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.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
The situation with my father seems to have calmed down somewhat, with the rehab unit admitting he's gone far beyond where they were predicting - the latest I heard was he's progressed to walking up and down the corridor, with one physio helping his leg along and another following with wheelchair. But there's still the problem that they may push him out of the unit at some point in the near future, which is putting my sister under a lot of stress in trying to identify a suitable nursing home that we could access quickly, and not helped by individual members of the unit staff being complete arseholes to her. (Difficult to think of another term for someone who says 'there are people waiting for his bed you know', or 'my staff are scared to talk to you' when she's never said anything to the junior staff). Plus there's the finance side of things, complicated by it not being clear whether he's sufficiently well enough we can get away with a power of attorney, or whether we need to go through the Court of Protection. I had a very useful chat with a fellow bendy friend whose family has been through similar and, even though we could probably do the Lasting Power of Attorney stuff ourselves, that confirmed for me that we really should go through a solicitor because of the potential Court of Protection angle - doing CofP ourselves would cost a minimum of £500 just to submit the paperwork, and possibly well over £1000 if they decide a hearing is required, so it's worth getting the professional input/advice to get it right first time

I had to talk myself out of jumping on a train north on Tuesday, and went and booked myself a doctor's appointment instead. I'm going to be no help if I'm out of play from my own health issues. I've pretty much concluded the ongoing shoulder issues are a torn rotator cuff, which my bendy friend tells me is a bendy rite of passage - yeah, right, one I could do without, thank you very much! But she's right in saying I need to see about getting it treated, and to arrange things so that it isn't under the stress of me using crutches all the time - which is why I booked a double appointment with the GP so I can say 'shoulder's buggered, 1) I need it fixed, 2) I need a wheelchair so I have options, so 3) we need another try at a wheelchair assessment'.

And just to make everything even more perfect, I triggered a major backache while talking to my bendy friend on the phone - sat for too long, so, while the pain is now gone, I've had about 5 hours of sleep since Tuesday, and my body is at the 'why is the world spinning, make it stop!' stage of exhaustion. So I think I'm going to go and send off the short story I've been working on, and then I'm going to try and have a snooze.

And the way life's going at the minute. I'll no sooner get to sleep then the phone will go with {heavy foreign accent}'Hello, this is help department of Microsoft, there is problem with your computer and we need you to....'{/heavy foreign accent}
davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)

More strokestuff, writing it down helps me process...... )

Progress

Nov. 17th, 2014 08:06 pm
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Had my mother on, apparently my dad had a good day at physio, a useful session with the speech therapy people, and has now been cleared to drink unthickened liquids and eat soft (as opposed to pureed) foods. Meanwhile my sister has been in touch with the Stroke Association and one of their specialist nurses will meet with them on Wednesday before going into the 'family meeting' with the doctors with them.

I call that a good day :)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 So my day seems to have been defined by sleep, interrupted by stressful phonecalls from my sister on the situation with my father (or more precisely with the rehab unit being arseholes). I've almost entirely missed daylight today, having slept from roughly 5AM to 4:30PM with about an hour awake when she rang 10:30ish. I'm furious with the unit for the distressing way they spoke to my mother this morning, a blunt 'so have you decided if he's going home or into care?' almost the instant she arrived, when they've only just dropped the bombshell that they don't think there's any point in him being there and no one has had a chance to process that yet, but I armed my sister with a few necessary facts and pointed her at them (this is roughly equivalent to 'Unleash the Kraken!' but scarier).

Meanwhile my dad, unaware of this, has spent the day hitting all the targets that they said he wasn't able to meet, to the point that the doctor causing the issues has had to back down, and, combined with my sister insisting on speaking to people they've agreed he'll have at least 2-3 more weeks on the unit.

To some extent it's only crisis deferred, but maybe I'll be able to relax enough to sleep tonight.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

Writing family trauma stuff to wrap brain around it.

The messy details... )
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Lovely day today, and I was awake enough early enough (i.e. before dusk, my sleeping is a mess right now), that I could get out and do my daily waddle - about 1/2 mile/800 metres - for the first time in ages. Lump in the throat moment on getting home and thinking back when I realised that the last time I'd done it properly was the day before my Dad had his stroke, when we did it together and had a really nice conversation along the way.

I need to re-establish the pattern, and the daily exercises that are supposed to go with it, but winter is a-cooming-in and that isn't going to help. I may have to resort to bribery and corruption to lure myself into a life of healthy exercise....

Also managed to catch up with my neighbour for the first time in ages, who was clearing out the guttering - mine as well as his, good neighbours are a godsend! (Also a reminder to sleep with the curtains shut!)  He'd figured our something was up when I made an unscheduled trip north, and the fact he knew it was unscheduled says how predictable my life is! Feeling guilty now that the conversation was all about me and my family - he knows my dad from their visits down here, and I completely forgot to ask him about the holiday of a lifetime he and his daughter had been on way back at the end of August.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
So, it's a month on since my Dad's stroke, I'm back from another visit, and it's hard.

I'm realising that there is a lot of stuff about stroke that just isn't talked about. A month on and my Dad's situation is all over the place. I think I've seen four different states of consciousness in the 8 visits I managed while I was up there:
  • Mostly himself - the general image of stroke. Yes, he's paralysed on one side and his speech is mostly unintelligible (some days are better than others), but he's himself, he's able to interact in a way I recognise, even to make jokes (apparently when our parish priest first visited he introduced my mother as 'She's the Protestant'), and capable of helping and participating in physio. Even at his best his emotions flare-up very easily - and his swearing is his clearest speech of all (my mother is mortified).
  • Largely himself, but very unsettled - I didn't see this in the first week post-stroke, but Mam and my sister have seen it a lot. He seems to find it impossible to stay in one position, and has a habit of attempting to dismantle the bed around him, or any tube that's plugged into him - that he's an engineer probably doesn't help. You can get brief periods of interaction out of him, but getting him to eat or drink enough takes the patience of a saint.
  • Mostly out of it, and very, very unsettled - like the previous example, but with the bad aspects turned up to 11.
  • Asleep to the point of being impossible to wake - for up to 24 hours or more at a time.
The major worry is three of those states make it difficult to get enough food and fluids into him. That caused a major scare when his blood pressure dropped through lack of fluids to the point the doctor couldn't initially find a pulse when she came by to check him, so they're having to do IV fluids fairly frequently and there's been an extended discussion about potentially inserting a tube to feed him through a tube directly into his stomach (I've lost count of the number of times he pulled out naso-gastric feeding tubes, cannulas, etc).

Apparently this is all absolutely within the normal range of behaviours seen in stroke patients - another patient in the four bed ward was similarly out of it, and a family friend says her husband was also similar - but it's not something you really see addressed in media depictions of stroke, whether factual or fictional. How long it will last seems to be a question with no definite answer.

I continue to be amazed at my (75yo) mother, who is at his bedside from 10AM to 6PM every day, often without a break, and is managing a lot of his direct care such as feeding, while my sister is doing all day (and night!) in her deputy head's job, where they're in the middle of being inspected, then spending 6-8PM trying to make sure he eats as much as possible at dinner time. I feel fairly useless by comparison, as I can't manage more than about an hour visiting before my body starts to object and even trying to help feed him is problematic - I can manage the fork or spoon, but my left arm isn't strong enough to handle a plate as well.

The other people who've really impressed me are the health care assistants, with a couple of exceptions the nursing staff as a whole are really good, but the health care assistants, who don't get nearly the kudos of the fully trained nurses, are the ones on the front lines of the patient handling in both the stroke units he's been in, and they're fantastic with the often-difficult patients.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I'm not sure this coming home to get a rest from family trauma over Dad's stroke is working.

So many damned errands to run, without any time to handle being stressed by them.

Still need to sort out train back North, pick up repeat prescription, work through a fortnight's mail, do something about wheelchair assessment problem, and probably other stuff I'm forgetting, all by Wednesday, then catch train North on Thursday and the trauma starts again.

I think I'm going to try and nap now, which inevitably means my mother or sister will ring as soon as I doze off.

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

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