Category Archives: Dementia

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 Carol Fordyce

On day seven 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 Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.

This is me… Getting on with life!

Carol and Brian Fordyce

Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015. 

I had various problems and issues for over twenty years, which began in my mid thirties.

When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.

I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.

From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.

I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.

But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.

This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.

I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.

Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.

So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.

We have a great life even with DEMENTIA. You can too.

Carol Fordyce © 2018

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

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.

Hello, my name is Howard Gordon

On day two of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of his life and living with dementia. Thank you Howard, for allowing us to share it here, and for and actively being involved in one of our peer to peer support groups, as well as representing DAI as an advocate in the UK.

Hello, my name is Howard Gordon.

I worked in healthcare for nearly 20 years but at the beginning of 2014, I began to notice changes; I was forgetting regular tasks, getting lost in familiar places, getting confused and doing things out of character.

I moved from Acute Medicine to Outpatients in 2015 as I realised I could no longer safely work in a ward based environment but the challenges continued to grow.

Although I had plenty of Dementia training over the years, it wasn’t until I saw a television programme about Chris Roberts and his family that alarm bells rang.

I went to my GP and she did blood tests including checking my Thyroid but when I went back the next week the tests were clear and after cognitive testing it was her opinion that I may have Alzheimer’s.

Three months later I saw a Neurologist and over the next 6 months I had MRI and SPECT scans, more blood tests and four and a half hours of Neuropsycholgical testing and during this time my Fathers cancer came back after 26 years.

In March 2017 came the diagnosis, younger onset Alzheimer’s and Frontotemporal Dementia, two leaflets, some information about research, instructions not to drive and to go home and make my Will and Power of Attorney.

As we walked out of the room there was nobody there and so it would be for about a year.

During 2017, one of my daughters and Grandson nearly died of Carbon Monoxide Poisoning, my Grandson had a cancer scare, my Father passed away and in September I was signed off work and my neurologist said she didn’t know how I was still standing.

I began to engage on Twitter receiving support and encouragement from around the World and by March 2018 I decided that I would have to find my own way through my journey with Dementia and it was through Twitter I found out about the A Good Life with Dementia course run by Damian Murphy of Innovations in Dementia CIC.

Originally, my wife and I only went for one session but it was like a light bulb moment for both of us. In two hours there, we went from Prescribed Disengagement to finally being engaged with life again. With Damians agreement I went along for the rest of the course, even though it meant undertaking a 130 mile round trip to York.

I had begun my blog just as a record of my journey before the course but after it began to expand into support, information and articles about topics relevant to Dementia.

The second important moment was joining Dementia Alliance International (DAI) a fantastic community, more like an extended family with weekly online support groups and regular Webinars.

DAI has given me the courage to challenge poor practice and abuses in healthcare, to speak out about our rights under the United Nations Conventions and to engage in dialogues with organisations.

DAI also gave me the opportunity to attend the Global Disability Summit in July where I was able to challenge Politicians face to face and have now been invited to be part of the Summits Partnership Forum.

Hopefully, I still have a long journey with Dementia in front of me but I hope that with the support of my extended family of DAI and others, I can continue with the work I am doing for some time to come.

I will always be grateful to the course in York and to the support and opportunities that Dementia Alliance International have given me.

Howard Gordon © 2018

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

Howard is very actively involved as an advocate; he is an active member of Dementia Alliance International, and he is also a member of the following organisations or groups:

Alzheimer’s Society 3 Nations Dementia Work Group
Alzheimer’s Society Research Network
WEGO Health Patient Leader
Global Disability Summit 18 Partnership Forum
Dementia Diaries
DEEP UK SHINDIG Group
Disability Rights UK
Royal College of Psychiatrists Memory Service National Accreditation Programme
South Yorkshire Dementia Research Advisory Group
Young Dementia UK Network
Young Onset Dementia & Alzheimer’s (YODA) UK
Research Participant and Steering Group member
Admin “Living with Dementia” Facebook Group
Twitter @howardgordon54

Follow his blog: When the Fog Lifts

Clearly, there is still much life to live, even after a diagnosis of dementia.

Hello, my name is Dick Watson

As part of our World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, on day 1 of #WAM2018, we share Dick Watsons story. Thank you Dick for allowing us to share your story; DAI is proud to have you as a member, and actively involved in one of our peer to peer support groups.

My Life of Living Well with Dementia

By Dick Watson © 2018

Image souce; Dick Watson

To begin, my name is Dick Watson. I live in Vancouver, WA and I am a member of Dementia Alliance International (DAI). I’m 61 years old and was diagnosed with young onset Dementia 6 years ago. The diagnosis was of course hard. Add to that the fact that I have lived with extreme chronic pain from breaking my back twice 27 years ago and having a spinal cord injury as a result. It’s been a long hard road. But I have kept positive through this all.

There is reason to tell about about my back. That is because for about 22 of those years I was on extremely large doses of opiate pain medication. I even had a pain pump with fentanyl going directly to my spinal cord. At removal of the pump I was at morphine equivalent dose of 2000mg/day. I will say this now.

The chronic pain stuff effects the Dementia I think, and not because of the meds but because of pain itself.

Fast forward to 6 years ago when I was diagnosed after complete physical and blood work, and 2 neuropsychological tests a year apart showed Young Onset Dementia.  The Dementia was caused in a major part by 20 years of high dose opiate use, was my Dr’s guess. Worst day of me and my wife’s lives ever. We went home numb from the Dr’s. We were told to go see Alzheimer’s.org so I started learning all I could about this disease, and mine in specific. After a bit of time we did all the legal stuff with moneys, property that was joint now in my wife’s name only. POA’s done, Wills changed, Social Security set. Did all the needed things.

The first 5 years of my dementia went by and I was living very well with my dementia. We traveled, bought art to keep me engaged when needed, saw and spent holidays with family, you know life stuff. We learned to adapt to this dementia thing well. We are very good at adapting. We were told 3-30 years. In reality average is 6-10 years till death. I am now in year 6 and am having many more short term memory issues, as well as more cognitive issues. Well into mid stage dementia. The biggest loss this year was in April. I had been having increased difficulty speaking. Forming words and talking were hard. Then one morning I got up and did my normal routine. My wife got up and I went to say good morning and literally babbling came out. No words, just sounds. We were both taken by surprise. We thought maybe I needed to eat and get my meds in me. No help. So now it’s been 5 months and the only thing I’ve said is to my wife, ” I love you” twice, and that shocked both of us.

Both of us were elated when that happened.

Adapt is a strong word in my house. That’s what we have done. It’s what we do, and damn well I will add. I communicate using my cell phone notes app. I found and downloaded a Text to Speech app to talk when I need to. It’s cumbersome but it works for what I need. I lost the ability to write by hand a long time ago. This makes a communication device a must, I have no other way to communicate.

Needless to say, losing my speech has changed the speed that it takes to have a conversation, much slower. There are a ton of challenges to face. One that gets me is not being able to talk during heated conversations. Or when I get frustrated that I am not making myself understood. I get jumbled up and can’t talk. So I say a bunch of sounds.

Yes this is frustrating as hell. Yes it has effected who will spend time with me. Yes it’s slowed me down even more. Yes I hate it. But we all know Dementia will take what it takes when it takes it and we have no control over it.

However I do have a choice of how to react. I have my moments of darkness and depression. I’m on meds for that. But I have more moments of seeing good. I pay attention much more, don’t always remember what’s said. I am very good at reading expressions and body language which sometimes says more than words and is truthful mostly. I can’t be told I’m running at the mouth. There’s more that this but I can’t remember them.

All through these past 27 years for the most part I have chosen to be positive and active. I must say that my wife has been a huge part in this, and our closeness of a marriage, having 37 years of marriage tighter than most. She is the best care partner there is. Without her I would not make it through this.

I was taught a ton of ways to mentally control some of the pain, and still use some of it.  I also have a bunch of friends, some who have even committed to be with me and my wife till the end of my journey. I don’t drive but friends pick me up to go to coffee, my wife drives a lot as well. We still go out to social events, funny plays, wonderful dinners and go to very cool places. We go to the beach where I can rent a power beach wheelchair. This allowed me to walk the beach with my wife after 15 years of not being able to. All this is helping me hang on longer. My faith is a big part of helping with the emotions and losses. I set up a Dementia support group at my church to help those in the same position we are facing now. The fact that I’m a positive kind of guy also helps, a lot. And besides, the other alternative would be allowing the Dementia to go faster.

So what else is there but to fight the Dementia and live my life to the fullest I can while I can.

Besides, I’m one stubborn SOB and am staying long as I can. Not done yet!!

Dick Watson © 2018

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

“An evening with DAI”

Congratulations to DAI members in the USA, David Paulson, Maria Turner and John Sandblom for being invited to host and speak at this great event. Read the Press release below for information.

Press release

Please join us onMonday, October 1st at 7pm, for an open event hosted Oak Crest Retirement Community:

New Directions in Living Well with Dementia: An Evening with DAI“.

Venue: 2944 Greenwood Acres Dr, DeKalb, IL 60115 USA

Dementia Alliance International (DAI) is a registered 503 (c) (3) charity in the United States, which was launched by eight people with dementia from three countries on January 1, 2015, and now has members in 47 countries.

DAI is an advocacy and support group seeking to represent the 50 million people currently living with dementia, and provides a number of free services and supports for members and their families, and education for the wider community. One person is diagnosed every three seconds with dementia, and it is imperative as a society, we find ways to support people to live more positively with it, and reduce the shame, stigma and discrimination most experience after a diagnosis.

Members of DAI will be speaking at this event, sharing not only their stories of being diagnosed with dementia, but how they have found ways, through DAI, not only to live positively in spite of it, but to empower others to do the same. They will share the power of peer-to-peer support, and highlight some of the outcomes of their global activism for the human rights of all people with dementia.

This is your chance to learn first hand about dementia, from the inside out.

 

People with Dementia have other health issues too…

Christine Thelker, Canada

A member of DAI, Christine Thelker who spoke brilliantly in Chicago recently wrote this for us to share with our members today, as some mbemers, or their partner or amilies are currently experiencing significant non-dementia health issues, some very life threatening.

Christine speaks:

“There are the days and moments that people don’t see, the times one of our Dementia family struggles with the health challenges that crop up or when they have to watch their own loved ones cope with health challenges which leave their health vulnerable.

It is in those times that if the world could see, they would see a family of people from around the globe, stand together to offer support, prayers, love, to wrap those in need in a cloak of love and protection, full of compassion, under standing the special challenges, fears and decisions, never is there a question or point of if one is making the right or wrong choice, only the support and love to help them with whatever their choices are, because we “get it”, this speaks volumes to the very special organization that Dementia Alliance International and it’s people are.

Language / Country/ Time Differences are not barriers, we are all so intimately connected there are no barriers…and some days it takes us all standing together to carry the worry and pain in our hearts…. today please pray for all of our warriors who are so bravely fighting challenges over and above our normal ones.”

Christine Thelker © 2018
You can follow her on inspiring Facebook paged called Chrissy’s Journey to read more of her daily thoughts on facing up to life with dementia as positively as she possibly can.

Dignity & respect still lacking in dementia care

Today, we are sharing a post of a video made by our Chair, Kate Swaffer in 2013, which highlights too well, what almost all speakers with dementia in Chicago shared. It is rather disturbing that little has changed for people newly diagnosed with dementia in the last 10-20 years, especially at the time of diagosis, and that the lack of education of health care professionals in dementia is still so inadequate.

Some of the terms Kate uses, are not what she would say today, as like everyone, even people with dementia can learn, as well as change their minds. But, too often, dignity and respect is still lacking in dementia care, in hospitals and in residential care.

“This video interview was made for the recent South Australian Dementia Forum held on 5 December 2013. At this event, a large number of experts, health care professionals and consumers, including carers and people with dementia attended to listen, learn, and workshop about how to improve the care of people with dementia and mild cognitive impairment in the acute hospital setting. I hope it highlights some of the challenges we currently face as patients, and assists in helping others know how we would like to be treated, in particular with the same education about our disease as any other illness, and with the same respect and dignity as any other patient. Sadly, the experiences I talked about really happened. Opinions are my own.”

Kate Swaffer © 2013

Kris McElroy, 33 years old, shares his story of dementia

This week DAI features a story of one of our younger members, 33 year old Kris McElroy. As an organisation, we love supporting him, and really enjoy his company in our support groups and online meetings and cafes.

Some of us with younger adult children also find it a little confronting, as we cannot imagine how we would feel if it was one of our own adult children. This must also be how older parents feel of their adult children, diagnosed in their 40’s and 50’s.

Thanks to DAI board member and co-founder of ODAG, Phyllis for supporing Kris to share his story with us all. He is being profuled for the Glboal Disability Summit in London soon as well. We lovingly call him ‘Smiley’, as he has a truly radiant smile, and is a joy to be around.

Thanks Kris, from everyone at DAI for sharing your deeply personal story.

Kris McElroy: My Dementia Story

These days it’s easier for me to remember my birthday than my actual age. October 31, 1984. My cognitive abilities have changed. Numbers get to me the most. I can state a date or the time, but I struggle with it’s meaning especially in relationship to other things such as a how much time I have to get somewhere or return a form. Even when I am trying my best and I think I got it, but yet somehow I frequently seem to miss something and I just can’t figure out what it is.

People these days see me walking with my walker, then here me speak and it is assumed I am more likely to have a caregiver next to me than a friend; that I was born this way and am fortunate if I graduated high school; and that I can’t answer my own questions. I know the look and awkwardinteraction all to well of people not knowing how to interact with me. It’s not like I haven’t spent my entire life trying to get people to see my abilities not my disabilities. I was born with a progressive neuromuscular disorder – still the exact type and cause unknown. It effected me in a way that was visible every time I spoke and moved. It is still amazing to me how stigma; stereotypes; and discrimination mixed with lack of awareness, knowledge, understanding, inclusion, and accessibility impact one’s self image and quality of life.

For the longest time I thought for me to be visible, to have a chance, to be seen as human; I had to do my best to be as “normal” as possible. Since, I couldn’t hide my disabilities on the outside, my mind was my gift. My mainframesuper computer that could keep track of everything, my coping mechanism, and also became my hope for the future. Once I had a PhD, someone like me could make it in this world. A PhD would make my disabilities disappear and allow people to actually see my abilities first. It was always on my radar that I won’t have a voice until I earn my PhD. Either a PhD or find a cure for my disabilities. Never once was dementia on my radar. Never once did I think I my mind would change how it is able to function within the world around me. Why would it be, everywhere I looked it was described as the stereotypical old persons disease. I had defeated so many odds and I earned B.S in Psychology, a M.S in Multidisciplinary Human Services. I was in my second year of my Ph.D with a 3.8 average. I had challenges all my life, but I always bounced back or found a way. Until the challenges started becoming more noticeable and it took longer navigate things that were once quick and easy.

I showed signs of what was called “mild to moderate neurocognitivedisorder” in 2015. I don’t remember how old I was, but I still have the report from the testing. Yet, as with most things, the doctor explainsthe results, gives a copy, and then you are sent on the way to continue life.  So, I did. I was used to this. What I wasn’t used to was the changes I experienced in spelling, ability to edit, ability to comprehend things, keep track of things, navigating, and the level of confusion. They said I was just young, it was just stress, and with rest it would go away. My whole world was changing, and the challenges were increasing. I didn’t know what was happening to me, it was frightening, and it was effecting my functioning. So, my neurologist referred me to testing again. I remember my sister talking about her concerns and mentioning sundowners to the neuropsychologistdoing testing again last summer, the doctor laughing, and then the doctor’s apology and deep concern when she shared and explained the resultsin June 2017, the results that the test results show I have dementia.

Since then, it has been a struggle to get people to believe the diagnosis or to know how to help, and how to find my way – a new way of life.When trying to get services it felt like I had to give up my quality of life in order to have help. That was a very stressful and frustrating process. The only other option given was to go into an assisted living. My sister has been the one person there constantly through it all and it has taken a toll on her too. We both just wish there were more resources, options, services, support. Her unconditional love and support a bright light in my everyday new world.

It’s coming up on a year since the diagnosis of dementia. It is still not clear which type of dementia it is or if it is separated or connected to my other medical conditions. Life looks very different from what it used to. People have come and gone, new faces have brought a sense of joy and hope never imagined at the time of being diagnosed. It was hard to know what to do, what to feel, how to move forward. I spent a lot of time trying to “keep up with the joneses”, but each time that made my symptomsworse. So, I traded in pursuit of my PhD for discovering new ways to help others, engage in my community, explore my talents and share my gifts.Alongthe way it became about just finding a way each day to take it step by step and live well each day whatever that may look like at any moment within any day. Quality of life, according to what that means to me. So, I have adjusted and adapted many things, and as challenges arise or shift, adjusting and adapting occurs time and time again.

Still as with other medical conditions and other things across my life, dementia is a part of my story, but it is not all of my story. It is a part of who I am, but it is not all of who I am. My age does not determine whether I have dementia. My age just means at this point on my life journey, I am a 33 year old chef, artist, writer, volunteer, educator, Special Olympian and athlete, with dementia and other health conditions who has good days and bad days determined to live life well and each moment to the fullest.

 

 

 

One couple shares their story of caring

One of DAI’s members, Valerie Schache, from Ballina in New South Wales, Australia and her husband share their story of supporting each other.

Val was her husbands care partner. Then she developed dementia, and he has also had to become hers.

Caring and supporting someone you love with dementia is uniquely challenging even if you are well, but what’s it like when you yourself also need care, and that person now has dementia? We thank Val and Lawrie for sharing their unique and moving story so openly with  us all.

Who cares for whom?

“Val 66 and Lawrie Schache 70 who live near Ballina NSW Australia  have been married 47 years. He is a Vietnam Vet with PTSD and a below right elbow amputee 30 years ago and Val has been his care partner since 2004.   Who cares for whom?’

Already five years ago ‘You are losing the plot’ and ‘Valerisms’ became  ‘You are DEFINITELY losing the plot’ to ‘Valzheimers’ until a diagnosis of dementia Aug 2015 – a shocking relief –  Aricept helped but Val being Val kept searching for answers.

The latest outcomes with a nutritional functional medico supervising precise personalised reCODE protocol has made significant improvements. Not sleep apnea, but  a CPAP machine nightly is overcoming very poor O2 sats – the dementia has damaged the O2 driver at rest. Comprehensive allergy testing has found extremely high  IgE values not related to diet but Val has  stopped wheat and soya. VitB12 injections and quality sleep for the first time in years plus vigorous exercise has significantly reduced hypomania  LBCRS was 8.5/10 now 1.5/10. What was thought to be a ‘mixed’ is now classic Toxic Alzheimers 3 – hardest to treat because every toxic element has to be removed for a person to stay well.   Just this week the frugal husband has said the large sum of money  spent on answers for Val has been worth every cent.  Most disciplined we have both EVER been to stay well. The spin off is Lawrie has beaten prostate cancer and he is cognitively sharper with a similar protocol.    

They have 3 married children and 8 grandchildren and are active grey nomads after retiring – Val as a physiotherapist – acupuncturist farmer and Lawrie a ‘Jack of all trades’ engineer/farmer.”

With Lawrie finding writing very difficult Val interviewed him.  

What’s it like to be Val’s care partner?

“‘Its a pain in the arse! – I want my old Val back – the one who is calm, versatile -not volatile;  sensible and doesn’t argue back- I know it wont happen this side of God’s eternity but it is a daily grief which I manage some days better than other. I’d sooner not be her guardian/  carer but I’m her lover and her ‘ bestment’- I’ve invested 48 years with her and the best at it  – My marriage vows stand, so I’ll stick by her regardless of where she is or how the disease affects her. PS – this month has a calmer Val with increasing intelligence. 

Know the enemy! I’ve learnt as much about the disease as I can and we try to go  all the important appointments together — we are a good team.  I’ve been proactive e.g. got a house cleaner – meant strangers in my castle and ‘WAY out’ of my comfort zone. 

I’m now her personal manager -‘ Have you taken your tablets – critical as she becomes lost and a zombie if she misses.. Got your wallet, phone, keys, your shoes, your choir bag? – Have your remembered all you appointments?  Our phones are synchronised so I know where she is and can initiate a ‘Find my phone alarm’ if she’s not where she said she would be because in  May2015  she didn’t know who she was for eight hours ?TGA.   I want her to be independent – free to visit her friends choir/line dancing church etc. to do her Dementia Advocate work locally nationally and internationally but still safe. – I’m very proud of her actually. 

Money has been a BIG ISSUE – she suddenly becomes an impulse buyer. I organised her own key card with a budget and when that is spent – that’s it! – Thank God that’s improved.

Instead of arguing I retreat to my man-cave. I’ve learnt to say less, hug more and put her  in front of the air-conditioner to cool down.. I’ve learnt to use my kind words, to let her vent without having to ‘FIX IT’ and we always speak respectfully and lovingly to each other. 

Fears for the future with dementia being a terminal disease?

Becoming teary Lawrie continued  ‘She may be institutionalised and wont be fully in my life and I cant bear the thought if she cant remember me, BUT I will always keep visiting as I know who she is — 

In the meantime I help us to suck the marrow out of life – revisiting old passions/places, taking her for drives on the beach,  actively keeping her grounded and away from toxic situations.  Spiritually,  I make sure she watches the Church TV with me and I pray for her constantly including for healing of all aspects in Jesus Name. 

I want my old Val back – but I love her regardless.. that’s what I vowed 47 years ago and she is my best mate… [ we cried and hugged for a long time ] “ 

Val shares her story

“I’ve known for years bad stuff was happening but I kept changing diets and IGNORED them – I sold my ‘complex pain’ acupuncturist physiotherapy sole practice in 2005 after 32 years and then became a ‘silo manager ‘and ‘adventure Grandma’  until the wheels fell of big time in 2015.  I felt vindicated when dementia diagnosed. I’m a REAL dementia expert now over 50 years observation including specialist consultant for a decade in a closed dementia wing and continue to walk the dementia journey from the inside out.

I’ve always stood my ground in the medical world,  having the peer respect of over 25 GP’s and a dozen specialists all genre as pain like dementia is no respecter of persons.  I love science and have a burning need to know. I’ve always given back and I take my dementia work very seriously;  willing to pioneer a future and a hope for an early dementia diagnosis and stalling the epidemic. Cognoscopy’s at 45 to be routine.

I say: Its no scarier than a Type 1 diabetic diagnosis – both terminal BUT – find early treat aggressively – reCODE and follow YOUR daily protocol assiduously and stay well and included.  Confound the ‘experts’ like dozens of us are doing in many countries through DAI Dementia Alliance International enablement with Webinars, Zoom, connect groups and a Health Hub. I’m a research development resource person with DAI –  ‘Knowledge is power’ 

With dementia I have to SLOW down – focus on the one matter at hand -‘concentrate Grandma’ -get enough SLEEP – I learn strategies from a Vietnam Vet counsellor which I share with family and friends to help me stay in control-always  educating people. I have learnt to humble myself and accept the considerable amount of help I need graciously and thankfully.  I need to keep the daily severe PAIN of the Lewy Body type  dementia under control. With the Anterior Temporal Lobe bilateral deficits I have a ‘savant’ type of brain- Ask me a question? -I will tell you the answer- loudly, coarsely and you may hear more than you want to know — That’s cleared out my address book. I still have family saying you don’t have dementia; but if they support Lawrie its OK — Being under the integrated functional nutritional specialist liaising closely with my GP has meant even improvements in my latest MRI and fine ischaemia like widespread chalk is being addressed from multiple prongs. 

Re the future – I have ALL the legalities of a Living Will Guardianship Power of Attorney  in place for us both.. My name is down at the home of my choice and I have respite and permanent accommodation in place if/when needed. But I’m now the best I’ve been in ten years according to bestment, but life has no guarantees for anybody. I have my full drivers licence back with an annual medical review.  We manage life very well.” 

We choose to live exuberantly beyond dementia Val has dementia -but it does NOT have us!