PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Friday, September 11, 2015

Discrimination Two Ways

Through my friend Kate's blog, I discovered the Dementia Alliance International website. Good idea and I believe that it is so important for people with Dementia to have a place to go for support and advocacy.

From Kate's readings, I have come to understand that too soon and sometimes inappropriately, people with Dementia loose their rights as others make decisions for and about them. This includes not only families but also government, hospitals, organizations, conferences, workshops, and other educational experiences which pro-port to support them.

I have had to make Gregory's decisions for a number of years now and it is a very difficult thing to do. He and I have discussed many of the issues while he was still able and I use those as a baseline for decisions I now have to make on his behalf.

At a certain point, the ability to make decisions for oneself must be turned over to a person who will make them for you, hopefully with love, respect, understanding, compassion, etc. If a person is not there for you, health management advocates are available. While the later might not know the person the advocate for, the are bound by fiduciary responsibility.

Never-the-less, this turning point of decision making, balances on a fine line between the "Ws:" when, why, and how, where, and under what circumstances. Questions raise to the top in my mind: When is the right time? Can we do this jointly? What if you protest? Am I sure it is for the best? Does it really matter? etc Can I decide for now but then give it back to you to decide if able? What is the best way to go about this? How will I decide?

I do have one problem with DAI, however. Members can only be people diagnosed with Dementia. I feel like the tables are turned and I am the being discriminated against. I believe that I am one of the "good guys." Don't lock me out! Honestly, I feel resentful.

There is another wave of attention towards women with dementia and women care givers. Even though the prevalence of women needing this support exists at a higher level for women than it does for men,  again I feel left out, ignored, and resentful. 

So I will advocate for Dementia/ Alzheimer's where ever and when ever I can but still am uncomfortable with this male/ female discrimination. Honestly while I have expressed my feelings on these issues, I do know know for sure if I am on target or have all the intellectual date to support my feelings.

Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.

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