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the gift of having online friends here - share your story
alz+
Posted: Thursday, August 11, 2016 8:24 AM
Joined: 9/12/2013
Posts: 3608


http://well.blogs.nytimes.com/2016/08/08/dementia-patients-hold-on-to-love-through-shared-stories/?

I wish I could post a live link.

(note: I switched from google to internet explorer because it gives me spell check here, google makes the format at alz.org unrecognizable to me - from a tip by someone on these boards  thank you!)

The article above is about the power of story telling for people with ALZ. I understand it gets very hard to share stories as the illness goes along but for years before that we can share. And when we can no longer, if someone else would share our story we can listen and benefit.

When I took care of my Dad I sometimes told him stories about things we did or that I remembered about him from stories about his youth in the woods. I did not have a set of values about his illness, did not ever believe his lack of speech = he did not exist. I just thought he seemed calm when I spoke to him without  and I enjoyed reminiscing (and hearing myself tell a story!)

Now I believe he was listening. I long for someone to recall things I have done in the past, to remember the Old Me but my kids live far away and my husband and I met around the time I was developing symptoms.

To people living with others, couples, family, friends - it is so easy to slide down in despair and lose what made you love the people you live with.

For those who still live alone, the chance to tell your story in a friendly group gives our lives a reality and depth that gives new meaning to what we are about to go through.

I wish I could be part of a group as described in the article but we are very isolated. In my case my husband and I let go of family members who harass or are indifferent, live in a very rural area, and spend every day together. Our stimulation is limited. I used to be a writer who writes and the loss of storytelling on paper broke my heart.

For those of us who do not live where we could participate in a group like this, these boards are wonderful. We might share in shorter, briefer bits here but it all adds up.

I am concerned I am at a point where my presence here will become  minimal and want to use today to tell you all how much I have benefited from your experiences - the wondrous and the horrific. My husband and I have come through the fire and reimagined our marriage and friendship. We learned how to be there for each other, I learned how to accept his help as he learned how to give it.

Without taking cbd oil I would not be writing here at all. Even with that help the illness progresses. It is sad, breaks my heart but here we are.

I wish people who can read that NY Times article on story telling and how sharing your personal history sets a new course for living with the illness without thinking your spouse is GONE or ALREADY DEAD or the many versions of that they no longer remember you properly...and how the sense of a disappearing partner is such a dark and sick way of living with the illness in a partner ... losing my place here -

Telling about your life together is an EXERCISE as important as physical exercise and all the other Best Practice elements. I think this work is ground breaking.

I lived alone most of my adult life and I would have attended a group like the one described in article alone and told my story. We benefit from really thinking and crafting a story that reflects who we were before illness struck, what our relationships were built on, how we survive the horrible times, how we hope to live our futures.

love you all, we are changing the world view of dementia by bringing the story of our individual lives to each other. There is laughter to come, and lots of love when we learn what that looks like, our lives are meaningful and our stories of survival are an antidote.

 


Iris L.
Posted: Thursday, August 11, 2016 2:01 PM
Joined: 12/15/2011
Posts: 18508


alz+ wrote:

http://well.blogs.nytimes.com/2016/08/08/dementia-patients-hold-on-to-love-through-shared-stories/

I wish I could post a live link.

(note: I switched from google to internet explorer because it gives me spell check here, google makes the format at alz.org unrecognizable to me - from a tip by someone on these boards  thank you!)

 

 
 

 Here is your "hot" link, Alz+.  I can do this on Internet Explorer, but not on Google Chrome.  I use Google Chrome most of the time.

 

You are absolutely right, we do need opportunities to share our life stories.  I was just thinking of that last night.

 

I read the article.  There are a lot of projects for married PWDs, not so much for single PWDs.

 

Iris L. 



BlueSkies
Posted: Thursday, August 11, 2016 9:56 PM
Joined: 2/24/2016
Posts: 1096


alz+, what a beautiful thing you wrote.  You are so inciteful!  You really moved me and I had so much I wanted to write to you and now I can't think of a darn thing.  Oh, I hate it when that happens!  Well, I could be mad at myself, but I am to busy laughing.  Thank God I still have my sense of humor.  Anyway, it was great and I just wanted to tell you so.  PS...I am also taking cbd oil and it helped a lot at first and I also feel I am continuing to decline but at a much slower pace as before.  I was wondering if it really was the cbd oil and now I am more inclined to think it is.
BlueSkies
Posted: Thursday, August 11, 2016 9:57 PM
Joined: 2/24/2016
Posts: 1096


Thanks for the link Iris.  Your the best!!!
TheSteven
Posted: Wednesday, August 17, 2016 2:00 PM
Joined: 10/11/2014
Posts: 167


Hi alz+,

Just a tip here. I like to use OpenOffice Writer to edit my stuff before posting because I can create links and put things in a bigger font and paste it into my browser window. Some readers prefer bigger fonts. Using a real editor I can run spell check and edit. I can also see that my links are links and they become live links that way in my Safari browser on my iMac. Those on Windows system can use Word and copy/paste into Internet Explorer or Microsoft Edge.

Thanks Iris for posting the live link.


llee08032
Posted: Saturday, August 20, 2016 9:11 AM
Joined: 5/20/2014
Posts: 4408


And what a story some of us have! I've met some of the most interesting people on this board. Seen genuine displays of heartfelt empathy and concern for the wellbeing of others. Talk about smart...when I first came here I wondered if smart people are more vulnerable to getting dementia? I think it was about three years ago when I found the board. Back then I thought by now I might be in a nursing home! Everyone here changed my thinking about dementia and shared a wealth of knowledge equal to a university degree. The PWD board is a dementia university in a sense and a cultural sensitivity training rolled into one for those who really care to be schooled in what life is like for PWD. 

Unfortunately, along the way I also found out some persons, persons who are not PWD, do not want to face the truth of what living with dementia is like. That for some reason or another they want to hold on to their preconceived notions that dementia makes us disappear, wipes out our personalities, our life experiences, "the person who we were,"and turns us into violent and vile monsters that need to be locked away. These are the sufferers who propose they suffer in the name of love for us. Who propose they suffer more than the actual PWD. Some of them may even think that dementia has wiped out our feelings and that it has no impact when the suffering is projected on to us. 

This is where the cultural sensitivity training kicks in on our board and in our world. This is where the real learning takes place...when we learn to let go the suffering! Where we learn to live our truth only and separate from the suffering. 

I racked up over a $100, 000 in student loans over my life. The learning and knowledge exchange here cannot be bought or sold. All that is required is that you open your mind and your heart. Open up yourself to all possibilities.


 



llee08032
Posted: Saturday, August 20, 2016 9:25 AM
Joined: 5/20/2014
Posts: 4408


Okay...so I missed the boat and forgot to add to my diatribe, that our stories really, really, really do matter! 
alz+
Posted: Saturday, August 20, 2016 11:42 AM
Joined: 9/12/2013
Posts: 3608


I wish I could compose a post in another format- but as it is I can type at near former levels. so easier to keep using the IE instead of google. thanks for info and Iris for making live link!

Maybe I have lost some self consciousness along this path and told some things I might not have except as fictionalized stories but, for example, when we finally figured out the car fighting ended by me sitting in back seat I knew we have to find our own solutions and that there ARE solutions!

The other day I was in a grocery store and had a flash of a dark shadow following me. This used to happen when I was walking the roads around here before I was diagnosed. I  would see this dark ghost behind me and it felt malevolent.

Well, when it happened recently in the grocery store I stopped and thought through what was happening and discovered what I was seeing was the line between vision and dark peripheral edge, like looking through one of those telescopes to see a view. I turned my head and eyes slowly and sure enough I could make the dark ghost visible and watch it disappear. 

If that happened to someone who was unaware of loss of vision they would be frightened as I once was.

Want to read more but need to get up and move. Love to everyone!


llee08032
Posted: Wednesday, August 24, 2016 8:32 AM
Joined: 5/20/2014
Posts: 4408


Alz+,

Thanks for sharing about the dark flash and feeling like someone is following you. This just happened to me last week and it felt creepy. I saw a shadow like figure off to my side and turned away quickly in the other direction. My first thought was, is it a ghost? Never thought it might be vision related. Now I'll have the courage to look at the shadow! 

Love, back to you, Alz+!