Friday, 20 November 2009

Back to the Grindstone

We have been away for almost a week's break, first in Ireland and then in St Annes-on-Sea, but it was straight back to work yesterday evening as soon as I got home. With a full day at work for me today, the holiday is almost dissolved, particularly as I am looking towards Mum's oncology appointment on Thursday, but I am so grateful to have had some time off.

Mum was still having a range of visitors before I went away. At one point she was seen by the dietitian, a Community OT, someone doing an assessment for the care providers, the carer and the District Nurse in the space of about 24 hours. Most significantly the MacMillan Nurse came to see us. The District Nurse had referred Mum on to the MacMillan Nurse, hence the visit.

That many people are going in to see Mum that she is actually starting to complain about how many times she's having to say everything, and how tired she is having to see them all, but from my perspective this level of support is brilliant. What a very different picture this is from when Dad was ill, when we struggled to make sure he was being cared for properly with very little input from anyone else. Having input from a MacMillan Nurse means that someone who knows about all the different types of support can offer specialist advice, rather than us struggling to know what input could be coming from services we know nothing about.

So the next step is the oncology appointment. I am partially expecting that the Oncologist will recommend not doing any chemotherapy, but that's just a hunch. Who knows what the appointment will bring.

Tuesday, 17 November 2009

Rose Tinted Spectacles

My Fairy Godmother, Claire from Social Services, came to do Mum's needs assessment today. It was quite detailed and it was a bit tricky to keep emphasising that although Mum thought she didn't need all the input from carers, she might not always feel as well as she does now.

Mum actually wanted to drop the morning visit from the carers, the problem being that she was having to get up early to let them in. It won't be so bad when the key safe is fitted, which is a coded safe outside the front door that the carers access to let themselves in. The key safe hasn't been fitted yet, so that will make a vast difference as Mum could theoretically stay in bed if she wanted to. I was quite concerned that she didn't drop the morning visit. Take my experience of going to see her this morning. She had told the carers not to call as my brother was there, but at 9.30 when I arrived, he was still in bed and Mum hadn't got her own breakfast ready. She then asked me to get her breakfast. So, regardless of who was in the house today, if that had been a day when a carer wasn't doing a morning visit, she wouldn't have had any breakfast. I persuaded her to keep the morning visit and in the end Mum asked them to stop the bedtime call. We will have to see how this pans out. I have a terrible vision of her being bedridden by the chemo and there just not being enough carer's visits to cover her needs.

Interestingly one of the things that Claire was saying was that people are often buoyed by their experience of being discharged from hospital. This was certainly the case when Mum was relating information about her circumstances to Claire. As well as not needing the morning carer's visit, Mum said she got help from the neighbours, didn't have problems with motivation and depression, and was going out ok with family members before she went into hospital. In reality she has asked the neighbours for assistance only twice since Dad died, has ongoing mental health difficulties and would only go out with me for short periods of time, never on her own. I suppose it's difficult to be honest with strangers, but Mum certainly seemed to have had the rose tinted specs plonked on her nose. The information passed on from the hospital has definitely highlighted the motivation and depression issues, so I phoned Claire to say that certainly has been the case, which I anticipate could be a problem again. There could also be a fine line between post-discharge confidence and lack of insight about some issues that have been problematic for years, that are probably too ingrained to do anything about.

Mum's comment about the neighbours was actually quite peculiar. Mr and Mrs Neighbour have been keen to help, even whilst Dad was poorly, but this has offer of practical support has only been taken up on a few occasions. Mrs Neighbour called round as Claire was arriving this morning. She hadn't even realised that Mum was home from hospital. When I mentioned it to Mum she said she knew they didn't know and had been "hiding under the settee" since she got back! Input from a good neighbour is actually the sort of company Mum should be welcoming, but I suppose she's thinking that she shouldn't need their help if a daughter is close-by... All I know is half and hour's drive across the city for me is further a distance than down one driveway, along the pavement and up another driveway for Mr and Mrs Neighbour, even if they are both in their 80s. They are still both very active and Mr Neighbour still drives, a useful contact indeed.

There are lots of outstanding issues: a prescription for Fortisips, raised toilet seat, MacMillan referral, key safe, transition to permanent carers. There's probably some other stuff, but I just can't remember everything.

Monday, 16 November 2009

So Far, So Good.

Mum has now been home for three days and it seems to have been plain sailing. Of course, we've no idea how much the home care is costing yet, so all these reassuring visits could be worth a small fortune! The home care provision is means tested, so Mum will probably have to pay for the majority of the time carers are going in to see her. We should find out all this information tomorrow, as Claire from Social Services is coming to see us to do a full assessment. Claire is like my Fairy Godmother, as she waved the magic wand and got everything in place for Mum, at incredibly short notice.

The timing of the assessment is slightly problematic, as although Mum is still wobbly after such a long hospital stay so requires some input, she's still able to potter around at home. The worse may be yet to come once (if? - we are still waiting to see the oncologist) she starts chemo. Dad didn't have a great deal of the symptoms normally associated with chemotherapy the two times he had treatment, but I know Mum may not be as lucky. Then she'll really need the carers four times a day. Hopefully the assessment will take into account the fact that Mum's treatment has not been finalised. I am trying to think of diplomatic ways to feed this into the discussion without giving Mum the heebie-geebies about chemo.

I did another online shop for Mum yesterday, to be delivered later today. Even though I'm not going to be there, my brother is with her, but I am still slightly nervous that something could go wrong and Mum would say she wouldn't want her shopping doing this way in future. I have warned her that some things might not be in stock, so not to be disappointed if some things don't arrive today. It is so much easier to do the shopping for her this way, so I'm just hoping that she will agree to having deliveries at home in the future.

It is VERY strange thinking that I won't have to go to the hospital today (or tomorrow, or the next day!). When you do nine weeks' worth of hospital visiting, it sort of becomes a habit. It's a good job though, because the building work in the attic started this morning. They are knocking a wall back two feet into the eaves and then creating storage space before putting the wall up again. As I need to be at home, hopefully I won't be called to any emergencies with Mum this week though. Being two places at once is something I've not quite mastered yet.

Saturday, 14 November 2009

The Homecoming

Mum got home yesterday. I had gone across to her house yesterday with Bobby early, just so I could get a load of washing in, sort out the bedding and do some work. I also wanted to get in touch with Mum's Clinical Nurse Specialist, Gill, to talk about the referral to the oncologist. I was on the landline to Gill, when Mum rings my mobile to say the ambulance was just crossing Tinsley Viaduct so she'd be home any minute. Far from waiting all day for her to arrive as we expected, she was home by half past ten.

As soon as she got in Mum was wanting to go through the post and I spent quite a lot of time looking for a cheque book she thought should have arrived, as well as doing the ironing, making lunch, unpacking and trying to work. It was a busy day.

The afternoon was spent with a flurry of people coming to deliver things or introduce themselves. Someone delivering the personal alarm system. People to drop off a perching stool, toilet frame and fit the bath board. A Tesco delivery. Also, the lovely carer ladies, who will only be visiting Mum until Tuesday, when the full-time carers take over. As care was sorted out so quickly, an emergency team has been put in place as a short term measure, which will change again next week. Mum also thought that a District Nurse should have been coming, but maybe that was supposed to be another day as no-one showed. Not sure we could have accommodated another visit, so this was actually a good thing.

The fact that carers are going in to see Mum four times a day is amazing. I was actually surprised how much Mum could potter about the house, despite the fact that she said she was finding some things difficult. She managed to walk right down the long corridor in the bungalow without having to sit down and get in and out of the chairs. Still, it's good to know that people will be going in to help her four times a day, so if she's not feeling like getting a meal ready or needs help with something there will be someone around fairly regularly.

I have phoned Mum this morning to find that she was fine, but had a list of things to ask me. Questions ranged from "Where is the remote control for the stereo?" and "What's that lucozade doing on the worktop?", to "Have you got my Lakeland Plastics catalogue?". I was actually very pleased that she had made a list of things to ask, because often Mum calls every time something occurs to her, which means me taking many, many calls a day. This isn't a new thing, but it certainly exacerbates during times of stress. Maybe she's developed this new strategy to save my nerves.

The carers have already been in this morning and have made her breakfast and put some washing in. I'm going this afternoon for a bit, so I imagine there will be some ironing to do. Must remember that Lakeland Plastics catalogue...

Thursday, 12 November 2009

Loosing Track

I have to admit I'm loosing track. I can't remember who I've told what about Mum's progress (or not) and when I was at the Cancer Support Centre yesterday, someone suggested starting a blog. It means that anyone who wants to know can check in online and read about what's been happening. Simple but effective, hopefully. Hope you don't mind, but my normally reliable memory is faltering and this means I keep forgetting who I need to get up to speed on the latest news. Perhaps this will be a solution for my leaking brain.

So somewhere along the line I became the sad person that others can compare themselves to and say "At least I'm not having as bad a time as Kate!". A dead dog, dead Dad, dead cat, Mum with cancer, dog that hated husband and had to be returned and diabetic cat that keeps having hypos later, it turns out Mum's cancer is inoperable. The tumour in the oesophagus is too near to the aorta, making a risky operation nigh on impossible.

Mum has been in hospital for nearly nine weeks. There has been an awful lot of hospital visiting, an awful lot and I am very tired. We await an appointment with the oncologist to see what the plan is next. As Mum said, she will just have to keep going like Dad did, which is a fine sentiment under the circumstances. It is an underestimation to say that Dad engaged with his care when he had cancer, a PE, nephrectomy, subdural haemorrhage and chemo, and was positive throughout.

Today has been spent in a pre-discharge whirlwind of Mum being sent home from hospital. The short version of the day is that first there was going to be care input for her at home, then there wasn't and then there was again. Mum has called me, six, maybe seven times today and even threatened self-discharge (handy). One time she wanted to know if I had a lightbulb, as her bedside lamp wasn't working. I've also spoken to Social Services (twice), someone delivering all the equipment for her house, someone fitting a personal alarm and done an online food shop. Now Mum has her stent in, it was actually tricky trying to work out what she could and couldn't eat. In the end I flipped a bit and told Mum to stop phoning. When I arrived for visiting this evening, the Sister on the ward thought Mum "not being very happy" during the afternoon was hilarious for some reason. Hilarious? Not. Pending all sorts of different assessments, Mum will actually have four visits from care staff a day. Hallelujah!