The Young Face of Alzheimer Disease
In February 1974, Paul Penney met the love of his life Agatha Short. They were married on August 6th, 1977 and have two children together. On their 30th wedding anniversary, they decided to celebrate by taking a trip to Ireland with a group of friends. However, on the day of the trip, Agatha realized that she didn't book a business flight for one of her co-workers as part of her last work commitments before her holiday. This day was the first of many unusual days for Paul and Agatha as they tried to figure out the mystery behind them.
Agatha was 50 years old and still working but friends and family begun to notice signs of something not quite right in her activities at work and at home. She began to triple check things or forget daily activities all together. It was June 6th, 2007 when she decided it was time to discontinue work and explore the matter further. In May of 2008, it was revealed that Agatha was in the early stages of Alzheimer’s disease. Like many others who share this journey, her reaction was “they must be wrong, I am only 50 years old.” Agatha’s Mother had dementia and she always feared that history would repeat itself. She initially didn't want to share the news as it took time to adjust to the diagnosis. As well, there was a period of uncertainty regarding how people would react and a fear of being treated differently by others.
Paul began to initially tell people without Agatha’s knowledge as a coping mechanism but later as they began talking more about it and adjusting they both felt it was time to allow others to help. They shared the news with their children, extended family and circle of friends all of which became a source of incredible strength for them both. They began focusing on the positive and felt “it was no use hiding it.”
This couple faced the challenges that Alzheimer’s disease brought to them with courage and incredible strength. They have shared so much in their 34 years of marriage and this journey was one they were determined to embark on together. When asked what gives them strength, Agatha replied “thinking about the cure” and Paul said “support helps give you strength... you gain strength by hitting bottom and knowing you have others there to help you get through the days.”
When they overcame the “why” and “what if’s” they sought to learn more! They equipped themselves with information on the disease and the various stages, coping techniques on how to face various behaviours and a list of all the planning they needed to do for the future. Paul has said many times that one of Agatha’s greatest gifts to him was one of trust and embracing the disease with acceptance. These gifts have made the many scenarios they have encountered so far manageable because she grants him permission to make the necessary decisions for the future. She knows that without question he is going to stand by her for the duration of this disease and will always do what is best for both of them.
Agatha and Paul lead their lives in such a positive manner. They are very inspiring and face life’s activities with such positive attitudes. They watch out for each other and always keep open communication to help work through the more difficult days. As Paul says “and it is not what life throws at you, but how you deal with it and everything happens for a reason.”
They have been blessed to have two children who are always supportive of them, in ways they learned from their amazing parents. Their lives are so full of great friends and support networks to help them along the way. They have been very fortunate to have a group of friends that they call the “DAMN group = Dinner and Music Night.” They often share stories of their fun evenings with kibbles and bits Friday nights, vinyl night where they play music, New York nights and Cuba nights which are always filled with fun and laughter – life’s best medicine. They have traveled to Cuba, Ireland, Panama, concerts in Toronto, Ottawa and other places refusing to allow this disease to stop them enjoying life. They have maintained their lifestyle as best they can with modifications from time to time. Their support network has been their lifeline. The great gifts those people have given this couple has no limits, from surprise books of memories, gift certificates, evenings of fun and respite when spending every day together isn't possible.
Paul and Agatha both speak very freely of the disease and attend support groups with the Alzheimer Society to help them cope. They are never afraid to ask the necessary questions to help them understand the disease and they always embrace the idea of learning as much as possible to equip them with knowledge to make informed decisions or to sometimes understand the possible reason for behaviour. They are open to suggestions and always lend support to others recently diagnosed. Paul’s advice is “give the gift of time ... don’t run away despite how hard it is to watch the person you love fade.” Agatha’s advice is “this is not an older persons disease...it can happen to anyone and our hope is the cure will come soon.”
They often listen to the song by Leeann Womack “I hope you dance” as it helps inspire them to think positively. This couple will be dancing to the end of time in love and devotion! They still have many wonderful years to look forward to and they plan on valuing everyday and making the most of the wonderful memories to come.
They hope that the reader comes to understand that Alzheimer’s is not an old person’s disease. People in their 60’s, 50’s and sometimes in their 40’s have this disease. Also, Alzheimer’s is not something to be ashamed of. It’s like any other disease and we should not be afraid to talk about it openly and continue to ask questions.
Remember Alzheimer’s disease is not easy but you can deal with it one step at a time, one day at a time.
Last Updated: 06/27/17