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!

Friday, 19 February 2010

In which I attempt to call in the Cavalry

Last night I decided to get the patient liaison people involved with Mum's appointment fiasco. I phoned the PALS this morning, who said they would try to contact the appropriate matron to help. I've just spoken to matron, who made all the right noises, but essentially nothing is really happening. Mum's oncologist is away, so the matron has simply gone to put a note on said oncologist's desk. She told me that the oncologist has a clinic at a different hospital on Monday morning, so might not even see the note until Tuesday. When I asked if someone would be letting me know what's happening, matron blustered like a senior politician on Newsnight, so I asked again if someone would let me know. Eventually she said that she would keep a copy of the email that PALS had sent through and she would check up on everything next week.

I am left wondering if all this is good enough. Cancer seems all about waiting, frustration, organising, waking up with a sense of dread in the morning, chasing things up. It doesn't seem very much about caring right now.

Using the word cavalry in the title of this post actually reminds me of my favourite Emily Dickinson poem:

To fight aloud, is very brave -
But gallanter, I know
Who charge within the bosom
The Cavalry of Woe -

Fighting aloud doesn't seem to have got me very far this time. Maybe you are right Emily.

Thursday, 18 February 2010

MRI Regardless

So much for my efforts on Monday to flag up Mum not wanting an MRI appointment and her needing a CT like her oncologist originally requested. Today she got an MRI appointment anyway. Mum was quite happy about it at first, as the information leaflet the sent her described it as a polo mint, but as I pointed out it's not the open-type polo mint like the CT scan she had before. Then she started to get panicky. Then I start the phone calls to the radiology appointments clerk, who told me to phone the oncologist, to the oncologist's secretary, who wasn't there so I had to talk to one of her very unhelpful colleagues instead. Question: Why do medical secretaries put their calls through to someone else rather than having an answerphone, if that someone else isn't prepared to even take a message? And with this stalemate, until office hours tomorrow.

Another question: Is this all rocket science? I mean, I did TRY to stop this happening, I did leave messages with the right people and I did check (yesterday) that the oncologist had got the message, but still Mum got the appointment that's now upset her. Yes, the oncology secretary did actually say that she hadn't seen the oncologist, but did tell me she had got Mum's notes and my message, so what can possibly be going wrong? It's a waste of my time, an MRI appointment and Mum's sanity. Mum has phoned four times in the space of about half and hour in a flap about whether or not the scan was or wasn't "the polo mint", and saying she would refuse the MRI. All this is what I tried to avoid and it's still gone wrong. It's safe to say I am cross and now have to wait until tomorrow until I can speak to the oncology secretary (or one of the unhelpful secretarial colleagues). It's frustrating to say the least.

Monday, 15 February 2010

MRI? You're joking aren't you?!

More of these cosy bad boys later!

It's strange how things never seem to be straightforward. I don't really know why, but alarm bells had been going off about Mum's CT scan appointment. It's been well over a week since we saw the oncologist and I thought she said that Mum would be seen for a scan within a fortnight. Mum thought the oncologist meant that she would have a date for an appointment within two weeks, so wasn't particularly worried. For some reason it just didn't seem right not to have heard anything, so I checked with Mum today that an appointment hadn't come through in the post and when it hadn't rang the oncologist's secretary. Unfortunately the secretary doesn't send the radiology requests through, they are done from out-patients, so she advised me to ring the radiology appointment at Mum's hospital. I suppose this represents the difficulties of having cancer care at a specialist cancer centre and other appointments for scans, etc, at Mum's local hospital. Referrals are sent away from the specialist centre personnel, who don't necessarily know what's happening in the local hospital. Never a truer thought actually, as when I phoned the appropriate radiology appointments person, she tells me that the appointment seems to be for an MRI rather than a CT. "Oh dear", I say, or words to that effect and explain that Mum will NEVER have an MRI and that the oncologist had specifically requested at CT to get round Mum's claustrophobia problems. The radiology lady said she would look into it and ring me back.

Although I didn't have long to wait, I managed to grab had a corned beef sandwich with brown sauce and tried on my new sheepskin slippers. They are made in England and are indeed cosy bad boys. I also opened a lovely new necklace I ordered from Germany over the internet. Things like this are keeping me sane.

The radiology clerk did call me back and had looked into the referral. What started out as a referral for a CT scan from Mum's oncologist had somehow materialised into an appointment for an MRI. "Oh dear", I said. The lady was very sympathetic and said she would leave a note for one of the radiologists. I said I'd phone through to the oncologist's secretary, who again was very sympathetic and would pass on the message to her consultant. It has all got a bit cloak and dagger as I have colluded with both the radiology clerk and oncology secretary in not telling Mum about the MRI mix up. It would only cause panic and problems, and whilst it feels like I'm being dishonest ("Yes Mum, they're sorting out an appointment for you!") I think avoiding panic and problems is probably best for Mum's well being. And for mine perhaps...

Last week I managed to get Mum to the dentist after all. Unfortunately she had to have a filling, but that was better than having to have the tooth taken out, which was what the dentist really wanted to do. Mum was actually ok after the filling and said she fancied a fishcake from the chip shop, so I stayed for a bit longer than I was going to, went out to the chip shop and had lunch with her. If I can do small things like this, I think I will look back and feel like I tried. I do have an overwhelming feeling at times that we are living on borrowed time, like I really do have such a short amount of time left with Mum, but then I get so tired I feel like I need to have a rest rather than going to see her. Then I sit there, "resting", but my brain is ticking like a bomb because I'm thinking that one day I won't even have the option to nip over to see Mum, because she'll be gone. And then I think that one day I will have to be there to help and take care of things, so I need a reserve to draw on when that day comes, so rest I must. Such are the quandaries of a carer I suppose.

Monday, 8 February 2010

Stop press! Car news!

The breakdown service cometh and the car in Mum's garage is now going again! Horrah! Apparently the battery needed replacing and a tyre needed pumping up, not that the latter reason was why the breakdown service needed calling out, not that I event knew about the tyre, but never mind. So it's over to me to get the MOT sorted, then either brother embraces utilising the car or Mum will sell it. I told Mum selling the car might actually be the best option the other day during my rant, which she has now mentioned to brother. When I asked Mum what he thought about selling the car as an alternative, she said that he was thinking about it. Looks like we'll have an outcome in about six months then! At least with an MOT, in theory Dad's car should be able to keep on truckin'. Goodness only knows what he would have thought of all this nonsense.

Another odd development is the fact that Mum has chipped a tooth and I need to get her to a dentist's appointment. Quoting Ogden Nash,

Some tortures are physical,
And some are mental,
But the one that is both
Is dental.

Both Mum and I know how he feels.

Sunday, 7 February 2010

Things move on. Things stay the same.

We've just had a bit of a complicated week. It started last Sunday, with Mum phoning to say her eyesight was blurred. Her eye had been uncomfortable for some time and she'd seen her GP who had given her some eye drops. We went through a list of things with her (did she have headache, did she feel sick, etc) and she concluded that it was more of the same problem with her eye. She would give her GP a ring in the morning.

That night the phone rang at 10 to 11. Many will know that odd feeling that comes with a late night phone call, that "it can't be good" sensation when it starts to ring. Mum said she had a pain in her side and was going to phone the out of hours GP. I asked her if she wanted me to go over, but she said she'd ring again when she knew what was happening. I was really tired, so got ready for bed whilst I waited for another call. She phoned again at 20 past 11, saying that a GP would be going to see her, but it would be up to a 2 hour wait. I said that I was going to have to go to bed, but that she should call back if they wanted to take her to hospital. I would call her first thing to see how she was. Phoning her on Monday morning, the GP that visited during the night said she had pulled a muscle. Mum was calling her own GP about both this and her eye. I told her I would call round to see her that evening, to which see said my brother was going so she said "you don't have to come if you don't feel like it". If you don't feel like it... What a curious phrase... I did go round that evening and was very shocked to find that Mum's eyelid had dropped half way down her eye, something that she had failed to mention and something that my brother had apparently failed to notice. And yet it was enough to freak me out! She had apparently pointed it out to both GPs she'd seen in the last 24 hours, but they just said something about a link to the tumour and told her to mention it when she went to see the oncologist that week. This didn't seem very satisfactory, as they might have explained why this would link to a dropped eyelid.

Two days later, my brother's visit ends. I ask Mum if he brought the details of the breakdown cover? No, she says, he has forgotten AGAIN. I start to have a bit of a rant, at which Mum starts to excuse brother. As a consequence my rant escalates to saying that this is now his car and he needs to sort it, so I can sort the MOT and he can start to make use of it to support Mum. Is this rocket science? I'm beginning to think so.

On Thursday I took Mum to her appointment with the oncologist. As expected they explained that the eyelid problem would be indicating that there was some nerve involvement somewhere, maybe indicating a tumour elsewhere. Mum has been referred for a CT scan, so again we are waiting for tests, for news, for an outcome. I offered to take Mum to the shops on the way home, so we called in at Marks and Spencer, where she went on a shopping beano for delicious pre-packed food. She so enjoyed the chance to do this. Again it is a simple thing, but I am a feeling the pressure to fit everything in. If only there was another car for someone else to drive, so Mum could be enabled to go out! Oh wait a minute, apparently there is...

Sunday, 24 January 2010

Car Trouble

Things with Mum haven't been too bad this week, although I have sensed that she's been disappointed that I haven't offered to take her out. As brother was with her for a couple of days this week, he could have offered to take her. But wait a minute! He can't because his car is dead in the garage at their house? Surely not!

My moan of the week is focused on that damn car. As some of you will already know, I predicted that Dad's car would become the bane of my life after he died. It was either out in the elements on the drive, in the garage needing moving out or needing a run to keep it going, so my encouragement for Mum to give it to brother was based on the fact that he would run it himself and take it away. Of course that didn't happen. He wanted to keep it at Mum's house. Re-taxing the car didn't happen because the MOT had run out, so it's been in the garage at Mum's house since August. Of course it's now dead as a doornail. I know because I tried to start it the other day, so I could take it for the MOT to be done. Of course, it being my brother's car, it's my responsibility... Odd fact this, but as he's never driven it, he could never get it out of the garage. This is tricky for me at the best of times, so I wouldn't fancy an inexperienced driver who'd never actually driven this car backing it out without a bump.

The breakdown cover has been reinstated, so someone can come to start the car. The cover is in brother's name, so he needs to arrange the call out, but I need to be there to get it out of the garage, so at least brother can turn it over when he's there. Then I'll sort out the MOT, but then NO MORE! I will have no more to do with that bloody car!

This week is going to be tough. The solicitor is coming to talk to Mum about Dad's estate and her own will. Not conversations to be relished.

Friday, 15 January 2010

Women With Pushchairs Rule The World

I have been waiting to use the title "Wheels of Steel" for when I took Mum out in her new wheelchair, but after my experience today I think this title is far more appropriate. I took Mum to buy a new wheelchair before the snow came again just after Christmas and today was the first chance we have had to give it an outing. It's very lightweight, so it's easy to get in and out of the car, and to push about, so out we went to the shops.

You don't have to spend much time either in a wheelchair or pushing one to see that there's this strange hierarchy in the shopping centre world. The people in wheelchairs come pretty much at the bottom, with counters that are too high, obstructions to the aisles when shops cram too much in, being spoken to like they are idiots and mothers using their pushchairs as battering rams in front of them. We had been to W H Smith today and Mum agreed to have a coffee, which was a great improvement on the last time we were out. We didn't go to Costa in W H Smith, as I think it's too hard for Mum to go there as she always used to go with Dad. I know exactly how this feels, as I still can't bear to go to a football match without him. Instead of Costa we wheeled round the corner to Starbucks. We were just trying to find somewhere to park/sit, when a woman pushing a toddler in a buggy barged in front of us and tried to take our table with her friend. What is it with some mothers? They ram around their fortress of a pushchair as if they are saying "Here is the fruit of my womb! Obey me!" When I pointed out that we were trying to sit down and I was bluntly told that there were two tables, so they took up most of the space and Mum and I made the best of the remaining room. Obviously in this instance that bag hanging off the back of the pushchair wasn't full of nappies. I think it contained her brain. All that hassle in the search of a skinny latte...

Despite pushchairs and Mum being patronised by various shop assistants, I think she had a good time, especially in Paperchase, a stationery-lover's paradise.

Whilst I know that I'm really helping Mum by taking her out, trips like this are filled with sad vignettes that will stay with me for life. We went to find the cashpoint in Boots and Mum said she would like to find out how much a small bottle of Channel No 5 costs. She had tried a sample of the perfume in a magazine and said that she would like to treat herself to some with the points on her Boots advantage card. She didn't have quite enough points, so she said she would wait until another time. There is something very poignant about this. Here is a 68 year woman, not far off the end of her life because of illness and she's still thinking about things she'd like to try. She'd never had a bottle of Channel No 5 and I never knew she wanted one before today. Such a simple thing like Mum wanting to buy a bottle of perfume that she'd not had before moves me to tears. And it's more than just the materialism of having something luxurious. It shows me she's not giving up just yet.

Tuesday, 12 January 2010

Honey, I cancelled the carers II - shrinking the visits (again)

Sorry if I'm starting to sound like a broken record, but after another casual conversation with Mum the other day she said "Well you do know I've cancelled the morning visit from the carers". Yes, of course I know, because I can read minds. I didn't know anything about this, as it wasn't a discussion Mum had with me, it was one she had with the MacMillan Nurse. This is the same MacMillan Nurse that I had previously phoned to say how worried I was about the reduction in the number of visits Mum was having from the carers, a discussion which had obviously disappeared like Scotch Mist in the vale of Brigadoon. A couple of people I've told about this are amazed that the MacMillan woman didn't think to give me a call to involve me in the discussion, these nurses being practitioners who see the care of the patient to involve those who link in with them, family members for example. She's obviously not one of those practitioners...

I was very annoyed and disappointed that Mum had felt cancelling the morning carer's visit was a good idea and did ask her if she knew how worrying this was for me. I said that if she got up in the morning and didn't feel like making her breakfast, she would then be waiting until lunchtime. If she called me for help, I might be on my way to work somewhere in the wrong direction from her house, or snowed in even, not such an unlikely prospect. We only managed to dig out the cars on Saturday, so if this situation had occurred last week, she really would have been on her own. In a childish rage Mum said she would "speak to the Macmillan Nurse" (Grrrrrrrr!) and get the visit reinstated, but on seeing Mum today it's obvious she had no intention of doing this. She was actually quite glib about it. My reminding her that she would have been very worried had my Granny (her Mum) refused her carer's visits did not hit home.

So that's how things are. Mum is just having a lunchtime visit and no more. Will I wonder every morning if she managed to get her own breakfast ready? Probably. Have I lost all faith in the MacMillan Nurse? Certainly.

On my way home from Mum's today, my phone was ringing and I managed to access the message that was left at some traffic lights. I had left my house keys back at Mum's. Bummer. This is the product of having such a full brain. I had also forgotten to put my glasses on this morning, something I'd not realised until I was in the car and everything was slightly blurry. I LOATHE the fact that all that's going on with Mum makes me come across as being ditsy. Yuck!

Wednesday, 6 January 2010

Honey, I cancelled the carers

And the snowy picture of the day is....

It's high time I posted the account of the Christmas period. Ho ho ho!

On Christmas Eve I was thinking what a miserable prospect Christmas with out Dad was. He was always the Christmassy one, the one who organised the tree and the dinner, the one I went to the footy with. I would have gladly not done Christmas this year, but as I missed Dad's last Christmas because he was on chemo and I had the 'flu, I couldn't miss what could be Mum's. I'm not really a Christmas fan anyway, Bah, Humbug, enforced festivities, yuk, etc, but really did wake up on Christmas Day with a sinking feeling.

We got to Mum's just after midday and I asked what there still was to do to for the dinner. My brother was not looking like he was going to participate any getting anything ready. Mum said she had put the chicken in earlier in the morning made a list of the timings of everything else. I was also wondering why there were two pans of boiling water on the hob, without anything in them. "They're for the veg!", Mum said, like I was an idiot who thought the kettle was for boiling the water to cook up some frozen veg, an idiot who didn't appreciate that the pans should be boiling for half an hour before the veg was ready to go in. Mum's list was very thorough and included all the different cooking times for the rest of the items, but with no indication of the actual time that it should all go on to be cooked. Dad used to be very good at this sort of thing, but being a technical man I suppose it was natural to construct the Christmas dinner into a project with precision timing. I had a quick work out that if the chicken went in the oven at 10.30, then everything had to go in, like, now, but then realised that the oven was on too low for the rest of the stuff, so just put everything in and hoped for the best. I had bought a pre-packed tub of mash when I did Mum's Christmas food shop and looking in the fridge it was nowhere to be found. That was because Mum had put it in the freezer for some reason and, naturally, you weren't supposed to cook it from frozen. So it goes on defrost in the microwave FOREVER...

Meanwhile everyone else is merrily unwrapping their presents. I got to see Mum unwrap only one of the presents I gave her. She seemed very jolly though. Merry Christmas!

Back to the microwave, which didn't appear to be doing it's defrosting job very well. Every time I stirred it up there were big lumps of frosty mash in the middle. As time was ticking on and everything else was nearly ready, I developed an internal dialogue about potatoes. "You can cook mash from frozen, right? Of course you can!". So mash is merrily cooked from frozen. No more lumps. And I made sure it was piping hot. Then a battle in the cupboards trying to find the serving dishes for the veg, the rewashing of the cutlery that wasn't so clean, the disintegration of the meat, the realisation that there were too many Yorkshire puddings. At least I pulled it together at short notice and got everything just about on time. No-one suffered the ill effects of poorly cooked mash, so I seem to have got away with it.

Mum offered to help with the pots, but I could see that everything needed a good clean in the kitchen really, so retreated to the sink with Barry Manilow on Radio 2. His version of River is surprisingly good. It took me nearly an hour to clear everything up, but from a standing start of trouble-shooting the Christmas dinner, I was surprised that all went well.

New Year was pretty rubbish, worse than Christmas for realising that Dad was gone really. I went to see Mum on New Year's Eve and rang her New Year's Day. She made a comment about it being very quiet and not having seen many people out and about. I casually asked if the carers had been and was told that she had cancelled them as she "wanted a rest". Here's me thinking that they were there help her to do just that! So, not only had she reduced the number of visits without me knowing, she was now cancelling visits altogether, even though no-one was planning to go round to see her. I was pretty annoyed and also worried that she'd actually got herself something to eat and drink, so we called round briefly in the evening to check she was ok.

I have concluded there is nothing I can do about Mum's views about the carers' visits. I spoke to her MacMillan Nurse last week and she was quite dismissive about my worries, probably because she won't be the one that's hot footing it over to Mum's house when she finds out she's not felt well enough to cook a meal after cancelling the carers. I am going to go with it for a while and see what happens. However, if the weather continues as it is, I won't be hot footing anywhere, cancelled carers or not. The snow is now definitely worse than when Dad was in hospital last February and very much colder. Of course brother managed to travel the 40 miles to Mum's house via public transport yesterday, with no problems. How some are blessed!