davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Expanding on the previous post...

My trip north went largely as intended, though I got the distinct impression I wasn't on the booked assistance list at Kings Cross. They still got me on the train, though not without a frown or two. The train itself was surprisingingly empty for a week before Christmas, but the rest of the trip was trouble free I was picked up from the station at Bishop Auckland by my sister, who immediately spotted my new Kunzli boots and remarked "They look a bit, um, specialist". I had to admire her word choice. I'd actually considered leaving them at home to avoid family reaction to the orthopaedic look, but in the end they're just so damned supportive I decided to go with them. And the family can always be talked around by a good bargain, such as getting them at 75% off ;)

Visiting the family has become quite strange, because of the situation with my dad I'm left alone in the house from 2PM until somewhere between 7:30 and 8:30PM, while my mother spends the afternoon and evening with him at the care home. I went along once and walked home (I can't manage much more than about 45 minutes with him because of seating issues), but after that it was decided* I was better off going along in the evenings with my sister as I can get a lift both ways.

* Apparently I don't get a vote in the matter. The family is still a bit inconsistent in handling my walking limitations. At times they'll be overprotective, and at others they're pushy.

Dad is very variable. Some days he's very much with it, and capable of making jokes about the immediate context, other times he sleeps all day, or is awake, but pretty out of it. It's clear that not having the aggressive physio he was getting in rehab has caused him to regress physically, but scheduling it for his good days was and is impossible. His speech is still very much affected, and not helped by him mumbling or whispering, or his insistence on using a sentence where a word might do. OTOH it's a lot clearer when he's annoyed! Apparently I'm now referred to as 'Goldenboy' by my sister, because he can always remember my name even if he hasn't seen me in months, whereas he can't always remember my sister's, even though he sees her daily. Whoops! Fortunately my sister takes it in relatively good heart, and her devotion to him, and, especially, my mother's, puts my efforts to shame.

We had our Christmas Day lunch at the care home as the only way of managing to get the whole family together. I thought it was a little sad that out of their 60-odd residents, only one other relative did that (though a few residents were visiting families for the day). I think my mother was a little stressed over how it would turn out, though given she'd normally be stressing over the cooking that wasn't too much of a change from normal, but in the end it was fine. The food was good, better than any works Christmas Meal I've ever had, and if the portion wasn't huge, it was more than adequate. And Dad was on fine form, so that was a result.

New Year's Eve was less of a success. I went along to the local club (as in working men's, not night-) with my sister and her husband, which we've done in previous years, and we even got my mother to pop in briefly when she came home from the party at the home, and while the beer was fine and there was a ridiculously large buffet laid on, there weren't the people who've laid on entertainment in the past, or even my brother-in-law's drinking cohorts, so it just died away, and when someone decided to stick MTV on for music, rather than say Jule's Hootenanny or one of the other New Years programmes, it just killed it (I didn't object to the music myself, but it was completely wrong for the evening and most of the audience and no one had the sense to claim the remote back and change it). So we left before midnight and I was actually in bed by the time the New Year rolled in - sad!

And the next day I came down with a savage cold, which managed at various stages to cover all the traditional woes: streaming nose, hacking cough, up to and including feverish chills. The most annoying part of it was the randomly varying pressure in my inner ear, with associated randomly varying hearing loss, which was just plain irritating. Every time I tried to watch something it was alternating can hear him-can't hear him-can hear him-can't hear him. I think that was actually more irritating than just not being able to hear at all! And it's still doing it ten days later, even though I'm over the worst of it; there'll be a sudden pop and I'll suddenly be able to hear much more clearly. Unfortunately I gave it to my mother and possibly my sister, though neither got it quite as badly as me. And of course it meant I had to stay away from Dad for the last week I was there rather than risk giving it to him, though I was well enough to see him the night before my trip home.

I had meant to be online while I was up there, ordering a 3GB data sim, which should have been more than enough to last me while I was away. It took a few days to arrive, but when it did I hooked it up, did a little light catching up (mostly DW and webcomics), and after 3 hours it announced I'd used up my entire data allowance. I was not impressed. I was initially cursing myself for not turning off Windows Updates, but after a little poking around the system Windows told me that even with updates enabled I had only used 740MB of wifi in the last month, less than a quarter of what Three were claiming I had used in three hours. Not Impressed! But it's an impossible argument to win with the mobile companies. I could have bought a top-up of course, but I was understandably loathe to risk throwing good money after bad. And when I did finally risk their cheapest deal, a) their website crashed, b) Firefox took offence to Kaspersky's ebanking functionality and blocked access to my bank. *Headdesk* *Bah, humbug!*

Being stuck without net access meant I couldn't do the literary agent research I'd been promising to do over the holidays, though I did manage to work my way through the Acknowledgements pages of most of the books of my Kindle - surprisingly few authors credit their agents. On the brighter side it meant I was able to concentrate on writing instead and I'm now 15,000 words into the new novel with a much better idea of where the plot is going (Answer: Underhill).

My trip back worked even better than the trip up, this time everyone knew I was travelling and all the assistance was waiting for me when needed - in fact I had three separate people turn up to get me off the local train at Darlington - driver, guard, and passenger assistance! The only slightly worrying moment was when I came down the ramp at Kings Cross and even with my hands clamped on wheels it was steep enough the chair skidded. (In a masterpiece of not thinking the issues through, the train stops with the exit from the carriage with the wheelchair spaces right next to where the new escalator lands on the platform, meaning there's only just room to get off the ramp before hitting the side of the escalator, and if a passenger chooses to step into that space at the same time you're skidding down the ramp... well, it's just as well she had good reactions...). My subconscious was so completely thrown by booked assistance working without a flaw for once it keeps hitting me with dreams about missed connections!

Weatherwise we escaped the flooding that afflicted most of the North. It was decidedly soggy, but the worst of it was east of us, then south of us, and finally north of us (and of course being a couple of hundred feet above the river doesn't hurt). I saw an awful lot of flooded fields on my trip south, though fortunately nothing to disrupt train travel. Compared to previous years, when we've had to worry about trains being cancelled due to snow, it was positively uneventful.

And so that's Christmas done for another year. Same time next year?

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I did mean to comment on my visit hime, but it sort of slipped me by after I commented on the alarums and excursions of the trip there and back.

The family seem well, my mother (who is 76) is still ridiculously active, spending at least 5 hours a day with my father at the nursing home and sometimes much more, though hopefully longer hours are going to be less common based on a few changes in arrangements that were being put in place while I was there. My sister was taking what advantage she could of the summer break. while still spending some time at school most days. She was also relieved to have Ofsted (schools inspectorate) off her back, having just been assessed on the Religious Ed she was brought into the school to overhaul, and passing with largely flying colours. We managed to have a couple of family meals while I was up there, including a gorgeous Sunday lunch with a huge pile of meat on your plate for the princely sum of £7!

I was slightly amused when my mother expected me to wheel back and forth to the Home, I might have made it back, but going it's a mile uphill with kerb cuts and driveways every 20 metres. I had a look in Google Earth when I got home and there actually isn't that much total change in elevation, but it's humps and bumps and significant enough you feel it when walking, never mind pushing. We settled on going by car (if my sister was available) or taxi, and my walking back using my sticks after spending an hour visiting. I managed five visits in the six days I was there, with Dad having a hospital appointment on the day I missed. Unfortunately he slept completely through my final visit.

Dad's physically well, within the limitations of the stroke. He's been driving everyone nuts by repeately managing to dismantle the side of the chair they have for him, which usually results in him falling out. How he manages it no one quite seems to know, so they resorted to screwing the sides on while I was up there. Cognitively he's mixed, he hadn't seen me since New Year, but his face lit up the moment I walked in, but there were days he struggled for my name. His speech is still badly affected, I pretty much had to rely on my mother and sister to interpret, and they say even they have to just nod along at times, but some of the comments he makes show that he's well aware of his surroundings and thinking about what things mean for other people, not just himself. He's still sleeping an awful lot, which unfortunately means he's not seen as suitable for rehab at the moment.

I'm much happier having seen the Home as well, no matter it's had positive reviews from both my mother and sister. I knew roughly where it was, next to the church we used to attend, but it's on the other side of it to where I thought, which means it's sat right on the extreme corner of town, with a 270 degree elevated view out over the valley of the Wear, giving absolutely gorgeous views. I'm told there are 54 residents, but probably didn't see more than about 20 (there's an Alzheimer's ward on the upper floors), he seems to be one of very few male residents, but my mother's close enough in age to get on very well with many of the female residents. Facilities seem fine, I've stayed in hotel rooms comparable to the one Dad has (though apparently his is larger than most due to the wheelchair), there are two nice lounges (one with bar!) and a large dining room - my mother is eating there as well as Dad and she says the food is more than adequate - from her description Dad is certainly getting through plenty of it! And all the staff go out of their way to talk to Dad whenever they pass. Of course there's a price to all of this, £600 a week, which is eye-watering, but fortunately he qualifies for full funding from the Council due to his degree of disability.

I'm probably going back up in September for a week or two, and I do feel slightly guilty for not being there to help all of the time, but just those few days were enough to tell me that I probably couldn't keep up a daily visit schedule without worsening my own situation, so it's probably just as well I'm still down here.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
After the assessment meeting today, Dad's ongoing care will be fully funded under the NHS Continuing Healthcare scheme - to be reviewed in three months, but they admitted he very nearly got it the last time they did the assessment, when he was considerably better than he is right now. 

Next step is persuading our care home of choice (the one that backed out on Christmas Eve) to take him, and the discharge sister in his new ward reckons she can talk its manager around - fingers crossed.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Dear Dad's Rehab Unit,

12 hours notice of a discharge meeting is not a way to convince people that you are being above-board. It's pure chance I'm at the right end of the country and there's no time for us to contact the Stroke Association for support.
Scheduling the matron of the entire hospital to be there rather suggests you know you're asking for trouble.
Doing this a week after assuring us that it will be weeks before he is well enough to discharge, well Um!
Doing this a week after assuring us that we wouldn't be rushed into anything, well double Um!
A week after telling us not even to look for a care home, because we don't know what level of care he'll need - seriously, WTF?
Dad had had precisely two 'normal' days out of the last three weeks when you took this decision, strangely this doesn't meet my definition of 'stabilized'.
The last care home to agree to take him backed out because of his care needs even before his condition worsened, ignore that reality at your peril.
You want to move him onto the discharge ward, which you told us before Christmas was inappropriate for his needs. You admit his needs have since increased. I seriously doubt you can talk fast enough to convince us.
You are going to have questions asked of whether you can safeguard his care on a general ward, given demonstrated life-threatening issues the specialist unit has struggled with. Unconvincing answers will not go down well.
I am going to compare your handling of this with the treatment I recently received at what is allegedly the worst hospital in the country. You will not come out of this comparison looking good.
I am seriously tempted to pitch this sorry tale to the national daily I already have writing creds for, which just did a feature on bed-blocking. Do not push me. 
Signed
If you think I'm the quiet one of his children you're sadly mistaken....

Grr! Aargh!! *headdesk*
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Crutches)
So the situation with my dad remains complex, though not quite as bad as it might have been.

We had two things happen just before Christmas, the first being that dad started having minor seizures, particularly when he's asleep - and we're talking one every couple of minutes while they're happening, for fairly extended periods, so they are going to have some sort of knock on effect, even if they are relatively minor. Some of the staff tried to dismiss them as just twitches, but we got the doctors to agree with us, so they are being treated, but we're still in the find the right medication process. (And my sister and I are convinced he had a couple of clear absences while we were with him and he was awake on Saturday, though of course there wasn't a nurse there to witness them).

The second thing is that the care home that had agreed to take him backed out on Christmas Eve, saying that they didn't think they could provide the level of care he needs. This would have been disastrous (and distressing), but for the fact the seizures mean he isn't ready to be discharged - and in fact we've been told to hold off on trying to find a home until things settle and we have a better idea what kind of nursing he'll need. That didn't stop one or two of the nursing staff trying to argue today that they should hold a discharge meeting this Friday, which needed my sister to put her foot down, pointing out that the normal procedure is for someone to be discharged 5 days after the discharge meeting, and we have no idea if he will be medically stable by then. She won the argument, and it looks like they'll be hanging on to him for several more weeks until they figure out what's happening and get it settled.

Which is good, but does mean we're back in limbo and he likely isn't going to be settled into a care home while I'm up here.

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davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
David Gillon

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