What I‘ve Learned So Far

by Bud Focht

Hi, my name is Bud and since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease in the spring, I have learned a great deal.  I’ve learned a great deal about this horrible disease, I’ve learned a great deal about my Terry and I’ve learned a great deal about myself. I think before this, the last time I learned a great deal was when I was watching Romper Room.

My friends are not sure which is the bigger surprise, that Terry has EOAD or that I am actually learning things.

What a pair we make. Terry, a person with dementia, and me, a demented person.

Terry and I used to play a game while watching television. When we’d see a familiar face I would ask her “What was that guy in? Do you remember where we know him from?”

I’ve learned to try to eliminate the “R” word from my conversations with Terry. Now I simply say “Hey, that’s Paul McCrane, the Philly guy from my favorite television show of all time, the classic Cop Rock.” Then she could tell me if she remembers him or not, without it being a test.

(If you remember Cop Rock, a ‘musical’ police drama about a dozen years ago, well maybe I’m not the only demented person out there.)

I remember (boy I do use the R word a lot) finishing my final exam in the spring of my senior year in college and thinking “No more tests!”  That is my newest philosophy with Terry. No more tests.

I never used to mind taking tests in school, it was getting them back after they were graded that I didn’t enjoy. My parents should have bought stock in red ink.   One of Terry’s ‘brainiac’ sisters got just one B in her entire four years of undergraduate school. I used to tell her, “Me too.” But while all of her other grades were A’s; mine were C’s and D’s.

I now feel like Alex Trebek, giving Terry the answer instead of asking her the question. Speaking of which, we still watch and enjoy Jeopardy almost every night, but unfortunately Terry is no longer very competitive. She still comes up with a correct answer (I mean question, now I’m confused) every once in a while, and it always draws cheers from everyone in the room.

The only correct answer (question) I ever get while watching that show is “What is Aleve?” (afraid you have to be a Jeopardy watcher to appreciate that one.)

Although Terry is still a very upbeat, positive person, I have learned that failing these ‘tests’ can sometimes make her feel sad, even inadequate.  I need to remind her of a lot of things these days but one thing I don’t want to keep reminding her of is her worsening condition. Once we found out about her condition I think I used to test her to try to make myself feel better. Subconsciously I was probably trying to see how much she still can remember. Dreading the day she doesn’t remember me anymore.

I still ask Terry a lot of questions, because if I don’t we have long lulls of silence. Terry was never what you would call a blabber mouth but she is much quieter now. She hardly ever starts a conversation anymore.

But I no longer ask her “What did you do today?” or “Where did you put your purse?” Those questions deal with cognitive data, which is not exactly her strong suit these days. So instead of asking her what she did, I ask her “How was your day? or How are you feeling?” I try to ask ‘open-ended’ questions, so there is no right or wrong answer. I try to deal more with her emotions. The parts of her brain that are still working just fine.

Terry is not much of a decision maker these days either. So instead of asking her what she wants to eat, I simply say “How about some salmon for supper? You can have some tomatoes and cukes from the garden.”

I feed Terry a lot of salmon, tuna (tuna steak and tuna fish) and eggs.

Baby, I love Omega-3 fatty acids. (that sounds too much like an old Sir Mix-A-Lot song)

I also put coconut oil on ALL of her food. Mac and cheese with coconut oil instead of butter is pretty tasty. Putting coconut oil in the pan instead of butter before making the eggs adds a nice flavor.

Maybe I should have bought stock in coconut oil.

Terry also eats at least one donut a day. One of her medicines, donepezil, has been known to have a side effect that is not too pleasant. I believe the medical term is “explosive diarrhea.” We were told that fried foods, like donuts, can help counteract the side effects. So far, so good. Nothing has yet escaped Terry without her permission, especially at warp speed.

I am also going to reintroduce Terry to McDonald’s fries, a staple of my diet some 40 years ago.

I’ve learned that hearing loss is common with older people and can be very troublesome for someone with Alzheimer’s, someone who already has trouble with receiving data and processing it.

Terry, however, is part of the five percent of all Alzheimer’s patients who are under 65 years old. Way under. She’s not an older person with hearing loss. However, she has always been a younger person with hearing loss.  She has had hearing problems ever since I’ve known her.

People in New England have a distinct accent. In Rhode Island (Ro Die Land), for example, they put R’s on the end of words that end in A (an idea is now an I dear), and they put A’s on the end of words that end in R.  So in Rhode Island, a girl named Linda Miller was called Linder Milla.

With Terry’s thick accent, combined with her lack of hearing, our first few conversations were mainly made up of both of us saying “What?”  “Huh?” “Can you repeat that?” Or as they say in New England when they want you to repeat yourself; “Please?” I always used to respond to that with “and thank you.”

We finally got Terry a hearing aid a few years ago when the neighbors mentioned they could hear our TV set (in the dead of winter with the windows closed) and it has worked wonders. Recently we got Terry a second hearing amplifier for the other ear, just for when she is listening to music or watching TV, and it works great. She is happy, I am happy and our neighbors are happy.

For as long as I can remember (sorry for using the R word again) I have been a repeater. When I used to tell the kids something, half the time they responded “I know dad, you told me that yesterday.” And if I have told a joke once, I’ve probably told it too many times.  Now I know why I’ve always been this way. It was my calling. It makes me a better caregiver for Terry.

Like in the Bible, three times for emphasis.

Repetition is also one of the clues that made me get Terry tested back in the fall. I would come home from work and Terry would ask me a question about my day and I would answer it. An hour later she would ask the exact same question. I would answer it the exact same way, hoping it would trigger an “oh yea, we talked about that” response but it rarely did.

Now I constantly have to tell Terry something more than once, but I don’t mind. I was probably going to repeat myself anyway.

I’ve learned that visual aids are also good. Looking at old photographs always brings a smile to Terry’s cute little face. I’ve learned to show Terry recent photographs, so she doesn’t forget the great times we’ve had just this summer. 

I’ve learned that Terry’s memory is like seniority at work. The last one hired is the first to be let go when cut backs have to be made.  EOAD is making some major cutbacks in Terry’s cute little head, and the most recent memories are the first to go.

As Terry’s condition progresses I am sure we will be looking more and more at old scrapbooks, old pictures of when we were dating, pictures from our wedding, pictures of the kids when they were small.

But right now we are concentrating on the present, not the past. In the very near future we are heading to Hawaii for our anniversary. When the doctors told us it was ‘Bucket List” time that was the only thing I could come up with.  Ever since our honeymoon in Honolulu Terry has always said “Wouldn’t it be nice to get back to Hawaii someday?” knowing all too well that we could never afford it. With the generous and unexpected financial help from family and friends we are now making the trip.

Coincidently, the place we are staying in Hawaii is referred to as the Coconut Coast, the east side of the island of Kauai, because of all of the coconut trees.  You can bet Terry will be eating plenty of fresh coconut on that trip.

And I’ll be taking and showing plenty of pictures.

On the 15-hour trip to Kauai I will be doing a lot more reading and hopefully, more learning, about this horrible disease, and how to better care for my Terry.

Until next time, there is a lot more to learn. I plan to be like Mr. Do-Bee.

Bud