Welcome to “Living With Alzheimer’s.” I suspect that you or someone you love has Alzheimer’s or some other form of dementia. If so, I hope you will find words of encouragement and support at this site. You may also find it to be a place where you can learn more about the progression of this disease, but that is not my primary objective. There are many other places where you will find volumes of information about that. What you will find here is, I think, quite different. It is a detailed account of the personal experiences my wife and I have had with this disease.
On January 21, 2011, my wife, Kate, was diagnosed with Alzheimer’s. We were not surprised. We had seen the first signs as early as 5 years before in 2006. The day of her diagnosis I began a journal that represents a chronicle of our lives since that time. It has now grown to more than 1000 pages. It includes the news of her diagnosis, our immediate reactions, how we planned to manage the changes that would affect us individually and as a couple, the frustrations we have had, our relationships with friends, our travel and entertainment, descriptions of the changes that have taken place since the diagnosis as well as how we have coped with the disease.
I never intended the journal to be a place for me to express my personal frustrations although they are included. I have tried as best I am able to convey Kate’s own experiences and how she has felt. Kate’s early decision was not to dwell on her illness. She wanted to focus on living as normally as possible for as long as she could. I respect her decision, but that has meant we have talked very little about her Alzheimer’s or how she is feeling. For that reason, most of the things I have written about her feelings are based strictly on my own observations.
I want to make clear up front that Kate and I have been very fortunate on this journey. Many couples have suffered more frustrations and difficulties than we have. I know because I have been an active reader of books by people with dementia or their caregivers. I also read a lot on the online forums or message boards like those offered by the Alzheimer’s Association or Facebook pages like Memory People and Life with Alzheimer’s. Despite the challenges we have faced, I’d like you to know that it has been possible for us to find happiness while living with Alzheimer’s. We have found the road to encompass highs and lows. I have found personal satisfaction in savoring the highs and try to foster them whenever possible.
The most difficult part for me has been watching Kate gradually lose one ability after another. The remarkable thing is that we are still able to enjoy life together. I know that this will not last forever. Indeed, I would say she is now in the first half of Stage 6 of the commonly used 7-Stage model for the progression of Alzheimer’s. (https://www.alzheimers.net/stages-of-alzheimers-disease/) Time is running out.
From the time of her diagnosis, we made a commitment to make the most of our time together. I believe we have been successful. Several things have made that possible. First, neither of us has had any other health issues that could have made our lives more difficult to manage. Second, the progression of Kate’s illness has been very slow. That has given us more time than I originally thought we might have. Third, Kate has not (yet) experienced some of the most troubling symptoms of Alzheimer’s. I am thinking especially of anger and violent behavior. That would have made our experience dramatically different. Fourth, our personalities fit in a way that has made it easier to deal with many of our frustrations. Fifth, Kate’s diagnosis came when I was approaching retirement; therefore, I have been free of job responsibilities. That enabled us to spend more time together. Equally important we have not had to deal with the financial pressures that often accompany this disease.
I don’t want you to think that your own experiences will be or should be like ours. I have come to appreciate the fact that we are all unique individuals before living with this disease. There is no reason to think that we are all the same with respect to our experiences afterwards. Whatever your particular circumstances, I hope that you may find at least a few things of interest on this site, and, perhaps, some of them may be helpful.
Thanks for your visit today,
Richard Creighton
