Alzheimer's blog

Couple shares story of Alzheimer's journey

By Angela Lunde March 22, 2011

Tom and Julie sat in the doctor's office awaiting his conclusion. Placing his hand on her knee, the doctors looked directly at Julie, age 57, and said, "Now remember that you are who you are regardless of what you have and regardless of what I am going to tell you. I'm fairly confident that you have Alzheimer's."

"Julie, do you remember what we did after we got the news you had Alzheimer's?" asked Tom, her husband.

"I do," said Julie. "After I was told the news, we crawled into the back seat of our car and cried. Later we tracked down the biggest DQ Blizzard we could find."

Julie and Tom sat next to each other in two large leather chairs, reflecting on the events since Julie's diagnosis just 11 months ago. But this was not your typical exchange between a husband and wife. Instead, this conversation took place on a brightly lit stage in front of more than 1,000 people at the Meeting of the Minds Dementia Conference, March 12 in St. Paul, Minn.

The conversation turned to the difficult choices they've already had to make.  Tom spoke about his job change and the reduction in hours he made to be more flexible and physically available to Julie. He shared how they've taken steps to reduce their living expenses, including selling their home. Recently, they made the tough decision to move into a senior independent living facility where they're the youngest.

Alzheimer's has required Julie and Tom, who have been together since high school, to negotiate new ways of communication. They spoke candidly about the challenges that memory loss has placed on their long established patterns of understanding one another. They openly discussed how their once equal partnership has taken an unbalanced and often uncomfortable shift in roles and in power.

Tom brought up a therapy session that the couple had back in August. During that session, Julie said she wanted to deal with the "end game." Tom asked Julie to share what she meant by that.

Julie responded, "When I can no longer take care of you, Tom, or be there for you in the way that you need, I worry. What will life be like for you? I ask that you surround yourself with others who will care for you. If one of those 'others' happens to be a woman, that's OK with me."

Through all of this uncertainly, though, Julie and Tom embrace humor. "As you know," Tom said, "I like to playfully use your loss of memory against you, like trying to convince you that it's been months since we've been physically intimate."

Julie laughed and then replied, "There are just some things we women don't forget!"

As this, the final session of the conference, was coming to an end, Tom concluded with these words:

"This experience has called on us to make a lot of decisions and to get clear about our values. We have put a premium on spending more time together and expanding our network of people who now share this experience with us. We chose to live in a place that is close knit and where there is a deep sense of community. We are making choices that are life giving."

I will never forget this extraordinary couple or the exchange they shared.  For some of us, what we see reflected in Julie and Tom is our own humanness — a raw look into the vulnerable journey of life we all walk through.  I believe Julie and Tom's story is not so much about trying to "get through it," but rather the spirit to live life fully "in it."

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Mar. 22, 2011