Taking an active part in decisions affecting my later life… A Personal Journey by Lynn Jackson.

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Presentation transcript:

Taking an active part in decisions affecting my later life… A Personal Journey by Lynn Jackson

“Life is either a daring adventure… Or nothing.” Helen Keller

The Aricept Generation I am one of those being helped by new drugs Diagnosed with fronto-temporal dementia An emergency room nurse for 14 years and then…things began to happen

Making Decisions Now… (not waiting until later) Come to terms with my illness Eagerness to learn Discovered others like me “Knowledge is power”

“DASNI Effect” D ementia A dvocacy and S upport N etwork I nternational We are autonomous and competent people We believe that shared knowledge is empowerment We believe our strengths provide a supportive network We are a voice and a helping hand

Set up a support network Family my biggest supporter Friends My Doctor

Teaching others “Knowledge is power” – a slogan that has helped me communicate with family and friends I passed on information to them… Now they are knowledgeable

My biggest fear I will not be able to tell people what I want as my disease progresses

Imaging the options I learnt the lingo… And found out more than I ever wanted to know

Representation Agreement I choose personal representative More than power of attorney Can override my wishes if I become irrational

My representatives know: What kind of nursing home Likes & dislikes Aware of religious beliefs And they have power of attorney

One size does not fit all Everything written down No ‘heroic’ efforts It comes down to this: “If I have developed into a state where I am not able to indicate to you what I do or do not want, then please follow the written instructions.”

Stop and smell the roses

Focus on Strengths Friendships Traveling Connecting Supporting

Maintaining Relationships

In summary… Come to terms with illness Set up a support system Clarify your options Make the necessary decisions Prepare any legal documents Focus on your strengths Set realistic goals Maintain relationships ! Think Positive!!!!

“I am prepared to meet my Maker. Whether my Maker is prepared for the great ordeal of meeting me is another matter” Sir Winston Churchill