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.

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's memory...

Mum is stronger. But still gets bad memory gaps.

We went into her neighbour's house the other day and, as we sat on the sofa waiting for tea(!) mum looked around admiringly and said, "Ooo. I don't think I've ever been in here before."

Um, but she has. Karen gave her a spare key and frequently calls mum if she is going to be late getting back, asking her to pop in her house and switch on the heating/lights/feed dog/let dog out. Oops.

Up to a point, once her memory is nudged, the original memories come flooding back. It's amazing to witness, actually. She goes from completely blank to "OHHHHHH!!!!!!!!!!!!!" and you can almost hear a filing cabinet opening in her head and all these old photo's come tumbling out. She smiles and her eyes get bigger and suddenly, all the information is just there.

Other things, though, haven't come back. Yet. I hope "yet". As of today, no memory of going in Karen's house before. Hey ho.

As Jane suggested, I am not pushing memories or forcing them, and I'm certainly not saying things like, "Don't you remember?" or "You know!". And I've adopted a rule of only answering what mum asks. Don't add anything. If you do, she'll think she can't remember that either, and that will add stress.