This is our story

We had just moved to a new state. We enjoyed where we were living and we loved our new neighbors but had a bit of a rough start.

Not long after we settled into our new home, Dave’s company had been acquired. Initially, they indicated that they would like him to stay and continue his work as a technology business analyst. It was complicated work, understanding data configurations and working with diverse teams to figure out how to make data structures support sales and business operations.

With a new company came new processes and new people to work with. Even though Dave had been doing this type of work for a long time, he was really struggling to become familiar with this new company and their new (to him) way of doing business.

When they let him know that he would no longer be employed, it was almost a relief. It was too much change and had been confusing. Little did we know that this was more a reflection of his brain changing than the differences between the two companies.

It took a long time to figure out the problem

Dave has always been a strong communicator with excellent verbal skills. This helped him in his career and it helped him get jobs easily because he could really impress people during an interview. Also, he was only in his early 50s when he started having symptoms and noticing problems with memory and thinking. Doctors didn’t take his concerns very seriously, especially since he didn’t have really any noticeable health problems.

He pushed his primary care physician about his cognitive challenges, and the doctor reluctantly ordered a brain MRI and referred Dave to a buddy of his who did a form of cognitive assessment in the home. In retrospect, we had no idea whether this person doing the cognitive assessment was qualified, and we should’ve been concerned since he didn’t take insurance.

Neither the MRI nor the cognitive analysis were conclusive. Or so we had been told. we were honestly relieved that it wasn’t something serious. I wish we had pushed for second and third opinions.

Time passed quickly and the symptoms worsened

A couple of years ago, it became very apparent something wasn’t right. Dave was having issues dealing with spatial activities. He used to love mowing the yard, but he started missing huge sections of the lawn. Putting dishes away in the cupboard wasn’t ever a strong suit, but now getting things to fit became a big challenge. He had more or less retired after getting quickly hired for business analyst positions and then losing those very quickly in succession. Navigating new processes, once his strong suit, was just confusing for him.

I had been the breadwinner for a while by then, and my company’s insurance wasn’t equipped to support us through this journey. We had a hard time getting an appointment with a neurologist who had been recommended by the health concierge service offered by my company. That doctor saw Dave five times before telling us that he couldn’t help. He suggested a different, more prestigious university hospital in our area. That hospital also had a very long wait time to see a neurologist.

One full year after starting to try to get in with a neurologist, we were able to see one at the university hospital, and that was only because they had a last-minute cancellation. Once again (for the third time), Dave had a brain MRI, did some MoCA testing, and suffered various cognitive evaluations (he hates these).

This new neurologist ordered several other tests, some of which were shockingly expensive. I refused to schedule anything until I could confirm that the health provider got pre-approval from the insurance company. (Corporate-private health insurance sucks, by the way, as the insurance company ended up rejecting the claims months later, until I pointed out the pre-approvals. It took almost a year to get the health insurance company to pay for part of the claims, even though each item was supposed to have been covered under the plan.)

By the time the results from the tests were available, the diagnosis wasn’t a surprise. The progression of his dementia during those 18 months of seeing the specialists was shockingly quick, and we could see Dave’s struggles with memory, words, and so much more.

And now we live

Learning about the condition was only the beginning. Despite a neurologist who has had no interest in supporting us since after the diagnosis, we have been learning a lot and doing our best to do what we can.

More to come.. take care!

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