Floor level.

Broke down today.
Lots of tears. You know, the can't-go-on type.
Had an appointment with the Art Therapist.
I'd had to cancel last week's and the week before's because I just couldn't get away, couldn't leave mum on her own.
Today was easier; she wasn't too bad today.

At the session, it all bubbled to the surface, and how, yesterday, for the first time, I felt I couldn't go on.

But if I killed myself, I thought, what would mum do then? Or the cats....

Luvbug, I figured, in the twisted, mirror-think of suicidal thought, he would be ok, he's strong, he could sell up and head to Ireland and his family........ and then yesterday on the news there was a story about a young family found dead in their home. Suicide was mentioned, but not official yet. How could he have taken his wife and children with him, people asked. And I knew how. I knew how, I knew why.

Then I knew I had hit the floor and needed help.

Oops

Luvbug is fixing a catlap to the door. Doing a job off our 'to do' list seems to have given him a lift!! OK I shan't tell him it's back to front then.... hehehe all the locks and gadgetty bits are on the outside. Scooter won't mind.

Oh, and if proof were needed that Fluffy CAN'T HEAR A THING - she has been asleep on the sofa through all the drilling and jigsawing.... :) in fact she's cuddled up to Sam the Bear.

Awww

I wanted to keep a diary about day to day stuff with mum, but was worried about keeping a journal in case I left it lying around and she found it. It would be just like me to do that.

Luvbug came home today with a new toy for me; a baby laptop. I think grown-ups call them notebooks. But I think it's a baby laptop. Haven't named it yet.

Now I'll be able to scribble at will and blog more easily, too.

Awww...... isn't he lovely?

:)

Cats. Not sure where this one would fit in, in that metaphor.

What if...

I wrote in reply to Stardust in the comments section....I am trying to adopt a sort of Buiddhist approach, of acceptance, and of not fighting what I cannot change. It will be easier when I stop kicking. Thank you all for your support, your comments and emails, and for stopping by to catch up.

This morning I had an odd thought about the religion thing.
What if it's like this. Like a goldfish bowl?

Maybe we are the fish, the universe is the water, and the bowl is "god".

Thoughts?

I'm sorry if what I wrote offends anyone, by the way. I don't mean to hurt or mock people who still believe what I can't- I just need a space where I can shout and be angry and honest about where I am.......

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....