Friday, August 26, 2011

My dementia (snapshot)

I don’t talk about the dementia and I don’t write about it. That’s my cowardice.

My diaphragm is failing, which means my lungs are failing. My heart is failing too. So I point people to the physical, except that this is physical too. One of the common side effects of vascular dementia and Lewys Body is being awake at night, the day and night reverse and this is just what is.

I ran away, except I didn’t run, I wheeled away, naked with a blanket to cover me. I don’t know how long I was gone, a couple hours I think, I am not sure, but Linda and the Police found me at the same time. Then the Ambulance because my feet were purple to black exposed on a cold night, an early summer night. So now the Police know that calls from this address are usually caregiving calls.

Those aren't the picture we show, me with a lost look on my face, surrounded by medics working on my feet and four police officers.
Workers, medical staff, they all stay the same thing, “I wish I knew you when…”
There is no other when, just now. I am not a good teacher, I am great one. But I won’t have years of students to say that. Just all that knowledge up in the head and me sitting holding my head trying to remember the word, the phrase, the idea I was just talking about.

Today someone told me that they were glad to know me now, to know the me that is here, whatever condition. I smiled because I hadn’t heard that before.

People don’t want to know the you of now, but mourn in front of you the loss of the you that they remember and you don’t.
I don’t know what year it is, and often I don’t know where I am, or when I am. I don’t recognize anyone. I looked around recently and couldn’t understand why the hospital room was so cluttered, and what happened to the heart and oxygen monitors.

At first it is pretty easy to build up the devices that allowed me to appear to know and remember things. But then it gets to the point where the notes make no sense and I ask myself ‘What would Elizabeth Do?’ to try and figure out the day before, and I don’t know. I don’t know.

But I have ‘now’ and while often while watching with Linda I don’t have the slightest idea who the characters are, or what the background story is, I can pick up enough to figure it out. And Amazon tells me what I have ordered before, so I avoid buying the same thing over and over only because I am too weak to leave the apartment and Amazon gives me a warning.

In some ways it is easier because I am young and a quirky female so people expect me to say odd things. And if I don’t recognize people or places then I just make observations and they think I am being witty and sardonic, pretending to look at the apartment/street/city/woods anew.
Why do I run? Found fallen in side streets, and shivering on pavement? Why do I wheel off? Because my emotions build up, faster than I can ever express, even if I had the words, only I no longer do. I need to be someplace where everything was okay. So I wheeled to the time of happiness, when Linda, Cheryl and Maggie dressed up in goth and corset and we all went to the cemetery. Here, even in the darkness of the cemetery I know about love and peace, not the terror of finances, and other complications. Here, in that feeling, the medical appointments, the lack of medications, the late rent checks are far away and the bright day with us playing in the sun is what I know. Because back in that apartment, I can see a Linda who is preparing to continue on without me.

I want to plead for her not to leave me, but I am the one who is leaving, decades early. In many ways, I have already left, as Linda sometimes is an Aunt, a friend, but always someone trusted who helps me find my way out of the confusion. She leads me to bed, and tucks me in and promises that she will always be there.

Vulnerability: that is what dementia is about. We are vulnerable, and na├»ve, and we don’t even know it.
Often I don’t understand the difference between the TV shows and the world. So for a show to end, to not have more, it is hard to understand, and upsetting, because it is like saying everyone is gone, everyone has died. But then, a while later, I watch it again, and remember nothing at all of the last time.

I don’t recognize the people who come, nor do I know how long they have been here. Linda said today that one worker has been here for more than two years. But I don’t know that. I don’t know her. When a worker comes who reminds me of something I think I might remember, I call her that. Sometimes it is named after a pre-Victorian poem, sometimes after a body type, but this is the only name I will know, perhaps, the next week. And the workers that matter play along because they know that I am not insulting them but trying as hard as I can, still not knowing what day it is, or why they are there, to remember them.

Perhaps you will, like the question in Equus, never know the emotions I experience, and how vivid they are. But you will know your ATM number and computer passwords, also what month it is and remember last year instead of when you were 9. And that will probably make you feel you are on the better half of the equation, because you can handle change.

Today the police were here. Fran and the owner Peter Kerr won’t allow a locked box so workers can have a key to enter the front door. They say it is for ‘security’. Because of the letter from Linda asking, after three years of trying to get care, for them to do what is right, I got no care this week, as no workers were buzzed in.

The Police were here to tell Linda that as I palliative in a critical stage, that they will come and simply break down the front door (though they could get through it ‘in four seconds’ – so ‘security’ isn’t being maintained by our building’s front door) to give the worker access. And the next day, they will come and break down the front door again. And again. And again.

Because I sit up in the room waiting for the worker to come and tell me what meal I am eating, or when and what day it is. And recently I haven’t been eating for over 24 hour for many days. They help me dress, they help me feel safe. And talking about options, the idea of a ‘care home’ came up but Linda asked if the officer would like to be in a care home and he said no. She said that I am someplace I know, and I am someplace where I feel safe and why should she move because the manager and owner are being bullies after taking our rent month after month, year after year?

Change is more than worry, more than terror, it is ripping away parts of my mind and my knowing. Where I have been, in some part, who I have been. I have now this room, and that is what I know: I have this manga, and that book because I can see them from this desk. I know where the lights are, I know where the treats are, I know that here, only HERE am I safe and loved. Here is where I see the things that we have shared together over the 18 years together.

No, that isn’t going to stop me from getting worried and crawling under the hospital bed. And it isn’t going to stop the frustration at trying to find a word, a phrase, any way at all to communicate when I am tired, and everything seems to go away until the dreams and the memories mix together. It is the ultimate loss of control and nothing can stop it, or slow it. It is a falling feeling that never ends.

I don’t have very long. I know that, and my doctors do as well. But however long that is, it would be nice to be around people I know, or if I don’t that day, people I feel comfortable with, or who, when I am scared of them, will understand. Because having a life stripped away, leaving you naked, not at school in a dream, but in front of the whole world, it is scary. And so I might need plushies, for when I am not too sure who Linda is, nor do I recognize the plushie, but it is something to hold onto in a world of sharp angles and confusion.

Serenade is arranged by a singer and composer, who also plays all the instruments and posts the songs on youtube. It captures one aspect of dementia and the feelings of confusion.

My fragile heart beats at times secure and times alone
My first treasure took me years to find
It's what I cling to when confusion clouds my mind

Dedicated to Linda who deflected my fear today, that I would have to go away, to someplace which isn’t here, someplace strange. And for that smile, when I was on the floor, and the worker had put a pillow under my head and you told me it would all be okay.

When you come to me and you smile
Suddenly I feel as if everything's okay
Lost in your smile all at once I'm swept away.
When trouble falls upon me like rain
When the world becomes what they call a lonely place
You carry me through
From dreary skies the sun breaks through

When you're feeling lost and don't know what to do
Just look and see me calling out to you
When listening/watching, please hang in until the first minute, and I promise that this will be a song that matters to you, particularly for those of a variety of illness’ and disabilities, or just the lonely.


e0394082-d02f-11e0-82b6-000bcdcb8a73 said...

As much as youve lost you have love and you are loved. Youre brave showing the face death is showing you to us. More than you will ever know this is a gift to the world. My hugs prayers and best wishes go with you on your journey, however long it takes and however it winds..

tilmon said...

Hello, Beth. This is Laura (yanub). I've been a bad friend, not communicating with you as often as I should. My thinking of you doesn't mean much if I don't also tell you, after all.

I hope you got the card from me that I picked up at the Ghibli Museum. I would never have gone there if it wasn't for advice. It was so enjoyable, so thank you!

Linda does have a lovely smile. And it seems she has a real talent for easing your mind. I'm glad you two have each other.

Somehow it is surprising to me that Victoria's police muster so much compassion. Perhaps they can box some of their left-over understanding and gift the medical establishment with it.

cheryl g said...

I look at the second to the last picture of you and Linda and there is so much love in your gazes as you look at each other.

Every weekend I see that love as well as the pain and fear and sorrow you both have and I want so badly to be able to make everything right. I am struck anew at how horribly unfair this is.

I am glad to know the you I first met, the you over the last several years, the you of now and any you who is to come. The essential self always stays the same. Your strength, determination, kindness, generousity all remain even if they are sometimes overshadowed by confusion and fear.

Bless you and bless Linda.

cheryl g said...

I have the nicknames you use when you can't remember my name and I cherish them. I know the nicknames mean I am someone important to you. Someone who means enough that you have placed labels on me for when the name isn't there.

wendryn said...

The pictures are beautiful. You and Linda are amazing together. I wish you hadn't needed to run away, but the world can be scary at the best of times.

I am very glad I have known you, even if mostly from the internet, for many years. I know you have changed, but you are still important, still a person, still very loved. I don't know enough about what is going on to be able to say this well, but it seems like no matter how much or little you remember that day, the core of you, the courage, the stubbornness, the fighter, the caring, loving person who wants to help, is always there, somehow. That is you.

I am glad you and Linda have each other, for however much longer you have left.


Tina Russell said...

If it helps any, Beth, I’ve known you for... 2 years... I think... so I don’t think I’ve known a “you” much different than the one right now. And, I think you’re wonderful.

I like reading you talk about disability in the mind. That seems to be the really scary one for me, somehow, because I’m always so proud of my brain, my ability to create, and that must be how it is for you, too. I feel like nobody can take away my words, my ability to make language fall in line and do as I please... but dementia can do that to you, make even your inner world seem foreign. My nightmares, in fact, tend to be ones where my inner world is somehow being invaded, my happy place, my retreat from everyone and everything else. That must be so scary to happen in real life... I don’t know what to say.

(hugs) You and Linda are so cool. I’m glad you have people and things to hold onto when your world is so messed up. Rest assured we’re right behind you, too.

Baba Yaga said...

Thank you. It's important.

I want to respond to this properly, so I'm going to let it digest, and hope that something worth it bubbles up. There are things I recognise, oddly: years of on-and-off deep depression make memory strange and slippery, and the endless 'now' familiar.

I do *have* the context in which now exists, though, so it's rather different.

Yes, the ones who count will accept the names you give. Associations are funny things at the best of times: trying to describe someone one knows intimately, one ends up with a few odd details which fall far short of description. Probably a scrap of pre-Victotian poetry does the job better.

I'm sorry about the need to run; and more, that you can't run to happiness and stay there. As good as you are at finding happiness when you can, this disease of yours is a monster.

Very pleased, though, that the police *are* willing to do what's necessary to ensure you care (and make the landlordly intransigence costly to them, and not you): no-one should be denied care for petty reasons. It horrifies me to think of you without it.

I'm glad I know you now. I know I don't know all of you, that I see more of the 'less-ill' and more-adult Beth than the 'most-ill' and regressed Beth: the blog's a good medium for both revealing and concealing. Hard to reveal from being unble to blog.

I might have liked to know you 'then', too - since you're *you*, I expect I would have. The you who, even losing so much, has grown since I've been talking to you over the internet and postcards, the you who works so hard to stay afloat in conversation, and who is in some ways stripped to essence - I like her a lot, and I cannot believe that she is less than the sharp academic I didn't know. Essence has a lot to be said for it: it *is* vulnerable, and that I regret, but it's also without fripperies and posturing, and that's rare and lovely.

It'd just be nicer to have the option of fripperies and covering-up, wouldn't it? There's safety in those things.

I'm sorry I still can't see your video. My dictionary friend has promised to try to repair things, so perhaps soon?

SharonMV said...

Dear Beth, I love you - sometimes I feel it so much that seems a physical force that could reach all the way north and touch your heart. I was just thinking today about the days that you don't know what year it is or revert to an earlier age, the times when you might not recognize even your closest friend. How lonely & vulnerable & frightened you must feel. Thank you for sharing again the mental losses
and the emotions that overwhelm you.No wonder you want to run away.

Sometimes I tally up my losses - the life loses, career that never was, the friends who are gone to me, the sickness, the pain. The missing words that I no longer even try to find because I am just too exhausted. A mind once broken and still injured by Lupus. All that would be inestimable to those who do not have several serious chronic, life stealing illnesses. All this is but a small window into what you, my dear Beth, live. A vantage point which I hope offers me some understanding.

I love you as you are now. I have said this before and I will say it again. I am honored & grateful to have you as my friend. And by the way, you are still teaching and you are a very great teacher.


Olivia said...

I am glad to know you now Beth. And you are still a teacher, with every blog post.

Sucks that you had to run away, and I hope your poor feet are ok.

Holly said...

I clicked through to your blog from a comment you left on my latest blog post, and just wanted to let you know what a great post this was, and what an amazing person you must be, simply for writing it.

This post was beautiful and touching in its' honesty, and openness, and clarity, about a subject and feelings that most people simply push away and ignore. I think that fear of the world and feeling completely alone is something everyone feels (to varying levels) at some point in their lives. But that no one wants to talk about it, and that the only way to confront the fear and isolation is by talking about it, which takes more strength and bravery than most people think they have.
So thank you for shedding light on things that can only be confronted head on.

Anonymous said...

Heya, this is Laura. :) *hugs* Thank you so much for the postcards you've sent me of the pink-haired girls. They're lovely, all the stamps and stickers. Uwaa, I'll send you a couple of postcards this Monday! :) *big hugs* You and Linda are lovely people. Many blessings for the both of you. *hugs hugs!*

Anonymous said...

Hi Beth, This is Cath in Edinburgh. I thought I'd try replying here for once.

Thank you for sharing your experience of vascular dementia. This is something that my Nana is suffering from, but for her it is at the end of a life which for those who love her is a little easier to accept. I'm so glad you explained how it makes you feel as this is something no one can understand looking in from the outside and it makes me try to understand even more what she and you are going through. It must be awful to have that confusion and fear of not being safe. I hope your landlord finally puts in that life saving key box and am glad that the police are making a stand. Yes I too love the pictures where you can see the love that you and Linda have for each other shining through. The song dedication brought tears to my eyes.

Thanks for my latest postcard of the painting of the Isle of Skye sunset, the advert for the West Highland Railway. I do love traveling by train! On the back is a sticker of a strange furry creature I have never seen before. I love all of your postcards and have them all in a Filofax with clear envelopes so I can regularly thumb through them and think of you.

I can remember the first time I came across your 'Postcard Project' two and a half years ago and could not believe that there was someone out there who didn't know me that would send me a special card. That was at a time when life was particularly hard and I wanted to thank you again for making a difference to my life. You are a true friend x

Elizabeth McClung said...

I feel exposed writing about this, because it is something that culturally shames me. I am ashamed. I am ashamed that police know me as a person with dementia. I want to be a person who acts deliberately and takes responsibility for my actions, and in this, while I may be the essense of me, there is also the rawness of emotion combined with confusion or fear which makes what I do not understandable to others, but also what others do not understandable to me.

e09: I watch shows and the tragedy shown is that there is a person who has someone who they love with dementia. I wanted to give a voice for those with vascular dementia, for me - that it is my struggle too. Thank you

Yanub/Laura: Linda has many faces but I like her calm smile and her laughing smile the best. I called the police and got a person who seemed as baffled as I on the actions and as a person wanted to help, limited by law. I am glad that in the end, there are people who care and are not ground down by the jobs they do. I am thankful for Linda's perseverance in loving me, and her patience. Glad you liked Ghibli, beautiful design, loved the theatre.

Cheryl: I had a doctor who after the first year and a half of writing me, left saying it was too much, as the disease was too horrible and she could not watch what would happen to me. Thank you for staying to watch, and be there. Sorry I thought you had killed Linda this morning (regarding conclusions I make which cannot be understood).

Elizabeth McClung said...

Wendryn: I do not run from the world, but from the emotions which run like a roaring river unchecked through my frontal lobe, unable to be articulated or even seperated enough to understand. The need to go home is strong, and what is home becomes different at different times. Thanks.

Tina: Thanks. I used to have a working vocab of 200,000 words, and now about 20,000 and some days about 200. But as Swift was able to learn to bring ideas like Gullivers Travel and 'A Modest Proposal' with few words and simple sentences, I will continue to communicate as well. Thank you for liking the me of now, I hope I can continue to share.

Baba Yaga: One person is 'Laundry' based on the rhyme (sic) about the type of person who puts out Laundry on what day (much like the Thursday child has far to go, etc rhyme), due to coming on certain days - so 'Dre' it becomes. While others are just something even I don't know exactly why, but that is who they are.

This disease is a monster, taking both the body and mind together; taking everything and the control of it, as I try to remain more than a victim, and more than symptoms. I am inside the beast or as the little prince would notice, I have been swallowed by a snake (perhaps looking like a very odd hat).

You are always good at seeing what is said and unsaid. Yes, the blog is good at concealing but I wanted this blog to be open; once is spoke of my life and illness. And this I had hidden, protecting myself and the stigma of being 'one of THOSE people', much as I still protect my blood, withhold their names and details, even though they leave me and Linda to suffer and struggle.

Yes, after all the irritation I have had in people who seem to avoid SAYING anything when talking, I do miss the choice of concealing behind such chaff of verbal choices.

I cried when reading your reply because you understand, and being understood now on a significant level is hard.

SharonMV: I am sorry for your losses. I keep trying to make bricks, even when given no straw. New memories, fresh experiences, new learning, new growth. I hope that I succeed at times. Thank you.

Olivia: I think the feet are pretty much recovered, but I should not do that in winter - have to find some good socks.

Holly: Thank you, I agree that these things are left so often unspoken, or in pop culture, not given voice, and that they need a voice, or voices. Thank you.

Laura: Thanks.

Cath: You are my friend. And I hope this helps. It is odd but the early years really are clear, maybe it is part of the brain being accessed from the disease, I don't know. In the UK, I used to get those books 'X city in photos' showing the city 60 years ago in photos (for most UK cities) as a talking point for those with dementia, like my grandfather and his ships.

I hope if there is trouble, I can still be there. And for the good times too, rejoice with you.

glynisj said...

This is my first time at your blog, Elizabeth. I'm disabled too but mine isn't half as challenging as yours is. You are a brave woman, that's for sure.

Kate J said...

I'm just home from a couple of days away, helping my son move into his new place in Glasgow... and this latest post of yours was surely one of the saddest things I've read.

I've heard people say it's "OK" for the person who has dementia as you don't realise what's happening, sort of regress into childhood... NO, it's not like that at all and your post spells that out in the clearest possible way. Dementia comes and goes, like a fog coming down, leaving you lost, fumbling in the dark, clearing briefly for moments of clarity then coming down again. I imagine when you 'ran away' you were looking for Linda, even if you weren't aware of that at the time. And regressing into childhood isn't so good if it's the scary childhood of abuse and neglect, of crazy adults doing stuff to you, or not there when you need them - children are afraid of the dark with good reason.

You are one of the bravest people I've ever met, and to know you has been an honour and an education in itself - but to have you as a friend has brought an extra layer of joy into my life.
I wish you love, peace and happiness, Beth, trying to send you 'positive vibes' over the great physical distance that separates us.
Love & peace

JaneB said...

Thank you for another open, clear, and hugely educational post from your journey. You teach through your blog, and maybe it isn't the lesson or the medium you wanted, but it's still teaching - and teaching about hugely important things.

I can relate to the idea of running from emotional torrents. I hide, and mask, and try to bury them - but the urge to run is sometimes very strong, and I come close to inappropriate escapes sometimes. And I'm not an impulsive person... I know it must be very difficult, and hard for everyone, but I can't help having a mental image of you wheeling triumphantly down some street, mobile when all 'logic' says you should be being 'good' and staying in bed, out on the streets when so much of society would like you to stay tidily behind doors... and it's very you.

I wish for you love and security and knowing where the lights are and having a plushy to hold, for regular drinks and meals and gentle hands, the little things that matter so much. And that I could be there to help. But at least I know you this way, and can tell you I love you and think of you.

GirlWithTheCane said...

I am glad to know you now, even if it's just through your blog. :)

Take care of your lovely self.

Anonymous said...

I'm a stranger but I wanted to thank you for this post, it really moved me.
Good luck and stregnth for the future.

Kita said...

Hi Beth. Firstly, thank you for the post card you sent me. 'Misty' the grey pony looks as though she would have Jennifer off her back in a second! It is very lovely, and is precious to me. Thank you again.
This post made me cry, today. I didn't realize how bad the dementia was for you. It must be a very confusing lonely world for you - one that I would not know how to live. But you - you live it with such clarity, such EFM. You shine a light so brightly on your illness that I, a bystander, cannot help but gaze at the devastation that it leaves in it's wake. And I shudder, because, quite simply, there by the grace of God go I.

I love you, Beth. And Linda. And I am at a loss for words. In fact, I'll just shut up now.

Be blessed. <3 :-)

amy said...

I'm visiting thanks to a comment you left on my blog--it took me a few days to get back to you (a little hurricane swept through)-- and I'm pretty sure that, as a new reader, I'm going to need to digest what you're sharing before trying to comment. My very first thought is that you are doing a good thing, talking about these things, because only you can tell what it's like.

And thank you, yes, my husband does enjoy the shirt, more so because his boys made it with their mama's help.

Noisyworld said...

Ditto what GirlWithTheCane said, it's an honour to know you now :)

Dementia sounds horrendous, I hope you know how many people really care for you and who do not agree with the ridiculous stigma it has.

Raccoon said...


These are some beautiful pictures. Not necessarily composition, or subject matter. But the expressions of love, of caring, that stands out.

I am glad that you are where you feel safe, that you are with someone who helps you feel safe, Linda.

Stay out of the facility as long as you can.

Neil said...

Oh, Beth, it must have been so hard to write that entry. But you know what? Most of us already know that the witty, funny, happy posts aren't showing all of your life. You have the ability to gloss over that and help us forget that you're closer to terminal than we'd all like. You tell us about Fran not letting the workers in, and we scream with rage on your behalf. But then you show us your trip to a county fair, and we are happy to forget that you're not quite as mobile and easy to travel with as you might have been.

Beth, I still love you, and I'm not going anywhere; you're stuck with me until you have to leave. In the meantime, please forgive me if your efforts to gloss over the bad times are successful in making me think you might be in remission, or something like it.

In the meantime, thank you for the photos. Your wife is a lovely lady, and she looks good with flowers on her cheek. On your good days, you're still a good photographer, and you recently showed us a photo of Linda's WONDERFUL and beautiful smile.

And YOUR smile, dear lovely Beth, shows your evil, slightly manic side in that great closeup of you.

Yeah, life isn't all beer and skittles at the moment; we know that. And we love you anyway.

Now, go find that wife of yours, put your two lovely smiles together, and kiss each other for me.

Love and zen hugs,

Elizabeth McClung said...

I do appreciate each comment. Thank you Neil for the particularly insightful one. It is just a difficult issue and right now I am fighting to stay around, which makes me lose whole days.

Lene Andersen said...

dementia is a bitch. But there is one thing for which I am oddly grateful. That you're sharing your experience of it. My father had dementia and because of you, I feel like I better understand what he went through. By sharing your life with me, you have given me not just a valued friend (you), but also metaphorical visits from my father.

This post was lovely, both as a fearless window into what life is like and as a love letter to Linda. I know you have a lot of fear as you live through it, but sharing it so openly is very brave.

I love reading your blog because each post on a couple of different levels. There are the words and then there are the images. The images tell the story so well - I imagine that someone who couldn't read would be able to understand what the post was about just by looking at the images.

Thank you also for sharing these photos of your past. You and I became friends after your illness hit, after you started using a wheelchair and you know? It has never occurred to me to wish that I had known you before. Every time I hear you say that someone stated they wish they had known you before, I just want to smack them. It is the height of insensitivity.

catsmum said...

complely lacking the ability to express my feelings at this moment but sending you my love anyway

Susan [ and David and Renata ]
from Australia

Kathz said...

Hallo, Beth. This is kathz and I haven't been online or blogging enough lately. I just wanted to send you lots of love and hugs and best wishes.