Life with dementia is a journey

Life is A Journey.

We have all seen this poster or heard this phrase. The older I get, the more I appreciate this statement. It means different things to each of us, and to me it says that life is unpredictable, exciting and requires patience. Change a few words, and we have a realistic description of dementia – Life with Dementia is a Journey.

In our research, we are learning that the journey begins long before an official diagnosis . In fact, it may be many years between the time an individual begins struggling to recall names or events and when he or she is diagnosed with the disorder. This part of the journey is often wrought with denial and excuses by the individual who has dementia and his or her loved ones.  People do not typically wake up with severe dementia. The disorder typically manifests itself in a slow and easy manner, and it progresses over time.

Once diagnosed, the journey hits a big bump in the road.  Now the worse is confirmed, denial is no longer a viable option, the challenge of the stigma kicks in, and progression may seem to increase. Since there is no cure, the management of the disorder becomes the modus operandi.

I have spoken to a number of caregivers and experts who say – and please note I am paraphrasing and interpreting - that this is the point at which dementia becomes a journey. The realization that one’s dementia will get increasingly worse and the recognition that there is no cure can be demoralizing and exhausting.

The post-diagnosis part of the journey includes practical components such as education about the disorder and progression, identification of available services, legal planning, connecting with others in the dementia community, preparing the house, preparing for transportation, etc.   These are the unfortunate necessities of the journey.

However, there are “positive” aspects of the journey, which should be understood and appreciated. There are those who have dementia who are taking the courageous steps to educate others about their journey.  Some view the diagnosis as a gift of time in which they know they are going to get worse, so they value each and every minute they currently have and take advantage of the “good” time they have remaining.

Working with the best and brightest around our state and country, The Patterson Foundation hopes to help create a model that makes this journey better for those involved.