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Things I Want For My Dementia Care (Friends & Family)
Posted: Thursday, November 12, 2015 6:56 AM
Joined: 7/24/2015
Posts: 3020

Borrowing from Kate Swaffer's ideas of calling her husband her B.U.B., her Back Up Brain (I too need one of those), and someone who can re-Able us as the disease tries to dis-Able us (I very much want and need one of those as well), and her idea that those around us should re-engage us, and re-empower us speaks to me on such and integral level.

Also borrowing from Gary Urban's idea of Dementia Mentors, some who calls us from time to time and checks support and encourage us emotionally.  Someone who maybe sends us tips, tricks, and strategies for living with and dealing with our diagnosis (I very much need that too).

What I Need From Family & Friends

*  I have been diagnosed with a terminal illness, and just like if I had been diagnosed with stage 4 cancer, I need my family and friends to rally around me in emotional support to support me in dealing with my diagnosis. 

*  Maybe we can have a party to celebrate my life and encourage me, like those with cancer often get?

*  It'd be great if you helped me come up with a bucket list, and helped me to do some of those things on that list.  I'd personally give anything to spend some time with a horse again.  To hug their neck, to bury my face in their soft warmth under their mane, to smell their sweet breath just one more time...and just be and talk with them.  And it'd really make my dream to maybe get on the back of a horse one more and take a gentle walk in nature.  I do not need to jump out of a plane!  Or just sit on a dock at a lake and BE a while.

*  I need you to find ways to help re-able me, as the disease tries to dis-able me...rather than joining with the disease against me, further dis-abling me.

*  Maybe call and check in every once and while.

*  Really listen when I tell you how the disease is affecting me.

*  If ways you are approaching me don't work - please change how you approach me.

*  And always, always, always keep seeing me as the person I was before the disease started ravaging me because I am still in here...and you have no idea how you changing your image of me hurts me.

What I Don't Need From Family & Friends

*  You are not the ones going through this, I am.  Now in my final stages of my life, after I have done so much for you through the years, do not take this one thing from me and make it about you...if you are going to do that, then please excuse yourself from my life.   

*  I am not dead yet, please don't grieve for me like I am.  I am still here, and I am still me. 

*  Don't see me as my disease...see me always as I used to be, see the disease instead as sand bags weighing me down 

*  I don't need your pity.  Or that solemn look you sometimes get.  I need your positivity and encouragement.  

*  Don't focus on what I can no longer do...I need you to celebrate and be in the joy of what I can still do despite the ravages of this disease. 

*   Don't ever side with my doctors against me, that is not your role in life and don't make it so.  As always, be on my side.   

*  And please DON'T tell me that you have memory problems too, or sometimes forget where your keys are have no idea. 

* Don't be afraid or shy away from the challenges this disease presents us, act like it is common every day stuff.   

*  Don't point out what I don't know, or ask me things in a way that blank my brain, or be in ways that make me worse.   

*  Don't aggravate me.  I don't ever want to feel that way about you.  

I am sure that the list could go on, but I want to get this finished and posted. 

Much love to my family and friends.