Happy birthday to me! Phil up a few times during the night so was a bit shattered. Deb and mum Phil-sat so I could sleep in after a breakfast made of cherry bakewells and a nice cup of tea!
Big parcel arrived from Kate in nz with enough sake to give me alcoholic poisoning. *frantic cheering*. I do loves me some sake!!
Phil is for some reason incredibly tired, has slept almost all day, like he’s drugged. Too cruel to keep him forced awake and the weather is too crap to take him out for a spin.
The afternoon entertainment consisted of taking Phil to Kings hospital for an EEG. Couple of hours of fun and games. Was quite odd sitting there watching Phil’s brain waves. Those squiggly lines were the pattern of an incurably diseased brain, but they just looked like any other squiggly lines, what would normal squiggles look like? Phil came back deathly silent, not speaking to anyone. I don’t know what he’s thinking but I can guarantee it’s grim and dark.
Back home and straight into the kitchen to cook dinner! Shared my beer with a beef casserole. Greater love hath no man. Still at least Phil will eat carrots and parsnips now, just grateful for something he can chew.
Casserole stewing away and me sitting here attempting to have a ‘meditate’ in the smallest room and I can hear Phil being difficult, seen Deb and mum on the case… Off I go! Really, the fragmented lifestyle can occasionally become absurd.
The day finished up coaching Phil into having a poo then watching Elgar on TV.
Comparatively uneventful night, Phil slept… well he actually slept! Only got up about 4 times!
Because of her arm, Mum had asked me to get up early to get breakfast ready and Phil out of bed ready for the carer. So I did, and… Laura had already got up, set the table and made breakfast!
We laughed we did!
Deb and Laura went to Kings Hospital again so they could check that the arm was ok, the doc was very impressed with the setting that was done the night before. So again, it’s all looking good. They decided it was so good they wouldn’t change the cast for a fibreglass one, so we have ordered a plastic bag cover thingo for Mum’s arm so she can have a shower.
Just kept pushing Phil round the estate whenever he got antsy, spent a solid 30 minutes walking him around with the Zimmer frame, trying to get him to use it correctly. He did very well, of course completely forgot it a few hours later =/
There was one funny bit at the end of the day…
Phil and Laura in bed, I make Phil a glass of hot milk in a final last ditch effort to make him fall asleep.
He says “Are you making one for that lady over there?”
I reply “You mean Laura? Your wife?”
He looks at me astonished “She’s my wife?”
Phil leans over and in a very posh voice says “Hello there!” and shakes her hand
Another great spring day if a bit cold so i suggested we walk to Burgess park. So mum dad and I set off.
Gorgeous day driving the Crocus flowers to new heights, we walked to the little cafe. This was such a common walk that Dad even remembered bits of it.
We were almost home when…All fall down! Mum tripped over a kerb and hurt her wrist. A couple of guys in a van pulled over and helped out, a neighbour came past and went to get deb while I was on the phone to emergency services, kindness everywhere you go. Looked like a break or dislocation, was hard to tell
Mum was in good spirits, I told her that this wasn’t the first time we had found her in a gutter, oh how we laughed!! She is as tough as they come.
Dad was very upset at first but I came down hard(ish) and told him I needed him calm while I dealt with mum and he got himself under control quick sharp.
The ambulance arrived quickly. Deb went with mum to kings hospital while I went home with dad. He ended up sleeping, so yeah, another sleepless night but I don’t want him awake and possibly getting distressed about mum. Ho hum!
I will let Deb go into the medical details as she was there at the hospital… (NOTE: Deb has created a small essay!)
To be read in Kiwi accent, easily imitated, just talk in italics!
They were very thorough at Kings with questions about background, medical history, whether she had fallen on any other occasions in the last two years. She said no, not in the last couple of years. I did mention the tumble she took on the escalator maybe three/four years ago, which resulted in stitches above her right eye – although, as I wasn’t there at the time, I wasn’t sure how long ago it was, but I was certain it wasn’t within the last two years and Laura couldn’t remember exactly when either.
They asked how she fell today but she didn’t remember and Simon saw it happen – she appeared to have misjudged the position of her walking stick which slipped off the kerb and caused her to lose her balance.
Of course they wanted to rule out the possibility of it being caused by a fainting spell or seizure of any kind, and I think they were satisfied that it was simply a momentary lapse of attention, or down to visual impairment because of the cataract problems. They said it was optional if she wanted a referral to what they call the “Falls Clinic” just to check things like heart, blood pressure, spatial awareness, and balance. I recommended she go anyway, just to get a full checkup (or MOT, as the medic called it) to ensure we minimise the chances of another fall.
The x-ray showed a dislocation at the top of the ulna (outer arm bone / little finger side) and a clean break just below the head of the radius (the inner arm bone / thumb side). However, the top/head of the radius was sitting down below the site of the break (what they call “stepping”).
I was very impressed with how they proceeded – basically, they laid Laura down and gave her nitrous oxide (laughing gas) to make her drowsy and dull the pain, and then administered a local anaesthetic into the site of the break. I think that was probably the most unpleasant part and I know Laura was quite uncomfortable at that point, but she barely flinched – brave woman! After a few minutes (during which Laura was cracking jokes – now I know why they call it laughing gas!) they made sure it was numb and then pulled it all into alignment with traction – a doctor tugging at each end of her arm.
Then they applied a plaster cast, and x-rayed again when it was set to check the position. Apparently wrist fractures can be tricky to set and this method doesn’t always work, but they did a stellar job and it showed on the x-ray – the head was back in place laterally, although ever so slightly off medially and the doctor said it was within an acceptable range. In any case, an orthopaedic specialist will review it at an outpatient appointment tomorrow, to check that it is satisfactory, but he was quietly confident that it wouldn’t need resetting. Let’s hope that’s the case.
Meanwhile Laura is grateful that it’s her left hand, so shouldn’t affect her ability to hold a teacup – I told her not to attempt too much more than that over the next few days/weeks. Let’s see if she listens! 🙂
Mums in bed now, hopefully sleeping, I’m doing all I can to keep Dad awake to give her some peace and hopefully get a relatively uninterrupted nights sleep. Stuffed him with fish and chips to make him sleepy and will follow up with warm milk and no, the very idea of pouring vodka in the milk did NOT occur to me for an instant!
I tell you one thing that hit home today though; what would I have done if Deb hadn’t been there. How would I look after Mum with a broken wing and Dad without Deb being here. Finding out how much you need other people can be enlightening
No great highs or lows, weather was too horrid to get Phil out and about so he was a bit bored and wanderful (my new word for constantly getting up). He ended up sleeping too much for which we were to pay!
Guy came round to dad sit while I went out rehearsing my folky nonsense.
Phil just wouldn’t sleep, all night I was up and down as he kept getting up and was wandering down the hall. This is actually a classic sign of dementia. He wakes up, doesn’t know where he is and gets confused and uneasy. He will often ask to go home. Things we can do to help are to try and keep his sleep patterns normal, try and reduce daytime napping, keep him interested… Yeah like that’s easy. We will try a nightlight so that when he wakes he can recognise his surroundings. Warm milk before bed. In short, treat him like a child.
On the subject of keeping him entertained I played him some of his favourite music, including one piece that would have reduced him to tears 6 months ago. His responses varied between totally ignoring it or writing it off as stupid. Ho hum…
Anyway, no sleep for me! Mum getting grumpy and seriously fed up with him. There was snarkiness
Early on this beautiful spring day Akin, the usual care worker, is back on the job which is good. He is great with Phil and Phil is comfortable with him
Phil seems relatively full of beans this morning so off we go to the park, and the day is just perfect and you can see the lift it gives Phil.
All the crocus flowers are bursting out of the ground, gives me a lift too!
A lot of Phil’s frustrations are down to being trapped inside a claustrophobic apartment, he’s always been an outdoor guy. I wonder how much a few sunny days outside will improve his mood. We are simple creatures really.
Been a pretty good day really, Phil got a bit tired and down in the afternoon, but nothing compared to the last 2 days. Esther came round in the evening, so that’s a happy Phil right there. He’s asleep and quiet now. Not so bad all in all.
Another good nights sleep. I think he’s feeling a bit more at home. We had another grim moment mid morning.
There seems to be a pattern forming for these distressed periods:
He gets very weak
He gets very distressed and focuses on imminent death, this is intimately tied up with feelings of uselessness.
Constantly gets up and wanders, you absolutely have to stay close and ready to catch.
He gets lots of absences when he is standing during these periods, think fainting and you get the idea. If I’m not there to catch him he will hit the ground. The absences seem to coincide with emotional peaks in the conversation, he builds up to a crescendo then off he goes. You can see them coming, he just goes motionless and stares blankly, you have about 2 seconds to grab him or he falls, his legs don’t give out funnily enough so he topples like a tree. They are much more common since the episode that put him in hospital.
Usual issues with food and drink. We’ve been trying to use music to keep him less bored but it is of dubious effectiveness, even his favourite pieces just drift passed him after the first few minutes.
Ah well, at least there are the British Steam videos… AARGGGHH!!!! I mean, this is trainspotters paradise but I’m sorry, watching extensive explanations of inverse double cycle piston flange balancing procedures is turning me homicidal.
Trundled him round the block earlier, now going out for a drive, the weather is horrid so not much scope for jollies, back later!!!
Well that was as much fun as sticking hot needles in my eyes, he hates driving now. Over an hour of ‘Oh God’ ‘Jesus’ at every turn,acceleration, deceleration let alone speed bumps. Can’t explain what the problem is, whether it’s confusion or physical discomfort, he does complain that he doesn’t know where he is any more. Maybe it’s that, but it’s beginning to seem like any drive longer than about 15 mins has him groaning and complaining about how long it has been. I swear it’s only a matter of time before “are we there yet?”
After a doze back at home, he decided that he was going to eat a serious meal, and I don’t know if it was related, but after a doze he woke up full of beans, asked to go round the block in the wheelchair and when asked said “This isn’t REALLY cold, let’s go!” Full of spring cheer he was. That lasted until 10pm when all of a sudden it was back to wobbly, back to wheelchair, off to bed. Have high hopes of him sleeping properly.
In non Phil related news we are organising a cat door in the little bedroom window, this way we can close them in the room so they won’t set off the alarm but they can still get out removing the need for stinky cat trays. Oh yeah, and on the subject of hoovering I have done a demo of the Wella Technique… Because you’re worth it
To do list:
Am trying to organise someone to sit with him while we have a conflab on how we manage the next few weeks. We all need more respite care, we need to discuss extra help in general, I want to do this without Phil around.
The hospital promised us a visit to review the house for safety issues but not a peep from them so far, will hassle on Monday. I’m glad I had the foresight to note down the name and extension of the occupational therapist who promised to call within a few days. Is a week a few days? Maybe, but I don’t want to wait around as Phil seems so weak more often.
I also want to speak to Emma regarding these absences and Phil’s ever decreasing moods. We must not make the mistake of biting off more than we can chew.
Good nights sleep after reassurance, can feelings stick where thought cannot? the whole house is dozy and foggy headed from too much sleep. The morning starts in peace and relaxation.
Then it all turns dark. Phil wakes up, tries to walk and would have fallen if i want there to catch him. He is shocked at his weakness, in a panic asks questions to which the only answers are brutal.
Why am I like this
Why aren’t you like this
How can I live like this
Why can’t I just die
He is so weak he can’t stand but is raging to walk again, what could be more natural, raging against the dark night. I take him for a walk in the wheelchair round the estate because, having decided that we are killing him, he wants to see people, anyone. Should he be regularly visiting day centres to keep him socialised? Are we enough, are we being arrogant in thinking we are enough?
It’s enough to break the heart of a statue. Leaves you feeling bruised inside, the house feels like a tomb. How you can start the day in comfortable shallows and end up in the deepest blackest waters.
Getting Phil to eat is very hard indeed, he seems to be semi-consciously deciding that he hates everything. We try to feed him little and often, but that means we spend a lot of time cajoling. When he is this low, it gets even harder.
Esther arrived and that always gives Dad a lift, they have a strong connection and while his mood doesn’t improve he is calmer with her holding his hand.
Today was a grumpy bad tempered road trip to Wimbledon Common, poor old Deb, she finally get’s to hunt Wombles, but we end up trying to manage Dad’s fierce temper. We had a quick spin around Richmond Park, spotting deer, which was the er… highlight of a gloomy day. By the time we got back, Dad was really distressed. Ok it was a long drive, Ok it was COLD! That wind could cut glass, but fun factor… low. He was very very tired by the end. I wonder what kind of road trips are ok for him now. Derbyshire… it could be too much… Oh well, going for a drive was his bleedin’ idea!!!!
We got back to find we had a delivery, a huge box of Thornton’s from Auntie Joan.
This evening was cool though, sat down with Dad in a very mellow mood watching…. STEAM TRAIN VIDEOS!!! ARRGH! shoot me now…
The long night. There was little sleep had. Because he had been so tired and sleepy during the day he was wide awake all night talking almost non stop. Hard to understand most of it. Mum was getting tired so I got him up to watch some video around midnight. See if I could give mum some quiet.
He decided this was all a conspiracy, that Laura wanted him gone, that we all just wanted him to shut up and die. Cue a couple of hours of discontented rambling. He is getting bored of train videos, tried some Eisenstein but he could not read the subtitles so it was, as he pointed out, just pretty pictures and only entertaining for 5 minutes. Ho hum, how to entertain him is a real problem, the dementia make it pretty intractable. We have just set up his old digital radio and that has him pretty engaged, Deb’s idea!
Since the hospital a darker bitter side has shown a few times, not sure if it is anything but a completely rational response to a bleak prospect. Still waiting to see how much he will return to normal as he recovers from the last few days, from the initial problem and the stress of hospital. I would expect some improvement but I’m not deluding myself into expecting a complete recovery.
In a way he seems to have more mental energy and to be more aware of his illness than before, it’s hard to describe but for example today he was very tearful over the fact that he could no longer do the gardening which he regards as his duty, he feels like he is letting us all down. That’s very clear and reasoned compared to before, what’s changed… This clarity just serves to make his reasons for being depressed all too clear to him. He is so very restless, he rambles on semi-coherently without cease, we have watch him constantly like a child. He can’t sit still for 5 minutes and if we don’t keep an eye out we find him tottering around. We worry about a fall, so basically we have to watch him closely 24/7, this is tiring in the extreme and it makes it very hard to find time to do anything. Life is chopped up into tiny little fragments such that settling down to do anything is impossible. Ho him, par for the course I’m sure, I bet all you parent types know exactly what I’m talking about.
Physical strength ebbs and flows, sometimes strong, sometimes very unsteady, pretty much the same as before.
But at least we have the cats! Phil loves animals, always has. Sometimes I wish they were more ‘lap cat’ in temperament but they occasionally show some purry headbutty love
Mickey shows greater aptitude for dozing than guarding
Molly is not impressed
Mum’s out at the eye specialists having a check up. Deb helping out. When they get back, maybe go for a drive.
So that was ok! took Dad to Battersea Park. Pushed him around the lake in the wheelchair. Lovely spring day. God, Dad moans about driving, every bump is a moan and a groan and in London, everything is bumpy. Joke: In Britain we used to drive on the left of the road, now we drive on what’s left of the road! Anyway, Battersea Park was very beautiful on this crisp sunny spring day, Battersea Power Station looked very cool in the sun, not that you can see easily from the shitty mobile photos:
‘Ooo you lookin’ at?
Lights, camera, AKSHUN!
Mum news: she had cataract removed a week or two ago but the expected improvement failed to materialise. She went into hospital for a checkup today and they found some macular degeneration. They sound confident that they can treat this with a series of 3 monthly injections. Sounds optimistic. See below for Deb’s summary.
That’s about it, sorry for the ramble but this is one thing I can fit in between Phil chasing sessions. This is me being bored.
Am heartily sick of videos about steam trains!
11pm and he’s still talking, he’s being going for 14 hours… is this a taste of the future. G’dammit Phil! Go to SLEEP!
Info about eye ops:
Eylea is the preparation that will be injected monthly for 3 months, starting 3 March (10am). After the first 3, they will then review to determine if it is in fact having a positive effect; if not, at that point treatment will be discontinued. However, if it is working, they will arrange further injections for up to a year at 6 to 8 weekly intervals.
Since the eye is a closed environment, the side effects are minimal. There may be raised pressure inside the eye for a short period which usually dissipates naturally, but can cause pain (eye or headache). Over-the-counter painkillers are usually prescribed. Very rarely it can cause an allergic reaction, but more often in those with existing allergies. There will likely be some minimal bleeding of the injection site that should not cause concern (will look like a bloodshot eye). As an invasive procedure, there is also a small risk of infection, although as a preventative measure, prior to the injection the eye is washed with disinfectant, and antibiotic eyedrops administered for four days post injection.
Went and picked up Phil from the hospital, it all went smoothly. Phil got in the car with some agility (for him) which was very good to see, means we can look at a few road trips!
He’s home and very tired, slept most of this afternoon. Been on a bit of a rollercoaster, so we’re not pushing him to eat or drink too much today, let him doze and be tired. Back on the regime tomorrow! Confusion wise it’s been pretty good, getting the whole toilet business was actually easier than it often was previously, without too much gory detail! Our fears that he would be on a new level of bewilderedness have not materialised too much yet.
We are thinking of seeing if we can get a helper to come in at his bed time to help put him to bed when I’m out gallivanting and music’ing. See how Deb and Mum go tonight, it would be a pain to have to be home every evening by 9:30 though. See how it goes, not keen on giving up all the music.
I also sorted out an answering service for the land line, so you can leave messages now.