Forgive me if I've written about these topics before, but hey! I've got dementia ;-) I just felt the need to round up some of the things that have occured in my life over the last couple of years, and view them throught the cracked lens of where I am now. So here goes ... My name is Pete Middleton, and I have dementia.
I was diagnosed with Alzheimer’s disease around 2 years ago, but like many others, I spent more than two years wrongly diagnosed with anxiety and depression.
It took an MRI scan to discover the shrinkage in my brain, as I have always passed memory tests with high marks.
Now retired, I live on the edge of the small Town of Burton Latimer in England with my wife Pam, who is also my carer.
The Covid 19 pandemic arrived like a whirlwind in the middle of March and turned my life upside down and upsetting my comfortable routine, severely limiting my contact with the outside world as I went into isolation.
I usually do a lot of volunteer work in my local community and speaking engagements to explain how I live with dementia. It keeps my mind sharp and active. But now, I am having to find new and novel ways to achieve the same mental stimulation, and I have taken to writing a blog and have been keeping a video diary that has recently formed part of a television documentary about “lockdown”.
But not all of us who live with dementia are able to do these things.
I know that the carers of people deeper into dementia than myself are finding it very difficult to provide mental stimulation for those in their care in the absence of the regular community groups and events that they usually attend. And I know that others are struggling with mental health issues and domestic violence exacerbated by this lockdown.
My wife Pam is also a carer for adults with special needs, so she is often out of the house for 48 hours at a time, leaving me totally isolated. During these times, unless I am lucky enough to have a web conversation or telephone call from one of the people in the Alzheimer’s Society, I speak to no-one.
I have noticed that my speech has deteriorated somewhat and that, when speaking with my wife, I have begun, on occasion to stammer and stumble over my words, unable to finish a sentence, sometimes leaving long silences while I search for a word to express a thought. Often, I forget to eat. I forget to take my medication (I’m an insulin dependent diabetic). I forget what I went into a room for, what day it is, and what I’ve just been doing.
It is difficult to access outside help and services. Many phonelines are understaffed or closed, and face to face meetings are a thing of the past. It can be a daunting prospect for someone like me to have to access these services.
Last week, I had some difficulty managing my blood sugar levels. The only way that I could access my diabetic nurse was by telephone, and it was very hard for me to explain my problem without the extra signals offered by face to face contact. I left the conversation angry with myself and frustrated that I had wasted both of our time.
I am trapped in limbo, waiting until I am told that I can re-join society.
I feel that isolation is accelerating my decline.
I feel useless and purposeless.
I feel helpless.
And while I have been locked away, the world has been rapidly changing.
There are new rules. New etiquettes and new social structures that I am going to have to adapt to. The “new normal” as it is being called.
People with dementia like routine. We like to be in our “comfort zones”. The thought of visiting a shop for the first time after lockdown frightened me, and I am still struggling to cope, even though I force myself to visit the local shop now and then to buy one or two items.
Where will I queue?
How will I queue?
What are the new ways of doing the things I’ve gotten used to for so many years?
What if I have trouble speaking? Will the people behind me become impatient?
Am I doing it all right?
People like me are trapped in a bubble while the world changes and adapts around us.
And worse. For us, the clock is ticking, and every day we spend in isolation is a day further down the road into dementia.
I had hoped to spend this summer spending some quality time with my wife storing up memories while I am still able, but the pandemic has stolen my chance of this happiness as we have had to cancel the holiday we had long planned.
I am however an optimist. I am looking forward to next spring and hoping that I am still aware enough to do all the things I had planned for THIS year.
I see it as my duty to describe the journey I am on while I am still articulate enough to do it.
I wanted you to understand a little of what it is like to live in the shoes of someone who is living with dementia.
And I hope I have been able to give you a small insight into the world that I now inhabit since contracting Alzheimer’s disease, and how the pandemic has changed it.