Dad is under palliative care and need somewhere to vent and talk.

[SpringMarch]

Sorry I don’t know where to post this.

My dad has late stage Parkinson’s and is under palliative care now after a horrible breathing episode a few days ago.

He’s with my sister full time since 2016, but only because she cut off contact with me and blocked me access to see him. Relationships have been really strained between all us siblings and I tried to fight to see him for 3 years and then last year I gave up and stopped going to my brothers house to meet him too, as his wife always made me feel unwelcome when I went around with my children.

Now he’s basically dying and my sister has allowed me access to her house to see him.

I’m feeling angry and dead inside. The carers who come around think I haven’t looked after or seen my dad regularly on purposes. They make bitchy passive aggressive comments about knowing dad for years, but he was with me full time from his diagnosis in 2005 to 2016. I did all his care and experienced all the first scary falls and start of dementia alone.

When he was ill a few days ago, the carer was holding my dad’s hand and wouldn’t let go and then she called my brother to hold it, when I was right next to her. When I tried, she pulled my dad’s hand away and said she asked my brother not me.

I have no one to talk to about this apart from my husband and he says quiet. Can I talk to someone through this please.

Hopefully someone in a similar situation will come along soon,

Thanks for reading. This whole Coronavirus has made everything 10x harder to deal with.

She is still dictating how I visit and what I do when I’m here. I’ve been self isolating for 2 weeks already now, and my husband and myself and the kids have been sanitising hands, showering and keeping clean through the day. We haven’t met anyone or gone out anywhere that would put us at risk. Today she told me not to bring my children here anymore and that my husband could have passed the virus to me. My children and husband came and met dad when he had the bad episode when we thought he was about to die, so stopping contact now doesn’t even make sense.

Her own son is still going to work in a supermarket everyday but that’s ok.

I’m keeping quiet for the sake of creating shit during this time, but I feel so alone right now. This has always happened since my mum died when I was a teenager. She conspires with my other brother and make rules and they bitch about the things I’m doing wrong. And they’re still doing it through this.

Feeling like crap again. Dad had a better day yesterday, but he’s definitely going down. His body temperature fluctuates. I have no idea what happens in EOL. I have no support. I don’t have anybody to talk to.

Even though on Saturday I was completely numb, I’m gradually feeling more and more angry at how I’ve been forced to miss out on a big chunk of my dad’s life when he was mildly okay. I’m sick of carers and people saying what a brilliant job she’s done at caring for dad. She hasn’t done a great job, otherwise dad would have had his other dd caring and helping him when he could still communicate.

She’s completely squeezed him for all his goodness and now there’s nothing left of his personality she’s opened her doors just for the ritual of saying goodbye. I’m sick of her and the carers stories of things dad has done in the past few months. I’m sick of her telling me I’m wrong when I say dad used to do something. She looks in the air and says “no he didn’t”.

I'm so sorry for you, what a shitty time for this to happen. The only advice I can offer (as someone who lost her dad at 14 and mum has gone now as well), is that your siblings and dad's carers don't matter in the great scheme of things, only your relationship with your father. If you can get your head round all their nastiness just concentrate on your time with him, try to connect with him in a loving way, shut everyone else out and make sure you and he are in a good place before he goes. Your peace of mind is more important than anything else at the moment- even your own family. I don't know how you're going to do it but perhaps ask the carers to leave the room for a while? Swallow your anger and appeal to your sister to help you make your last visits special? When your darling dad had gone - then you can let the real you out! I'm hoping this is good advice, I will be thinking of you x

I'm so sorry, that sounds awful.

Marie Curie runs a helpline to support people with terminal illness and their families. www.mariecurie.org.uk/help/support

My dad is also terminally ill but in a difference situation.

Huge hugs. X

*different

Why don’t you get in touch with whoever your local adviser is at Parkinson’s UK? Our one was completely wonderful when we were losing my Mum.

I’m sorry you’re dealing with this OP, end stage Parkinson’s is so cruel x

Thinking of you OP, and I'm so sorry you are having to deal with all this.