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 naïve, 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 smileWhen 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.
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