On Day 19 of DAI’s daily #WAM2018 blog series, we are proud to share Kris McElroy’s story with you. Kris is a very active member of DAI, and his incredible smile and joy, inspite of the challenges he faces, brings a smile to all of us. Kris reminds us to remember what we still have, rather than only to focus on those things we are losing. Thank you Kris, we all continue to be inspired by you.
Kris writes often on his Facebook page, and yesterday shared how he feels about DAI:
“… the voices and smiles from Dementia Alliance International groups, meetings, and chats were in my head like the little engine that could mixed with woody the woodpecker mixed with my favorite song on repeat as I drive everyone else nuts but yet I am perfectly calm, content, and even though there are many challenges and so much that is hard to put words or expression to I am reminded I can continue to move forward as the messages I gain of living well, keep stress low, laugh, I am not alone in what I am experiencing, and focus on not on what I can’t do but what I can do, I can live well.”
It’s not just an older person disease
Hello my name is Kris McElroy. I am a 33 year old native of Maryland, United States living in poverty with multiple disabilities including a progressive neuromuscular disorder, autoimmune disorder, and dementia. I hold a Bachelor of Science in Psychology and a Master of Science in Multidisciplinary Human Services.
Professionally, I have held positions in the education, advocacy, nonprofit, and human services fields. I’m also the author of Perspectives: Discovery through Difference, as well as an artist and writer who has been featured in a variety of sources over the past decade.
I was diagnosed with young onset dementia while finishing up the second year of my doctoral coursework.
The exact dementia diagnosis given on June 21, 2017 was dementia due to other medical condition with behavior disturbance. Similar to my other medical disabilities, the exact etiology is still unknown, while the complexity and overlap of his medical conditions is vast.
While I’ve has been adapting, adjusting, and fighting through challenges, barriers, stigma, and stereotypes related to my disabilities since childhood; life with dementia brought its own unique set of challenges, barriers, and stereotypes.
Barriers such as access to resources and quality life/health care options; and challenges with areas such as spelling, driving, comprehension, memory, multitasking, confusion, and navigating day to day life.
More than a year later since my dementia diagnosis, I have found support through Dementia Alliance International and I continue to live indepently with the help and support of my sister, a few close friends, and multiple assistive devices. I’m also an avid volunteer engaging in his community in advocacy, social change and justice work, and finding a way to live out his life purpose who has good days and bad days determined to live life well and each moment to the fullest.
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.
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.
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.
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
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.
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
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.
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!
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.
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.
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.
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 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
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
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.
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!!
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.