Dad was set for a discharge on the Saturday. I went into the ward to see him before the transfer arrived, so that I could help feed him his lunch. He seemed really unsettled and obsessed with going home.
At first, his behaviour seemed very normal, however, he was increasingly saying things that made little sense. He kept nodding at the patient opposite him, who was a weak old man in a night gown, much like my dad. He kept calling the man "Auntie Ivy". Aunty Ivy was dad's Aunt, who we used to go and stay with in the Lake District as kids. She was a lovely, frail old lady, with wild white hair, and we used to call her Yoda (lovingly) as she was just so tiny. Much like the gentleman opposite dad in hospital. Dad kept shouting at him, asking the man to help put him in the car and take him home.
Dad continued to say odd things, very out of character, as although he's old, he is usually very "with it". He was asking for his walking sticks and his shoes, however, he's been bedridden for the past 4 years so hasn't had a use for either of these things.
When his lunch came around, I tried to feed him, but he didn't want to eat more than a couple of mouthfuls. I thought we'd have better luck trying to feed him his desert, but he didn't even want that.
The ambulance came and we transferred him home. He got back into his room (a room in our house which is like a mini hospital for him) and he was full of smiles. "Oh it's so good to be home". I'm glad we got him out of hospital.
I went to make him a drink, however, by the time I brought it back over he was asleep already. His eyes were half closed and he was groaning and muttering. He was trying to say something, and it took him a few attempts to get the words out. I held his hand, and leant in closer. "Dad, what is it, tell me?". Wondering if these would be his last words to me, I was ready to hear it.
"Isn't it funny how banjo music is making a comeback?". I couldn't help but laugh. At least the delirium was providing some light relief. I'd love to put together a coffee table book of the funny phrases dying people come out with, but that's for another time.
I woke him up for his dinner, but he refused to eat anything. This behaviour, and the constant sleeping and talking nonsense went on for a few days, then one morning he'd just seemed to have perked up again. He's now eating and drinking, and quite lucid, however, he's still on "The Pathway to End of Life" so in all honestly, I just don't know what to think.
This part week has been really hard, made especially so by the current live in carer. When dad first came home from hospital, she had a rough night with him, and was knackered the next day, having to help mum and dad early the next morning. And I appreciate that. However, the next day she just outright refused to help anymore, going to her room, knowing my dad was laid in dirty sheets from having gone to the toilet. Instead of working together to find a way to clean him up, she just outright locked herself in her bedroom (my bedroom when growing up, which made me even more annoyed) and refused to acknowledge me knocking at the door. We came to blows over this and after a reluctant forced apology to one another, orchestrated by the District Nurse, we agreed to get along for the sake of my parents.
She's spent the rest of the week giving me little insulting jabs, telling me I should not be so involved, and let the carers do their thing, all whilst not carrying out all the jobs that are hers to do, such as toileting my mum, cutting my dad's wildly overgrown nails, making them and feeding them their supper. All these jobs; I ended up doing.
I've decided to go back to Scotland tomorrow as I've been away from my baby for over a week now and I just can't stand another day. Whenever I FaceTime her she either cries or sulks, so she's clearly not impressed with my absence. Besides, there's nothing more I can really do here. I know the carer will pick up her duties without me here, and there's a Marie Curie Nurse who night sits, so that she gets relief then. There's also plenty of carers in and out throughout the day, again, giving her a break.
Mum's Alzheimer's has rapidly progressed recently, and she can often be quite aggressive when you're trying to help. She shouted at me and told me to "fuck off" because I was trying to stop her from going into the neighbour's house instead of her own. I then heard her telling her reflection in the bathroom how she hates everyone, and that "you" (her reflection) is her only friend. I felt so sad and angry. Not at her. I don't know what at. But it really is the cruelest disease for everyone involved. There's no dignity in it. I just want to scream and cry like a kid when I think about the woman she was, and all the experiences that have been robbed of her, such as seeing me get married, and really understanding she is a Grandmother. Now she spends most days wandering round the house, unsettled and anxious, always thinking someone is about to visit, even when family are already there. If you take her out, she again, is scared and anxious, and complains she wants to be at home "for the visitors".
Dad's just stabilised and bed bound. As I say, he's still receiving palliative care, and suffering from an infection that cannot be cleared up, however, there's not much that can be done.
I think it's going to take a while. At least I know I've said my goodbyes, and told him I love him. It's been a two week rollercoaster and I'm mentally and physically exhausted. I just need to go home and have someone look after me for a bit.