Category Archives: Support groups

Eulogy and tributes to Richard Taylor PhD

Remembering Richard Taylor PhD

The following notes are of the Eulogy given representing the members of Dementia Alliance, and from the heart of Kate Swaffer, current chair, co-founder and editor of DAI.

Hello.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles (Christopher Reeves)

Richard will continue to be one of my heroes.

I had hoped to write an Obituary to honour Richard, but when I looked up on how to write one, I was directed to all sorts of suggestions, and as I don’t know many of the more personal details of Richards pre dementia life such as birthplace and personal family history which was suggested should be included, I realised the best I could do was to write from my heart.

And so, I decided I would begin with a Haiku version of an Elegy about Richard.

So often, less is more.

Richard

Kind, intelligent
Passionate, real and feisty
Deepest heart and soul

The members of Dementia Alliance International are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer, and we extend our sympathy and condolences to his wife Linda, son Jason and his whole family, and closer friends. We hope you know how much he was loved and will continue to positively influence the dementia community.

As current chair of DAI, it is an honour and privilege to lead DAI, and to represent our members today in remembering and honoring him. I was privileged to work with him, and call him a friend, and was lucky enough to be in attendance at those early breakfast meetings he encouraged ADI to host during their conferences in 2012, 2013, and 2014.

In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”

Richard always began his videos and presentations with: “Hello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer’s type.”

Hello is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, and not on our deficits, and everyone deserves a hello.

Richard was inspirational, and his influence was significant on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those people that care for us, paid and unpaid, around the world.

He was a founding member of DAI, and had the dream for this group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.

As current chair, and also a co-founder, I can only hope we will continue to honour Richard appropriately, as individuals, and through our work in this group.

It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community.

Like hundreds even thousands of people around the world I too had a personal friendship with Richard. I first met Richard online late in 2008, having found excerpts of some of his writing via Dr Google. We communicated regularly after that, via email and even before we met, both said we felt like kindred spirits, on the same journey. Richard led the way for me, as he was the first person with dementia who not only spoke up for living beyond the diagnosis of dementia, he also he showed me it was possible.

His writings were the first I had discovered by a person living with dementia, and in many ways I feel his words ‘saved my life’. By that, I mean he saved me from continuing down the very slippery slope of doom and gloom of dementia, the pathway the medical doctors, health care and service providers also send you upon diagnosis. I had not heard of anyone living so well with dementia, and although I was referred to other books and writing, we were we basically told it is not possible to live beyond the diagnosis of dementia, and these other books whilst very helpful, did not really teach me it was possible.

Richard Taylor taught me that.

Mr Google had become my friend, and back when I was first diagnosed, there was very little being written by people with dementia available online or anywhere, and certainly not about living well with it.

Richard Taylor inspired me not to continue on the downward spiral of Mr Dementia with grace, and with determination to fight for my life and the human rights of all of us facing a diagnosis of dementia, but also to learn to ‘live’ in spite of dementia, and indeed beyond the diagnosis. Richards’s writings were the catalyst for me to start to write about my own experience, and ultimately to find meaning on this wild ride, and his support and friendship kept me going when the ride seemed too rough.

Reading excerpts of his writings was like reading my own story. He helped me find the words to express my own experience. He encouraged me to write, as a way of healing, and of making sense of dementia. He also showed me the way in teaching others, and although I was already standing up and speaking out, Richard kept me going on the days I wanted to give up. He inspired, motivated, and loved us all, and I feel quite sure loved us all as much as we loved him.

Before I met Richard in person, we often said we were kindred spirits. I know he has said that, and felt that with so many. But for me, meeting in person sealed that between us. He was a man of the people, and always opened his arms and heart to us all, without concern for any personal cost to him.

We all loved him, and will miss him greatly.

Just like Richard, finding a cure for any of the dementias has never been my priority. Research into improving the lives of the more than 46.8 million people already diagnosed with dementia is to me, equally important as a cure.

The big Pharmaceutical companies have almost total control of the research industry, and also many of the advocacy organisations, and there really is big money in dementia, which is not always helpful to those of us already diagnosed.

As with any critical illness, and I know we agreed strongly on this point, and we both spoke up for research into improving the care and outcomes for people already diagnosed with dementia.

We must never forget the people who are living with dementia NOW, currently almost 47 million of us.

Our needs are just as important as the need to find a cure, and research into living beyond the diagnosis of dementia, and interventions such as lifestyle strategies, non-pharmacological and positive psychosocial interventions and care and support that focuses on improving quality of life are equally important.

Helping people in the future must not be at the cost of the needs of those of us living with dementia today.

Thank you Richard Taylor.  We sincerely hope your family and very close friends get some idea today of the sense of love we all felt for you, and get some comfort in that. Our sympathy and sincere condolences go out to them, and to each other.

Finally, many have asked is who will take Richard’s place in this fight for equality, and who will be the voice for people with dementia?

I am one person who will do that.

Everyone here today will, I am sure, also fight for equality, autonomy and inclusion. People with dementia, and people without dementia, will do this.

Just like Richard did, Dementia Alliance International wishes to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!

And I feel very confident there are literally hundreds or thousands of others living with dementia, or caring for people with dementia, who have accepted this call to action, that he so genuinely and proudly began after his own diagnosis of dementia, probably of the Alzheimer’s type.

Together, we can and will change the world for people with dementia.

DAI Member, Leo White made a poignand and personal tribute,  ending with reading this famous and apt poem by John Donne

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Tributes from members and friends who were unable to attend the online memorial:

To begin, I am starting out with a tribute by a dear friend or Richards, Bettina Hackel from Switzerland, who attended the online tribute, but for reasons unknown, missed out  on the chance to participate. Our very sincere apologies Tina, we know how much you loved Richard. Tina posted this on her Facebook page yesterday, and with permission, we are adding it her.

Bettina (Tina) Hackel, Switzerland

THIS IS MY TRIBUTE to yesterday’s Meeting HONORING RICHARD TAYLOR.

For some unknown reasons Gmail refused to send my replies to DAI, so I didn’t make it to Kate’s list. Thank you, Kate, for this wonderful meeting; I could have listened to stories about Richard all through the night!

Hello,

My name is Bettina, from Switzerland. I lived in Florida for ten years with my late husband Alex, who was diagnosed with dementia. I cared for him at home, supported by wonderful and informed Florida folks.

Back in Switzerland I felt miserable. No one wanted to hear from Alex, his dementia, our experiences in Florida.

“Now leave Alzheimer’s behind! Start a whole new life!” so I was told.

In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor – and there it was, my whole new life!

Richard in his empathetic ways pulled me out of my dark hole.

I found the automated German translations on his website, including his archived Newsletters, bad, even useless. So I offered Richard to translate them for him, and his assistant would publish them in German. This didn’t work very well, and sometimes Richard had no assistant.

So Richard decided to introduce me to the service he used to manage his Newsletters. But first he wanted to know much more about me. He wanted us to work together as friends. There was my new purpose in life!

After a year of communicating online, Richard appeared on my laptop screen with a broad smile:

“Surprise, surprise!” he announced, “we’re coming to Berne! I’ll have a few days, we can meet and spend time together!”

So we did. On our first day we made a roundtrip to the lake of Geneva and through alpine regions. On a stop Richard bought himself a large bottle of Coke.

How did I feel in Richard’s presence for a whole day, as a guide, an admirer and friend to be …

Nervous I was, overwhelmed and happy all at the same time. I felt, Richard was scanning me, highly present and focused.

Richard opened his bottle of Coke and took a good sip.

Then he offered: “Would you like some, too?”

Startled I stammered: “Oh – yes – thanks – but – the whole bottle?!”

“Well, I hope not!” Richard replied with an amused smile.

So I took the bottle and got a sip and passed it back – and Richard calmly gave it to me again – until the bottle was empty. It was a ritual. YES! Now we were friends!

When Richard was back from Europe, I got an email: “YES! I’ll call you today!”

He taught me how to edit and publish the Newsletter, both in English and in German. Sometimes there was an assistant in his office, sometimes not.

When we were alone, we enjoyed to tell each other stories, to talk about our dogs, share experiences and dive into philosophical issues … these were peak moments.

Richard asked me to write a column in his Newsletter. He used Skype when he was on the road to introduce me to friends, and invited me to join online meetings and webinars.

Richard wanted me to become an activist for and with German language people with dementia.

Thank you, Richard!

Tina

Dr Jennifer Bute, FRCGP, UK

I read Richards book ‘Alzheimer’s from the Inside out’ soon after my diagnosis at a time when I read all the books available on the subject and his was the only one that inspired me. Most of the others were unutterably depressing beyond words I was also inspired that he used his past skills to learn from his daily frustrations and communicate them in a way that was familiar other in order to help and inspire others. This was a real inspiration to me to do the same thing with my past training medical experience and teaching skills. I shall be ever grateful to him.

I remember reading in his book about one incident where his family had completely misunderstood something he said. They certainly loved him dearly but they had completely missed the point. I was struck in such a way that I have never forgotten. We must not assume others understand what we are saying even it is obvious and makes perfect sense to us. it is the misunderstanding of what we say that they are rejecting not us!

I first met Richard 3 years ago in London at the ADI conference when he Kate and I shared the same platform. We became friends and he had the amazing ability to make all his ‘friends’ feel special. He always replied to emails and was always encouraging and interested in what others were doing.

I loved his frustration with the  ‘big pharma’ as he called them and agreed with him,  also in his stance with the charities that were apparently more concerned with a future impossibility of a single cure (whenever was there one cure for cancer?) than in enriching the lives of those already living with dementia

His cancer inevitably caused a dip but he made an amazing recovery for a time, which said a great deal about his attitude and he always continued to care for others and was involved until the end. I last ‘saw’ him in a video message at a meeting  (with Kate) in London when we already knew time was running out.

He was an amazing man and his legacy will certainly live on. Thank you Richard.

Keith OIiver, UK

Kent and Medway dementia Service User; Envoy and Alzheimer’s Society Ambassador

Whilst there is a growing number of people coming forward to express what living with dementia is really like, no one has done so with the eloquence, humility and positive impact which Richard brought to the cause.

In preparing today for a radio interview I was mindful of Richard, and turned as I do from time to time to his remarkable book “Alzheimer’s From the Inside Out”. The book is like the man – inspiring. When I first met Richard at the ADI conference in London in March 2012 we immediately “hit it off”. His comment written to me in his book which I eagerly purchased said it all when he wrote,

“To Keith, we are kindred spirits. It is my honour to meet you. Best wishes on your journey. Thank you for making a friend of me. Richard.” The honour was entirely mine, and it was to Richard I turned when Reinhard Guss and I were setting up the Forget Me Not group in Kent. Richard’s advice then was as always, clear, direct, relevant and thoughtful and extremely helpful.

Richard and I also shared the background of being teachers, he in University and me in Primary/elementary schools. Age of student may have been different but we shared the desire to make a positive difference to those in our care, those who were on a learning journey. Although Dementia brought both our careers to a halt it could never fail to halt this desire, and it is to the world of dementia where his skills were so brilliantly applied.

As I often say, one door closes and one door opens, thank you Richard for helping to prise the door ajar, and then to help push it open wider for those of us with dementia.

Brenda Avadian, USA

Unfortunately, we lost one of the great voices with dementia last month (July 25) –Houston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer’s from the Inside Out.

Freda Collie, UK

‘ Altho’ you, Richard, have never met me, your online friendship, encouragement, support and information, plus your awareness-raising in the community and amongst medics, have helped me and other people with dementia and carers to keep calm and carry on – even tentatively (or confidently) to take up the baton and run for a little way!

Your newsletter and groups, the webinars etc, your humour, even the FB games occasionally, helped to bring that vital human contact here in my very quiet little one-person residence!
Travel in peace. With our thoughts and prayers.

Thankyou!

Freda

Lilia Mendoza, Mexico

I have met Richard through his book Alzheimer from inside out, we found a Mexican Printer to publish his book in Spanish, I had the privilege to review the translation. In that way we were connected. I admire his concepts, wisdom & most of all his sense of humour. He was really some one very, very special. We all with or without dementia are going to miss him enormously, but he showed us the path & we will follow it. Peace to a very special soul!

Kiki Edwards, Nigeria

How do we make the world a better place? We do so just the way Richard did – by infusing empathy into every individual we encounter. Did Richard know how much of an impact he had and continues to have on Nigeria? I know he saw how I religiously re-posted his messages, all of which were in turn re-posted. Words of wisdom, all of them. An insight into his duel with the fiend called Dementia. In his last posts, it was evident he was struggling, but he still managed to put his thoughts across. I waited for comments. None came. I guess everybody was just like me. Lost for words. Then I remembered some of his postings and videos I saw in the past.  People, friends shy away because they don’t know what to say, how to act around people diagnosed. At the end of the day, Richard is still Richard, irrespective of his diagnosis, was his message. I can’t remember my exact comments to his last posts. It was my usual one-liner. I just wanted him to know we were there with him and for him. Then minutes later the comments started flooding in like a deluge! Yes, we all paused, froze, even. We all tried to visualise what he was going through. We all remembered his “teachings”. We all saw him speaking in our head – “I am still Richard”.

Richard Taylor PhD, I, and Nigeria thank you.

Please note: Prior the recording of the online Tribute to Richard Taylor, it was announced that with permission from the family, this would be uploaded for others to view, everyone in attendance was given the opportunity to turn off our cameras.  Richards family has given consent for us to upload it on our YouTube Channel and share it here. Thank you.

Dementia is selfish, by Susan Suchan

Screen Shot 2015-12-24 at 11.28.42 amA couple of weeks ago during one of our Thursday weekly online “Richards Thursday Support Group”, I was interested in a comment made by one of our dear members Susan Suchan, about dementia being selfish.

At the time, I asked Susan if she would write about it and she then sent me the article below. I then asked if we could share it, and she replied saying: “Of course, feel free to use it  and I hope it can open a discussion or at least thoughts for others”, giving us permission to publish it on our weekly blog here to our dementia family (DAI members) and supporters.

Thank you Susan.

“I am told by my children and my family, how giving and generous a woman and mother I have always been. I am flattered and mystified. I now search my heart and soul for what that looked like.

I have been unemployed, outside of the home for I believe 3 years now, my children have children of their own and my world as I once knew it is much different than I had ever imagined it would be.

I have never been one to sit still for too long, so after finally coming to terms with the inability to properly keep my business running, I have moved in with my sister and brother-in-law.

I have been busy reinventing my life and as I do this, I find that my new friend are those living with a dementia diagnosis, just like me. I am satisfied and inspired by the abilities I hear and see coming from my new friends. I want to be strong and brave, forward thinking and as inspiring as they. I busy myself with new projects for a world that can be more effective for those of us living with a chronic disability.

All of this is true is what keeps me moving forward, the hopes that with our combined brilliant minds, we will set the stage for change. And then I have trouble remembering to show up for a chat group, remembering names of what are familiar faces and I am reminded that dementia likes to take it’s fair share of my time too. Far too much time in my opinion!

I with my 5 lovely grandchildren are kept short, so grandma doesn’t get overwhelmed and confused, possibly even a bit cranky. Dementia dictates how long my visits are. Organizing a family dinner, preparing a meal, dementia has selfishly borrowed my skills as well as my sense of smell and taste. I don’t remember birthdays, holidays or even how old I am. Dementia is keeping that last bit of information, safely tucked away from me!

My home has always been open to friends and family, filled with music, impromptu meals and sleep overs by the grandkids. I would give you the shirt off my back if that’s what you needed. These ideas have been robbed by dementia. Some days, I feel more apt, more aware of the life I aspire to and I thank dementia. Thank you dementia for thinking of me less. But because is a selfish prankster, it reappears and takes the spark of ideas I felt so confident of and steps right up front and leaves me feeling unbalanced and unsure again. 

Dementia is selfish, it has taken my relationships and stolen my lust, leaving some people to suggest I am cold, hard, noncaring and distant. Dementia is not just an inconsiderate friend who,  borrows something and forgets to return it, o, dementia takes my time, my abilities and on some days, my sense of self.

My family is loving and supporting and for this I am grateful. Without them, I may turn sour and entrenched is only the losses. My new friends are pushing forward, initiating and compensating just like the thousands of other people living with dementia.

I am learning this game dementia plays and the rules it would like to make for my life. I have become selfish as well. Dementia will take, but not without it’s having to recognize my keen ability to compensate and reinvent myself. If my old friends could take the time, they would meet a new, improvised and pretty darn good functioning woman, who now hopes to use my experiences living with dementia, for the betterment of those to come.

Yes, dementia is selfish, knowing that, arm yourself for its manipulative ways, learn from those that have come before you and use this newly created mind, to continue the fight for better  understanding and living with the selfishness of dementia.”

I agree with Susan and feel what she has written is insightful, and incredibly helpful. Dementia is selfish, in the sense that we have no choice in the many things it changes in us, and we must be ‘armed’ to fight it. The other thing it highlights of rme is about the way others subconsciously often ‘blame’ us for those changes.

It is Mr Dementia who is changing us, and definitely not something we would ever choose for ourselves. As our needs change, which they do without our permission, we  need others to modify the way they treat us and speak to us, and we need them to work with us for ways that do suit our ever changing needs. 

Author: Susan Suchan 2015
Editor: Kate Swaffer
Copyright: Susan Suchan and Dementia Alliance International 2015

Edie and Anne speak at ADI2015

Edie Mayhew and her partner Anne Tudor from Ballarat, Victoria in Australia gave a poignant presentation titled: Our Bitter-Sweet Journey with Younger Onset Dementia . It is an enlightening discussion on the highs and lows of living with dementia, and of their triumph as a couple on living the best life possible with Mr Dementia present in their home. Thank you both for allowing us to share it with DAI members here, and also to Dr Rahman for recording it and giving permission for us to share it here.

They have also kindly provided their speaker notes for us to publish.

OUR BITTER-SWEET JOURNEY WITH YOUNGER ONSET DEMENTIA

INTRODUCTION: 

Hi I’m Edie, and this is my partner, Anne. I was diagnosed with Younger Onset Dementia, Alzheimer’s Disease in September, 2010, aged 59. I worked happily as a teacher of the deaf for twenty years, teaching unhappily in a regular Primary School for two years, then for 5 years as a Massage Therapist. But after two hip replacements I found my true calling as a Driving Instructor loving, every minute of the twelve years I was able to do it. Being forced to retire was my greatest disappointment when diagnosed with Alzheimer’s. It also put an end to being a blood donor. I almost made it to 100! I don’t remember much about pre-diagnosis other than I kept going to the wrong house to pick up clients for their driving lessons. Anne will tell you about that period.

Pre-diagnosis: 

In 2005, one of Edie’s hip replacements dislocated and she was given pain relief before and after arriving at hospital. For three hours, Edie continually asked, “Where am I?” and “What am I doing here?”. It was the first time I’d seen her mind fail her and it frightened the hell out of me. My mother died from Alzheimer’s a few months later. I became a research subject in an Alzheimer’s study early in 2006, because of my mother’s alzheimer’s and almost imperceptible signs of change in Edie.

A pattern was emerging with Edie withdrawing to the study and spending hours at her computer. In time I came to realise she was playing computer games. She would no longer sit and relax with me and would only watch sports programs on TV. Edie was also reluctant to socialise, later revealing she couldn’t follow group conversations and didn’t want to repeat herself. If I tried to discuss these changes she would get defensive or angry. If I came into the study she’d shut down the computer. We had never had these issues before.

Edie wasn’t able to express what was going on in her head; she was cut off from herself as well as me. She was increasingly disengaging, becoming more forgetful, easily frustrated, lethargic, defensive and obstreperous at night.

We’d make arrangements to meet for lunch but she wouldn’t turn up and I wasn’t getting messages about arrangements which had been made to catch up with friends. But the clincher that something was seriously amiss concerned a pizza delivery. Some Friday nights Edie ordered us a large capriocossa. One night, one small capriocossa arrived for both of us for dinner. “Why on earth would you order a small capriocossa?” I asked bewildered. “I’m not very hungry” was Edie’s response. My world collapsed in that moment. I knew I had lost my Edie.

I was increasingly having to remember events and organise everything, including holidays. We went on safari to the Kruger National Park in 2007 and to Norway, Vienna, Prague & Croatia in 2008. Unlike all previous travel, Edie had no interest in being involved in any of the planning, although I knew she was very keen to travel. Twice at airports when we were separated Edie became very distressed. She stopped contacting friends and initiating outings. She was leaving for work earlier and earlier.

When we were putting this presentation together I mentioned to Edie that it was bringing back a lot of painful memories and she said “I didn’t handle it very well”. She didn’t, she shut me out and wouldn’t share her concerns. But I didn’t handle it very well either, I wasn’t as patient as I wished I’d been, nor was I persistent enough in getting Edie to talk. We both withdrew as a way of managing the situation. It was a horrible time.

The Road to Diagnosis:   

Anne says I was prone to falls and had several from 2007 onwards, badly injuring my shoulder a couple of times and grazing my shin very badly when I tried to stop my car from rolling down the driveway! One day I came back from a walk and told Anne I thought I’d fallen over and dislocated my finger. Next time we saw the doctor she confirmed the finger had been dislocated & I must have fixed it myself.

In mid 2008 we were travelling from Split to Dubrovnik by boat. We decided to top & tail it on the bottom bunk and put our bags on the top bunk. At some stage in the night, I climbed up and went to sleep. I must have needed to go to the toilet & forgot I’d shifted beds. This resulted in me falling with a great thud, hitting my head against the half opened metal bathroom door as I landed, and leaving me with two black eyes & a very sore head. Passengers looked at us suspiciously at breakfast next morning, which amused us greatly.

In December 2008 I had a knee replacement. While in hospital our bank rang and told Anne we were two months behind in credit card payments. We’d never had to pay interest before. When Anne checked my desk she found a mountain of unattended bills and business forms that had been there for months. I was summarily sacked as the Chancellor of the Exchequer.

In April, 2009 we travelled to the Sunshine Coast with Anne’s sister & her husband and I tripped on a shrub, fell over and shattered my patella. Fortunately the knee replacement I’d had four months earlier wasn’t damaged. The kneecap was wired and we went on our planned holiday to North Queensland. I was in a full leg brace & totally dependent for six weeks.

Anne persisted in trying to get me to see our GP. It took two years. When I came home she asked me what the doctor said and I told her she said there was nothing wrong. I think I must have forgotten why I went to see her. When we both went a couple of weeks later, our GP conducted the three object test and declared “Edie, your memory is shot”. I then had a neuropsychological assessment over six hours from May, 2009. Results indicated problems with new learning and memory, and mild attention and organisational difficulties. He suggested a review in twelve months.

I was referred to a geriatrician while still wearing the full leg brace. The geriatrician concluded I was depressed, which I was, and dismissed the neuropsychological report. An MRI scan indicated no abnormalities and we were told to get on with our lives and forget about memory problems!

Some months later I had a review with my Sleep Apnoea Specialist. Anne talked to him about her concerns and his response was that it was a bit like looking into the distance on the road: you see an oncoming vehicle but it’s too far away to know what type of vehicle it is; when it gets closer you can determine if it’s a bus, or a truck or a car. We knew this to be bad advice and that early detection and diagnosis was very important.

Anne had already decided prior to the neuropsychological review 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.

Diagnosis 

We had the 12 month review mid 2010. The neuropsychologist kindly wanted to give us the feedback at home. Significant deterioration had occurred in the 12 months, particularly in new learning and memory. He indicated the likelihood of Alzheimer’s.

We sat silently in the lounge room for a long time after he left, feeling appreciative for the calm, caring way we were informed, but numb. Eventually we stood up and held each other for a long time, and cried. The elephant in the room was the experience with my mother who had Alzheimer’s for more than 20 years. We had moved from Melbourne 23 years earlier to assist my father in her care. We had been to this place before.

Edie obviously found the thought of me having to face this dreaded disease again unbearable and undoubtedly it was a significant factor in her shutting down for so long. However having a partner and a parent with dementia is a very different experience.

We sourced a specialist neuropsychiatrist in Younger Onset Dementia in Melbourne for a formal diagnosis. He has been a great support. Alzheimer’s was confirmed in September, 2010 after a PET scan and a review of the earlier MRI. We knew now what we were dealing with and there was relief in that. It was more than five years since I first became concerned about changes in Edie.

 The First Two Years Post Diagnosis: 

Having to retire was a terrible blow. We had to sell my car and try to sell the business. There was a succession of new people passing through our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. Anne felt overwhelmed at times with the amount of form filling she had to do – Centrelink to claim Disability Pension, Carer’s Pension, Carer’s Card, Companion Card, Taxi Directorate, ACAS forms, and a 30+ page application form for Respite in an Aged Care facility. Thankfully Younger Onset Key Workers assist newly diagnosed families through the process now. We are fortunate to have an excellent Key Worker in Ballarat.

Becoming actively involved in the world of dementia was a positive first step. A group of local people with Younger Onset Dementia and their partners participated in the three day Alzheimer’s Australia “Living with Memory Loss” program. It was confronting and informative, powerfully bonding our group and helping to establish a small community of care and support. We now knew Alzheimer’s Australia would be with us for the long haul. I joined Alzheimer’s Australia Victoria Reference Group and Alzheimer’s Australia National Advisory Committee.

Those with the diagnoses went on to participate in a planned day activity group at Eyres House, initially one day then two days a week. We were a close knit group, had use of a bus and engaged in many fun, activities. The program is currently going through a transitional phase as two members died late last year and dementia has progressed significantly for others; they have either been admitted to an aged care facility or are no longer able to participate in the YOD program. It has been difficult as I am the only original member left. The dedicated staff are committed to YOD and we’re hoping that YOD members with advancing dementia will still be able to maintain some connection. Two new members have joined.

As part of planned activities at Eyres House in 2011, a specialist YOD art group was established at a Neighbourhood House, run by the Salvo’s, one half day a week. Using different mediums we’ve created a number of pieces, individually and in groups. We’ve also produced personal photo booklets. I had no experience with Art before this and it has been a great activity, building confidence, enabling creative expression and giving an opportunity to produce something meaningful. Some of our work has been placed in the YOD Garden at Eyres House.

After I had my third hip revision in December, 2011 I went to a private hospital nearby for a week’s rehabilitation. Although the hospital was aware of my dementia, and a profile Anne prepared had been placed at the front of my medical file, I was still discharged without any consultation with her.

During the first two years post diagnosis we had regular appointments with the neuropsychiatrist and a specialist Younger Onset Dementia Social Worker. In addition to support from Eyres House, we had a Local Council respite worker for 3 hours a fortnight and respite support from a community service provider who came four hours a week. Anne received support from Carer’s Victoria and she attended monthly Alzheimer’s Australia supported Carer’s Group Meetings, formed after the Living With Memory Loss Program. I know Anne values the group highly. From the beginning we established six weekly appointments with our GP, then monthly appointments with a physiotherapist and weekly sessions of hydrotherapy. I also see a podiatrist every six weeks.

We completed major renovations to our home two years after diagnosis. It was worth the stress and inconvenience as it has made our lives easier with a new kitchen and bathroom, flooring, carpets and a lighter coloured interior. The pull out pantry and large drawers are great. We have a beautiful garden and a gorgeous 14 year old dog called Shinji. We both love our home and where we live and plan on staying there for as long as possible.

We discovered over time that my bad humour was related to feelings of vulnerability, grief and fear of the unknown. 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 had to face the grief, and terrible sense of loss that comes before acceptance. The necessary internal shifts brought with them a serenity and even deeper love. We gradually became more relaxed, contented and good humoured.

There’s no short-cut to fully accepting such a changed life circumstance, and we didn’t handle things as well in the first couple of years as we do now. But with good communication, tinkering with medication, and the support of significant others, we gradually learned to accept then embrace our new reality and the subtle changes as they happen.

A Taste of An Anne Day: written in 2011/12 ANNE

I can’t find Edie’s purse and phone; we’ve attached them with a small chain so they can’t get separated when lost. I spend countless time looking for misplaced or lost items. Rings and keys constantly go missing as well. I’ve replaced at least 25 house keys as well as multiple credit cards and mobile phones. Sometimes I look for an hour without success, then later that day or the next I notice Edie with the missing object. She doesn’t remember it being lost so can’t tell me when it’s found.

Edie locked me out when I went to hang out the washing. I’ve been locked out many times when I’ve been working in the garden. She forgets where I am. On the other hand the front and back doors don’t get locked when she leaves the house.

I was packing for an overnight stay. Edie put some toiletries in the bag and I took them out. I said I’d already packed toiletries. Later I found she had put them back in again. On a good day you laugh, on a bad day you don’t.

Today I have a deep, aching, searing, loneliness for the lost Edie. The logical, practical mind that remembered everything, always. She knew what to do, how to do it and she always did it well. Edie was my rock.

We’re in bed and playing with our iPads. I turn to Edie to tell her I’m ready for sleep. She gets out of bed and puts on the main light to organise her CPAP machine. I ask her to turn on her bedside light instead of the main light, just as she always does, she gets angry and goes to the second bedroom. In the early days Edie would get into a bad mood and stomp into the other bedroom to sleep without me knowing why. The next morning she’d forget she’d been upset and tell me she moved beds because she was tossing and turning and didn’t want to disturb my sleep.

I woke up with a nasty headache. I call Edie 8 times before she gets up. We have to leave for an appointment in 15 minutes. She’s still in her PJ’s and playing games on the iPad. I jig her along in a good natured way. It works. Getting frustrated and impatient doesn’t.

“What day is it today?” Edie asks for the fifth time and it’s not midday.

I can’t open the freezer because Edie put a loaf of bread in the icebox and it’s stuck and I just found the ice cream in the cupboard. It takes so much time to do or undo or redo things each day. Edie has accidentally broken a treasured crystal glass I’d given to my mother 45 years ago and a short time later she broke a favourite tea cup. I’m more detached from material items, there’s no point in prolonging discomfort for no benefit to either of us.

I can’t find the utensils I need to cook tea. I put them in particular places in drawers and cupboards and they disappear. Sometimes never to be seen again. I know I put the small sharp knife in the top drawer, but it’s not there. In fact it’s not in any drawer and this is a replacement for the previous one which went missing in the same way.

We had a lovely day, and dinner. We were sitting together watching TV. I’m privately reminiscing “This is just like old times”. Edie’s mood becomes sombre. I ask her what’s wrong. “I didn’t like what you just said to me” she responded. I hadn’t said a word, just feeling a quiet contentment. I realised later that a very unpleasant memory returned of me being angry and expressing my frustration. Before diagnosis, I’d get exasperated and say, “Jesus, Edie”. Historical emotional memories would emerge as if it had just happened. Edie quietly disappears and goes to bed. Dementia can be an assault on both of us.

Before and for two years after diagnosis, there were many times I’d feel threadbare. I rarely if ever feel that way now. Personal growth comes with time and experience, and from facing your own humanness and limitations each and every day. Caring humbles and softens, and smoothes out the rough edges. It gets easier.

A Taste of An Edie Day:   

We have put together a series of slides with captions which will give you some sense of a typical Saturday for me at home.

The Last Two & A Half Years: 

Some Concerns about Respite and Residential Care:

I’d first like to make a couple of comments about respite and residential care.

Appropriate planned respite is very difficult to get, and virtually impossible in a crisis. For a few years we were able to arrange planned respite in a local Aged Care facility, one that Edie enjoyed. The respite was organised 12 months in advance, for 1-2 weeks every 3 months and the arrangement benefitted both of us. Unfortunately this facility has discontinued respite. We think we’ve found a good alternative aged care facility but it will only offer respite this year. Good respite is a necessary part of our plan to stay together for as long as possible.

We would like any facility Edie is involved with to be a homely environment, one that recognises we have spent most of our adult lives together, is respectful of our relationship, offers an appropriate quality of care with an informed approach to YOD, is person centred and provides a stimulating environment.

It was towards the end of 2012 that calm descended on our household and remains so. An addition to Edie’s medication regime to counter anxiety issues at night may be part of the explanation. The decision for me to retire was definitely a factor. Although I had not taken on new work and had gradually reduced my hours for the three previous years, our lives are much simpler since I actually retired in June last year. We had worked our way to a good place.

We feel comfortable with other’s who know, understand and accept Younger Onset Dementia; those who are in the same position as ourselves, special family members and friends who have stayed closely connected as well as the respectful professionals who assist us along the way. We need and appreciate this help, support and encouragement. We need to know someone will be with us when they’re most needed.

We still check in with our neuropsychiatrist from time to time as well and have occasional visits to the Social Worker. We have a Consumer Directed Package which we use for gardening help. Julie who worked with Edie for fours hours a week for 3 years, retired last November and gave her a farewell poem called “Precious time with Edie”; it is working out well with the new worker, Maree. Edie is still involved with the YOD programme at Eyres House two days a week. We continue our regular medical, physio and hydrotherapy appointments. I also do Yoga and have monthly massages. We are fortunate to have extensive resources, support and commitment to Younger Onset Dementia in Ballarat.

Some Brief LGBTI Comments:

Many people in the LGBTI community have had discriminatory experiences throughout their lives; others try hard to blend in so as not to experience rejection and discrimination. We count ourselves  fortunate having not just avoided obvious inequities since Edie’s diagnosis but felt genuine respectfulness and acceptance from those who cross our paths. I did wonder at the time though whether hospital staff at the rehabilitation hospital who discharged Edie without any consultation with me would have been more consultative and patient care centred if one of us was male. In many same sex relationships, especially those without children, partner’s and close friends can take on an even greater significance to the person with dementia. In some circumstances, family are unable to accommodate the lifestyle of their LGBTI relative and try to override the wishes of the partner or the person with dementia. For some a suspiciousness of medical and community care resources exist because of earlier bad experience. We participated in a study conducted by Dr Catherine Barrett and colleagues at La Trobe University. The project is a collaboration with Alzheimer’s Australia. The purpose of the study was to document LGBTI people’s experiences of dementia and their needs to inform the education of service providers. We understand there are few studies internationally that have sought the perspectives of LGBTI people themselves – and until this occurs it difficult to understand how services could be consumer focused. The results will be published later this year and would be well worth examining.

In Summary: Triumph, acceptance and love

Dementia is disabling, challenging and life changing, but there is 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. Dementia has also strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn’t have had.

The last two and a half years have seen each of us grow to a place of acceptance, contentment and peace. It’s not devoid of frustration and stress but those feelings pass quickly because that’s not what we want our lives to be. We choose to be on the side of life.

We are grateful for what we have and it helps us deal with our reality. I have never loved Anne more, nor have I ever felt as loved by her. I know she is here for me and I know that makes me feel safe. We do feel blessed. We’d like to finish our presentation by sharing something of our 31 years together.

 

Authors: Edie Mayhew and Anne Tudor Copyright 2015

Editor: Kate Swaffer

 

 

 

 

 

 

 

 

 

 

Cafe Le Brain Australia and our online Support groups

Screen Shot 2015-05-15 at 8.17.48 amCafe Le Brain Australia is re-commencing on the third Friday of May which is May 15th, being run again on a monthly basis from 1pm (Brisbane, Queensland time).

All DAI members will be sent the link to join as soon as it is back up on our Events calendar. For May, we will have a guest speaker, yet to be confirmed, but who will present on a topic of interest to people with dementia and their friends and family, and who will be available for questions.

Please keep May 15th free to join Cafe Le Brain Australia. 

DAI member, Mick Carmody from Brisbane in Australia, continues to host the weekly online support groups at a time suitable to those members living in Australia, New Zealand, Japan an other countries in time zones similar to them. Well done and thank you Mick for your dedication and enthusiasm. The details for this regular support group is below;

Online Support Group for people with dementia in Australia

Hosted by Mick Carmody on  Tuesdays 1:00pm – 2:30pm
at ZOOM Online video (map)
This support group is run by people with dementia, for people with dementia, and is a meeting place for people diagnosed with all dementias including Alzheimer’s disease or cognitive impairment under review. It is a confidential forum, not for professionals or interested others to attend, and the rule on confidentiality is that anything said in the group, stays in the group. Respect and dignity for all, as well as providing a safe and empowering environment are some of our goals.
Please contact [email protected] to register for this support group. The link to the group will be emailed to you the day before the support group meeting.
Go here for information about all of the DAI events and support groups.

Copyright: Dementia Alliance International