Hi, I'm new here. Sorry this has turned out rather long. tl;dr: I'm caring for my 80 year old dad with terminal secondary liver cancer alongside my disabled mum who's waiting for a knee replacement.
My dad's secondary liver cancer came back a year ago after a year and a half of clear scans. He began with bowel cancer in 2016, was operated on within three weeks of his initial endoscopy, then recovered for a couple of months before having a liver section and finished his "just to make sure" chemotherapy in July 2017.
The past year has been difficult. He's been in and out of hospital an hour away from where he and my mum live with various temperatures, infections, jaundice etc. and most recently a fall. He was fitted with a picc line for chemo in February but jaundice stopped him having any treatment until May after he was fitted with stents to drain his blockages.
He had 3 cycles of chemo and then a scan, continued with the treatment and was told his blood tumour markers were rapidly decreasing and made us think positively. We had to wait a very long time for the scan results due to his specialist going on holiday. When the results finally arrived, it was bad news that the chemo had not worked. We were told he'd have a two week break and then a new treatment would begin. However, dad has been in and out of hospital and developed jaundice again.
The last time he was admitted to hospital he waited 14.5 hours on a trolley in A&E, stayed in for 10 days and was told that there was no point in having another stent fitted as it would do no good at all. The next day - Friday 13th - I brought him home with a just in case end of life drugs bag. I live over an hour away so have decided to move back in with my parents to help take care of my dad. I work from home, so I'm very lucky that I can do that. My mum has a broken back in two places, severe arthritis and is waiting for a knee replacement, so I'm currently running around after both her and my dad while working full time as well.
Neighbours and friends have done the "anything I can do to help" offers but I really do feel a little alone in all this. We had a wonderful MacMillan nurse visit on Tuesday for two hours and she's sorted out benefits for mum, dad's Respect form so he doesn't have to go back into hospital, social services and two carers visiting each morning between 9 and 9.30 to wash my dad. We had a zimmaframe delivered on Wednesday and now, Sunday, his legs are too weak to use it more than once a day. Yesterday a hospital bed and a commode were delivered and the men phoned just an hour before to say the room needed to be cleared and that they wouldn't help do it, queue me running around moving heavy furniture on my own and leaving me in agony today. How on earth mum would have coped without me I do not know.
On Tuesday night mum - who is sleeping in a chair downstairs to be with dad overnight - woke me to say dad was unsettled, so we got the district nurses out of hours team to visit to give dad a calming drug from his just in case bag. On Thursday dad had his first dose of oramorph and then fell at 3am, leading us to get the paramedics out as I couldn't lift him on my own. On Friday (mad Friday - the last before Christmas) he fell again at 1am, mum again woke me and I couldn't lift him again, so we waited until 2.30am for the paramedics. On Saturday morning he fell again, but it was at a decent time so I got one of my parents' neighbours to help me lift him up. Today dad can't walk to the downstairs bathroom at all and is using the commode after vehemently refusing to have one.
The rapid deterioration is the scariest thing. We can literally see him fading a little more each day. The steroids he's on are giving him terrible mood swings (today he yelled and swore when the Morrison's delivery lady knocked at the door) and he's getting frustrated when we can't understand what he's saying. He's seeing a woman doctor in the room among other people who aren't there and regularly talks in his sleep. He has moments of lucidity, but not many - less each day.
Seeing my dad who has always been active - we both walked Hadrian's Wall just 6 years ago - become a sick man, wearing disposable pants, having liquid Complan meals from beakers, needing to be cleaned up after each frequent toilet and trying to drink from the tv remote is truly heartbreaking. He needs everything doing for him and his tastes - fancying this and then that to eat - have me run ragged. One moment he wants trifle, the next bacon, the next egg custards so I have to leap up whether I'm working or not and get him whatever he wants just to try and get something, anything down him.
I'm 30 and luckily don't have any children yet, my husband and I have put it off so that I can look after my dad. My husband works away, so can only help on his days off, of which there are very few in the run up to Christmas. Dad's mum died on Christmas day nearly 40 years ago and it's his fear now that he won't make Christmas. Currently, my only respite is the 30 minutes before I sleep at night and the 30 minutes after my morning work when I walk my dog who's staying with me. For the past two mornings I've been unable to even do that, just taking her out for 5 minutes to do her business before going back to help my mum again.
It seems each time I prepare my mum's and my lunch, dad does a poo, so needs cleaning up and then we have to eat in the smell of poo. Mum is barely sleeping with dad walking at all hours and I'm really not sure how long she can go on without snapping. I feel I've aged about ten years in the past three and another year in the past week. In the time I've been writing this post I've made two trips to the kitchen for milk and sweets and helped my dad to the bathroom twice.
I'm not really looking for advice, I just need to get this all off my chest. Thank you for reading
