Abandonment

Abandonment. It's a serious issue for us. Every one of us with dementia has experienced it. Most often it's friends; sometimes it's family. It usually happens shortly after divulging my "horrible secret": I have Alzheimer's disease. People are uncomfortable and don't know how to deal with us. They are afraid to hurt or insult us, so they take the easy way out; they disappear from our lives. Although intellectually we know that the problem lies with them and not us, it still hurts. It effects us and impacts the quality of our lives. It's why so many of us work hard to advocate for us.

But every once in a while there appears a friendship as beautiful as this Naples Pier sunset we enjoyed while Taylor was visiting for the holidays. Last night Tiffany and I had a wonderful dinner with Shelley and Tom. Three hours went by in the blink of an eye! They ignore the disease and treat me as they would anyone else. When I screw up, we all laugh it off. Life is simply too damn short to fret the small things. We've only been friends for about six months, but one can easily tell that this is the kind of friendship that lasts.

So be thankful for those who stick with you through good and bad times, and...Stay tuned!

Written by David Kramer. Originally posted at Living Well With Alzheimer's Facebook Page

I Have Dementia - The Toll Is Huge!

The toll is huge!

It is estimated that there are about 400,000 of us in the U.S. with Early or Younger Onset Alzheimer's Disease (EOAD or YOAD) or related dementias. No one knows the real number since many are closeted for a variety of reasons (stigma, embarrassment, job security, lack of adequate disability insurance, fear of loss of friends and family, lack of caregiver support or resources, etc.). I am very fortunate to have the necessary support and resources, and thus feel a responsibility to speak on behalf of those who, for whatever reason, cannot.

So many with EOAD need support and help now! Not in 2025 (per false promise of the National Alzheimer's Project Act) but right now. Where is the promise for those living with the disease? Where is the commitment to those family caregivers who sacrifice their lives for their loved ones? How many people do you know who work hard every day without ever getting a day off...for free? I'm not against funding research (although much of it lacks direction and nearly every drug trial for Alzheimer's fails), but where are the funds for those with years of life with dementia ahead of them?

The cost of dementia care in both dollars and human currency are high! Spouses and children are often ignoring their own lives and wellbeing for their loved ones with dementia.

So yes, the toll is huge. The question is how are we going to pay it?

Written by David Kramer. Originally posted at Living Well With Alzheimer's Facebook Page

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