Emotions

By Bud Focht

Hi, my name is Bud and I have never been what you would call an emotional guy. Not that I’ve ever been compared to Mr. Spock, the stoic Vulcan from Star Trek fame.

I admit I did get chocked up when I was in high school and Billy Dee Williams (playing NFL Hall of Famer Gale Sayers) said that he loved his dying teammate Brian Piccolo (played by James Caan) and asked in his award acceptance speech that the audience love him (Pic) too in the TV movie Brian’s Song.

And when I was 20 years old and had mono, (unfortunately I don’t think I got the highly contagious “kissing disease” from kissing) for some reason it made me emotional to the point where I would well up when I saw a Disney show about puppies. What a puss I was for a few weeks.

But for not being an emotional guy, since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease I have experienced the full gamut of emotions.  The emotion that I am afraid I am beginning to feel now is fear.

I am terribly afraid of what is in store for us. Terrified.

In the beginning, when we were first told of Terry’s condition, I think the emotion I most felt was surprise. How can my 54-year old wife have a disease that I always associated with older people? Senior citizens.  Great grandparents. People in nursing homes.

The truth is only five percent of all suffers of dementia, particularly Alzheimer’s, are 65 years old or younger. So I guess I was right to be surprised. Being right doesn’t always help.

Frustration was an emotion that I experienced before we knew what was going on with Terry’s brain. When we would take road trips I would always drive and Terry was my navigator. Before GPS, we relied on the old Rand McNally and Terry would read the map and tell me when and where to turn, what exit to take. A year or two ago Terry could not seem to give me the info I needed, and I got frustrated with her, not realizing there was a reason why she could no longer be my Ferdinand Magellan.

Then came sadness. The sorrow and grief I felt when we were told the news of Terry’s diagnosis was like no other. I was fortunate enough to be present with both of my parents when they passed, as well as my father-in-law, so I know what grief is.  And grief is not always associated with death, but with a great loss. With Terry’s diagnosis I went through a period of grief, where I couldn’t even talk about it, to anyone, without getting emotional. I couldn’t read about it, I certainly couldn’t watch the movie The Notebook. It never quite got to the point of depression, but I was experiencing true sorrow for sure.

I think anger came next. Why the hell was this happening to us? I was pissed! I’ve read where caregivers often get angry with God, for allowing this to happen. I don’t think that will ever factor in with me. The only things I ever to say to God (or as Terry calls him, Jehovah), is please and thank you.  Thank you for giving me Terry, thank you for giving me the opportunity to care for her, and please help me in the process.

I also read how caregivers get angry with the person they are caring for. I don’t think that will ever happen with us either. How could I get angry with Terry? It is not like she is doing (or in her case right now, not doing) these things on purpose. I know and love the real Terry, not what the person my wife is becoming because of this shitty disease.

After the anger emotion ran its course (and I stopped kicking the neighbor’s dog) there was a sense of acceptance.  There was nothing we could do about it so we tried to accept it, to learn about it and try to make the most of it.  And I think we succeeded in that area for a while. The meds Terry is taking, Namenda and donepezil, seemed to be working. Of course she was not getting any better, but she seemed to not be getting any worse, either. Which is what I always pray for. I’m not asking for miracles, God, just help her stay the way she is. Don’t let her get worse, not just yet anyway.

And at one point there was even the emotion of joy. We had a terrific summer together, taking trips to visit family, trips to the beach and exotic places. The kids were coming home more often to spend precious time with their beloved mother. We began to appreciate things more, like simple walks in the park, relaxing on the swing in our back yard, listening to music. It was a great summer. One we really got the most out of. 

I felt gratitude for that.  I was thankful for all that we were enjoying, and that we were able to enjoy it.

I’ve read where embarrassment is a common emotion with caregivers. No chance. I don’t care if Terry shits her pants in the middle of the grocery store. “Clean up in aisle six” I could never be embarrassed by Terry, no matter what she did. I have always been so proud of her, even proud of myself for being able to associate myself with such a great person.

Helplessness is an emotion some caregivers experience. Thank God I have not gotten to that point yet.

But now I’m getting scared. After a long period of not seeing any worsening, not seeing any further damage, it looks like Terry is no longer staying the way she is. This god damn disease is progressing, despite the meds.

The other day Terry could not remember how to go to a place that is just a mile from our house, two simple right hand turns.  A place where she has been hundreds of times. A place where she was on Sunday. But on Monday, she could not remember how to go there.

That scared me. I feel it scared her too. I know it upset her. She was bummed the rest of the day.  I wasn’t too happy about it either.

So now I am not only feeling the emotion of fear, but of anticipation. (I wish it was only waiting for the ketchup to come out of the bottle while Carly Simon sang in the background.) But not anticipation in the sense of looking forward positively to something which is going to happen. Just the opposite. Anticipating what might happen next in Terry’s downward spiral, and how soon it will happen.

One thing about Terry that surprised me was the way she handled this from the beginning. Of course she was upset when we were first told of the diagnosis but she was much quicker to accept it than I was. She has maintained a positive outlook and her personality has remained the same.

But I fear that is beginning to change as well. Since the latest episode when she could not remember how to travel such a short distance, she has become somber. She too is fearing that the disease is progressing.

I just wish we could, as Mr. Spock said, “live long and prosper.”

Until next time,

Bud