8 September 2015, Melbourne, Australia
This was a keynote at a conference organised by Alzheimers Australia and COTA Victoria. Edie is now 65 and living with dementia. She was diagnosed in her late 50s. She and Anne have been a couple for many years, and have delivered similar talks around the country. In 2015, they received a volunteers award from the Victorian Department of Health.
LOVE LIFTS US UP ….
Hi I'm Edie, and this is my partner Anne. Today I'm going to talk about our experience in dealing with a diagnosis of dementia and the impact this dreadful disease has had on our relationship.
I was diagnosed with Younger Onset Dementia, Alzheimer's Disease five years ago this month. I was aged 59 at the time.
The title of our presentation is taken from the Joe Cocker's song “Up Where We Belong”. A few years ago our YOD Art group was asked to choose a song or poem which had personal meaning to create a collage. This was my choice.
Anne noticed worrying signs and changes in me from 2005. I rely on her memory to be able to give you an accurate picture of the last 10 years. She says I started withdrawing to the study after dinner and spent hours at the computer playing computer games. Initially she thought I was doing paperwork for my business as a Driving Instructor but she eventually worked out I was playing Hearts on the computer.
I stopped sitting and relaxing with Anne in the evenings as we'd always done and would only watch sports programs on TV. Previously we'd watch several programs together on Aunty or SBS. I was becoming more and more negative. I didn't particularly want to socialise, especially when there were more than a few people. I told Anne some time later that I couldn't follow group conversations and didn't want to repeat myself.
Anne says I used to get defensive or angry if she tried to talk to me about changes she observed. If she came into the study I used to shut down the computer so she wouldn't see what I was doing. I didn't get away with much, Anne seemed to be able to catch me out all the time!
We had developed strong and healthy communication over our years together. We were both committed to resolving misunderstandings and differences and working through issues which arise in relationships. We had no secrets. We had no need for them. But now I was no longer able to put into words what was going on for me; I didn't want to think about what was going on in my head let alone my life. I didn't tell Anne that I was forgetting where to pick up clients from for their driving lesson and that I was going to the wrong house.
My memory had been one of my strongest assets. My attention to detail and ability to remember dates, addresses etc was well known. We were stopped by a police officer for a licence check one night and I didn't have my driver's licence with me. But when I told the officer my driving licence number, he shook his head and waved us on.
I was progressively cutting off from myself, my thoughts, my feelings and Anne. In addition to increasingly disengaging, I was becoming more forgetful, easily frustrated, lethargic, defensive and negative, particularly at night. I'd get angry with Anne sometimes and stomp out of our bed into another room. I'd accuse her of saying and doing things I'd thought she'd said or done. Of course I'd forget about moving beds and getting angry and would make excuses about not wanting to spoil her nights sleep. I was in a bad place.
Fortunately I don't have any memory of this time, because if I did I'm certain it would have been the most depressing, frightening and isolated time of my life. Apparently we'd arrange to meet for lunch and I wouldn't turn up and I'd forget about arrangements which had been made to catch up with friends. Remembering events and dates and organising myself was becoming more and more difficult. I was increasingly leaving more to Anne to arrange holidays, shop, cook, and clean.
We went on safari to the Kruger National Park in 2007, and to Vienna, Prague, Croatia and Norway in 2008. Unlike all previous travel, I didn't get involved in any of the organising, despite Anne's attempts to engage me in the process. I was very keen to travel of course, as we had travelled far and wide over the years. Twice at airports during this period when Anne went to the toilet, I went off looking for her and she found me wandering in a distressed state. I stopped contacting friends and initiating outings. I was leaving for work earlier and earlier.
Neither of us handled this period of our lives before diagnosis very well. I was blocking out everything and everyone, refusing to admit there was a problem and unwilling to share my fears, vulnerability and grief.
Anne was getting increasingly concerned, frustrated and impatient with me.
We were in unchartered waters withdrawing from each other as a way of trying to manage the situation. It was the worst time of our lives. When I was having a knee replacement in 2008, our bank rang and told Anne we were two months behind in credit card payments and that a third payment was almost due. I had always been an exemplary bookkeeper and financial manager and Anne had left all financial matters in my capable hands. But when she found a mountain of unattended bills and a very late BAS statement she reluctantly inherited my role. I used to sit at the desk with those stupid, unpaid bills every weeknight and yet still managed to ignore them. When I think about that now, that was quite an achievement!
I had many serious falls from 2006-2009. The last one was when we away with family and I tripped, fell and shattered my patella. Fortunately the knee replacement I'd had four months earlier wasn't damaged. After it was wired we went on a planned holiday to North Queensland with friends. Although all this unfathomable stuff was going on and I was in a full leg brace and totally dependent for six weeks, we never at any point actually gave up on life or stopped wanting to be together. Although we were both depressed at the time, we are so grateful that in our darkest times, and there were many, our love for each other, though truly tested, remained steadfast and enabled each of us to go on.
Anne persisted in trying to get me to see our GP for two years. I finally agreed early in 2009. When I came home Anne asked me what the doctor said and I told her she said there was nothing wrong. I don't even know whether I actually went to see the GP, or if I did whether I'd forgotten to tell her why I was there. Anne insisted we'd go back together. My memory problems were finally getting addressed and I could start to believe that maybe we could get through this terrible time. I underwent a comprehensive neuropsychological assessment over several weeks followed by appointments with other specialists. We now attended all appointments together and I was no longer feeling frightened or isolated. Our open and honest communication returned.
Anne had already decided in 2009 that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ½ years in an environment which worked really well for everyone. I now knew that I still had something to offer and I was wanting to take some pressure off Anne. I was no longer disengaged. After the neuropsychological review in mid 2010 the neuropsychologist wanted to come to our home to give us the feedback. He said that significant deterioration had occurred in the 12 months, particularly in new learning and memory and indicated the likelihood of Alzheimer's.
We sat silently in the lounge room for a long time after he left, feeling appreciative for the thoughtful, caring way we were informed but numbed by the news as well. Eventually we stood up and cried in each other's arms for a long time. The silent presence in the room was the previous experience we had with Alzheimer's; Anne's mother had died in 2005 after living with Alzheimer's for more than 20 years. We had moved from Melbourne 23 years earlier to assist her father in her care and Anne became her primary carer after her father died in 2002.
We knew a great deal about dementia. The thought of Anne having to face this dreaded disease again had paralysed me and it was the main reason I shut down for so long and had so much difficulty in facing the situation and talking to Anne about it. My motto must have been “If a thought is unbearable, it's best not to think it and it'll go away”. It didn't work, because my denial and avoidance made our lives much more difficult than they needed to be.
Anne says having a partner with dementia is a very different experience to having a parent with dementia. I must have felt guilty that I was going to be a burden for Anne, I didn't understand at the time that there was nothing for me to feel guilty about, and Anne had to overcome her reluctance to take command of the situation and not leave it to me to make good decisions.
A specialist neuropsychiatrist in Younger Onset Dementia confirmed Alzheimer's in September, 2010 after a PET scan and a review of the earlier MRI. We now knew what we were dealing with; there was relief in that and a growing belief that we could launch ourselves to a better place, in time. It had been more than five years since Anne had first expressed her concerns to me.
The first two years were a maelstrom. I had to retire from the work I loved; we had to sell my car and try to sell the business. There was a succession of new people entering our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. The required form filling was unbelievable but thankfully Younger Onset Key Workers assist newly diagnosed families through the process now.
We became actively involved in the Younger Onset Dementia world by participating in the three day Alzheimer's Australia “Living with Memory Loss” program. It was a great experience for us and helped establish a small, local community of care and support with people in a similar position. I joined Alzheimer's Australia Victoria Reference Group and Alzheimer's Australia National Advisory Committee. I'd been on committees throughout my 6 work life. A whole new world was opening up for me again and I was now beginning to feel more positive.
We also commenced major renovations to our home which were completed within two years of my diagnosis. It was stressful and inconvenient, especially when we didn't have a kitchen, and then a bathroom, but it was worth it as it has made our lives simpler, easier and more comfortable. We also have a beautiful garden and a gorgeous 14 year old dog called Shinji. We have lived where we live for 16 years and we both love our home and its location, and we plan on staying there for as long as possible.
We'd be the first to acknowledge there are no short-cuts to truly accepting such significant change to our life circumstances, and that we didn't handle things as well in the first couple of years as we do now. Anne told me, I once said to her “I may as well be dead”. I can't imagine ever thinking or saying that now. Good communication between us is a key to where we are today as well as the support of significant others.
We gradually learned to accept then embrace our new reality and the changes that happen along the way. We both had to learn to manage our feelings in these new circumstances. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We both had to face the awful grief, terrible sense of loss and fear of the unknown that comes with truly facing a new reality. We had to accept that the future we'd planned, of travel and retirement and long, lazy lunches with friends was not to be. But in facing the truth together it became possible to accept it and this brought with it a serenity and even deeper love and respect. We gradually became more relaxed, contented and good humoured.
For five years now, since diagnosis, we have seen each other grow to a place of acceptance, contentment and peace. It's not devoid of frustration and stress for Anne, I know, but negative feelings soon subside because that's not what we want our lives to be. I used to be so hard on my myself, but I'm not now. We choose to be on the side of life and we are grateful for what we have, and that helps us deal with our reality.
There is no doubt that dementia is disabling, challenging and life changing, but there is much more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I've lost. I have this moment in time and that's enough. And for us, dementia has actually strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn't have had.
Love is at the centre of my life now. Peace and calm descended on our household towards the end of 2012 and it continues. Anne retired in June last year and that has made life even better for both of us. We enjoy spending time together, but we also have our structure and routines that gives us time apart.
I so look forward to the end of the day when we're together again.
We have been fortunate to travel to China, Botswana and Vietnam since my diagnosis. We may not travel overseas again, but that really doesn't matter. Dementia forces the end of some things, not all things, but it also opens us up to new things as well. We would like to acknowledge the importance of others in our dementia journey, people we've met through Alzheimer's Australia, Younger Onset Dementia community, couples and individuals who are in the same position as ourselves, and staff who support people with dementia; special family members and friends who stay connected as well as professionals who assist us along the way. We appreciate you and thank you for your help and encouragement.
My relationship with Anne is a very loving, positive and enjoyable partnership. We have known each other for most of our adult lives and been in a relationship for just over 31 years. We've had the most amazing life together. We all know there is so much more to sexuality than sex. We're more playful and appreciative of each other. We embrace, cuddle and hold hands more, although we've always been very tactile. There is more tenderness, thoughtfulness, care and respect. We know we're both wanting to be the best we can for each other. I am always telling Anne, “I love you with all my heart.” I write it on her back in bed at night and on any part I can find during the day. I have never loved her more, nor have I ever felt as loved by her. I don't remember a lot, but I know that the most important thing to me is our deep love for each other. What else could I possibly need?
I can honestly say I have never felt more contented in my life. I don't feel pressure, anger, frustration, fear or regret at all. I don't have bad memories. We are here for each other. We feel blessed. I often find myself looking at Anne and I'm overwhelmed and bursting with feelings of love and gratitude. And I just have to tell her, again and again, how much I love her.
I believe our increased intimacy has enabled both of us to experience deep personal and spiritual growth and healing. Together we are more than two. I describe us as “Team formidable”. Recently Anne and I were having a conversation about the many good things which have happened to us and the many amazing people we have met since dementia has entered our lives. Actually Anne was doing all the talking, about dementia being transformational and giving us opportunities to grow and so on and so forth. And I just said to her, “ Our hearts are bigger ”. After a couple of minutes, Anne closed her mouth, shook her head, and said “Edie, you've just said in four words what I was trying to say in 100. That is the most profound and beautiful thing you have ever said”.
Our wish for everyone here today is, whatever your connection to dementia, We hope it makes your heart bigger too. Thank you.