PWD Harry Urban re Perspective in October 2015

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Harry is one of my primary mentors, and the prime reason I now take the time and energy to write my own blog, and the many hours I spend to share the writing of others.

ALL of them are excellent, but these are my favorite October 2015 excerpts from Harry Urban’s blog on subject of perspective.

http://mythoughtsondementia.com/blog.html

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, perspective, advocacy

 

October 11, 2015

Someone once came up to me after she was diagnosed with dementia and told me she was scared. I asked her what she was scared of and she told me she didn’t know. Being scared of the unknown is frightening and can play a major role in how you deal with your diagnosis.

We recommend you learn about your disease to help you understand it better but that comes with a warning. Don’t read the last chapter. So many read about the late stages and worry needlessly about it.

Read about how to live with your disease and not what your life may be like many years down the road.

Learn about the ways you can adapt to the changes and live in this new world you were thrust into. Don’t worry, be happy. With the knowledge you get from how to live with your dementia you will be able to face and conquer the hard times ahead.

Tags: perspective, fear, diagnosis,

 

October 11, 2015

When you run away from your diagnosis of dementia
be prepared to never stop running.
You may not be in denial but don’t want to realize the changes that are happening.
I tried running but was unable to continue because my Alzheimer’s caught up with me.
I was forced to face my fears or be swallowed up by my disease.

Facing you fears is much harder then living with dementia because of the unknowns.
We wish things were the way they used to be but they will never be. Running never worked for me and my money is on that it won’t for you either.

 

Once you face your fears
you will find out that they aren’t anywhere as bad as you thought.
You will find the strength to
over come you fears and
find your inner peace.

You will find it necessary to lean on someone during the way, but always remember you are walking toward a better life.

Tags:  perspective, fear, diagnosis, peace

 

October 12, 2015

Just because you are happy
doesn’t mean that you don’t have the same feelings of
loneliness and the
frustrations
knowing you will never be better only to get worse.

This is when you find your strength
to tell your disease that it is through controlling your life …

I see so many of these people and think, if they can do it, what can’t I. The answer is already in your heart and you just need to follow what it is telling you. I get so frustrated when someone tells me that it is easy for me to say because I don’t know what they are going through. After 11 years living with Alzheimer’s I know exactly what you feel and may have faced some fears that are awaiting you.

Find that hidden strength and don’t let your disease control you 

Tags: perspective, control

 

October 13, 2015

It is ok if I wear my my rose colored glasses and pretend everything is perfectly right with the world. I’m allowed to escape Alzheimer’s and even if it is only for a short amount of time, feel good about myself. I don’t need to be penned up …

I have the right to step outside of my world and dance in the tulips.

I may say some crazy things or do things that seem strange to you
but that is because I stepped back into your world and don’t know how to react there.
In my world I get overcome with my fears and become very quite so I just don’t want to be noticed.

In your world,
Alzheimer’s lets me know I don’t belong there
and prevents me from communicating with the people that live there.

It is difficult trying to live in both worlds …

Tags: relationships, escape, perception, communication, perspective

 

October 14, 2015

Sometimes I feel like I only have photographs and memories left …

I can’t remember what I had for dinner last night but
I can tell you where I took Hazel out when we were dating
50 years ago.

I will stay happy with the photographs and memories I made years ago
and live the life I remember.

Tags: perspective, history, symptoms

 

October 18, 2015

Don’t cry for me because I am lost,

I don’t know I’m lost.
I may not know where I am
but I don’t remember where I should be
so I don’t ever think that I may be lost.

I wander
looking for leads
where I am supposed to go
but most times I never find them …

Tags: symptoms, perspective, lost, wandering

 

October 19, 2015

When I wander, I am not lost.
I am exploring.

I am not trying to get somewhere but rather trying to see what is out there.
People wander for many reasons but in my case, it is merely curiosity.
We are shopping and I walk off maybe because I became bored and just want to see what is in the next aisle.

For the person caring for me it can be frightening
but to me I am doing what comes naturally to me
and don’t realize the danger I may be putting myself into.

It is fun to explore

so do you try to prevent me from doing it
or do you find ways to give me my freedom
and let me explore while staying safe?

Tags: risk, symptoms, wandering, perspective

 

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 26, 2015

Keeping your humor and living with dementia seems to be almost impossible
but something that you need to learn.

Trust me that laughing is so much more fun than crying and I can tell you that you will have the opportunity to do both.

It seems to me that when I wear a smile, the load I am carrying doesn’t seem to be more then I can carry.

A sunny disposition will not cure your dementia but it will keep you out of the shadows of dementia.
Staying out of the shadows makes everyone happier, so learn to laugh at yourself and your disease and add years to your life.

Tags:  humor, perspective,

 

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
and
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
but
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 30, 2015

I am often asked the question; how long do you think I have. Of course I have no idea but I tell them what difference does it make,

you have no control on how long you may live
but you can control how you handle your disease
and how you adapt to the changes.

 Don’t worry how long you have
but what you are going to do
with the time you have remaining.

Change the things you can, like your attitude,
and stop worrying about the rest.

The way you are dealing with your diagnosis can add years to your life. You know you will be faced with many changes in the years ahead, so don’t be surprised when they happen. Adapt to them and proceed to enjoy your life.

Tags: perspective, control

 

Above are excerpts with his permission, from Harry’s blog at
http://mythoughtsondementia.com/blog.html

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