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 Power and the Glory of Caregiving

I teach until 6:30 on Wednesday evenings, but try to get home to go to 7:00 Mass and Adoration. Bill likes to attend a class at the church that begins around 7:30. It works well for us—I get a couple of hours of peace and quiet alone, he gets some fellowship with friends, and life is good.

Leaving the office tonight I called home (we still can’t find his cell phone—I should just cancel that number) and he didn’t answer. I called home 5 times and each time it went to voice mail. So I swung by the house on the way to church, hoping he had walked to the church a few blocks away.

My headlights illuminated the driveway and I noticed the Honda was gone.

The Honda—old, decrepit, and we need to sell it. It isn’t registered, isn’t insured, and isn’t inspected. It’s completely illegal.

Did I mention I took his driver’s license away from him after the last time he got lost?

Somehow, somewhere, he’s found a key to that car and gone somewhere.

In the past, I would panic. I’d fret, I’d pace the floor, I’d rant, and possibly call a friend for support. Not this time.

I drove straight to church, hoping to find the Honda in the parking lot. It wasn’t there. So what did I do?

I went to Mass. It was lovely, as it always is on Wednesday nights. Father asked me to lead the singing when the Blessed Sacrament was exposed, and even though I’m still hoarse from an unending upper respiratory infection, I did.

The peace and silence of adoration is indescribable if you aren’t Catholic and haven’t experienced it. The beauty of solitude is healing.  I prayed for Bill’s safe return, and prayed that I would be able to handle whatever came along.

I returned home about 8:00 and the Honda was in the driveway.  I went into the house and saw Bill and calmly asked him where he had gone. He didn’t answer at first—he said he was on his way to church.  I pointed out that he was late for class, and wondered where he was when I came by earlier.  He didn’t seem to know, or didn’t want to answer. Then he said he had taken his computer to Best Buy to get it fixed, because it didn’t work.

What followed could have escalated. He ran out to the car and said he was driving to church because he was tired of me “keeping him a prisoner” in the house. I calmly explained that he got lost (which he denied) and that the car was not registered, inspected or insured, and therefore illegal to drive. He got in the car, and I stood in front of it. Once in the car, he couldn’t find the keys. Looking around the car, he couldn’t find the keys anywhere. He got out, and was getting agitated. I told him I’d take him to church, but he had to go back and get his book.

Once inside I asked him where the computer was. He didn’t know. He found his book, and then ran back to the Honda to look for the computer. It wasn’t there. I suggested he had left it at Best Buy, but he insisted he didn’t. We went back into the house, and I found the computer tucked away on a shelf. Reassured, Bill agreed to go to church, so I took him.

Upon my return home, I looked for the power cord to the computer. It was completely missing. That happens around here. Things seem to disappear into the air. I can’t find clothes, dishes, books, household items.  I did find the Honda key he had used—then lost—and secured it. But the power cord to the computer had vanished, and I’m pretty sure that’s all that’s wrong with the computer—no power.

And that is the problem—no power. No power to think, no power to reason, no power to remember, no power to adhere to a schedule or keep a neat house. His short term memory is down to seconds, not hours, days or months. I know I need to get someone into the house to spend more time with him, to stimulate him intellectually, but I don’t know how to do that. They all cost money. He has few friends of his own—most are my friends. He seems content most days, but I know the long hours alone while I’m at school are causing his mind to wander and facilitating his constant rearranging of things. It’s overwhelming, for sure.

Less than two weeks ago I met a friend for coffee on a Saturday morning after Mass, while Bill was at his men’s faith sharing group. My friend has a counseling background, and she grilled me. She then suggested I start seeing a counselor and get some exercise as a diversion to manage the stress. I agreed, and said I would do so.

A week later I’m at confession. Father George always asks about Bill. As I’m going through my laundry list of sins and stresses he interrupted me, took my hand and said “Sam, you need to get some exercise, and some recreation, or the stress will kill you and you won’t be any good to your students or to Bill.” I agreed.

Monday I saw my doctor, who reviewed my lab work with me, and told me—big surprise here—I needed to start getting some exercise to manage my stress, and find some recreational activity for a break from the stress.

I guess I need to listen. All those people who tell me the caregiver needs to take care of herself are right. I just need to start doing it.

I will, as soon as I find the power cord to Bill’s computer and make sure it’s working properly.

This post originally appeared on The View from Little D blog on Feb. 6, 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.