First Signs

Several months ago our family got together to celebrate my mother’s birthday. We’re a loud and talkative group. Lots of separate conversations were going on in the room. After a while, I noticed that Aunt Judith was having a loud conversation, but there was no one really listening. When she did engage with someone in the room, she would repeat stories she had already told them.

Now being a southern family, we all love a good story. But this was different. At times, Judith’s conversation partner would almost feel trapped. I was sitting on the couch when Aunt Judith came over and started telling me the story of how her family moved from New York to North Carolina 60 years ago. It’s a very fascinating story. The thing is, I had already heard it twice that night from Aunt Judith.

This time, she stood in front of me with her feet spread apart and her hands on her hips. As long as she stood there like that, on the couch was where I stayed. I adore Aunt Judith and love to hear her stories. I was, however, starting to get a little concerned. Especially when she started using words that I never thought I’d hear her say.

Addressing Concerns Head-On

A couple of days later, I was having lunch with my cousins, Judith’s children. I mentioned that I was a little concerned. They shared that they had started to notice a few changes as well. Judith’s daughter, Karen, said that just last week, she had spent the day with her mom who kept asking what time it was. Karen assumed that her mother had a show she wanted to get home in time to watch. In light of our conversation though, she was beginning to wonder if it might have been something else. Could it be dementia?

Is it Dementia? A Medical Diagnosis

The next time I saw Karen, I asked about her mom. She told me she and her mom had talked. She told her mom that she was concerned about a few things, and they decided together to make an appointment with Aunt Judith’s doctor. After ruling out other possible problems and running several different tests, the doctor told them Judith was in the beginning stages of dementia. It was heartbreaking news.

Practical Issues After a Dementia Diagnosis

In the midst of such an emotional time, the doctor asked Karen some very practical questions. Did her aunt have a healthcare power of attorney and a living will? Karen hadn’t thought about asking those questions before. Because Aunt Judith was just in the beginning stages of dementia, she was still able to make decisions for herself and express her wishes.

Karen and her brother, Tom, started talking to their mom about her wishes – how she wanted to be treated once the dementia had taken away her ability to choose. They discussed legal and financial matters so that Karen and Tom would know where important documents and items were and how to access them once Judith no longer remembered how.

Together, they worked to prepare a healthcare power of attorney that allowed Judith to make decisions for herself as long as she was able. Tom found an easy to understand and complete document called “Five Wishes” that allowed Judith to be very specific about how she wanted to be cared for once she could no longer speak for herself.

How Can I Be Prepared?

To say it was a difficult time would be an understatement. It was a hard thing to face for everyone involved. The diagnosis of dementia is something no one ever wants to hear. The positive side of a not so positive situation was that the diagnosis was made early on, and Judith and her children were able to discuss her wishes. Facing the diagnosis, Judith and her children got help from Judith’s doctor and from resources in the community.

I saw how hard it was for my cousins and their mother to face the diagnosis of dementia while having to set legal and personal affairs in order at the same time. I couldn’t help but ask myself, “Maybe I should go ahead and talk about these issues with my parents?”

“The number of people living with dementia worldwide is currently estimated at 47.5 million and is projected to increase to 75.6 million by 2030. The number of cases of dementia are estimated to more than triple by 2050” (WHO; March 2015). I  encourage others to address the legal, financial, and emotional issues that my cousins and aunt faced – preferably before it becomes an urgent matter . I understand it’s not easy talking about end of life issues. By making it a priority and beginning the conversation now though, we can go forward knowing we have a map to guide us in the future.