The Less He Remembers, the More I Know

On Tuesday we ventured back down to UTSW Medical School in Dallas, specifically to the Memory Clinic, for another evaluation for Bill.  A year ago when we made this trip he drove, and I was holding out hope the problems with his memory and confusion were normal pressure hydrocephalus.

After an MRI, blood tests, neuropsychological testing and a thorough evaluation by Dr. Quiceno, we walked away with nothing much more than “mild to moderate cognitive impairment” and “keep doing what you’re doing and come back in a year.”

Blog posts I’ve written since then will give you an idea of the odyssey we’re on. Thank God for my circle of friends, especially the gang at church, the Denton ACTS community and the Knights of Columbus. More recently the Alzheimer’s Association has proven to be a rock of support.

In the last year I’ve struggled with trying to clear out the detritus of two family estates and reduce the amount of crap we’ve collected over 31 years. Because my “help” is sometimes “anti-help” (thanks to my friend Tammie for describing that phenomenon) the process is slower than I’d like. I still haven’t sold that piano. I’m still trying to figure out the finances and get them under control—something I have always relied on Bill to do. And yes, I’ve wallowed in denial, hoping all the experts were wrong while simultaneously watching my husband slip away from me.

Not that there aren’t moments of great joy and success. He’s still brilliant at reviewing and editing a resume, and so far there’s a 100 percent hire rate of former students who’ve had him re-work their resume. One of them is working for the Alzheimer’s Association.

But sitting in the neuropsychologist’s office on Tuesday, I realized a few things I had suspected. He’s forgetting more than I was willing to admit. And like many dementia patients, he’s pretty good at covering up those memory lapses.

Dr. Ruchinskas, the neuropsychologist who saw us last year, asked Bill questions, and when he couldn’t answer, I filled in. At one point I asked him who was coming to the house frequently to work on cataloging the 1,000 or so classical vinyl LPs that we’ll be selling. He didn’t remember her name. I prompted him. “You know, we see them at church every Sunday. She’s the sacristan at Mass, and afterward we always talk to her husband. “

Still clueless.  So I said her name. “Oh, yes, Adina. Right” he said, as if he really knew who we were talking about.

“Do you know her husband’s name?”

Deer in the headlights stare.

“Karl. His name is Karl.”  Then he seemed to remember.

I then asked “Who came to visit over July 4^th weekend?”

No answer.

“You know, our friends from Houston. Our good friends whom we’ve known since 1988.”

No clue.

“Mary and Tim” I said.

“Oh yeah, right!” he said, but I could tell he didn’t remember back two weeks to July 4^th, and I’m not sure he remembered who Mary and Tim are.

I’m getting better at keeping my composure.  Dr. Ruchinskas and the medical school resident took Bill to the room where the neuropsychological testing would be performed, and then he returned to talk to me.

He asked me about Bill, and then asked me about my plans, my state of health, and what I’m doing to cope with this. Bill is the patient, but this guy is taking care of me right now. It was a great open, candid conversation with a professional committed to curing this disease and, in the absence of that, making sure the caregiver is taken care of.

I can’t tell you what that means to me.

Once I assured him I had all the processes in place, in process or at least in my head, he told me I was doing exactly what I needed to be doing right now. Once again, I was assured by a professional in the field of dementia that I’m doing the best I can, and that’s all I can do.

I have my support group with the Alzheimer’s Association, my therapist (how I found her should be another blog post), my friends at church, an Alzheimer’s Association case manager who calls every now and then just to check in, and a list of things I need to do in my spare time between 2 and 4 in the morning.  And I’m convinced I have the most caring medical team on the planet at UTSW. Dr. Ruchinskas talked to me for 45 minutes, most of which was about me taking care of me.

These people get it. They are doing this because they care about the patients, their families, and they want to see this disease cured.  I didn’t feel like we were just another medical chart. Yes, it’s hard to get an appointment there and you may have to wait months to get in, but the knowledge that we’re working with people doing cutting-edge research into a disease that is the 6^th largest cause of death in the U.S. is comforting.

If they can’t cure my husband of 31 years, if they can’t prevent my generation from getting dementia, I know what they’re learning now will help someone in the future.

I was inspired to enroll in the Dallas Lifespan Brain Study, which seems to be a joint venture between UTD Center for Vital Longevity and UTSW. I’ve completed all the same neuropsychological tests Bill had, and will undergo an MRI and an Amyloid PET Scan. Four years from now we’ll do all that again, and compare the results. I won’t know what any of the test results are, but this study of seemingly healthy “older” adults promises to contribute to research that may eradicate this disease for future generations. 

After what I, and caregivers like me, go through, I figure it’s the least I can do.

This post originally appeared on The View From Little D blog, July 18, 2013.

The Long Goodbye

They haven't used the "A" word yet, but....

Looking back, I should have seen it coming. The inability to put things back where they belonged. Forgetting what I just said to him. Repeating himself. But he'd always been a little ADD, a little forgetful, so I blew it all off. My husband Bill was a lot like the rest of his family--brilliant, intellectual, and a little eccentric.

Then I returned from a mission trip to Guatemala, and after being up since 3:00 a.m. was exhausted upon my return to DFW Airport in early afternoon. I texted him from the runway--no response. I called him and left a message from customs, figuring he was en route and could just pull up to the curb rather than pay to park. No response. So I waited, assuring my travel companions he'd be here and I'd get home just fine.

About 45 minutes after the rest of my group left, he appeared, smiling, thinking nothing was wrong. I was annoyed but happy to finally be in the car on the way home. He'd forgotten his phone (a frequent occurrence) and didn't get my messages. Once in the car I promptly fell asleep before we'd left the airport on our way back to Denton.

When I awoke, I was stunned to be in a congested intersection near the Ikea store in Frisco, a good 26 miles from Denton and definitely not on the route home. 

"Why are we here?" I asked. He couldn't answer. In his defense, there is a lot of construction around DFW Airport's north entrance, but still---I know he's a man, but he usually asks directions. He had no clue how we'd gotten there, and wasn't sure how to get home. Believe me when I say things were tense.

Not long after that he had a routine physical, and I reminded him to tell the doctor about his memory issues. Other things had happened--bills weren't paid, doors were left unlocked, things went missing around the house. He's always handled the finances, I'm the only one working right now, and teaching is more than a full time job.

He came home from the doctor's office with a prescription for an anti-depressant. I immediately emailed her and asked if he'd told her about getting lost on the way home from the airport. He hadn't--because he couldn't remember it. That's when we knew we had a problem, and she referred me to UT Southwestern Medical School Memory Clinic, which takes months to get an appointment.

Future blog posts will discuss the odyssey we're going through, but know that right now we have a non-specific diagnosis of "early-onset dementia." I know in my heart it's Alzheimer's Disease, but they can't say for sure. All the signs are there. And I'm having to come to grips with the fact that my life has just radically changed. And will continue to change. Every day is a 36-Hour Day, already.

Originally posted 10/13/12 at The View From Little D.