Friday, 9 July 2010

The Next Step

See Things to Keep, Things to Give Away

Monday, 12 April 2010

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.

Sunday, 11 April 2010

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.

Tuesday, 6 April 2010

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.

Thursday, 1 April 2010

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.

Wednesday, 10 March 2010

And another thing!

So many things keep occurring to me. You may have to sit and stay a while....

I went to see Mum on Monday after the GP had been to see her in the morning. Mum was very impressed with the GP that went (a trainee), as he gave her a thorough examination and said she needed some blood tests. The GP had said that the weakness Mum had been feeling might be due to her being anaemic, so the district nurses would come and take some blood.

Whilst I was there Mum was telling me about how poorly she felt and how weak she was feeling, so much so that she said she was struggling to make a cup of tea. I asked if she'd been letting the carers make her lunch. "Oh no", she said. I told her that this was a bit strange, on the one hand her feeling so unwell, but on the other being able to get her meals ready and said that she should be resting and allowing the carers to make her lunch. It didn't go down very well. What's weird is that she really does seem OK. She has good colour, which seems to be indicating she's not anaemic. She's was quite upbeat during my visit and certainly not poorly in affect. It just doesn't add up. Either there is something going on, but something unusual makes her feel strangely ill but appear OK on the outside, or Mum is just wanting the attention.

Another thing that made me wonder what was really going on was when I phoned yesterday. She said she was feeling about the same as before, but when I asked if the district nurses had been to take the blood she said they hadn't and she hadn't been in touch with them. So feeling ill, needing a blood test, but not finding out what was happening with it? Again this doesn't add up. She left a message for said district nurses on their answerphone and heard from them this morning. Apparently they are "short staffed" and the GP hadn't marked Mum's blood as a priority, so they would probably be getting to Mum NEXT WEEK! Regardless of Mum's strange ill health, a blood test does make sense, so next week seems too long. I told Mum to telephone her own surgery and speak to her own doctor, which she did. Mum phoned me back (again), somewhat outraged at the receptionist saying she was going to e-mail the GP the message. E-mail?! Communication of the devil! The third call from Mum this morning came when she said her GP had phoned to say that he was going to ask the district nurses to visit urgently to take the bloods. So there it is. Bloods will be done at some point soon.

Two more things that are causing me angst - actually make that three! Firstly, I seem to be doing an awful lot of instructing. Phone the GP Mum. Phone the district nurses Mum. Check what's happening Mum. Nothing seems to be happening without me giving Mum a nudge, which again is very confusing as previously she would be at the GP at the drop of a hat for every single minor ailment, even during the time when Dad was ill and it was an effort to get her to the surgery. Perhaps it's just too much to be able to think things through rationally now Mum finds she has a serious illness, but I'm finding this very wearing. I just wish she would make her own enquiries and give me a call at the end of the day to update me, rather than me getting a call every step of the way and me having to make suggestions about what she should be doing next.

Secondly, all the messing about waiting for the district nurses to take the blood, when Dad's car is now on the drive at their house and my brother, who's car it now is by the way, is currently staying in that house. I know the car is on the drive, because I put it there on Monday. I also put the new car tax disk in the car, which was sitting on Mum's dinning table rather than on the windscreen. I don't think I can really do much more to enable this driving process. So the car is on the drive, the potential driver is in the house and there district nurses are booked to do a home visit? Grrrrrrr! Arrrggghhhhhh! This is just getting so stupid. It's nine months today since Dad died and brother still hasn't driven that car. What's going on?!!

Finally, I don't feel very well, so I suppose all the confusion of the last few days is making me feel ultra sorry for myself. I just feel yucky after the cold and coughing last week, which is lingering to this week. I fancy Yorkshire puddings for lunch, but we are out of eggs (or frozen Yorkshires) and the shop seems a very long way away. Not to worry. Tomorrow is another day, one with a lovely oncology appointment to look forward to.

Saturday, 6 March 2010

Things to Fix

How time flies. It's ages since I last updated the blog. Mum has now had her scan, but she only found out for definite that she was having a CT not and MRI scan the day before her appointment (handy). We had a call from Mum's oncologist to say that she was having difficulty getting hold of the radiologist to revert the appointment back to a CT and the next day Mum got a call about the appointment. "Phew, it's all sorted!" I thought when Mum called me to say that she was having a CT scan the following day. A little while later, she called again to say the someone from the MRI department had called to say they were expecting her the following day. So again, it all starts up again and I ring Radiology to check that Mum is indeed having a CT scan NOT an MRI. Yes, it's a CT. Reassurance abounds.

This appointment was so difficult to organise - but WHY? Miscommunication? Lack of detail? Circumstance? Timing? Part of me wanted to write a detailed letter to request that this would be looked into and things would be improved, but I'm wondering if my effort would fix problems like this for other people or just be put on the pending pile marked "Things to Fix".

Mum gets her results of the scan on Thursday this week, but she's not been feeling well for a few days. She says she feels drowsy and weak. I am full of a cold and cough, which is feeling like bronchitis, so I feel rubbish and haven't been to see her because I really don't want to pass on my germs. I actually haven't been out of the house since Wednesday. Mum called the out of hours GP this morning, who visited this afternoon and said he couldn't do anything for her, but that she might be anaemic and should phone her own GP on Monday.

I really do wonder why Mum has waited until a Saturday to call a doctor if she's not feeling well. She messed about yesterday leaving a message on the district nurses' answerphone, as she thought it might be low blood pressure, something that the district nurses are supposed to be monitoring (not that they seem to show up much...). She has been feeling poorly since Thursday, so why not phone her own GP to see what they think? It is very difficult to reason my way through all this, but then it's not me having to deal with it all first hand. It's not my cancer. Even Dad, who seemed so on board with his diagnosis and so engaged with his care, gave us a real challenge to face by not allowing his GP to refer his case on to the Macmillan Nurses. As my experience with Mum's Macmillan Nurse hasn't been great, maybe this was a blessing in disguise, but nevertheless it was something I just couldn't understand at the time. It makes me think two things; that Mum cannot really comprehend her diagnosis and hence does not really appreciate why she's feeling unwell, or that this latest bout of her feeling poorly is because I haven't been to see her for the last few days, so saying she's not feeling good will give her some attention. The latter reason would also explain why she's not phoned her own GP. It's almost like that option is too easy, would get results too quickly. Instead Mum is phoning me up saying she feels poorly, asking what she should do.

I think Mum probably is anaemic, but that the cancer is also spreading. She has a cough, which she down plays. "I only ever cough when you're here!" she says. But she coughs if I'm there or if I ring her up, so I think there is spread to the lung already, hence the eyelid problem due to sympathetic nerve involvement. A chest x-ray would have picked it up, but let's make things more complicated, shall we? Let's have a scan that takes weeks to sort out and may not give us the information we need! Simple? No way!