The Sentence

So we finally had the appointment with the neurologist, yesterday.

I had expected to hear about epilepsy, about irrecoverable memory, about finding the right drug regimen to even things out. I had thought we would eventually get us to a place where mum relearns what she can and can't do, and then we would go on from there.

Was I blind? Stupid? Optimistic?

We met Dr B. after a 40 minute wait in a noisy waiting area. I had been reading a year-old gardening magazine. Mum had been wandering up and down straightening the other magazines.

Dr B. showed us the MRI of mum's brain.
"The grey areas are the brain matter..." said Dr B.
Mum laughed at this. "The grey areas are my grey matter!" she said.
"...And these black areas are where there is atrophy." -Dr B.
Mum still chuckling. "Grey matter! Ha!"
Me now. "Atrophy?" I know what that is. Do I? Perhaps I'm mistaken. "Is that...damage?"
"Yes."
Shit.
Mum hasn't heard. She is hard of hearing, has only one hearing aid though she needs two, and this doctor is particularly softly spoken.
The softly spoken doctor keeps pressing a key on her keyboard.
With each click, four new images, cross sections of mum's brain, fill the screen. Each has more and more black encroaching into the grey. Just black lines, mostly, then some with bulges in them, bending, stretching through different areas and spreading out. Wriggles, they look like. Worms. Claws.

"Given the amount of damage, I would think your mother has probably been having small mini-strokes for years. This is now small vessel damage."

"Small vessel damage. Small? Small damage to the vessels?" I am grasping. I know what she means already. I just don't want to know it.
"No, no." she smiles at me. "It is damage to the small blood vessels."

I half glaze over as she explains that these tightened, thinned, blood vessels no longer deliver enough oxygen to my mother's brain, and so there will continue to be tiny, imperceptible mini-strokes, leaving more damage. The epilepsy is not the problem. The epilepsy is the side effect.

There is no way back. Memory and cognitive skills will worsen. At first gradually but expect, she says, to see deterioration occur in sudden, deep steps. She draws these deep steps in the air with her forefinger. Down, down, down. Like a child skipping stairs.

I bite back some badly timed salt water and reassure mum, who has just started to ask what is being said, that the tablets are still OK and that she must just continue taking them.

"Oh! I see!" Mum smiles and nods.

Dr B. asks mum her address. Mum remembers her door number.
"Ah! Hang on!" she has a glint in her eye as she pulls out a phone bill from her bag. I'm not surprised she remembered that, as she took it out and looked at it four times in the waiting room. "Here you are! I'm going to cheat!" She smiles, and reads out her address from the bill.

A few more memory tests.
The day? No.
Date? No.
She turns to me for a clue. "Ah, well, it was Kevin's birthday yesterday wasn't it?"
"OH YES! Chocolate cake!"
"So," presses Dr B., "What does that make today?"
"The day after Kevin's birthday," says mum.

Mum carried on chattering away, as Dr B. advises me not to let her go out on her own, and with that one comment, the title of "Carer" becomes capitalised and affixed to me, as clear as if I had been passed a badge with my name on it.

I had already known this, accepted it. But hearing it all out loud is different. In my mind a long road opens up in front of me. Structured, timetabled and full of sadness.

"I'll refer her to a psychologist to assess the memory damage," Dr B. interrupts my grief. "then she will come back here. There are pills to improve thinking and memory, she can have these."
What??? So...... there is hope then????? But then she adds:
"I'm afraid they only work for about 6 - 8 months. It's only temporary."

I am 43, and till yesterday had never had the experience of having to leave a doctor's room hearing the parting words, "I'm so sorry..."

*** *** ***

Last night, I wept in great sobs in a scarcely lit room. Great, big belly sobs, each coming with no sound till the last bit of breath. So angry: it's so unfair. She is only 68. I want our lives back. I want my mum back. I want my life back. Then another groan, for my own selfishness. I want I want I want. When I was a Christian I prayed every night for her. I specifically prayed for a long, healthy and happy life. I remembered that request for health. I remembered being careful to include that..... so all that was left was to spit swearwords towards the ceiling deity I no longer believe in, "If you want to punish someone for me dumping you, why not me? why her? you sick bastard. You sick, sick f--k. You think you will make things so bad that I come back, in need of a crutch. Not this time."

*** *** ***

Today, I was left guessing how much of it she understood. One little sentence of hers, just a few words, I don't think she knew she had said them out loud. "I thought I would have more time." No violent anger in her tiny, newly-frail frame. Gentleness and tremendous sorrow, but no anger.

Trying to catch up a bit....

OK second attempt to update!

A few minutes ago I wrote, "I have just enough time to vacuum, or to update my blog. So the cat hair can wait." -and then the power went off and my computer screen disappeared into a black dot!!!! HURUMPPFF!!! Well the housework goblins can sod off and wait cos I'm back. HA.

Isn't this a lovely pic of Scooter?Pity about the collar. They don't normally have any, but as it's a new area I thought it best that they wear them whenever they're out in the garden- just in case.

Scooter has settled in really well, though I have to bring him indoors whenever I go out because we don't have a catflap. I don't want to shut him out. I think he might panic once he realised the door was shut. Course, he doesn't think like that, and just grumps cos he doesn't want in when the sun is out.

Fluffy is harder. She stills meows all night. From about 2 onwards. Last night and the night before, I shut them downstairs. They had food, water and a litter tray, a light on and their bedding. And the sofas, too, of course, which are also "theirs" apparently. It worked, in that I managed to get some decent sleep. But today Fluffy is really upset and moody. I can't get a purr out of her and she looks thoroughly reprimanded. Poor Fluff. I've tried cuddles but she's having none of it. What am I to do?

*** *** ***

Mum was in hospital for 8 days. Then, a little after she came out, she had a kidney infection. They put her on 4 anti-biotics a day for a week, ones that gave her stomach ache and made her feel sick. She stayed with us till about a week ago. She is gradually finding her feet again. I am nervous, as the seizures seem to come every 6 weeks or so, and I am looking at the calendar and holding my breath.....

She has good days and bad days. On the worst, she is confused and panics at the slightest thing, her memory is terrible and she can ask or say the same thing over and over, sometimes without waiting for a reply. If she is going to be this bad, it's usually in the evening or late afternoon. She definitely goes downhill with the day.

The worst part is that she is aware that her memory is poor, and that she isn't up to things that she could do before. She's frightened.

It's still hard to get her to eat. She says nothing tastes the same. I wonder if that's the epilepsy, or the epilepsy drugs...... they had to take her off that new one. She was only on it for a week and it made her feel awful....

I see her every day and she rings a lot. We can make plans for tomorrow, then when tomorrow comes she'll call and ask if we have any plans :)

I have to be at her place for 1pm today, so I am typing with one eye on the clock. I shall have to go and get the cats indoors before I leave. They'll grump. Then a walk to mum's- my 159lbs of lard means I shall walk not take the bus. MORE weight!!!!! It's a side effect of the anti-psychotics. And the red wine that I never used to drink.... oops.

I've made a few cards in the evenings.......

Sorry I don't have time to improve this photo.... this one became my Father's Day card. But I never heard back from him. Haven't heard a thing since March. I think it's because of the time I'm spending on mum. When we last spoke, and I was explaining what's going on, he just said, "Well I'm not well either." and hinted that I should have been looking after him all these years. Hey ho!

One for a friend, to thank her for a 3 hour phone call in the middle of the night!!!


An anniversary card, for Luvbug's sister and husband.

Best be off.

Just as I wrote that, the phone rang.
Mum.
What time was it I was coming up today?

Not sure she even remembers the last 3 calls this morning....

Seizing your memories....

As always, thanks for all your messages of support :)

Mum is still in hospital but could be home tomorrow. They added lamotrigine to her anti-seizure meds and kept her in to make sure she had no bad reaction to it.

As to what happened, that's still a mystery. She had a temperature, and that caused a seizure in her sleep so that she didn't wake up. What caused the temperature, we don't know. An infection, they thought, but couldn't find one anywhere. They treated her with anti-biotics till the temperature came down. They chased the last hospital for their MRI results but they never sent them (she had an MRI on 25th March and we've never had the results). So they did a CT Scan which proved normal....

I found her Monday morning. She wasn't conscious for 24 hours after that, going in and out of sleep and delirium. She was all over the place or completely out of it. Nothing in between. Except for one moment, just one, when her eyes managed to fix on mine and she whispered, "I can't take this any more." I tried to talk to her, but she was gone again, unable to reach any more words, jabbering again, reeling again. It was heartbreaking. We left the hospital at midnight that day, the first day.

She has been coming back bit by bit again, but as with the other times, there are big memory gaps. She has no memory of her house move. I took her a photo of her bungalow, and this is starting to come back to her, but the move has gone. So too have all the names of her neighbours, the bus routes, the walks we took, the shops we explored. We have to start again as though she just moved here.......

The hospital is much better than the one she was in in Kent. Finally, she will be under a neurologist. I hope the follow-ups are good. We need to get this under control, as each time I lose a little bit more of her...... her cognitive skills are suffering.... every day, the same questions, no memory of their answers....

Mum in hospital again... another seizure..... can't stop....please keep everything crossed.

In case you thought I'd dropped off the earth....

This is the first time this year I've sat out in the garden alone. It's gorgeous; sunny and warm. I've brought out the table and chairs.

I'm not completely on my own though, as it's Scooter's 5th or 6th time out. Yep, after a month indoors I have finally allowed him his freedom. As far as the fence, that is. And he has a collar, for the first time in many years, "just in case" his curiosity gets the better of him. My reward for such generosity? A bright, perfectly formed wee mousie, delivered to my doorstep with a chortle. Well, um, gosh, thanks, Scoob. I love you too!

***

Now I must insert belated thanks to my two friends Stardust and Bumblevee, who sent me lovely packages from far away, simply to say they were thinking of me. The contents were humbling in their generosity. I should have mentioned them before...... so sorry.....

***

It's hard to get online. I have some lovely photo's to share. The wisteria is out and as beautiful as it promised to be, and I have also discovered a Japanese peony. Its flower is the size of my hand :)

But my days are still- up a lot at night trying to calm Fluffy's meowing- dozing in the morning to catch up with sleep- seeing mum in the afternoon, shopping, talking, trying to reassure etc.- cooking in the evening- taking mum home- then bed or an hour or so with the radio or tv, exhausted. When to blog? Or email, for that matter. Or anything else.

***
I am feeding the hedgehogs still; 4 in our garden the other night. And I saw a fox across the road. And a squirrel on our fence, twice. And today, baby starlings are having their first tour of the world outside the nest with their parents. So life goes on all around. Nature is a great soother of nerves. Oh and the emergency blue pills (!). Took one last night. They do help.
Yesterday was bad. It is building up, you see. I should remember the effect that stress and tiredness have on the bi-polar doobry-watnot.... yesterday I kept crying, I felt such a dead-weight inside me. Mum says she's lonely. But I see her every day. If only my siblings would call, send her a postcard or something.

***

Fluffy has joined us in the garden. Which means Scooter is going to try to show her that it's all his. Must go, before fur flies......

What day is it, again?

- it's something my mum asks quite a bit but I'm starting to lose track, myself, lately. NOW, when she asks me, I have to think back to a day when I DID know what day it was, and then count forward, hoping that by the time I've got there she hasn't yet moved on to the next question. If so, never mind; tuck it in somewhere easily retrievable for when when she next asks...

Mum has been spending nights alone at the bungalow for almost a week now. (Please, quick! Touch something wooden!)

I have been pleased and stunned, really impressed at how forward she has been in speaking to her new neighbours, and joining in with things like coffee mornings down there. But still early days, and for that reason, she spends most of her time with me. We go shopping. I draw maps to show her the layout of the main streets here. We go to tea shops for lunch, and hunt all over for shoes to fit my madly shaped feet or trousers to fit her 4ft 8inch frame (no luck, on either account.)

Meanwhile Fluffy has so far cost Luvbug £240 in vet bills due to a bladder infection which the vet thinks is down to stress. And no wonder. Scooter is frustrated at not being able to go outside and spends his spare energy running to and fro all over the house, chortling, and if Fluffy happens to "be in the way" in mid run, well too bad, he thinks. Just makes the inevitable crash more interesting.

I am back in my own bed at last but never for long; Fluffy being deaf, has no idea how loud her night-time calling is. She starts around 2am, calling upstairs. This one is just for a cuddle, but she won't settle on the bed, I have to come down to her. Fooled into thinking she is settled: by the purring, toes in the air, all smiles, I sneak back up to bed.
The second call will be about 3.15. This is a hungry one, where she can't remember where her dish is. I come downstairs and point it out to her. Stay for a cuddle. All settled. Off to bed I sneak, again
5am. This is the killer one. SOOOOO loud. This is the "Where am I? Where's mum? Am I still alive? What's happening?" one. I come downstairs, pick her up, cuddle her and snuggle down on the sofa together till she gets fed up and goes back to bed ok again. I remain on the sofa till Scooter dives on my head for breakfast.

Except today.
I took one of my emergency-crisis-only Lorazepam last night. I can take one to help me sleep. Ha. I took two in the end. It is 4pm now and I am still sleepily relaxed. The mogs are fed, the carpet hoovered, sort of, the washing is on the line (in the rain) and mum is getting a lift from Luvbug up to our place later. If I had sounded alive when she called this morning I think she'd be here now, or I'd have gone to her.... but no, couldn't keep the sleepiness out of my voice. This was My Head Is Collapsing Inwards Day. I've had banana sandwiches and tea. I wore pyjamas till an hour ago. I only woke up at all earlier when Scooter clawed my eye open in a desperate "Anyone in there?"

So. Luvbug and mum here by 5.15 ish. I guess they will want feeding. Or something. I've no idea what. I am so tired. Can I go home now? Oh no, wait, I AM home.

A normal chore is a joyful change!

I finally did something normal, ordinary and routine: I mowed the front lawn!

It's its first cut of the year, so it was long, but the mower coped OK because the grass is quite thin- we have lots of moss. I don't see moss as a problem, and can't understand why some people apply moss killer etc. I'd like the whole lawn to be mossy! Imagine! Soft, green and spongy and thick, and never needing mowing. Oh! And the frogs like it too!

The smell of the cut grass was uplifting. Next door came out to get something from her car and said to me, "Ooo that smells lovely!"

I replaced two thyme plants, too. The old ones had gone to woodiness. These new ones have darker, less interesting leaves, but they'll have purple flowers.

There is a lot of weeding, but I'm leaving that for now.

And oh!!!!! Imagine my joy when I saw enormous buds on our wisteria for the very first time! It was planted in 2003, a year before we bought the house. We were told to wait about 7 years for flowers. Last year I had words with it. Look, I said, I'm sorry, but if you want to grow all over that bit of the wall you really do need to have more than a few straggly leaves to offer. I'm giving you one more year, you hear?

Well, they say you should talk to your plants. Not sure I've ever actually threatened one before...

Can't quite believe how pleased and excited I am. I think they will be like droplets of blue, like a Japanese brush painting. I can't wait! Is it a sign of middle age to be this happy over a wisteria?

:)

:)

*** *** ***

Mum finally moved up to Colchester on 10th April. She is staying with us for a little while till the bungalow is straight- lots of boxes to unpack and a leak in the kitchen to fix.

Thought things were going smoothly, then she had another attack last Thursday, during which she fell over.....

She is upset, quite low, asking if she will ever be OK again, saying how she was OK this time last year....

I am trying to keep her "up" and just "being there" for her, helping.... then after she's gone to bed, I let it out through crying and take my back-up pills. My head feels full of dark fog. It might well be my head that is causing that smoggy cloud that's stopping the planes flying right now. I suspect it seeps out of my ears while I'm asleep.....yep. It isn't that volcano at all.

Cats taking it in their stride. Though I still have the bruises and scratches from the trip getting them here. Fluffy is fine. Scooter has developed a new meow, like the yap of a small dog. He sits at the window and chortles and yaps. He makes a grumpy noise like "Merph...pt." This is all because I won't let him out! Then the pair have a mad burst of energy, like the other night, about 3am, chasing each other round and round the coffee table.

They keep me awake much of the night and then sleep the day away. I have been tempted to go and poke them awake and say, "AHA! SEE? Not nice to be woken up, is it?" but of course I don't. Tempted though. Ha!

I am sleeping downstairs with them, trying to calm them, reassure them and keep them from waking mum up upstairs!!!! During the day, while off work, Luvbug has sat with mum while I've taken a nap for an hour or two.

It's hard. And the effect is building up. I am running out of steam.

Whether her attack last week was to do with the epilepsy or was another TIA, I don't know. Personally I think it looked exactly like the small TIA she had at the end of November, but now that epilepsy is on her file, I think anything like this will be written down to epilepsy. This is what the doc did last week. Yet is it? How do we know? I feel I am the only one asking the question. I wish someone else would take over fighting for her. I wonder if this is the sort of thing an Advocate from Age Concern does... because I can feel myself starting to wane.

Happy Easter

Easter has always been my favourite season, but this year we have been so busy, and the weather has been so cold, it has sort of sneaked up on me and hasn't been the bright, calm, restful period I've come to associate with it!

Never mind. I enjoyed making some cards. It was nice and relaxing.

I'm afraid most of them will be late, so more Eastertide cards than Easter cards!
Here is a selection of what I managed....

(Any guesses for who this peachy feline one went to?!)

Different!

I sent this one to my brother- I thought my young nephews would like the googly-eyed sheep.

This is the stamp I used most, "Emma".....

I really enjoyed colouring her in...

Do you like my cheeky Felix mug?

Lots of punched out flowers on some of them...
There seems to be something of a snobbery about using peel-off outline stickers on cards, but I think they are quite handy sometimes, like with these branches and birds...

....or these flowers, which I've added little gems to...

Simpler cards are a nice change, too, though...
I went to town on Luvbug's though,
using some sparkly paper that I made last summer......and two little "Housemouse" stamps...cute!

Hope you enjoyed the browse!

Now I have to get back to the packing. There's no way we'll be done in time!

Changing dates...

Well, mum was due an MRI on her back last Thursday at 9am. Then, whilst trying to find a way to get us there by that time, I remembered that she also had an appointment in a few weeks' time for an MRI on her head, at an equally awkward time of 6.30pm. So I rang the hospital appointments department and put it to them that it would be better for mum AND save them money if they did the two at the same time.

After an hour they called back and said, "Oh yes! That's a good idea!" D'oh! Why didn't anyone up there spot this on mum's file? No wonder the NHS is so strapped for cash! These MRIs cost about £800 a time!

They also found a better slot- 1.45pm. So we went last Thursday and had it all done. Mum was quite low afterwards. I suppose being shoved into a noisy tunnel for half an hour does bring it home to you that you're not well...

*** *** *** *** ***

We have postponed the move for a week. Nothing has gone wrong. But this way mum will have Easter at her regular church, and I thought she'd like that. Also gives us longer to pack.... today we are packing up all her ornamental dragons!

Things are starting to fall into place. A local cat shelter is taking the stray that's been hanging around for ages on Thursday. We were worried about what would happen to him when mum isn't here to provide food, a box in the shed and a hot water bottle on cold nights.... :)

*** *** *** *** ***

As ever, thank you all for your lovely messages and emails. It really is a tonic to read them. I haven't been on here for a few days because since last Thursday I seem to have a dose of tonsillitis. Bleagh! Seems to be easing up now. But for a while I felt I had been run over by a truck! Luvbug says I'm probably just run down, ....not run over ... :)