Jun 29, 2018

Dementia: “Get to know the person, the disease is secondary”

Tracey Maxfield writes for HelloCare about her experience working as a nurse caring for people living with dementia. She also writes about her depression, and what led her to eventually write her book, ‘Escaping the Rabbit Hole’.

Ever since I was a little girl, I wanted to be a nurse. When I was two yrs. old, I used to bandage my teddy, at eight yrs. old, I used to write down medical words and different diseases in a notebook. After I graduated school, I realized I didn’t want to go to university as planned; I wanted to be a nurse. My family weren’t too happy with my decision as they thought I could do better and wanted me to become a radiologist or physiotherapist instead. But, I really wanted to help care for people, and so to prove everyone wrong, I secretly applied to a few nursing schools and spent one year working as a volunteer with babies and children with special needs, adolescents in care, children who were deaf and/or blind and people with dementia. At that time (1982-83), it was referred to as senile dementia, there was no mention of Alzheimer’s disease or other types of dementia. I was very fortunate to work at a day centre for people with dementia (the first of its kind in Wales) and my job was to go to people’s homes, pick them up and drive them to the day centre. Here I am, 19 yrs. old, a complete stranger, going to a person’s home and asking them to come with me. What were they thinking? But, there was no problem, I can’t explain it, I just connected with them, I treated each person with politeness and respect, I never challenged them, I shared their world whatever era it was, and I learnt so much about each person just by being present in the moment. It was an amazing learning experience, and so began my passion for dementia care.

Initially I nursed in the UK, and then in 1987, I moved to Canada and after three years, I resumed nursing. Since then I have worked primarily with people with dementia and the aged population in the hospital setting, in nursing homes, private care, doctors’ offices, clinics, and in the community. I believe that to give the best care possible and enhance a person’s quality of life, I must know as much as possible about dementia and dementia care and about the aging process, and I have taken many courses in gerontology, palliative care, counselling, and dementia care. People ask me why I do it, don’t I want a challenge and I respond that I see a challenge as an opportunity, a learning experience. In some respects, dementia feels almost timeless, dementia is unchanged, the difference is the people who are living with dementia, because each person has a different life experience and personal story and to truly give person centred care you must get to know the person first. The disease or disability is secondary, it is the person who is most important, get to know the person (caregiver/family), develop a respectful, trusting relationship and everything else will fall into place.

Since being off work, and when I started to feel a little better, I decided to go back to where my passion for dementia care first began, volunteering. This time, I was able to use my knowledge and experience in dementia care and I began to write articles about different aspects of dementia care to help people with dementia and their caregivers become more informed and feel supported as they started on the dementia journey. A local on-line news station agreed to post my articles and in 2017, I wrote a column, ‘Dementia Aware: what you need to know’ and published 27 articles. I also worked with a local MP and helped develop a Senior’s Booklet and gave two presentations on Creating Dementia Friendly Environments to City Hall. Presently, I sit on the Board of Directors for Seniors Outreach and I am involved in a provincial project, Raising the Profile which is dedicated to improving, enhancing and empowering seniors to live safe, healthy and productive lives in the community. I also contribute dementia care articles to an on-line magazine in the USA and I write articles on dementia research for a Health and Science Research Group. Once a month, I talk about dementia and the caregiver on a live US radio show, Caregivers with Hope hosted by Peter Rosenberger.

Writing ‘Escaping the Rabbit Hole’

Honestly, I wrote my book because I didn’t want anyone else to go through what I went through. I wanted people living with depression to know that they are not alone, and what they are going through, as horrible and scary as it is, is a ‘normal’ part of depression, and with time and help, it will get better. I also wanted to help caregivers, family and friends to understand what depression is and how a person responds: emotionally, physically and cognitively, so they can help support their loved ones through this very difficult journey. As the book evolved, I think my mission became one of not only supporting and educating people with depression, but also to empower them to fight the darkness and move forward onto a new life journey.

Despite having previous episodes of depression, this one was the absolute worst episode ever. I never experienced such overwhelming physical pain and exhaustion before and the cognitive issues were downright scary. I even did cognitive testing on myself because I thought I may be experiencing dementia. I researched depression on the Internet and read so many books, to try and understand what was happening to me, but no mention was made of the physical aspect of depression and it was only through talking with people who had depression that I realised the pain and fatigue and ‘encased in cement’ feeling is “normal.”

They say that each depressive episode one experiences is worse and lasts longer, but I had absolutely no idea just how bad and how long my episode would last. I kept visiting my psychologist and asking him, why aren’t I over this yet? or how much longer? I started journaling a few days after I ‘fell down the rabbit hole’ because the analytical side of my brain was trying to figure out what was happening, and in times of stress, I have always written down my innermost thoughts and feelings, almost like an internal purge.

From the onset, I was very open and honest and told people that I had a ‘nervous breakdown’ or acute depressive episode. Some people were kind and offered help and others, were either quite ignorant and rude in their response or just didn’t say anything and walked away. I felt like I was being judged and so many times I could see their eyes looking me up and down and not believing me because I was clean and nicely dressed. After a while, I became used to it and realised that most people truly have no idea what depression is or have a preconceived idea based on assumptions and/or misinformation.

My girlfriend kept telling me I should write a book to help educate people, but I was too unwell to think about it. Then in October 2016, I was riding my bike up Knox mountain in Kelowna (it was on my ‘fight depression’ to do list) and it’s a long gruelling ride to the top, so to distract from the pain and soreness, in my head, I started to write a book about my life with depression, and I called it ‘Escaping the Rabbit Hole’. As I was approaching the final part of the climb, I remember saying to myself, ah you can’t do it, no way can you write a book, and the spiritual side of me said, I need a sign or something, to tell me to go ahead, write the book, and then, as I reached the very top of the mountain, the sun appeared through the dark grey clouds, it was literally only for a few minutes, and just like that, I knew what I had to do! I know it sounds silly, strange even, I can’t explain it, but in that moment, I knew I was going to write a book.

My psychologist suggested I write a blog first and see how people responded. From the outset, I decided that I was going to be honest and real, no sugar coating, I was going to write about the good, the bad and the ugly experiences of living with depression. The response was quite overwhelming, nurses and doctors, even my psychologist contacted me and thanked me for sharing my story and helping them understand the side of depression that no one talks about or is covered in the medical books.

In July of 2017, I was introduced to my editor Julie and so began my escape from the rabbit hole. On February 26, 2018, ‘Escaping the Rabbit Hole: My Journey Through Depression’ was released on Amazon.

Leave a Reply

Your email address will not be published. Required fields are marked *


Engaged, Entertained and Involved: What do Aged Care Residents want?

No matter what age a person is, it is just as important to take care of the mind as it is to care for your physical health. Which is exactly why it is vital for people living in aged care to participate in social and leisure activities. Being engaged in activities is a strong indicator... Read More

“A slow and painful journey”: Why did it take over 20 years to approve the new Alzheimer’s drug?

There’s considerable support from patient groups and many doctors and scientists for the early approval of this drug, but there are some who don’t agree with this decision. Read More

Sweden’s community-based aged care philosophies take hold world-wide

  When Gustav Standell first visited Japan from his native Sweden in 1997, he found nursing homes hidden away in the countryside looking more like hospitals than homes. “There was no privacy and it was impossible to live anything resembling a normal daily life,” he told HelloCare. But Mr Standell knew that the situation had... Read More