I need your help!
Next Saturday is the Alzheimer's Orange County Fundraiser Walk at Angel's Stadium in Anaheim, California. I have been asked to spend 3-4 minutes and tell my story about FTD. Wrap your head around that one for a minute. Nearly 10 years of hell summed up in 3 -4 minutes....in front of thousands.
I don't have a problem with Public Speaking. I simply don't know which subject as a caregiver would be the most impactful. So, all you readers who have followed this blog, please leave me a message at the bottom of this post and tell me: if you were in the audience, what is most important for you to hear? Is it a particular story? A concept? A coping mechanism?
More support needed for caregivers..more affordable accomadations for our LO when it's not feasible to keep them at home anymore...for friends and family to know how important it is for them to be involved in our lives and not disappear...you would think their disease is contagious the way people have disappeared...family included...best of luck in your speech...
ReplyDeleteHi Ada, I read your blog and all the challenges that you face. I think what resonates with me the most is how much love you have for Gary, and how that helps you to continue the fight. This disease takes so much from you, and despite this, there is the underlying thread of love. Crazy day, still love. Setbacks, tears, more love. Trust what is in your heart, and you will find the right words.
ReplyDeleteI think your decision to move Gary to a place where he could receive the round-the-clock care he needs was something I could tell you really grappled with - and it is something that I think many people dealing with a relative with Alzheimers have to face.
ReplyDeleteI would want to hear how it changed you. Most of us run away. You ran directly into the storm...
ReplyDeleteEncourage people to talk about this - what would they want, and what would they want for the people they love if they got FTD (or Alzheimer's, el al ). Also talk about the gory details of end of life. The caregiver(s) are faced with so many agonizing decisions - knowing that you are doing what your loved one would want done (both for him/her and yourself) helps a lot.
ReplyDeleteTell them with BEHAVORIAL variant FTD to Expect the Unexpected. And because of that to get educated and find the resources (AFTD, FTD Research centers, FTD Support Group, blogs, etc) to help navigate horrible rollercoaster of a disease. No one can do it alone.
ReplyDeleteTalk to them about coping with the situation, how to stay strong!
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