One Year and Counting

By Bud Focht

Hi, my name is Bud and my wife Terry and I have an anniversary coming up this week. I don’t think we will be commemorating it or celebrating it, however.

A year ago this week I first took Terry to see the neurologist.  The CRS (Can’t Remember Shit) she was suffering from during the spring and summer of 2013 had gotten to the point where I knew something major was wrong.

Her primary physician said, because of Terry’s age and the fact that none of her tests showed anything wrong, that it was simply menopausal. I feared that I knew better. I knew it was worse than that.

At the neurologist’s office Terry and I sat in the waiting room and I mentioned to her that the date was October 10 and that it was 10am. “Hey, 10-10 at 10,” I said, trying to lighten the mood. “Too bad you aren’t a ten,” I joked. She laughed. She always laughs at my jokes. Not that all of my jokes are funny.  Far from it. But like they say, ‘love is blind.’ In the Merchant of Venice Shakespeare wrote But love is blind and lovers cannot see the pretty follies that themselves commit. For if they could Cupid would blush to see me thus transformed to a boy.

Not just in Shakespeare, but in reality, love truly is blind. That’s not just a figure of speech.  Research has found that feelings of love suppress the activity of the areas of the brain that control critical thought.

Back to Terry’s brain.

Last October the neurologist began our appointment by asking Terry to remember three things; an apple, a penny and a table. People with normal cognitive function would probably do what I did; picture a table with an apple and a penny on it.

Then the neurologist asked Terry some questions that she got right. What is the biggest city near us? (Philadelphia). What time of year is it? (Fall). What state are we in? (Pennsylvania). What is this I am holding? (a pen).  Great!  But then he asked some questions she got wrong. What is today’s date? Terry guessed “October 11 or 12?” Just 15 minutes after I made the joke about the 10’s.  He asked her what floor we were on. She guessed “Second?” Now in Terry’s defense, we had never been in that building before, but we were on the first floor. We had just walked right into the building from the parking lot and went down the hall to the office. He then asked her what the three things were that he asked her to remember. She could barely remember one of them.

The part of the interview that really got to me was when the neurologist asked Terry to draw a clock, and to make the time 11:30. I never saw the drawing but because of the time she spent trying to draw it combined with his reaction to it, I realized that she did not do very well. I don’t even think she had 12 numbers on it.

The doctor said that “something was definitely going on up there,” but he didn’t want to jump to any conclusions. He ordered an E.E.G. and said we needed to see a neuropsychologist.

From the research I had done, I knew all too well what ‘see a neuropsychologist’ meant.  I refused to accept that. So all winter we went to countless doctors, searching for different things it could be. We had Terry tested for Lyme disease. We had her thyroid checked. Doctors found suspicious nods on her thyroid years ago and took half of it out, but it was normal and the tests last winter were also normal. Terry has a couple of herniated discs so we had MRIs and X-rays taken to see if maybe that was the cause of her CRS.

All the tests came back normal.

SHIT!

So, we finally went to see the neuropsychologists in the spring.  They ran Terry through several days of testing and eventually confirmed our darkest fears.  Early Onset Alzheimer’s Disease.

SHIT, SHIT!!

That was six months ago. Since then the neurologist has had Terry on donepezil and Namenda (and for some reason the Namenda has become harder and harder to get every month. Two months ago the local drug store sent me to one several miles away to get it because they were all out. This month I had to change to a different chain of drug stores and even had to go out of state to find a store that had it in stock). I have been feeding Terry a steady diet of fish (salmon, tuna steak, tuna fish, swordfish steaks), coconut oil (mix it with everything) eggs and donuts (fried foods help counteract the side effects of the donepezil).

So next week we are going back to the neurologist. He will give her another E.E.G. and ask her more questions. I am so tempted to but I will not help Terry cram for the test. I don’t want a false reading. I want to know exactly how she has changed in the last year.

Check that. I don’t WANT to know, but I HAVE to know. The doctor NEEDS to know.

Over this past year, and especially the last six months since the great doctors at the Loyola Clinical Center came up with their conclusion, my relationship with my best friend has changed.

Terry used to be my partner. Even though in her religious beliefs the husband is in charge and the wife is subordinate to him (as the Bible states, I think somewhere in Ephesians), I have never felt that way and I have never acted that way. We were partners, 50-50. I changed as many diapers as Terry did when the kids were young and I was home. I did as many dishes and as much laundry as Terry did. I swept and vacuumed just as much. I cooked as much as Terry did.

We would discuss money matters. Neither one of us would make a major decision concerning anything without discussing it with the other.

But now I am afraid our relationship has changed. I make all of the decisions now. Terry is now more like a ward, and I am more like a caregiver.

Check that. I am not more like a caregiver, I AM a caregiver.

Not exactly my role of choice.

Kids growing up want to be firemen, cowboys, doctors (I did like to play doctor when I was younger but that is a different story).  

Growing up I wanted to be a sports writer. Oscar Madison was my role model.  As I grew older I wanted to be Frank DeFord, Rick Reilly or Jason Stark.

Not a caregiver.

But now that I am a caregiver (I even have a yellow Promise Garden Flower to prove it) I have not only accepted the job of caregiver, I am pleased that I am able to be Terry’s caregiver. There is no one in the world who could be a better one for her.

Terry and I have had 36 great years together, 33 as true partners. That’s nowhere near enough. The first year, after we got married, was very different.  Unfortunately, the last year has been very different too. But for different reasons.

The traditional gift for a one-year anniversary is paper. A clean bill of health is the gift of paper we would receive in a perfect world, in my dreams, but I know that is not going to happen.

I am hoping that the neurologist gives us a sheet of paper saying that Terry is doing great, that there has been limited deterioration to her brain in the last year. That the meds, the fish oil and the coconut oil are working.

That would truly be something worth celebrating.

There is an old anniversary toast. “Remember the yesterdays, plan the tomorrows and celebrate today.”

In the last six months we’ve learned to live for today, and to enjoy each and every today. We try to remember the yesterdays, although Terry isn’t real good at that these days.  But I have her write in and read her memory book every day, which helps.

To tell the truth I haven’t really planned for the tomorrows. Not yet, anyway.

Hopefully the visit to the neurologist coming up next week will help us plan for the tomorrows.

Until next time, wish us a happy one year anniversary. I sure hope it is something worth celebrating.

Bud