Grieving: My Concept of a Job

Apr23

Things have been quiet here. One reason is that I’m working on a website for my writing. A second reason is that I’ve had nothing positive or useful to say about work, redefinition or my learning.

Marty McConnell once said:

“I don’t own
enough rage for it all — I am
ninety-five miles per hour on I-81, sprinting
to track the tirade vibrating
on the next stage

is Anybody Listening?

I live
in search of a cause worth dying for”

Quoted from “Give me one good reason to die”.

I’ve realised I do own enough rage for it all. And sadness. And grief.

I grieve for the injustices of others. I grieve for the childhood, the university courses, the beliefs I had to teach myself in 2007 when I realised my father’s view of the world poisons everything he touches. I grieve for the promises I was always given about a career.

And I’m grieving for the processes I was assured about in my interview. I asked how they run supervisions, and I was answered by ALL THREE panel members; each with their different responses but all agreeing that it’s of the upmost importance and that as a new member of staff I’d get more.

I’ve had 2.5 supervisions in 4.5 months. I requested one two weeks ago, and got no reply. Today I asked again, and I was offered one in four weeks time. Three weeks and 6 days I guess, that’s as good as four weeks. Despite me crying at work last week and this week. Despite me being given a case load equal to other members which I shouldn’t have until my 6 month “beginner” period is up.

Things are shifting, things are changing and I recognise we’re all in this whirlwind – uncertain and insecure… But I am grieving for the beliefs I once held, for the lies I was told and for the loss of everything stable in my life. I’ve left my house, my friends, my partner to come here and do this job.

And despite being told by colleagues at my level that I can talk to them, I’m feeling about as small as I possibly could. I’m told to call their personal numbers after hours, and that I should take this issue to X person. Then X person says it can wait three days.

So here I am, waiting for the days to pass, trying to go through the motions and wondering if anyone is going to notice my crying at my desk.

Because no one did this morning.

Learning on the Job

Mar12

Two months have passed. I’m finally on the new IT system, with a work laptop for hot-desking, and I’m due to get access to the database social workers use.

In the last month, I’ve had to deal with a lot of challenging and overwhelming situations, which I term as “blips” when I cannot cope with them. When I cry during the drive home, I’m clearly not in a space to adequately handle my emotions – making the commute dangerous. When I have to retreat to the bathroom because I’m so close to shouting and swearing and enraged, I’m aware that I’ve neglected my work duties in order to maintain my mental health.

I don’t see these blips as punishable actions, but as a less-than-desirable experience, that I put down to my new-ness.

Communication

When talking to my colleagues about these blips, I’m constantly told that it’s “not a blip, it’s just all new” or “it sounds like you did everything perfectly. You’ve clearly got the potential for this.”

It’s definitely a comfort that the issues I’m experiencing are things felt by the rest of the team in their own ways.

Last Wednesday, I spoke to the senior practitioner, and she asked what I needed to make the Tuesday course run smoother.

Having spent five hours looking after children who haven’t got boundaries or understanding of “no”, we then sit in a room and talk about the parent’s progress for what has lasted a further four and a half hours.

This second discussion is very emotional, and requires everyone’s input and views on each parent. I find out about their back-story, what the children I’m watching must have experienced; and without a break (we eat lunch with the families) it turns out I just cannot process all of my own thoughts and emotions.

After both of the Tuesday sessions we’ve run, I’ve had to leave early, cried while driving home, and texted my partner to come online early. Neither Tuesday could I eat dinner.

Managing Stress

In both cases, on the Wednesday morning, I’ve been able to talk to a colleague about it. But for that Tuesday night, I feel like a complete failure at my job. A week in, crying is allowed. The true realities of the job hit home. Two and a half months, though…

It doesn’t sit well that the crying hasn’t even decreased a little.

But I have my laptop now, so the senior practitioner talked about me writing my thoughts down quietly in the corner and she even suggested I completely disengage and switch off from listening until I’m ready to process the new information. I was glad to find out she agreed with my concerns – that the sessions aren’t structured and there’s no proper time-keeping.

And whenever I bring up a concern that I’m not handling things as I wish I were; I’m told that I’m doing everything right, that I’ve done so well to enter the team at this time, and that they’ve not felt this busy and struggled this much in years.

Creating Gaps

All I can do is take each day as it comes.

Today I know I’ll have to ask that child to pick up the toys about five hundred times. I know those two babies will cry and set each other off.

And I know that I need to take my laptop into the meeting following. I know that I need to go to the loo and grab my belongings before I sit down.

I’m learning that I need to create a break for myself; that I need a time to process when no one else provides a gap.

– Rose –

The Disappearance of Personality

Mar5

I’ve spoken before about my grandfather, and his Alzheimer’s Disease, but as with all stories, changes and new instalments occur.

Last I wrote, they were taking him off the Aricept. That was less than two months ago.

Last weekend, my parents saw him. He seemed well in general, until he asked after me, when he insisted he’d never been told that I have a partner.

He has met my other half several times over the last 6 years – but according to his brain, he had never heard of this, and asked what he’s like, and whether we would marry.

I wondered if he had forgotten my O.H because that little pathway is inaccessible.

But the fact that I’m with someone, might have stuck.

It seems not only has he forgotten the most important person in my life, but he’s forgetting more of me every day.

I cannot explain away that sadness.

My heart broke when I realised he will never know my future. Even if he lives long enough, he’ll never know my marriage, my children. And they would never know him.

Because he’s not just losing his memories of his family.

He’s losing himself.

I’ve talked before about my wish to be a scholar, and how in this topic I just can’t bring myself to understand the science of the disease.

Nevertheless, I told my mum he might have just had a bad day – that loss isn’t linear in this disease. That the protein build up on his neurons shifts every day, and that only specific neurons will have been affected.

But he used to have such a sense of honour, of loyalty; such a love and respect for education, and he used to get everyone out of their chairs to go for a walk, or play tennis, or croquet.

Hell, we played croquet less than six months ago, at his request!

It seems the man my mother had to sit beside knows none of those things.

From my understanding, he’s not supposed to lose his core identity only a year or two into a disease described as “early stages, slow moving”. Not two months after he’s been taken off the medication that only halted it for six months in the first place.

The loss of new events, the inability to find the right words to explain things and the personality differences don’t occur in stage 1.

Which means he’s shifted in stage 2 of a 3 stage process.

And the small child inside who remembers him bouncing me on his knee has realised:

I’ll never get him back.

Panic Hiding Behind Overwhelm

Jan15

It’s the third week of January. I have so much I want to talk about, but it’s all whirring around in my mind as an incoherent mess.

I want to impart my findings about my misconceptions of work, and of the transitional difficulties in moving to a new place, new car, new job… I want to talk about my mini-epiphany relating to working and money-making, but all I can think about is how I ended up crying in my manager’s office.

The Trigger

Last week was a bit of a failure in terms of the job – I observed two sessions on Monday afternoon. It seemed a bit boring and I felt that it was a waste of time for one session, but made sense in the second. The lady who sat beside me, explaining things as they happened, often made comments like “oh I wish I could just tell her what I think” or “but if she knew X she’d get it.”

But this was X session, so only X tools could be used.

I had been told that day that I should go on the training so that I could run those sessions once a week. Everyone else in the team had done the training (and I think it’s a useful tool for general life, just didn’t like how “pure” the sessions had to be).

The Signs

Monday night, I cried while driving home, feeling overwhelmed.

Tuesday morning, a colleague asked how I found the session, and I burst into tears in the middle of the office; in front of five colleagues. By Friday morning, when I had supervision with my manager, I had spoken to every colleague about how much I didn’t want to do those Monday sessions.

I sat in my manager’s office and asked to add this topic to the agenda. She asked how I was, said she was happy with my work so far and that I seem to have found my place in the team. She mentioned how people saw me as competent already (this is whole new field of work for me, so I’m not competent at the specific tasks yet) which is a nice thing to know.

And then I cried.

We talked through my overwhelm: she said it was normal and that it’s fine. We discussed my week, my caseload and I said I’d gone to the rest of the team for support when I began feeling panicked.

And then we discussed trainings in mental health, neglect, equality and diversity and so on… She asked how I found being away from home. It was all calm again.

Then we got to the sessions, and I just babbled. She sat back in her chair and let me talk, crying again.

She asked which bits I was unhappy about, and I felt ridiculous – saying I hated the idea of knowing saying Z would help but because this is X session, I wouldn’t be allowed to mention it.

In my head, it came out as: “What kind of prick holds back something they know will help someone?”

I Couldn’t.

The Aftermath

She suggested I not do the training, though I had already booked onto it (as requested on Monday), and sent an email to the woman in charge.

I felt instantly better, and then dreaded seeing my colleagues who had all done the training.

Why was I not to do it?

What makes me so special that I can choose not to do this training and provide this service; especially if my problem isn’t even with the approach?

I like the idea of this tool. I just hated the idea of having to keep it pure; but surely pure X is better than nothing?

I felt torn: not wanting to do it, but not wanting to write it off on one observation.

I dreaded seeing the lady who sat beside me, explaining it all.

Because my explanation doesn’t really make sense (not even to me).

In the end, I had to trust my body and my emotions.

I lost 4 nights of sleep, cried 5 times, thought about it constantly for 4 days, and I still wasn’t happy. I wrote a reflective piece about it on Tuesday, and again Friday.

After all that, I was still so upset I cried about it and felt panicked.

So I have to honour that reaction, and trust that the team won’t think any less of me.

Hiding Behind Overwhelm

If anything, the team have been so supportive they’ve said “You mustn’t go home feeling that bad; call me at home. My mobile’s on – I don’t care if it’s a weekend, don’t be alone with that unresolved stuff.”

I had blamed the tears and sleeplessness on overwhelm, but removing that one pressure made the rest instantly feel manageable.

I’d labelled this emotion “overwhelm”, and it was to some degree… but it was overwhelm of one training; one commitment to a Monday afternoon a fornight.

And because it doesn’t make sense to me – I didn’t hate observing the sessions at the time – I didn’t delve any deeper into those feelings. I missed the massive cues my body was giving me.

So I spent this weekend reading up on that tool; so I have a basic outline in my head. It’s a really useful tool for general work, which is why it doesn’t make sense to me why I suddenly felt so aversive to it.

But I need to trust my body, and know that I can always do the training next year.

– Rose –

Dealing with Transitions: January

Jan8

It’s the 8^th of January. I’ve officially spent 17 days in this flat.

I’ve had 10 days at my new job.

I’ve had my car 9 weeks, and driven 1000 miles.

The first week of 2013 has been a stressful one.

Reflecting on Living Alone

It’s been interesting, living on my own. I feel relatively safe here, and I’ve really got the hang of parking in my allocated space.

I’ve been here nearly a month, and all the payments are due – bills, rent, council tax and so on. On top of the newness of my job, my first paycheck was partial and the tax code incorrect, so even though I should be able to plan my new year and to enjoy the fruits of my work, I’m anxious about money and unsure how to bridge this gap.

The Job

Having never done a day of 9-5, I’ve found it difficult to adjust. On top of that, I actually leave the house at 7:40am and get home at 6pm. The idea of cooking, learning and even sitting upright to game or read a book just doesn’t really arise.

I’m enjoying the work, and I’m actually stupidly excited to be running courses again. Yet, I’m reading family files and hearing about cases of child abuse, neglect, and domestic violence. Yesterday I sat in observation and listened a family argue. Driving home, I had to really focus on not crying; as I struggle to see while night-driving as it is, without tears blurring my way.

Also, though I love planning and to-do lists and even enjoying typing up files for other colleagues, the fact that I have planned 3 days a week from now until June has blown me away. I’m beginning to struggle to keep my head afloat.

Driving

Driving to work in the morning and even parking are do-able for me now. I’ve found a nice route to and from my two main places of work, and I actually enjoy the morning drive.

However, instead of driving 8 miles a day, as I’d planned; I’m spending 4 days a week in another town, 20 miles away. Then I drive to various centres and offices throughout the day. This means instead of filling up petrol once a month and only commuting for 25 minutes a day, I’m doing close to 50 miles a day, and my commute home lasts 45-60 minutes, in the pitch dark.

I didn’t know how much I would hate driving home at night until I went to drive home on my first day.

It’s my idea of Hell.

Supporting Myself

The tiredness, the loss of sleep in the mornings (waking an hour earlier), the late arrival home and the general emotional content of the day exhaust me. Last night, following an emotional day actually seeing families in a room arguing and hearing kids fighting; then to drive home in the dark, absolutely terrified of crashing and scared of the dark in general, I turned again to my new supportive system – panic speak:

“You can cry when you get home, it’s okay to be scared, you’re going to be fine. You’ve driven this way home in the dark four or five times now; you can do this, you’re allowed to cry when you get home.”

And so the 45 minute drive home, as with every weekday so far, is full of blaring music, hands gripping the wheel so tightly my arms ache, prayers to any higher power who will listen and eyes firmly unblinking so tears don’t fall.

Recognising it’s all Temporary

I’m excited about the work, I like having space for myself, and the morning drive is so enjoyable. Yet each night I’m having to talk to myself in panicked slurs, desperate not to have a panic attack nor burst into tears.

And I’m struggling to keep my head afloat, aware that this is a temporary shift – and that in a few months time I’ll be doing it all without a second thought. But at 5:30pm tonight, I won’t be able to remind myself of that. I’ll be too busy fearing for my life and allowing myself to cry.

And I’m trying to remember that that’s okay.

– Rose –

Rose (MSc): Graduation Fears

Oct23

It’s official.

I passed my Masters in Cognitive Neuroscience. I got a first in my dissertation, and I beat my BSc score (though the grade is the same).

Results came out last Wednesday at 4pm – while I was at my granddad’s house. So I used my snazzy phone to look it up as the time rolled around. My granddad didn’t even respond; despite explaining what it was and what it meant.

Just thirty minutes before he’d asked if my new job would make use of my degrees and would it allow me to keep learning because he knows I need to learn to be happy. He’d gone on about his own school days in a military school, and his first jobs. And come back to “your degrees, they’re good?”

Telling him I’d done better in my MSc than my BSc, and better in the MSc dissertation by a whole grade; he barely registered it. Telling him I was happy with the results left no impression. Within ten minutes, he’d forgotten. Mum proposed a toast at dinner to my results and he hadn’t just forgotten; he ignored it as if the reminder hadn’t even registered.

I’m not bothered that people don’t care – I’m bothered that this is something he should be excited or happy or concerned or interested in – because he values education so highly.

Graduation

At the weekend, mum asked if I want to go to the MSc graduation in January.

It’s a lot of money and fuss, I only made two friends on my course, I don’t have a dress and I’d be taking a day off work. But I could get a proper photograph, the gowns are nicer for masters, my partner might be able to come, I’d get to see my two friends…

And when I think back to my BSc graduation, all I remember is being told that my granddad is going to the doctor because they think he has Alzheimer’s.

* * *

But I doubt he’d even come to this one.

They’re taking him off the medication and he’ll go back to declining at a faster rate.

I read a New Scientist article about the hopes for prevention ~ but they won’t help my granddad. His wife asked me what he could have done to stop it – could he have eaten better or exercised more?

I don’t know many people with dementia who have climbed mountains just a few years before. Snowdon 3 times. Ben Nevis twice. He eats healthily, rambles, goes square dancing, paints, reads the paper, does the Sudoku puzzle daily.

But he has a build up of plaques and is on the verge of depression.

And Aricept caused him heart rate to reach 45bpm (for a 65+ year old the rate is 50-55 if they’re still an athlete). He’s 84. He should have been unconscious with that rate.

So they’ll likely take him off the drug, and he’ll be even less likely to be himself, to be excited, and more likely to feel depression. If he declines faster, will he forget to be depressed? Would he be happier?

* * *

At my BSc graduation, I found out about his Alzheimers. Last week at his house, I found out my MSc results, and got no response.

The time for mourning may have already arrived; but I don’t want to give up hope. I can’t fight this, but I don’t know how to just give up.

And I’m not sure I want to graduate without him.

– Rose –

Westminster Policy and Practice Briefing: Innovation in Early Intervention

Oct9

Back in September, I attended a conference. The topic was “Children and Young People With Mental Health Conditions: Improving Early Intervention and Outcomes Locally”, and I was there to talk about the outcomes in Brighton.

I won’t go through all the different aspects of the day; but I would like to share some of the questions and comments made, and my responses to them.

Please note these are all the personal opinion of one person; based on my experiences and those experienced by colleagues and clients. Some of these experiences are my own, some of people I’ve known and worked with.

*In a survey, 26% of young people who have been stigmatised wanted to give up on life.*

Can I make that any more powerful a message?

Questions, Quotes and Responses

“Does Self Harm spread? Can it be grown out of?”

I would say that it does spread, as “this helped me. Feel free to try it in case it helps you”.

Some people seem to be able to find other ways of dealing with stress. In others, it’s like eating disorders as when stressed, the temptation often returns, as the brain remembers “that worked” and thus it’s hard to forget.

“You get person A not thinking to cross the corridor to person B to ask if they know of anyone who can help. It’s just a fact of life.”

I DISAGREE. That sounds like poorly-trained professionals to me. I can understand time-constraints, or Person B being busy, yes.

“Forgetting” to ask if the children’s department can help this child is not “a fact of life”; it’s a problem that needs solving.

“I was surprised just how basic I had to get when talking with teachers.”

The things this speaker defined as “basics” were words I did not recognise, despite understanding all about CCGs, resilience, talking therapies and the shifts in commissioning. These are not “basics” to a teacher. These are JARGON. Just as all my neuroscience words are jargon. As are dentists number of teeth or doctor’s notes.

I would suggest when working with people from another sector, that you try using words you learned outside of the industry. I would never expect people to know what I am saying if I’m using the specialist terms of my specialist area.

“A report by OFSTED found that schools wouldn’t “spend money on playground tarmac” (CONTEXT: schools feel that spending money on mental health is as important/useful as redecorating the playground)

If schools view mental health as being as/less important then play-time (which is damned important, I’d like to add), I think they should quit, or shut up.

Would a school say “we won’t spend money on access for wheelchairs” or “we won’t spend money on ensuring there’s no asbestos in the ceilings”. Mental health is part of physical health and just because there’s no law saying you have to, doesn’t mean you shouldn’t.

*50% of people who face a mental health problem experience the beginning before the age of 14.*

That means that anyone experiencing mental health problems before the age of 15 isn’t a “faker” or “trying to be cool”. They could be 50% of the future-adults who will experience a mental health problem.

Your Input

How would answer those questions?

Can you “grow out of” Self-Harm?
Does Self Harm “catch”?
Is mental health important in schools?
Should everyone working for a company know at least how to get hold of the other sectors within that company?

– Rose –

P.S. Again, this is just my opinion. I have deliberately kept individual and company names out of this post.

Mental Health: Just Part of the Story

Oct2

Sometimes, I think of myself as an open ambassador for mental health. I talk openly about my OCD-type symptoms (in order to be diagnosed with OCD officially, it needs to cause me distress, and I’m happy to be pedantic, thank you), my depression and anxiety, my panic attacks and even a little about my background.

I talk here about my fears, my anger and how I’m overcoming limits in my everyday life. I came to create redefinition alchemy not by choice, but because I could no longer live the life I was living. I couldn’t go on in that state, with the perceptions I had.

More and more often I have been hearing comments that I’m so open about my experiences, that people wish more openness existed.

However, I feel I should tackle this mis-perception.

I am not open about the experiences which have heavily impacted my mental health.

The Appearance of Openness

It’s quite sad that people think to talk about depression makes someone brave. That means it’s still such a taboo.

It’s sad to realise that people think it’s special to talk about fear – something every human experiences.

Why is this not normal?!

I appear open because society thinks these things are abnormal (at best) or taboo to talk about.

I think it’s normal to discuss them, because I have my own list of taboos.

I have experiences so much worse than the ones I share here, that these mentioned scenarios are nothing in comparison.

I’ve written so many posts I never publish. If you think I’m being special to talk about my fear of the dark? Wait until you see the story about someone threatening to kill me when I was 14.

You think it’s a big deal that I write about panic attacks? If only you knew the two experiences which caused them.

Normality

Society, as I have grown up knowing it, sees norms as abnormal, and will go to any length to find difference in a race of beings who are the same.

Do you think mental health problems are abnormal?

1 in 4 people have them.

Do you think emotions are something only you feel? Does any human never feel fear or anxiety about anything?

All humans have the brain areas which cause chemicals causing emotions.

Do you know how many people have the deep stories of traumatic experience within them?

I bet every person has at least one.

These are conditions common to humans. And it’s been shown that talking helps.

So WHY can’t I talk about them? Why, people of 2012 do we not allow people to tell their story?

We in the Western world who condemn slavery and the separation based on race or gender – why is that wrong but mental wellness and mental illness are split down the middle?

Why is it inappropriate for me to say “yes, I’m afraid of cars – someone once threatened to crash the car with me in it, and even today I don’t know why he was upset”?

A Shift in Acceptance

Looking back at last week’s post; WHY must I be okay to drive just because John Smith likes driving cars and he’s my age?

Why can I not share that story with other humans?

Why won’t you speak out?

Are you so afraid to speak up?

I am afraid. But I’m standing up now.

And no, I won’t talk about the other incident or the other diagnosis. But I can tell you that every human being in the world has some experience of trauma, and that as I define it, every single person has experienced abuse.

So why don’t we take the time to change the stigma around mental health?

I’m ready to be heard.

Are you ready to listen?

– Rose –

Mental Health: Stigma Around Experience

Sep25

I walked home from the dentist a few weeks ago feeling hurt and angry.

It’s a feeling I’m familiar with; and I know how to deal with it. I put on some music and I spent 30 minutes on the swings* in the local park until a child arrived to play. Then I came home and had a large glass of vanilla milkshake.

* This is called “self-care”, by the way.

I know the emotion well. It’s the feeling of being judged by someone who knows nothing about me. And it’s a really big trigger of anger in me.

Omission

Ellie wrote a post a few weeks ago about how she wants to include more of her story in her blog; the links between the theories she uses and her life experiences. As I walked home, I had a similar feeling. I wish it was acceptable to include my story in my life.

I hate how ‘inappropriate’ and stigmatised sharing life experience is.

When I am judged for having panic attacks, or for not liking needles… when people say that “everyone else does it” about something I don’t like doing, as if I’m the same as them… It upsets me, and it infuriates me.

Because I know the power of having reason.

When you have a reason, when you can explain you actions ~ understanding, compassion and acceptance arrive.

The Power of Explanation

That girl who has panic attacks when people get too close to her? She’s not being “overly sensitive” or “a weakling”. Let’s say she was violently raped.

Would people maybe be more understanding if they knew?

That man who just cut you up on the road. He’s terrified of driving because he was in a car crash as a child; and his mother died from the injury. But he needs to drive to the hospital to see his dying wife.

When we can gift someone with an explanation, we can connect with them as human beings, having human experiences… and we can be understand, kind and accepting.

~ *** ~

As I write this, I’m angry because I can’t tell that man about my experiences. I can’t tell him that I was in hospital unable to eat, drink, or breathe properly. That each time I fell asleep, I began drowning in my own saliva. So no, Mr Dentist. I CAN’T let you cut off my airway. That throat has been traumatised and my reflex will not allow for this.

~ *** ~

We live in a society where being abused means being ASHAMED. Where being a kind person with a heart is “being weak” or “too sensitive”. Where if X can do it, anyone else her age and education level can.

I’m lucky I apply for jobs in mental health: where personal experience is a positive; where I can answer “when did you deal with an emotionally stressful situation well?” I can say “when a patient completed suicide hours after I told her I couldn’t help.”

I live in a society where I am told to “get over” my trauma. But that would mean I couldn’t be human, couldn’t care for others in the way I do now, and I couldn’t let life enrich me. I wouldn’t be LIVING if I didn’t experience and have those experiences change me,

I live in a society where I am told to “get over” my trauma.

And I’m saying No.

What are your experiences?

Do you have trauma you can’t tell people about?

Do you believe it’s right that we shouldn’t tell our stories?

Next time you don’t understand someone’s actions – could you gift them with a reason?

– Rose –

Alzheimer’s Disease ~ No Scientist with all the Answers

Aug21

Last July, I wrote the beginnings of a post on Alzheimer’s Disease. I found out during my graduation that my granddad was going for tests to see if he had it.

That was over a year ago, and that post is still sat in my drafts document; with all the details of senile plaques being toxic to neurons and theories of neurofibillary tangles helping balance out oxygen levels…

I’ve gone back to it so many times, but I didn’t take any courses in dementia or aging – I know the brain regions and I know how chemicals affect neuronal structure.

But “severe loss of life”, I do not know about.

And I’ve found I really don’t want to know.

Emotional Reactions

I think of myself as a scholar and a seeker, I’m intrigued by life, keen to understand the world and to create my own senses through writing.

I’m not sure I can even entertain the idea of being slave to a condition “which strips away your living self a bit at a time.” (Terry Pratchett)

But there I was yesterday, sat next to the man who used to laugh, to go on and on about being hospitable to others and providing a service for your neighbours. The man who hiked up mountains until a few years ago and who told me I should do whatever it was that made me happy – countering every other male in my family who went on and on about getting A-grades.

He is the only decent male role model I’ve ever had, and he is fading.

The man sat next to me yesterday was depressing, picking up on negatives which weren’t there, focusing on how “I seem to have another qualification but no one wants to employ me” and talking about how there’s no point being here when everything in his body is falling apart. (I only finished at University last Thursday, I’m not worried about not having a job yet).

And then he spoke, looking at me, trying desperately to remember my name.

Last night, I dreamt of writing to Terry Pratchett; despite his particular variant meaning he can no longer read.

Knowledge

My granddad does still remember my name, after prompting a few times. This is the early stage, I know. They’ll have assessed the density of the plaques and tangles and judged him “early”. Each time I visit, I see decline, and I’m reminded “it’s only going to get worse”.

They’ve taken him off the Aricept medication, as it caused side-effects to his heart. He’s still able to speak, still able to move his hands and legs, still able to pour drinks and to play croquet with us.

He’s survived skin cancer, a knee operation, eye treatment and is now losing his mind; a little bit each day.

All I find myself wanting to do is to remember every moment with him and to distil those memories of him, and the lessons he wants. I want to make a guidebook for my life with all of his knowledge and beliefs within it… so that he can still give me guidance once he’s no longer there.

~ ~ ~

I was reading Ellie’s post over at The Headologist a few weeks ago, thinking of my granddad as I read each word about the Aricept, the frustration and that sense of loss she felt as Terry would never read a word she had written.

And I realised my grandfather will probably never see my life – he may see it, but he won’t recognise it. I’ll be the first one he forgets; being the youngest (the most recent new memory), the less-often-visiting. He’ll forget my name, and not understand why I tell him about any job I get, any achievements I have… when I tell him I’m happy; that I did what he asked and did something I enjoyed… he’ll wonder why I’m telling him.

If he lives long enough to meet my kids, he will never know them, and they will never know him.

The Scientist

I feel I need to know about this. His wife and my mum have both asked what’s happening in his brain, and I could only open a textbook and try to read it out loud, explaining the jargon as best I could.

I don’t want to know, to foresee his future. Yet I do.

Next his speech will go, he’ll lose the ability to perform daily tasks, his long-term memory will start to fade and I will most likely be removed then.

And then, if he survives any falls and lives beyond that, he’ll reach “advanced” and will be able to perhaps use phrases of speech, fall into apathy/exhaustion and no longer be able to feed himself or move.

~ ~ ~

I cannot be a scientist when the only person who has made an effort to be compassionate and just, is leaving me. I cannot explain the biological function of plaques when the main motivation for all my studying and all my work will never see me complete it.

And I will only have memories from when I was too young to understand, to guide me in how to be a decent human being.

Mostly though, I’m mourning that he won’t be playing chess again; the game he taught me was the answer to all of life’s problems.

– Rose –

Also, this is an important documentary about the problems Terry wanted to look at with Alzheimer’s as a mental deterioration on the topic of Assisted Suicide: http://vimeo.com/25239708