Harry is one of my primary mentors, and the prime reason I take the time and energy to write my own blog, and the many hours I spend to share the writing of others.
Below are some excerpts from Harry’s blog on subject of Advocacy during October 2015:
October 2, 2015
If I was magically cured from my Alzheimer’s, what would I do with the remaining portion of my life. I have lived so long in the world of dementia that this is my home. It is a strange place but I learn how to adapt to the many changes and the people in my world do not pretend to be anymore then what they are.
I no longer would have a purpose in life and I wonder if I would lose the gift to help others.
What would happen to my passion and the fight I am fighting.
Would I no longer have a reason to live and just be counting the days.
Maybe that is why I fight so hard for a better quality of life and ways to live with our disease then a cure.
I am past the time of wishing for a cure and just want to fight for the rights of everyone living with dementia.
The day will come when a cure is found and people will adapt to a World Without Dementia and we will know that all the hard work paid off and we won.
Tags: advocacy, purpose,
October 6, 2015
Why can’t someone write a book about the type of dementia that me and millions others are living? I was diagnosed with dementia, probably Alzheimer’s, eleven years ago and don’t consider myself in the later stages of my disease. I am not bed ridden and consider myself to be very active as a human being. I do not need anyone to think for me just help me make the right decisions at times.
Most writers jump on the late stage bandwagon and give their advice on how to treat someone with dementia as though we are all in their late stages.. So many listen to this advice and automatically assume that everyone of us that have dementia is in their late stages.
I could scream when I hear a expert lay out a plan on how to treat me because I am not in the stage that they know. You smother me with protection and I will let you know what you can do with it. Let me live the type of life you are living for as long as I can, that may be 30 years from my diagnosis.
We promote early diagnosis of dementia so we can adjust our life for what lies ahead. That does not mean we are in need of constant care and someone needing to make decisions for us I believe many speak out on the care of someone with dementia after dealing with it for many years. They only remember what it was like toward the end and that is what they write and speak about.
Lets turn our attention to informing care partners how to help us live a productive life and less on how to care for us until we reach the stage when we can no longer care for ourselves. So many with dementia live alone without someone caring for them and could benefit from information on caring for themselves.
Tags: stages, risk, diagnosis, advocacy
October 8, 2015
I am so busy with my wood turning and working on our 2015 FMN Cookbook I don’t have time to think about my Alzheimer’s. Our cookbook is up to 235 pages and still growing. I think keeping busy keeps me from thinking of the buggy boos and things that go bump in the night.
Between the Memory Cafes I attend, webinars I am involved in and the mentor groups I speak at, plus all the advocating I do with anyone that will listen to me, it is no wonder that I have no time to worry about my dementia.
My Thoughts On Dementia is not being upgraded like it should be not because I ran out of thoughts but I find it is more beneficial to sit on my bench and do some reading. I know it will catch up to me because so many people tell me to slow down but
if I slow down,
I will remember that I have Alzheimer’s
and start to cry.
Tags: craft, projects, mentoring, advocacy
October 9, 2015
I get so mad at myself when I start to feel sorry for myself and have a pity me party. When I am in this mood, I am always led to a person that has it much worst then I could ever imagine and get slapped in the face with reality. It keeps me humble and I realize that my problems could be so much worse.
My faith has a way of keeping me on track and doing the work I was asked to do.
I don’t kid myself, I will lose this battle
but so will everyone else living
with or without a diagnosis of dementia.
Tags: spirituality, perspecitve, advocacy
October 17, 2015
Being a advocate and living with dementia, I see both side of this horrible disease. I often speak about what it is like living with dementia and the hardships we face. I write a blog at http://www.mythoughtsondementia.com where I try to explain what my thoughts are at the time so you may have a better understanding what our life is like.
I also get to hear and see what it is like being our care partner. The stories I hear brings me so close to tears I could scream. I hear the stories how someones loved one that has dementia is turning into this nasty hateful person that they don’t recognize or understand. I try to comfort them in telling them to remember it is the disease and not the person. Hate the disease but not the person.
The stories that hurt the most is when I hear that someone is placed in a care facility due to safety or needing additional care and their care partner experiences the lose of the person they love. The reality of dementia hits home and even though the person is still alive, you know they lost them. They have no idea what to do with their time and mourn their loved one. I can only sit with them and share their lost.
Tags: advocacy, grief
October 18, 2015
Somewhere over the rainbow is a World without Dementia
and I am planning on living there.
Someday I will be there but not until I complete what is expected of me in this life.
We made progress in raising dementia awareness but so much more needs to be done,
Now that we caught everyone’s attention
we now need to find ways to live a better life during our journey.
Being dementia friendly is a start but …
We haven’t begun to understand the sadness that is caused by dementia …
Death is not the only reason why we are separated from our loved ones,
the mental disconnect can be sometimes worse.
The emptiness we feel can last a lifetime.
I don’t stop to read about a miracle cure that is on the horizon,
I want to read about a better quality of life for those living with dementia.
Tags: spirituality, relationships, advocacy,
October 20, 2015
It seems like only yesterday but it was years ago
I was carefree without a worry and looked forward to the future.
I wanted to make a difference and change the world.
I never did
until I was diagnosed with dementia.
My priorities changed and I was forced into survival mode and that is when I got a clear picture what really needed to be changed.
This new world I was thrust into was a world nobody knew anything about.
People started to make assumptions what it was like
without ever stepping into it.
They created myths and stigmas that were not true
but in their minds, they were right.
I wanted to stop all these myths
and explain that
my world is not bad,
just different than yours.
We have our hardships
but so do you.
We can live a happy life together
if you realize my world is so much different than your
and I can never return to yours.
Step into my world,
it will not hurt you
if you are kind and try to understand it.
Tags: perspective, advocacy, diagnosis,
October 28, 2015
… Over the 11 years that I have been living with Alzheimer’s,
I was taught the things that you don’t learn in a book.
I lived in the gutter of dementia
and saw firsthand what dementia does to a person.
I take the time to understand dementia
because I am living it.
My ambition is to try and pass what I have learn onto others …
I am only telling you what my life is like
with the understanding that we all have similarities
but we are all different.
I will admit that
I very seldom dwell on the horrors
because I believe that benefits no one.
Tags: advocacy, lived experience
October 29, 2015
November is National Alzheimer’s Awareness Month although it is not the only form of dementia, it is the one I was diagnosed with. I will be doubling my efforts to plead and beg people to join our effort in bringing awareness not only to Alzheimer’s but to every form of dementia.
We need to be United Against Dementia if we are going to make a difference. I will be wearing purple to show I am proud that I not only live with dementia but made a vow to fight it until my last breath.
Education is the key to awareness,
not book learning but
everyday living with this disease.
We need to Stand Up and Speak Out
what living this disease is like
and do away with the myths and stigmas
associated with dementia.
We need to push our governments into making it easier for us living this disease and demand that we need a cure. Let’s make November a month to go down in history.
Tags: advocacy, lived experience,
October 29, 2015
What do we, living with some form of dementia, have to look forward to in the `future? We know because we read the last chapter in the book and this is the stage so many talk about and gives us the notion how much of a burden we will become.
I believe it is so unfair to the people starting out in this to be thrust into that late stage. It was several years after my diagnosis that the real hardship began. In the early days I was asked if I was misdiagnosed or maybe I was faking it for attention. I got the impression they wanted me to be in the late stages and giving up on life.
My early hardships were making people realize that even though I was able to complete a sentence, I was carrying the reality of having a disease with no cure. They could not believe that I wasn’t as bad as someone they knew. People that get an early diagnosis are still fighting the stigmas and myths of dementia. We may not be like your grandmother or grandfather and when they were finally diagnosed.
A new breed of people living with dementia is coming of age.
We believe that we have dementia
but also realize it does not have us.
We see a future and are willing to work toward it.
We are making the changes
that we need to have a better life
letting others talk about how much they know about our disease.
Every other day they will
mention that a miracle cure is
right around the corner and
give us false hope
only to tell us later that it doesn’t work
but they are getting closer.
Getting close will not cure our disease but making our towns and cities dementia friendly and providing affordable care will greatly improve how we live.
Stop talking and start doing.
False hope may make you feel better
for us living this disease, we know better.
Help us or get out of the way,
we intend to see that changes are made.
Tags: advocacy, stages, terminal, stigma, perspective, cure, Rx
October 31, 2015
Can you imagine what it is like to be alone, living with dementia.
Who do you seek for a hug when you get scared of what is happening to you.
So many are lost in this world and no one cares for them.
When I see someone like this,
a piece of me shatters into a thousand pieces
and I am not able to cry for them because I am all cried out.
I stop what I am doing and give them some of my time.
That is what they need the most,
someone to come into their world and sit with them for a while.
You think that you cannot make a difference
but for that one person, you are changing their world,
you are letting them know that someone does care.
Few ever to get to feel the emptiness we feel.
But if you ever get to touch that feeling,
you will be hooked on raising dementia awareness forever.
That is good because
you will be changing lives.
Tags: advocacy, fear, visit, relationships
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