Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Tuesday, 13 July 2010

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?"
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.


Angel and Kirby said...

I am crying for you and your Mum! It is so unfair that both of you have to suffer through this. She is so young and should have so much time ahead of her. I know you have lost your faith so I will not foster my feeble faith on you. You have the strength to do this but your siblings should be helping, too. I know that is expecting the impossible but we can dream.

Take care of your self. You have to prevail so you can be there for her like she was for you in your youth.

Helena said...

Angel and Kirby, your furry visits are always first and I always smile to see you. Sorry I made you cry though. Hope I didn't offend as well.

Underchin tickles.

Feronia said...

Oh Helena, I feel so sad for you and your Mum reading this. My heart really does go out to you both. I just want you to know that, for what it's worth, I am thinking of you over here on the other side of the planet, and sending you all the warm thoughts I can.

freebird said...

Oh Helena. I haven't been visiting in a while. Boy things have gone from bad to worse haven't they? In England where you live will they eventually place your mother in a facility that can give her care you can't?

I know what you mean about faith. It's really hard when some people claim if you just do this you'll get a miracle but then you don't. I find if God is actually involved it's hard to find the evidence. What we can expect is to find good people who want to make things better for all so we work to curing problems such as your mother has now or we can prevent many of them and over time that is happening but it doesn't help you now. How is your partner holding up with what you and your mother are going through?

What more can I say? I really don't know. You have a tough road ahead but you've been doing okay so far so hopefully you can take it one day at a time. I hope you can find a few minutes here and there for yourself to regenerate. Take care.

Stardust said...

'The Sentence' makes me cry. Sad that your mom is improving very little, and you haven't felt happy for already quite some time. I'm very close to dad. Sometimes, just by imagining the future breaks me.. It must be extremely hard for you.

I'm not upset over your honesty, your feelings are earthly natural. Someday, I'll go thru similar pains for my loved ones, whether or not I'm fastened to my faith.

Someone ever said, the only fairness on earth is that every living being ebbs away... Like our pastor is dying of cancer, 62.

So, I hope it doesn't increase your pain, but your family isn't suffering a 'sentence'. Like all since life formed, your poor mom suffers as a result of various factors, definitely NOT because of you.

It's not selfishness either. Every sane mind desires a wholesome lifestyle.

If you can try seeing things in different perspectives, the energy could be preserved for better places. It's no good fighting the air when you've already asked God to leave the room long ago. I guess God would have hoped that you have peace with yourself at least. Anytime, let it all out if you need, just don't be hard on yourself... Things are hard enough.

I'm sorry about this message being long and painful to read. But know that anytime, I'll read you.

Helena said...

THank you all for your messages.......

Feronia, I hope it warms up over there soon for you ))((

Thank you for popping by again and for such lovely words...


It wasn't painful to read....
you made me smile when you said, I had asked god to leave the room already. Ha! Yes, good point.
I have been trying to adopt a sort of Buddhist outlook of acceptance and not fighting what can't be in my power to change. But yesterday that all went up in smoke, I was so upset, so angry. When I stop kicking it will be less hard.

Dragonstar said...

Oh Helena. Huge hugs for you.

Yes, your mother must, at some level, realise what's going on. This makes it harder for you to shield her. Everything will be hard for you, but at least you now know what's going on. Make sure you get all the help that's available - not that I know what there is these days. Maybe Home Help? I'm sure you know better than I do. Those pills should help her for a bit, and give you some happier days.
Forget about throwing "God" out - what doesn't exist can't harm anyone. I'm sorry if I offend people of "Faith" saying that, but it's true.
Just make sure you take care of yourself. You need your strength now more than ever.

Hugs again.

Julie said...

Helena, I'm so sorry :o( Neither of you deserve this. You have every right to scream and shout and cry. I'm crying for you too. Please, scream shout and cry for all the help you can get for you as carer.

Shrinky said...

Oh love, what a bloody mess (hugs). I empathise only too well with that badge of "carer" being thrust on you. It's completely overwhelming, especially when you are still trying to grasp and understand what has happened, and of how your dear mother will cope. I can only imagine the heartbreak you are experiencing, you who must give her comfort, when inside your entire world is on fire. Of course scream, rail, howl at the moon - it's healthy, natural and completely understandable.

There will be help, Helena. Support and respite is out there. It may need to be asked for, but it does exist. I would suggest you ask for a special needs social worker to be allocated to your mum. (I refused one for years with Sam, feeling it would stigmatise my family, and I so wish I had accepted one earlier) A social worker can walk you through the maze of red tape, and access the services and benefits you and your mum are going to need, to remove some of the practical slog of doing everything by yourself blindfold.

Mostly, you need to give yourself time and kindness. Time to digest and absorb - kindness to accept it is natural to feel angry and resentful - it's not aimed at your mother, it's at the circumstance that's exploded around you.

One day at a time hon, eh? ((x))

mrsnesbitt said...

Oh Helena I too am crying as I read your words, such honest searching account of what would be a devestating moment. It must be heart breaking to feel your mum as she was slipping away from your grasp but deep down she will know you are there by her side in this situation.

I am at a loss to say any words which I feel will help you, but understand I am here and my hugs are always in abundance xxxx

Chrissy said...

Helena, I am so sorry for your pain...there is never much that anyone can say but, I do have some practical advice.
Despite the Doctor telling you that those tablets will probably only work for a few months, this can be variable. It is important that she gets them as soon as possible because they cannot undo what has already been done but they can prevent it from becoming worse. My Mum was diagnosed with Alzheimer's two years ago after a very severe bout of depression, they have made a huge difference, I have got my Mum back albeit, temporarily :D

Meanwhile, rant away...there should be some fairness in life. But, it seems there never is....big hugs XX

Helena said...

THank you all ))((

Chrissy, that is really interesting about the pills....

Bodecea said...

Dear Helena,

I am so sorry for you. I don't know what to say, just send you a bug virtual hug from Germany.


Lynda (Granny K) said...

So sorry Helena. I was my dad's carer when he became ill with a brain tumour. I was 29. You have all my sympathy and understanding.

Be kind to yourself and find the Buddha within.

Love and big hugs, Lynda (Granny K)

Found art blog said...

Mega hugs.