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Unexpected Anger, Help..
Cat_Lover_58
Posted: Saturday, February 4, 2017 3:06 PM
Joined: 1/12/2017
Posts: 9


A relationship with a great girl didn't even get off the ground. She may not recall me? She may just be afraid to be in a new relationship? I've seen her memory loss get progressively worse in the last 6 months. 

 More so than missing her, I seem to be going though a little heartache, but the anger at the unfairness of this disease really surprises me. I try to focus on what she may be going through. She's not called or texted much in the last few weeks. It's just there...maybe for good.

Anyhow, how do I resolve my anger at the injustice of this disease? I've gone to our local Alzheimer's Support Group and have the 24/7 line to call. I need to order The 36 Hour Day as well. 

Thanks, Cat


Mimi S.
Posted: Sunday, February 5, 2017 8:04 AM
Joined: 11/29/2011
Posts: 5794


Cat Lover, I'm not sure The 36 Hour Day  is what you are looking for. It's a great reference book, but not meant to read cover to cover.  Perhaps I'm Still Alice, by Lisa Genova would work better to understand what she's going through. Ask your librarian to get you a copy.

And I don't know how far your friend's disease has progressed, but I think it's up to you to initiate contact. 

Do also check out the Younger Onset section of the Message Boards 


Cat_Lover_58
Posted: Sunday, February 5, 2017 12:47 PM
Joined: 1/12/2017
Posts: 9


Ok, thank you!
Cat_Lover_58
Posted: Monday, February 6, 2017 9:46 AM
Joined: 1/12/2017
Posts: 9


Hello Again..

I'm having a horrible time with how to go about this relationship. There are many other factors why I should just let things be and not try and be anything other than friends with this girl. I don't want to initiate anything further. She comes in to where I work and says hi. This is going to be enough for me. Guilt..? Absolutely I feel awful. 

I've tried other avenues of support. The pamphlets I received are not geared to those with EO. I do, however, have a wonderful support group here in town once a month. I will continue to attend for now. 

Thanks again Mimi for your response. =)

 

 


The_Sun_Still_Rises
Posted: Monday, February 6, 2017 5:52 PM
Joined: 7/24/2015
Posts: 3030


Yes...very little is geared for either Young Onset (=younger than 65) or Early Onset (=early in disease process)....seems everything geared for older, late stage, end stage folks. 

Might I suggest the book, Dancing With Dementia by Christine Bryden?  It might even make a lovely gift for her.  It written by a lady who was dx'd dementia and she write about the experience of it so wonderfully that it almost make you feel good have it.   But, she also met and married someone After she was diagnosed.  You might really like the book. 

<3


Cat_Lover_58
Posted: Tuesday, February 7, 2017 2:38 PM
Joined: 1/12/2017
Posts: 9


Thank you! Your comment really helped me! =)
alz+
Posted: Monday, April 3, 2017 9:03 AM
Joined: 9/12/2013
Posts: 2903


Cat_lover  - how are you doing? it seems to me people in general are so afraid of the illness they rarely reach out to someone.

Is the woman alone in life? I think befriending her is a wonderful idea, and knowing the illness is so unpredictable you might want to keep your feet on the ground as you get to know each other and what she might need short term.

If things are meant to grow further they will start to unfold in that direction.

somebody cared.  really beautiful.


alz+
Posted: Monday, April 3, 2017 9:11 AM
Joined: 9/12/2013
Posts: 2903


I forgot the post was about anger towards this illness!

My view is that most of what we fear and hate about the illness is not the fault of the illness, but in thinking it can only be worse, there is zero redeeming qualities, and that people become empty vessels.

My real life experience defies these beliefs.  

On NPR (national public radio) there was a show about a woman taking care of her mother who  had ALZ. They argued over everything. She was fed up, drained, ready to quit. Her husband shows up who is an Improv Comedian and he instantly communicates with the Mom by using improv technique, which is "Yes, and..." and never  "No."

The Mom becomes lively around him and laughing, improves some.

http://www.mbird.com/2014/09/step-into-their-world-the-parallel-universes-of-alzheimers-and-improv/

chrisp1653
Posted: Monday, April 3, 2017 11:36 PM
Joined: 1/23/2017
Posts: 665


Mimi, I am in wholehearted agreement about the 36 Hour Day. My Barbara's doctor advised me to get it right after her initial diagnosis of early stage dementia, and it was a soul crusher !

Half way through it I decided to stop. Thank goodness I got it from the library. Perhaps one day in the future I may want to revisit it, but as an first encounter, it is an incredibly depressive read.

Chris


Iris L.
Posted: Wednesday, April 5, 2017 4:33 PM
Joined: 12/15/2011
Posts: 14485


Mimi and Chrisp, you may have both given me the answer to something I have been thinking about lately.  Why are doctors so discouraging to newly diagnosed early stage patients?  If the doctor's concept of early stage is only what is written about in The 36 Hour Day, then they have a skewed view and are unwittingly giving poor advice.  I am not 100% satisfied with this book, but I agree, Still Alice is a better choice to read than The 36 Hour Day for newcomers.


Iris L.




BlueSkies
Posted: Wednesday, April 5, 2017 4:44 PM
Joined: 2/24/2016
Posts: 971


Well crap, I just ordered it.  C'est la vie!
chrisp1653
Posted: Wednesday, April 5, 2017 6:15 PM
Joined: 1/23/2017
Posts: 665


Blue Skies, I don't think you'll regret owning it, since it is a good resource, but for me as a newbie caregiver, it was just too over the top. Here I was with a wife just diagnosed with very early stage dementia, and I'm reading this book filled with worst case scenarios. In addition, it seems to me that the authors take a lot for granted in terms of the availability of friends and family, and even financial resources that the reader will have.

And as for making a purchase you maybe shouldn't have - well, who doesn't do that ?

 

Chris


Mimi S.
Posted: Monday, May 8, 2017 8:26 AM
Joined: 11/29/2011
Posts: 5794


I reiterate: The 36 Hour Day is a great resource for specific problems.
There are several books available written by folks with the disease. My first trip to the library after my diagnosis was Tom DeBasio, I'm Losing My Mind. After that, he wrote a second, with much more help from his wife. All I could think was Wow!!!  Two books written after diagnosis. 

 

On Pluto is another example. Can't remember the name of the author. I do remember cringing when he said he was still driving. Not because of that, since I am also still driving short distances, but because of some of the problems he admitted to.

 

Each book has something to offer. Each writer's experience will be different just because each of us bring something different to the table. And because the disease is different in how it appears in each person. Yes, the major symptoms are similar, which is why this site is valuable, but there are many differences.

 

If you are able, think about attending the National Forum held in DC every spring. To me the main benefit is meeting and speaking with so many with my diagnosis. To others, it's the chance to lobby members of congress .
Living Free
Posted: Tuesday, August 15, 2017 4:57 PM
Joined: 8/15/2017
Posts: 4


Hello, Chris P.  I was listening to that broadcast.  It's always stuck with me--and I believe it was a year-2+ ago?  Anyway, here I am now, caring for/living with my mom whose dementia is rapidly becoming more evident, and I also have notice an inverse relationship between my patience and her dementia.  I try to emulate the guy in that story and 'be in her world' -- at the moment, I'm in new territory, but gratefully, I'm aware of it and am diligently practicing how to best manage both of us.
 
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