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name your journey
Posted: Monday, September 14, 2020 7:19 PM
Joined: 9/12/2013
Posts: 3608

wish I had thought of this 5 years ago...

when people get diagnosed some just get to work cleaning out stuff and doing the financial and legal stuff and handle it. I panicked and worried and struggled.

I was not in a good living situation (the house was great in quiet natural setting, my husband at the time was cold and abandoned me emotionally. so we divorced and I was moved to California).

Living with ALZ is weird, for sure, but since there is still no real cure or help the one thing we can do is make our environments suit our disposition. My life was one boring movie, then I thought "What is name of my movie?"

Eventually it got to thinking up a NAME FOR MY JOURNEY WITH ALZ. I came up with naming my new life MY EXTENDED VACATION. So when I was lying in my hammock this summer before the fires and would start getting edgy I would calm myself by remembering I am on permanent vacation. People do nothing on vacation unless they want to. When I wake up and don't feel like moving, hey I'm on vacation.

When I wake up at 2am hungry I say what the heck, I'm on vacation and get something to eat, go back to sleep when I feel like it. Wake up at 10am? Who cares, used to think I needed some schedule. No, I don't.

Like naming your pet, your boat, your book, whatever. When somebody asks me what I'm up to I say "endless vacation". When the wildfire smoke makes me stay indoors I remind myself how vacations have surprises. I begged last husband to take me on little vacations and he refused. I kept saying to myself, "I never got to go on vacation!" Well, now this is how I see my time. Don't need to get on a plane (can't get an ID yet) or travel, every day is vacation now. No need to beg for it anymore.

I just don't worry as much. The Covid stuff and the nation in high distress is heavy, the isolation of not being able to drive and stuff - well, I'm at a resort on vacation. Go ahead, watch 70 hours of Ray Donovan! Vacation living. 

When I was hospitalized last spring the abdominal scan found a growth on one ovary which could not be examined further cause of virus limiting testing so I am waiting to hear if my doctor wants me to go to urgent care and seek the ultrasound etc now to find out what it is - but you know, what's the difference? I'm on vacation until I go home to the Big Home in the Sky. My phone use is so limited I send my doctor postcards! Why stress myself out trying to speak to a machine? Plus she likes the postcards.

So that is my idea: We might find ways to organize our living situation by naming the journey of ALZ something we like, that inspires us and takes away guilt and pressure. It released more energy and function right away.

Also I began 24 hour fasting Saturdays and that seems to give me energy - and a day off doing dishes and thinking about how and what to eat. Even a small amount of yoga helps too. I do it because it feels good and is fun.

3 years ago I was terrified, frightened and stressed about being abandoned.  I jumped off a cliff by getting divorced, doing much better away from the shunning.

We all die of something, why not make the rest of our story a really good one? Set a tone. Pick a style. Imagine doing this life with ALZ with whatever suits your personality or needs. Might be onto something, might just have worked for me.

what do you think? 

love and courage

Michael Ellenbogen
Posted: Tuesday, September 15, 2020 8:55 AM
Joined: 11/30/2011
Posts: 4322

 Love your attitude and this change was the best thing for you. 

Posted: Wednesday, September 16, 2020 4:39 PM
Joined: 11/22/2019
Posts: 399

I am grateful that you were able to make the changes that are nurturing your life.
Change can be scary, and you did it anyway.   Cool.


Iris L.
Posted: Wednesday, September 16, 2020 9:00 PM
Joined: 12/15/2011
Posts: 18046

Alz+, I like the idea of naming the journey.  I always say that PWDs need to develop a philosophy about what is happening with them.  A vacation journey works well for you, Alz+.  

My journey is of being a Dementia Pioneer.  A pioneer is the first to do things. I always think of us as the first generation of PWDs to make our own decisions and to formulate our own care plans.  As a Pioneer, I can do things in a different way, and it's OKAY!  The main thing is, it's okay.  My life has been not okay for so long.  It's got to be okay now.  I'm a Pioneer!



Michael Ellenbogen
Posted: Thursday, September 17, 2020 6:29 AM
Joined: 11/30/2011
Posts: 4322

 I believe you are right Iris. 

Posted: Thursday, September 17, 2020 7:35 PM
Joined: 11/22/2019
Posts: 399

I like both named journeys in this thread:  Vacation and Pioneer.  Awesome philosophies both!

I am thinking about how to describe my own.

My path winds through unexpected environments.

I feel I must remain open to all possibilities, including that of not perceiving the same reality as others around me.

Space journey and first contact with life out of this solar system, perhaps.

Jo C.
Posted: Friday, September 18, 2020 12:30 AM
Joined: 12/9/2011
Posts: 13113

Hello Dear Alz+.   You asked, "what do you think?"  Well, I think you are amazing, wonderful, and an inspiration.

What a terrific, insightful writing, and well worth keeping to refer to it again and again over time.  You certainly have me thinking and also, smiling.  What a creative, thoughtful person you are.  Thank you. 

Some of us here have known each other for years now, and we have all been making zigs and zags on our personal journeys in this life.   You have traveled a very long way in multiple ways; your light shines very brightly and your intelligence also shines through in your writing.

You know, Alz+, just as an aside, this writing is so good that I think it deserves publishing.  Really.  I would love to see it in print for a world of others to see; it would inspire so many.

It would even make a super submission for the, "Chicken Soup For The Soul," books.  Your writing is just the correct length for them and if one has their writing published, they pay $200; they also send ten copies of the book to the author.   They pretty much have loved topics related to Alzheimer's Disease.  One can choose to not have their name used as author or can use whatever term they wish to cite for their writing.

As a, just in case you would want to do this; and you may well not want to, here is a link,  it tells what titles they are going to publish under, and the end dates for submissions:  

If you feel you would like to submit, it is easy and all done on the computer; easy instructions are given, and $200 isn't bad.   No pressure, and just a passing thought. 

Thank you again for your writing, a joy to read and it really is a treasure as well as a keeper.

With a big hug and warmest of thoughts being sent your way, from one former U.P. gal now a Californian, to another U.P. gal who has also made that California transition.


Iris L.
Posted: Friday, September 18, 2020 12:56 AM
Joined: 12/15/2011
Posts: 18046

Yes, Alz+, your words need to be read by more.  You are so insightful!  


Posted: Friday, September 18, 2020 6:33 PM
Joined: 11/22/2019
Posts: 399

I agree with Jo C. 

And I would feel as if I personally am being heard by people when they would read your words.

If it fits in with your vacation plans, of course. : )

Posted: Friday, September 18, 2020 6:55 PM
Joined: 2/16/2017
Posts: 1709

Dear Alz,

This is a outstanding idea, your words are very good and comforting to all. Hugs Zetta 

Gig Harbor
Posted: Saturday, September 19, 2020 10:56 AM
Joined: 3/10/2016
Posts: 1050

I absolutely love this. It works for caregivers too. My new motto “ I am on vacation!”
Posted: Wednesday, September 30, 2020 1:52 PM
Joined: 2/4/2019
Posts: 6


Wow!  Thank you for sharing your new attitude about the situation we all find ourself in.  I'm almost two years after diagnoses and nearing the end of getting my affairs in order.  I too have been thinking about what's next... 

For me, I enjoy my mornings walking my dog and drinking coffee and being with my family! I will work on naming my journey.

Thank you for your post.  I am certain it will help a lot of us.

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Jo C.
Posted: Wednesday, September 30, 2020 2:16 PM
Joined: 12/9/2011
Posts: 13113

Hello Brad; I just wanted to stop in and tell you how much I enjoyed the photos.  The little dogs are absoutely adorable, and the children beautiful.  I wanted to hug all of them. 

It seems you have a lot of love in your live, that is  priceless.

Thank you for sharing,


Posted: Thursday, October 8, 2020 7:42 AM
Joined: 10/8/2020
Posts: 12

I was diagnosed with EOA earlier this year.  A few months later my pap smear came back abnormal, and shortly thereafter I was diagnosed with endometrial cancer.  I had a radical hysterectomy and am now cancer-free.  It's sort of funny though, because after I was diagnosed with EOA, I prayed for just one day that I wouldn't think about having EOA.  Then BANG I have cancer and suddenly I'm thinking about cancer every day, instead of EOA.  Be careful what you wish for, right?  Anyway that process made me open my eyes.  Although I'm doing my best to plan for the future, I am no longer focusing on my disease.  I am so much happier living my days without the constant worry and anxiety about having EOA.  I love your idea of BEING ON VACATION.  I'm going to use that when I find myself dwelling on things I can't change.  

By the way, I have started a group on Facebook called MEMORY WARRIORS.  MEMORY WARRIORS is a support group on Facebook for people with EOA to support each other  It's a place to ask and answer questions, to help one another, to share experiences, frustrations, and feelings.  A place to share your story.  Please check it out.  There are so many people with EOA and so few support groups for us.  

Iris L.
Posted: Thursday, October 8, 2020 2:28 PM
Joined: 12/15/2011
Posts: 18046

Welcome Andree.  I hope you and all new members continue to post here.