Tag Archives: Hello

Hello, my name is George Chong K.L.

On Day 16 of the #DAI #Hello my name is series for #WAM2018, we are featuring a short story and  video about one of our members in Singapore. The Alzheimer’s Disease Association Singapore has been working hard towards empowering and developing people with dementia to become self advocates, and also to set up their own Dementia Working Group next year. DAI is delighted to support them, and to be able to share part of George’s story with you today…

There is no cure

Hello, my name-George Chong K.L. At the age of 46, I went through my first investigation for dementia in April 2016, and was diagnosed with Brain Atrophy through MRI, and advised it was Mild Cognitive Impairment. In January 2017 I sought a second opinion, and in April 2017 had further investigations including a Pet Scan and Lumber Puncture.

The diagnosis was Younger Onset Alzheimer’s Disease. Like many, I was not thrilled with the diagnosis, so I decided to get a third opinion which ended in the same conclusions. I was prescribed with Echelon Patches in September 2018. I learned about DAI though meeting Kate Swaffer, when she came to Singapore in 2017 as a guest of the Alzheimer’s Disease Association here, and since then am probably considered Singapore’s first self advocate! 

As there is no cure, and no disease modifying drugs, I use a number of holistic remedies which include the following:

  • Ketogenic Diet
  • Meditation 
  • Acupuncture
  • Yoga
  • Qigong
  • Coloring in Puzzle
  • Playing frisbee 
  • Light walking or running

The disabilities I experience caused by my dementia include losing the ability to do mathematical calculations, understand instructions and logic, my verbal expression, memory loss, and sometimes frustration and even anger. Living with changing abilities and losing what used to be automatic and easy functioning is very difficult to get used to, and therefore easy to feel upset about.  However, my wife Lyn and I continue to face dementia together, as best we can.

The following short film was made this year to raise awareness of dementa in Singapore, and about my experiences [apologies we have not been able to embed it, so please follow the link].

Talking Point 2018 – EP7 Thu 31 May 2018 – Am I At Risk Of Dementia?

Help support people like George. Become a DAI Sponsor or Associate today.

Hello my name is Carole Mulliken

Carole Mulliken

On Day 15 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature long time pioneer advocate Carole Mulliken from the USA.

Carole is one of the founders of the Dementia and Advocacy Support Network International (DASNI) and is also a board member of Dementia Alliance International (DAI). She co hosts one of DAI’s Peer to Peer Support Groups on Friday afternoons.

We are honored Carol shares her extensive wisdom and experience with us; she is a shining example of living positively with dementia, for well over 20 years.

HERE FOR A REASON

Hello my name is Carole, and it seems, I am still here for a reason.

Although I was not aware of it, the surgery had been long and difficult. I learned later that it had been a quintuple bypass surgery. I was told the heart attack continued stubbornly for so many hours, they weren’t certain they could perform the operation I needed to survive. I’m glad I missed all the drama.

Later, in the telemetry unit, a vivid red, heart-shaped pillow with a picture of a heart and all its supporting vessels was presented to me, as if to congratulate me for something. I remember thinking the congratulations belonged to the surgeon.

My husband had died a few short months earlier, and to be honest, I wasn’t all that sure I wanted to stick around myself. But all these hospital people had gone to such great lengths to assure that I could stay alive, It would seem ungrateful and rude to tell them that.

Some of the nurses knew what a challenge my surgery had been. Their eyes would grow wide and they’d solemnly shake their heads as they told me,

“You are here for a reason,you know. You are here for a reason.”

I waited for the them to reveal the reason. I had already been disabled for ten years and now would be living completely alone, following major heart surgery. One of the cardiologists had told my family I would never get out of a hospital bed without an assist. I couldn’t imagine what reason I might have for continuing to exist. I nearly asked one nurse what the reason was, but she had patted my hand and scurried off to her next task. I hugged my puffy heart pillow and slid to sleep.

Taking my heart pillow with me, from the hospital, to the skilled nursing facility, back to the hospital and then to assisted living, I spent six months under others’ supervision. I couldn’t walk anywhere without a physical therapist hanging on me with a gait belt. Independence and autonomy were all I struggled for. After six months, when the physical therapist finally declared me an “Independent Community Ambulator,” I felt better than when I had gotten my driver’s license at 16. Liberty at last, to ambulate anywhere in the community!

Then I realized I needed to know the reason or purpose for which I would ambulate freely.

My Mission

Twenty years ago, I had written out my mission in life, my purpose for being, in a journal. I unearthed it to see if it might help me.

“I believe my mission in life is to discover, continually develop, and use my unique, God-given gifts to help those in my circle of influence to learn and grow in knowledge, skill, and character. I hope though love, clear communication, and faith in others, to assist them in discovering and developing their own unique talents and abilities and find the personal missions in their own lives.

I believe people are essentially good, that they have an inherent drive to grow in positive ways toward their own uniqueness as God intended; that human diversity is the medium in which adaptation and endurance flourish; that life is growth and change – a process with both polarities and cycles, and that life is fundamentally good.

I believe that paths to one’s personal mission are many, that knowledge of it is equally in the subconscious as in the conscious. Quietude, reflection, reverie, and prayer are all means of discovering it. I continually learn how to better reach those states and help others to do so as well.

My personal gifts of intelligence, expressiveness, creativity, intuition, and a capacity for reflection manifest best in conversation and writing. I strive to provide for others the opportunity to reflect and make choices about their lives in a considered way – in contrast to the hectic and driven ways in which we now live. I strive to be the kind of person in whose presence others the world as full of possibilities and themselves as valued, creative, and unlimited in potential.

I believe that quality education increases the breadth of choices one has and is inherently worthwhile. I strive to be increasingly more a product of my choices rather than my conditions and enable others to do the same.

I will develop an attitude of gratitude, practice a belief in abundance, and approach conflicts with a win/win attitude, accompanying negotiation skills, and choosing only love.”

Back then it seemed to fit me. For many years, I loved educating teenagers, so they could begin their adult lives. When I was disabled and no longer able to teach in a public-school classroom, my purpose became helping recovering addicts reestablish their lives. I helped people newly diagnosed with dementia at an online message board. That was only a different type of student and a different platform. I loved doing that for twelve years. When I was offered a chance to teach English again, this time online for a community college, my original context was restored, and I felt like my old self. I worked from home and didn’t even need to ambulate. But then the community college system decided they would no longer hire adjuncts from out of the state, and 250 of us lost our jobs with the stroke of a policy pen. I had lost a context in which to pursue my life purpose. I was ambulatory, but I had nowhere to go.

Worse, my belief in abundance was challenged by considerable loss of intellect and creativity following a series of mini-strokes. Holes appeared in my brain where previously abundant brains cells had been. Brain scans proved it. Oddly enough, I still had the drive to create new things, but had no ability to accomplish them. Furthermore, I still “felt” I was brilliant but knew I was profoundly disabled in certain areas. An analogy I used was that if I were talking about running rather than thinking, I had one leg as long as Wilt Chamberlain’s and the other cut off mid-thigh. As a runner, I couldn’t even get myself to the track. It seemed my brain couldn’t make it to workouts either.

Thinking about Thinking

What I was doing just now is called “meta-cognition” or thinking about one’s thinking. If that sounds to you like a weird kind of navel gazing, that’s probably because you have a capable adult brain. Children, and particularly children with learning disabilities, are taught meta-cognition to help them become conscious of their thinking and more aware of their strengths and of strategies useful to their own learning.

People with dementia have newly acquired learning disabilities. When taught to think differently, they can learn to value themselves once again. It’s a new kind of special education for adults.

Discovering Dementia Alliance International

When I discovered the Dementia Alliance International, I found people with dementia who understood that loving, respecting, and treating others with dementia with kindness heals and empowers them.

With DAI, I have a renewed life’s purpose – a reason why I can still be here. I have survived a heart attack and dementia to help others learn how to think differently while having dementia.

It is a discipline. When they achieve it, they will have earned not a puffy, red heart, but a purple one!

Carole Mulliken © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Carole. Become a DAI Sponsor or Associate today.

 

Hello, my name is Phyllis Fehr

On Day 14 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI Board member Phyllis Fehr from Canada. This series is about raising awareness of the many lived experiences of dementia, and highlighting the challenges, as well as the reality that so many people continue to live positive and very productive lives even when diangosed with dementia. Thank you Phyllis for sharing your personal story, and all that you are doing for DAI and with your colleagues in Canada.

I AM STILL ME

Hello. My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia.  At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments.

It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing.

I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.

I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.

But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. It left a disabling affect on my being.

So, I requested my neurologist to refer me to someone else.

For nine months, while I waited, I became with drawn. I did not want to be Involved. That first gerontologist, left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.

The referral took a while, but it was worth my wait. This new doctor, spoke to ME.

She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. I have regained my voice; I have regained my confidence. I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.

When I joined Dementia Alliance International, I became stronger. This is due to the support we have for each other, online support groups and the educational events they offer. Just being able to see others with the same disease process, doing well, gives me hope and makes me want to change things in the world to help all people who are living with dementia. On 30-31 October 2017, I was pleased to represent DAI at the NCD Alliance workshop: “Our Views Our Voices” in Geneva.

When Canada reported on the CRPD, I also attended the United Nations as part of their civil delegation. I work within Canada along with the government relations’ officer from the Alzheimer’s society to push forward human rights for people living with dementia in Canada.

The Alzheimer’s society of Canada has work very hard with their Advisory board of people living with dementia to put together a Canadian Charter of Rights for people living with dementia. I was able to have a look and give feedback to this group.

I would encourage you to have a look and hear the stories of some of the people who were involved.

You can download the Charter of Rights here…

Today I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.

Phyllis Fehr © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Dennis Frost

On Day 13 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Dennis Frost from near Kiama in NSW. Dennis speaks to us candidly, sharing his story of being diagnosed with a younger onset dementia, and the advice given to give up work, and that he may have a only few or maybe up to 20 years to live! It is a common story, as this series is highlighting.

Dennis also talks about the stigma, and the reactions of others, and that the stigma and often hidden social barriers are often worse then the dementia. He also shares how meeting others with dementia has helped him to live more productively and positively with dementia. Thank yo Dennis. for sharing your story with us.

Dementi Alliance International &  Dennis Frost © 2018

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Dennis. Become a DAI Sponsor or Associate today.

Hello, my name is Jeff Borghoff

On Day 12 of the #DAI #WAM2018 #Hello my name is blog series, we feature new DAI member Jeff Borghoff from the US. This series is not only about raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia. Thank you Jeff for allowing us to share your story; everyone at DAI, and the global dementia communtiy is helped and educated through you inviting us into you and your family’s world.

Dementia does not define me

Image source: Jeff Berghoff

Hello, my name if Jeff Borghoff, and with my wife Kim, we reside in Forked River, New Jersey with our three children. I was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 51. During my career, I was a software architect and developer responsible for the design, implementation and project management of technical solutions to help companies solve document-intensive business challenges.

Several years prior to the diagnosis, I experienced changes in my ability to recall information. Although my spouse, Kim was noticing these difficulties at home, the issues were predominant in my professional life where I experienced increasing difficulty with problem solving, managing tasks and providing appropriate supervision to his team.  Therefore, I approached my management team and asked for an alternate position with less responsibility. However, even in this new role, I still found it difficult to manage my duties.

Shortly thereafter, I experienced a serious stomach virus which led to a brief hospitalization. A series of physical neurological symptoms, including facial twitches soon followed which resulted in multiple visits to specialists, and I was still experiencing changes in my memory, but also began to notice differences in my balance and speech. After six months of testing, which included CT, scans, MRIs, spinal taps and neuropsychological evaluations, I was diagnosed with younger-onset Alzheimer’s disease. My father is also living with the disease.

Kim was the first person to receive the news of my diagnosis. She immediately called me and we met to discuss the diagnosis at a nearby park. Although I had been anticipating a serious diagnosis and researching Alzheimer’s disease extensively, I was still stunned and saddened by the news. Together, we went back to meet with the neurologist to discuss next steps, including planning for the future.

Together, we decided to share the diagnosis immediately with our three children. Their reactions ranged from devastation to anger and sorrow. After sharing the diagnosis with others, we have found most to be sympathetic, but often surprised that someone of my age could be diagnosed with younger-onset Alzheimer’s disease.

We began planning for the future by meeting with an attorney and making legal and financial plans, including powers of attorney and applying for Social Security Disability Insurance (SSDI). We also scaled back on our spending and invited my parents to live in a converted two-car garage in-law suite. My parents are also helping to pay off the home mortgage as they prepare for their future cost of living.

After finding the Alzheimer’s Association online, together with my family we created our “Walk To Remember” Walk To End Alzheimer’s team to raise funds for the Alzheimer’s Association.  I also enrolled in the Medic Alert + Alzheimer’s Association Safe Return¼ program and am enrolled in a clinical trial through the Alzheimer’s Association TrialMatch¼.

As a participant in the Alzheimer’s Association 2016 National Early-Stage Advisory Group and Early-Stage Ambassador for the Delaware Valley and Greater NJ chapters, I help raise awareness of younger-onset Alzheimer’s disease and the value of early detection and diagnosis.

“I am not letting this disease define who I am and what I do on a daily basis. I am doing everything I can to raise awareness.”

Copyright 2018: Jeff Borghoff, Living with Alzheimer’s Disease

Help support people such as Jeff. Become a DAI Sponsor or Associate today.

Jeff joined DAI this year,  and is involved in many other organisations and personal things, including managing his own website.

– Alzheimer’s Association National Early-Stage Advisory Group
– Early-Stage Ambassador – Delaware Valley & Greater NJ Early Stage Advisory Council
– Alzheimer’s Congressional Team (ACT) Member

Hello, My name is Myrna Norman

On Day 11 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI member Myrna Norman from Canada. This series is not only raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia.

Thank you Myrna, from all of us at DAI, and from the global dementia communtiy, for inviting us into your world.

Living well with dementia

Image source: Myrna Norman

Hello, My name is Myrna and I am a Person Living Well With Dementia. I was diagnosed with Frontal Temporal Dementia about 10 years ago.  My personality, well some of my thoughts and my abilities to control my anger, had changed.  My memory was in tact but I knew something was very wrong with me.

As with many of us, my general practitioner just told me that my tests had shown Frontol Temporal Dementia and that I should get my affairs in order.  But, he did ask it I had any questions.

WTF was my first thought.

What was Frontol Temporal Dementia?  If I had questions, first I had to have some education as to what to question.

My husband was going to be away for a few weeks and in hindsight that was a good thing.  I got some information, made up an envelope and suggested that he read this on the plane and discuss the issues with our son.   During this time, I went into a deep despair. I wailed, sniffled, screamed, had a visit to self pity, and tried to educate myself.

Several times during my husbands absence, we did speak on the telephone.  My husband shared with loved ones.  Still what happens next.

A family meeting was called, an appointment was made with a lawyer, and arrangements were finalized.  The probability of 8 years and unable to do stairs would require selling our new house and moving.  We moved along as quickly as we could.  It took time and about a year later, after we had sold our house, much of our larger style furniture sold, major downsizing was accomplished.

Finding the Alzheimer’s Society and taking part in a support group helped immensely.

Finding DAI opened so many doors, for instance, meeting others travelling the same journey, education, and more than words can express.

Now I am a DAI member (for years) Facilitator, Purple Angel Ambassador, a participant in the Canada Dementia Strategy held this year in our capital of Ottawa – about 4000 miles from my home.  I met Kate Swaffer.  I met many others who I had read online, talked with online, even laughed and cried with online.

My life with dementia has brought me more joy than sorrow. My name is Myrna and I have dementia.  I am scared but I am happy.

Help support people like Myrna. Become a DAI Sponsor or Associate today.

Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living well with dementia. Thank you Jennifer for allowing DAI to publish this during September to help us raise awareness of dementia, and the fact that so many people can live positively with it.

Jennifer has represented DAI twice this year, giving presentions at the ADI Alzheimer’s University in London, and the photo we have added here was taken last week. See this tweet thread to read how well her presentation was received.

A Glorious Opportunity

Image source: ADI 2018

Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village.

Jennifer worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 12 years ago as she knew things were not right and was diagnosed 9 years ago with Alzheimer’s Dementia. This is her story.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‘mini stroke’ I lost the use of my left arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008, I developed auditory/visual hallucinations hearing children screaming babies crying and was seen conducting conversations with non-present people I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad whom I found on the internet had done work on Iris Murdoch and Harold Wilson so when he told me in 2009 I had Younger Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later Memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. Although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems and we can even reverse some of the decline.

I have started a memory group for folk where I live based on the Japanese model of using the three R’s (Reading Writing and Arithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead.

For me my Dementia is an unexpected gift, a wonderful opportunity and great privilege.

My husband was a great supporter until he died unexpectedly 7 years ago but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can do emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to also help others cope.  My son  set up my website gloriousopportunity.org and makes my educative films which are all available there to anyone.

There are no rainbows without rain!

Jennifer Bute © 2018

Please make a donation to DAI, so we can continue to support members like Jennifer.

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

Please donate to DAI, so we can continue to support members like Maria and her son Rhys.

Hello, my name is David Paulson

Image source: David Paulson

On day six of #DAI’s #WAM2018 series of #Hello my name is blogs, we share one of our USA members, Dr David Paulson’s story of living with dementia.

David Paulson was raised on a traditional Midwestern farm in the U.S. Fascinated by the human language processing, he later earned a doctorate in Spanish Applied Linguistics from the Univ of Illinois.

He was subsequently appointed to teach English Composition at the Univ of Barcelona in Spain, going on to spend time in 14 of the 19 Hispanic countries. He has taught Spanish, French, English as a Second Language, The U.S. Constitution (in English and Spanish) and G.E.D. prep for over 30 years, traveling widely with students from the Univ of California, State University of Minnesota and Concordia College systems. David has recently retired.

Thank you David for sharing your video story for this series to help us raise awareness. David is very actively involved in DAI, is a member of one of our USA peer to peer support groups and will be hosting our new Spanish-language peer-to-peer support group starting October 9, 2018.

David Paulson & Dementia Alliance International © 2018

Special thanks to David for his video, and to Mike Belleville for the final production of it. Together, we are stronger, and importantly, we support each other to have a voice.

Please consider making a donation to DAI, so that DAI can continue to support members like David.

Hello, my name is Julie Hayden

On day five of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Julie for writing your very first blog, especially for this series to help us raise awareness. Julie is very actively involved in DAI, is a member of our UK/AU/EU peer to peer support group, and has offered to host our Living Alone social support group, starting soon. She is also involved in many local and national groups in the UK.

My story: From Nurse to Advocate

By Julie Hayden

Hello, my name is Julie Hayden from Halifax, UK. I was diagnosed last year aged 54. I can’t tell you the type of dementia I have because my doctors haven’t told me yet. Maybe I’m being a little impatient and unreasonable. It’s only been 2 years since my 1stscan showed marked cerebral atrophy.

As a former nurse I find the delay between the disparity between how my brain is and how it should be and achieving full diagnosis totally unacceptable. I can’t help feeling that if a brain tumor was suspected that the medical profession may have moved a little quicker.

My diagnosis was handled very badly. Not by me, but by my neurologist. I was told I had a dementia (though not Alzheimer’s), given a prescription, then sent home to absorb the news alone without even contact details of my local Alzheimer’s Society to discuss my feelings with. Unfortunately my experience is the norm rather than the exception for many of us.

Along with others I have found family and friends rather distant post diagnosis, but then at certain times in life you are presented with an opportunity to assess who are the people in your life that are genuine and who are mere fly-by-nights. Please note that I view this experience as an opportunity rather than a loss in my life. I can’t choose whether I have dementia, but I can choose how I deal with it. I choose positivity, which is why Dementia Alliance International has come to mean so much to me.

For several years prior to my diagnosis I had recognized that my health was on a downward trajectory. Like my GP I put it down to severe depression. Things became so severe that I lost my career as a social worker. Nothing like the caring professions for being not so caring when it comes to their workers. I remained unemployed for years. Now, having this unfortunate label means that the world of paid employment puts me firmly on the scrap heap. However, as a volunteer worker, running my own Young Onset group I have found a new role in life which involves working more than full time hours and doing this quite successfully.

My advice would be don’t let anyone tell you that because you have dementia that you can’t hold down a job, study, be an educator, be creative and be a useful member of society. There are many examples of this within DAI.

You are no less a person than the day before you were told you were living with dementia. I am still a mother, a grandmother and the friends I have in my life now are the best I’ve ever had. I would love to think that I would still be around when my grandson starts his own family, but now quality matters more to me than quantity.

I take my inspiration from my fellow DAI members and hope in some way to play my part in making positive changes, both for those currently with dementia and for those to come.

Julie Hayden © 2018

Please consider making a donation to DAI, so that DAI can continue to support members like Julie.