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Early Onset Dementia Alberta: EODA.CA

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Gwyn and Marty
Gwyn was diagnosed with Early Onset Alzheimer's disease in late 2012 at the age of 54. She is still a young woman but a lot of her is missing.  She is no longer the vibrant, creative, independent woman that I married thirty-seven years ago.  Looking back, our first indication of trouble was five years ago when she suddenly announced that she was quitting her job. She said that everyone was giving her too much information at once and that she could not remember it all when returned to her desk...frustrated. I figured it was just stress; but, by early 2011, our daughter and I took her for assessment. The good doctors, certain that it was anything but dementia, first prescribed estrogen and later prescribed anti-depressants. After exhausting all other possibilities she was diagnosed as having 'probable' Alzheimer's. It has been downhill since. Gwyn has lost her independence and no longer drives.  She cannot even sign her own name. Old routines are difficult to repeat and everything new is an unsolvable puzzle. I was lucky to be able to retire early a year ago (at age 63) so that I can look after my wonderful Gwyn. Our children are independent, so far we are financially stable, but when things get worse, and they will, the stress will likely increase. Other families with loved ones suffering early onset dementia are often not as fortunate. They are not eligible for early retirement. They may still be raising children. Early onset dementia is a serious hardship for too many people. Our needs are different, and we need your help.  Issues:  Diagnosis, medical services and appropriate programs.

UPDATE 17 March 2016

It is almost two years since I posted our story. We have finished our travels. Gwyn needs stability and routine more than ever. She now goes to an adult day program three afternoons a week and enjoys her new friends there.

Gwyn's decline over the past two years is noticeable. Compared to just two years ago, she now needs help to groom and dress herself. Speech is difficult, so describing her needs and concerns is a guessing or show and tell type of game. Going up and down stairs is a slow process. Staying focused on a television show is iffy; even a Calgary Flames hockey game may lose her attention. But she is very aware of what is happening to her and struggles hard to fight depression. At this rate, two years from now I may not be able to care for her at home any more. Placing her in a long term care facility will be the hardest move we will ever have to make.

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