Hi everyone,
Sorry this will be a long post. My mum is 62 and went to the doctors on Feb 21 as she had been experiencing some drastic personality changes and memory loss. He believed she had either suffered a small stroke a few weeks previously or may have dementia, so ordered a brain scan.
On the 9th of March I visited my parents and she was exhibiting symptoms of a stroke. We called an ambulance who agreed that a stroke was likely and took her to hospital where she had a head CT and they found a 4.5cm left frontal lobe tumour and a 4cm x 2 cm butterfly tumour just behind it. They initially gave her 2-8 weeks, but then did an MRI and said they’d send the scans to a specialist team to see if they recommended any treatment to give her a few more months.
She was discharged from hospital on a course of steroids on March 17. They were obviously scrambling to get as many people home before covid-19 hit. There are no hospices where we live so we have hospice at home care instead. We heard on April 10th after chasing for results from the specialist that they are not going to offer any treatment to my mum. They said they thought she now had about 4 weeks left.
My dad is 74 and has a bad chest so is at increased risk of covid-19. I have been living with them since March 9th and am caring for mum full time. Luckily I’ve been furloughed on full pay.
Obviously this is a tremendous shock and a whirlwind and so bizzare during the lock down to not have any visitors. My sister comes twice a week and has started to stay overnight now. The big struggle is that although she has been told several times that she has incurable cancer she can’t retain any of the information so essentially doesn’t know that she is dying. She is incontinent and cannot seem to go from sitting to standing, although for now she’s fine on her feet once she is up, so is incredibly frustrated with the whole situation and gets irate if you try to help her in any way. She can sit on the toilet for hours at a time and screams and screams if you try to lift her off. She says she will do it herself in her own time and wants to retain her independence. Sometimes she does just stand up herself if you leave her to it but she gets cold and her legs can seize up. She has no concept of time and tells people on the phone that we bully her and hasstle her to get up when she’s only just sat down etc. She has carers coming in 3 x daily and the odd night respite carer but they aren’t able to physically move her if she doesn’t want them to.
The consultant has told us that whilst she wants to get up and use the loo and is physically able to (she can get out of the profiling bed fine, it’s just standing from a toilet even with the frame that’s the issue) they can’t really put a catheter in as she will just pull it out. They said that she’ll get to a point soon with the reduction of her steroid dose that she won’t be getting out of bed anymore and she should be less stressed again. In a way we’re hoping that will come soon, especially as it’s so tough on my dad knowing he’s losing his partner and she’s so aggressive towards him when all he’s trying to do is help her be more comfortable.
it’s really hard being in the house with her all the time and her not understand her diagnosis as you can’t let go and have a good cry because there’s every chance she will hear. I did relent and sneak away home for a night off last night, but got in to find the kitchen overrun with ants so spent my down time sorting that nightmare. I live an hour and a half away normally so don’t want to be stopped by the police from going back there if i make the journey too often.
I seem to be stuck in this spiral of feeling guilty because I want it all to be over and feeling overwhelming anxiety because I know that when it is she’ll be gone. I can’t fathom how different life will be then. I’m irrationally terrified that the rest of my family will catch covid-19. I’m both dreading going back there now and am anxious that I’m not already on the road. And I’m also super grateful that I have the opportunity to be with her when other people are separated from their loved ones going through similar experiences. Lots of love to you all who are also feeling these feelings and living these realities xx
Hi , sorry to read this and certainly no need to apologise for this post, often people find it helpful just to let these thoughts out and there is the old saying of a trouble shared is a trouble havled.
I can very much relate to your comments around guilt from back in 2013 when my father was ill, not cancer but many of the things you talk about really strike a chord with me. Those competing feelings of wanting our loved ones to not be suffering but also the realisation that the only way that is likely to happen is when they die.
The only thing perhaps I can say is you will get through this even if perhaps it changes us in ways we never imagined.
<<hugs>>
Steve
