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the importance of your story
Posted: Saturday, June 27, 2015 11:06 AM
Joined: 9/12/2013
Posts: 3608

Just checking in here to share what I learned this past month.

It has been years since I have felt as good as I do now. This is 5 or 6 years after I first felt there was something wrong and 2 years since I was diagnosed.

At first when I heard "dementia" I panicked. Even though I had taken care of my Dad when he had it and knowing what a wonderful time we had through out his Alzheimer's, I expected this to be a horrible death sentence.

First advice I got was to put my affairs in order so we went to elder care attorney and got wills made and end of life directives etc. I stocked up on disposable diapers and a new pillow and memory foam. It is funny to see those items around the house now. I remember being petrified that when I could no longer drive I would not have access to chocolate donuts. True!

I read up on death and how to die, I wrote long winded (I know) emails to my son and daughter about Life's Big Issues, and so on. I forgot how to smile. I was mad at my husband for everything that had not happened and was never going to happen. I was a jerk except to the dog. I forgot how to smile.

I understand now that period of adjustment was what it was like to find my direction without a map. What seems to have happened was I finally got the hang of it, I learned how to navigate cognitive losses and vision loss too. Even though medical sites claim we lose our ability to learn, I find myself learning every minute of every day. I also find most of what I feared is avoidable, that there is not a pill for ignorance, and that there are people out there teaching that we do not become empty vessels or a creepy burden on society. I looked into mirror and practiced making a happy face and the habit came back.

My husband had no experience with taking care of someone but had one experience as a child with a neighbor who had dementia and who would come over unexpectedly and yell "Yoohoo!" (I hope to be that woman some day!) She was not a problem but a neighborhood character. A lot of information out there is tragically wrong.

My days now are spent according to what I can do and I don't worry when a day comes that I don't know what a can opener looks like. I am in love with my husband again, the dog still is adored. I learned to hear myself laugh again.

The light at the end of the tunnel turned out to be sunny.

What you can share about your own story is valuable and these boards provide us an opportunity that did not exist 15 years ago to help each other by sharing how we are doing, good times and bad. Even that expression I changed to EASY times and HARD times. During the hard times now my husband helps, during easy times he lets me alone to do stuff.

Even a sentence or two can be a profound source of help to others. Your life matters, your story is important.

Love and Courage

Posted: Wednesday, July 15, 2015 10:28 PM
Joined: 12/17/2014
Posts: 1316

Amen, Alz+, so true. All our stories matter.
Posted: Thursday, July 16, 2015 2:52 PM
Joined: 4/7/2015
Posts: 482

Thank you for this post. I am going to read it to my DH tonight. You are always so positive. Energetic thanks.
Karen Rogers
Posted: Thursday, July 16, 2015 9:43 PM
Joined: 5/27/2015
Posts: 4

I was very happy to read your story. It sounds like you and I are in the same boat. I'm smart, although I no longer tutor college math. I just say a lot of 62-year-olds don't know calculus so I'm okay with losing that. I'm forgetting how to spell but there are spellcheckers. I am always surprised by things around me that I can't figure out sometimes. Today while reading a magazine at the MRI office, I tried to touch the photo caption to get it to "open" like I do on my iPad. A few weeks ago, when I saw my sister getting out of her car, I thought I was watching myself getting out of my car. Luckily, these instances are brief, happening only a few times a day or week.

I'm hoping to find someone I can get to know who has early-onset dementia.

Posted: Friday, July 17, 2015 7:08 AM
Joined: 5/20/2014
Posts: 4408

Welcome Karen!

Please join us on the Young Onset board. We look forward to getting to know you.

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