As the number of individuals and families affected by dementia soars, more issues related to it are coming to public attention than ever before. One that has started to emerge in recent years is among the most sensitive: personal stories of spouses and partners of those with advanced levels of the disease forming new relationships while continuing to care devotedly for their loved one.
Barry Petersen, a correspondent for CBS News has spoken openly and movingly on this subject. Author of the 2010 book “Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s,” Petersen has recounted that as his wife’s early-onset dementia progressed, the emotional toll and the loneliness he felt caused him to consider suicide.
Those around him, including his mother-in-law, encouraged him to move forward with his life. A year after his wife moved into a dementia care community, he placed a profile on a dating website. He met a woman who not only became close to him – she befriended and turned into an active care partner alongside Petersen for Jan, who passed away in 2013.
Telling this story publicly was a bold move by Petersen, but having reported on wars and natural disasters, he is no stranger to risk. However, this is not the first time I have heard this kind of story over the years. It is often told in hushed tones by people who are as passionate about their loved one as they have always been and are doing their utmost to offer care, but needing to move on with their own emotional life.
Some, like Petersen, find themselves in a space where they can’t imagine how they can continue in the short-term, let alone picture a future that could be happy again. And as with Petersen, often even their families have encouraged them to find new happiness, knowing it will not compromise their dedication to their loved one.
Age is the greatest risk factor for dementia and never before in human history have so many people lived so long. This means an unprecedented number of couples are dealing with the impact of brain disease that can last for years, sometimes decades. Many of those coping with it now wouldn’t have even been familiar with dementia at the time they and their loved one committed to one another. It’s not something most couples have talked about, let alone considered while making their life plans
In my view, this is an intensely personal subject and only those directly involved in the situation can decide what is best for them. However, what we can do – and I what I believe is our responsibility – is provide an open, non-judgmental and caring ear to people if they wish to talk about how they feel. We can and should offer compassion in the face of a disease that is challenging all of us, and our society, in unimaginable ways.