Cold Comfort

I am writing this at Mum’s to post later. It’s 6.30 in the evening and I’ve been here since this morning, as Mum has really deteriorated.

It was freezing this morning, which was quite a shock after having such a warm weekend. I called round at Mum’s after I went to the dentist. The filling was ok, but having a face full of a syringe like something out of Loony Tunes was not good. Mum was in bed when I arrived, but saying how tired she was feeling. The milkshake that we left her yesterday evening was still on the bedside table and she’d just had a tiny amount. She’d not had anything from the morning carers. I persuaded her to try some tiny toast, but when she hardly seemed to have the energy to eat it, I rang the district nurses and the MacMillan Nurse. The usual MacMillan Nurse is on holiday, but her colleague phoned and has referred Mum to the Hospice at Home scheme. Then the district nurse called me back and I raised my concerns. She was thinking that Hospice at Home might not be appropriate right now, as it’s only small bursts of care infrequently, so said she would call in to see Mum. She came round this afternoon and said that she thought a referral for some respite care at the hospice would be better. She phoned me later to say that the referral had gone in, but there are no beds at the hospice at the moment. There will be more news tomorrow, but a bed might not be available for a couple of days.

I have spoken to Mum about whether or not I should be going away, and when I said I was thinking of cancelling the holiday she said “No, no, no, no!”. I have also offered to stay the night to be on hand just in case, but she doesn’t want me to stay. I have walked her down the corridor to the loo and helped her to have a drink, and actually she seems to have picked up a bit, which makes me think that it’s this level of input she’s needing at the moment. We watched Home and Away together just now, but I keep leaving her alone so she can have a rest. The carers have been and gone today. Mum doesn’t particularly like any of them and the one that called round this evening reeked so much of cigarette smoke that we had to spray air freshener after she’d gone. Unfortunately I was spraying it in front of me as I walked up the corridor, so got a face full of perfume when I walked straight into it, which gave Mum a laugh. I now smell great.

So I’ll stay for a couple more hours and head home to pack, but even as I write the words this seems a strange notion. I’m planning to come round again in the morning and hope that they’ll be more news about the hospice bed. Brother is due on Wednesday, but I’m hopeful that Mum will have got the respite care by then.

PS – for everyone at the Cancer Support Centre that’s reading my blog. I appreciate you following my news so much and if you think that passing on details of the blog will help another carer, please do give them the web address. It’s hard for us carers to find the time to come to the Centre sometimes, so if a carer reading this blog means they know someone else is experiencing what they’re going through, I think I will have achieved something.

Not even a small piece of toast

Went round to Mum's today and I think since the last time I was there on Friday she'd only digested a fortified drink from the dietian and two Actimel. I'm not even sure she'd had very much liquid beyond this. The last solid food I think she had was last Tuesday, when I she ate the tiny toast without the crusts. Of course now I'm calling in all the time I'm really noticing what's been eaten, what's in the bin and so on, so it's very easy to tell what she's had. As a result I really do know it's not enough to keep her going and it's little wonder she is feeling weak and dizzy.

I called at Tesco yesterday and got Mum some little smoothie drinks and a vanilla milkshake, just so she could try something different that didn't take too much effort to drink. When we left today, I left her with the milkshake and also left some chocolate on her bedside table. You never know it might encourage her to have a bit.

All this comes before I am due to go away, so of course I am worried, but at the same time acknowledge that I need a break. She could go down hill quickly, but this could go on for months, but without a rest myself I'm not sure how useful I'll be. I think my only option is to raise things with the MacMillan Nurse tomorrow and leave it in her (hopefully) capable hands. Friday's assessment with the social worker and district nurse concluded that Mum needed social care rather than nursing care, and whilst they are right as Mum has no new medical needs, it seems like something is needed from somewhere. I actually feel like I'm better of leaving things to the "professionals" as Mum is far more likely to listen to them than me. If the MacMillan Nurse says try to keep up your calorie intake.

I am calling round to Mum's in the morning again, after my dentist appointment, so think I will try her with a cheeky piece of very buttery toast again and beg her to eat it.

Admin & Clerical

I'm wondering if Mum is not well at the moment, or if she's just not got the will to be well. She's been in bed for virtually the whole time since she had her radiotherapy and is not eating much, although I did twist her arm to eat a tiny piece of toast from the world's smallest loaf when I called round yesterday morning. I did put a great deal of butter on, so she did have some calories, even though she wouldn't eat the crusts. I can't actually get to the bottom of why she won't eat. Sometimes she says she feels sick and other times she says she just doesn't fancy anything. As she's currently on steroids, this lack of appetite is quite strange. The oncologist did say that Mum would feel tired after radiotherapy, but to this extent? And with no appetite? I'm thinking it's going to be a temporary thing, but as the MacMillan Nurse has mentioned Hospice at Home when she phoned Mum today, maybe not. Whilst Mum is poorly, I can't really see that she's ill enough to have round-the-clock nursing care. I mean, what would they actually do? Make small toast and small talk to pass the time?

I got a call from Mum yesterday, when she had actually meant to be calling the social worker back. She had pressed redial, instead of dialing 1471, after just taking a call from said social worker. She said the social worker was calling round on Friday, supposedly followed by a visit from a co-ordinator from the care providers, but Mum didn't know why they were going. I thought it would be best to go round to Mum's to sort everything out, as I knew there was a phone number for the social worker there. I found the number and gave her a call, and she told me that she's going round with the district nurse to do an assessment. The care co-ordinator was going round as Mum had expressed problems with the carers. I pointed out that this visit seemed unnecessary, so we agreed that I would put all the issues in an email and she would pass them on to the care providers. Job done.

There was more phoning to do for various bits of information and requests, and looking through all sorts of files for correspondence about her benefits, so I ended up feeling like Mum's personal assistant. At least this is me being useful and means I can get to the bottom of some of the issues that Mum isn't taking on board, like why people are actually going to see her. This seems such a fundamental lack of interest, particularly when she phones me in an angry mood, expressing frustration at not knowing what's happening. I just don't know why she doesn't ask questions. It's not like she's 90.

Friday's assessment will be fun as Mum was cross today on receiving an outline of issues from the social worker. Apparently it was all wrong. Talk about start off on the wrong foot.

Heavy Mental

Time marches on so quickly and yet more weeks dash by since my last post.

Much has happened, but in a nutshell, Mum's scan diagnosis revealed a small brain tumour, which is what has been causing the eyelid drooping. She has since had a week of radiotherapy to shrink down the tumour, but has been left very tired as a result.

In black and white this actually seems very, very simple. In practice, not so much. The weekend before the radiotherapy Mum had a tummy bug and phoned me early on the Saturday in a panic, just as I was heading out the door for something I'd had planned for a while. She wanted me to call round. By the time I got there, I was so worked up by thoughts that this was all something that the carers could have done, had they not been canceled that is, that I basically walked in the door and lost the plot. What also annoyed me greatly was the fact that Mum had put on a poorly voice and had said she was in bed. I arrived to find her sitting in the lounge, reading. I did apologise later for being cross when she felt poorly, to which Mum said she thought I should go to the doctors. She obviously thinks I am mentally disturbed and cannot comprehend that this constant state of emergency and need to be on-call all the time weighs on my brain like an anvil. It's enough to send anyone over the edge, particularly as there are so many alternatives. Commonsense for example.

As Mum has felt so washed out since the radiotherapy, we are now in the quagmire of trying to reinstate the carers back to three times a day. Mum is angered by the fact that this requires yet more assessments by social workers and so on, and doesn't seem to realise that all this is created by the fact that she stopped the visits in the first place. It seems that she refuses to see that her cancer means she would start feeling ill pretty quickly, but perhaps many do this when faced by such a crisis. Whatever the reason, the negativity, the criticisms and the multiple phone calls are not providing me with the best of circumstances to function effectively on a day to day basis. And I suppose it's only going to get worse.