In 2009, my husband Ken was diagnosed with Early Onset Alzheimers at the age of 56. Our 3 children are now aged 28, 21 and 19 years old. Prior to diagnosis, Ken was employed as an Engineer within the oil industry and was advised to go on stress leave because he was “missing things” at work. He has never returned to the career that he loved and was highly respected for. He is now living in a memory care unit of a private assisted living facility. It has been a very difficult 5 years for our entire family. When diagnosed, all we were told by the doctor was to get our affairs in order. What did that mean? It has been a very long, tiresome and heartbreaking process. This road we are on will continue to be a very difficult one with very little support for my husband and our family. The incredible stress that comes along with this devastating disease spreads farther than just the person diagnosed. When younger people are afflicted with EOD any government supports that are available are just not suitable. Our age group is of such a different dynamic than what has historically been associated with dementia. Not only have I had to support our family financially & emotionally, I have had the responsibility for my elderly parents (my father passed away last Nov) my mother has since had a heart attack and a mild stroke. Our 2 youngest children are in university and have lived with losing their dad during their teen years. I placed my husband in care this past April as I just could not cope with him at home any longer. He is in a private facility with elderly residents, which was the best care available, however inappropriate. My husband is still physically active, can contribute and have a purposeful life, of which he deserves. Issues: Appropriate programs and care facilities for our young population diagnosed with dementias.
UPDATE (March 2016): Ken has been in hospital since July 2015 as two facility placements have been unable to care for him. He is still #6 on the waiting list for the one facility that is willing to take him. Ken is either in bed or in a chair. Ken is “chair ridden” and suffers bed sores. His ability to walk is declining because he is up walking only when family attends and gets him up even though he is mobile.