time. I get it, she's distracted. It's hard for us both.
This was a man I used to sit and talk to about everything, who'd help me work out my feelings and how to navigate the world. Now I can't understand him, listen to the same nonsense story over and over and it kills me inside.
It's like the only person who could help me navigate this is the one suffering.
And of course, I hate this long deterioration. I have friends who have lost parents suddenly and I know that neither option is preferable but God. I hate watching the most wonderful man in the world suffering and struggling and becoming less and less of himself. I hate having to try and explain his computer to him every visit, over and over, only getting upset and frustrated myself. I hate that my memories of him are going to be this deterioration and my guilt, not the better things.
I'm trying to get all my crying out now so I can be better for this visit. Its hard not to expect the worst.