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

Relationships

By Bud Focht

Hi, my name is Bud and I have been told that my great relationship with my wife Terry is going to change, as her Early Onset Alzheimer’s Disease progresses toward the latter stages.

Terry and I have always had a great relationship. Right now it is as good as ever, maybe even better than ever, because I have learned to be more patient. I’ve learned to not sweat the small stuff since Terry’s diagnosis.

Ever since Terry and I have been married I have had 70-hour work weeks that start at the end of August and run till the end of May. When asked how we’ve stayed so happy together all these years we would always tell people my work schedule is why we never fight, because we don’t see each other enough to argue.

Some guys I know married “trophy wives”, Homecoming Queens. Some are now divorced. Some are now unhappy, now that the “trophy” is 50+ years old and doesn’t shine as much as it used to.  I married a cute little tennis player who won a couple dozen trophies.  Terry’s appeal to me was 50 percent personality, 50 percent cuteness.  I’m lucky. She’s still cute and still has that great personality.  I am dreading when that personality changes due to this horrible disease.

Terry weighed 102 pounds when we got married. She now weighs in at 103.  Every day I thank her for being in her mid-50s and not having a fat ass.  There aren’t many 55-year olds who you can say that about. Me, I am almost 40 pounds over my college playing weight. As far as fat asses go, I was born with one and never lost it. About 15 years ago I had a mid-life crisis, got motivated, and lost 30 pounds, but I turned around and found it.

I remember 26 years ago we were attending one of Terry’s sister’s wedding rehearsal dinner and the groom’s mother asked that we go around the table giving our thoughts on marriage. There were a lot of “You have to work at it” and “You get out of it what you put into it” remarks. I remember thinking, and then saying “Hey, we’ve been married almost six years now and I haven’t put any work into it. I know what work is and this is nothing like work. Terry and I are very happy just being together.”

And it was true. It was never like work, and we never had to work at it. We’ve always taken responsibility for our own happiness. We try to please each other but it is up to you to be happy. We’ve always tried to make good on our words. When we say we will do something, we do it. We admit our mistakes without making excuses. We have always listened to each other. We have always shown affection, with hugs, a hand on the shoulder or gentle slaps on the rear (my favorite). We’ve always been truthful with each other. We’ve given the other person some space, for me to go to the ball games or occasionally to the bar with my friends. Terry goes to her Bible studies. And we’ve always encouraged each other and supported each other’s ideas.

Granted, there has been a bit of work involved lately, but Terry and I still have a great relationship. Although if you ever listened to us talk you would think it was just the opposite. A running gag in our house is the backhanded compliment. You know, saying something where you are not sure if it is compliment or an insult. “Hey, you don’t sweat much for a fat girl.” Things like that.  I’ll tell Terry “I love you” and she’ll say “Get over it.”  Or she’ll say to me “I love you” and I’ll reply “Yea, I get that a lot. Whatever.”  We say much worse but always in jest. Our neighbors must think we hate each other, the way we talk to each other, but just the opposite is true. We truly enjoy each other’s company and are always laughing.

There have been many relationships portrayed on television over the years, where true love certainly exists but it lies beneath a layer of sarcasm and arguing. Archie and Edith Bunker from All in the Family, Frank and Marie Barone from Everybody Loves Raymond, George Burns and Gracie Allen, Howard and Marion Cunningham from Happy Days.

My all-time favorite couple from TV land, however, was one of the first working class televised couples. They even made a very successful cartoon version of them years later set in prehistoric times, Fred and Wilma Flintstone. Of course I am talking about Ralph and Alice Kramden.  The Honeymooners.

Ralph’s frustration with his lot in life often caused him to be short tempered and issue hollow threats (“Bam, zoom, to the moon”), when he was not trying to come up with get-rich-quick schemes. But beneath that bus-driving exterior was a soft-hearted man who loved his wife.  “Alice, you’re the greatest!”

And so is the relationship Terry and I have. The greatest! Just the way it is, and always has been. I assumed it always would be.

If and when our relationship changes, I think that will be the cruelest part of this disease. So far we’ve been lucky. We are still in the mild stage of Alzheimer’s. Terry’s cognitive decline (memory loss, difficulty with information processing) is the biggest challenge we’ve had to face so far. Compared to what is in store, it has been easy, or as Ralph Kramden would say, “A mere bag of shells.”

The day a change in our relationship occurs will not be easy for me to accept. What is the opposite of a bag of shells? A bag of shit?

Words from our wedding song hopefully will be of some help if and when that day occurs.

Like a rose under the April snow

I was always certain love would grow

Love, ageless and evergreen

Seldom seen by two

Two lights that shine as one

Morning glory and midnight sun

Time we’ve learned to sail above

Time won’t change the meaning of

One love, ageless and ever, evergreen.

I always thought our relationship would be forever green. But now they tell me it will change, like the color of the leaves in the autumn foliage.  I’ve never been a fan of change, and I’ve always hated the fall season, when my work schedule increased to the point where it kept me away from my family.  But over the years I have tried to learn to accept it.

This is one lesson I am not looking forward to learning.

Until next time, don’t change. Try to stay, as Barbara Streisand sang, evergreen.

Bud

 

Caregiving

by Bud Focht

Hi, my name is Bud and ever since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, I have been called a Caregiver.

Now I’ve been called a lot of things in my time, many not fit for print in a family newspaper (not sure what the rules are on blogs. Of what I’ve seen I think George Carlin’s entire list of seven words you can’t say on TV is eligible for use on blogs), but this Caregiver moniker is new to me.

So I do a few more chores around the house. Big deal.  Back in the 1980s I always wanted to be Michael Keaton in Mr. Mom. I would always say to my father, an electrician, when discussing the wiring in our kitchen “Yea, 220, 221, whatever it takes.”

Now I fix Terry’s breakfast and supper, and if I am home I fix her lunches. (Combination of me not liking Terry using the oven or stove and combination she sometimes doesn’t think of making herself anything to eat). I give Terry her meds every morning so she doesn’t have to try to remember if she took them or not. I do the dishes and the laundry, because it just doesn’t dawn on Terry to do them. I’m sure if I ask her to do it she would with no problem, she just doesn’t think of it.

If we go somewhere, I never let Terry out of my sight. I hold her hand like we were teenagers when we walk in crowds or near traffic. I make more decisions for her, almost all, especially the important ones. I now have to know where everything in the house (and her car) is, where Terry puts things, so if she doesn’t know where they are, I do.

It’s a good thing my given name is Anthony. Saint Anthony is the patron saint of lost things. Catholic school kids for generations have been told by the nuns to pray to St. Anthony if they can’t find something. At our house, it is like Easter Sunday every day with all of the Easter Egg hunts we have, looking for hidden items.

I’m trying to find a comfortable balance between Terry’s independence and my increased assistance. I don’t know if doing all of these things makes ME a Caregiver. I think I’m just a husband.

A husband who is taking care of his best friend, his soul mate. There is nothing that I would not do for my Terry.  Terry, on the other hand, has over the years often sung that song by Meatloaf to me. “I would do anything for love, but I won’t do that!”

For me, the caregiving is the easy part. It is the role changes that bother me the most, not so much my role but Terry’s role in our relationship. She is slowly but surely moving from spouse to ward.

Sometimes I feel a great sense of aloneness. Aloneness is not the same as loneliness, it is much worse. Terry was once my confidant, someone I could turn to for advice. I miss the conversations Terry and I used to have. Terry has always been reserved, quiet, but never failed to throw her two cents in around the house. These days it is more like me constantly asking “a penny for your thoughts?” In pop culture the running joke is that men always wish their wives would let them get a word in edgewise. Not in our relationship. If I don’t start a conversation, we could go hours in silence. Hours that are becoming scarce.

But despite the aloneness and the added chores and responsibilities, I feel Alzheimer’s has brought Terry and me closer together, if that is possible. We’re joined at the hip, have been for over 30 years. Recently when we became ‘empty-nesters’ we reverted back to our newlywed days. Instead of our roles being parents we were two individuals living together, taking care of ourselves. Now, there is a lot more of an ‘us’ then a ‘him & her’. Which is good as well as bad.

I mentioned that I give Terry her meds every day.  Like Reader’s Digest says, Laughter is the Best Medicine. Terry continues to laugh every day, which is good medicine for me as well as for her.  I’ve seen a lot of beautiful things in my life (my kids being born, the sunrise over the clear blue Pacific, the ball going over the fence for my first collegiate home run) but there is nothing as beautiful as Terry when she is laughing.

Even though we know there is no cure for Terry’s EOAD, I believe there is some healing that can occur.

I don’t mean a physical healing (those plaques and tangles are forming no matter what we do), but more of a healing of a spiritual nature.

There is a difference between cure and healing. Doctors Cure a disease. In the case of Alzheimer’s, that is Mission Impossible. Healing is a process with the patient.

Healing means to make whole. To make Terry whole, or keep her that way, means helping her be able to lead a fulfilling existence without being overwhelmed by her circumstances.

We visited her family last weekend for her mother’s 85^th birthday. The next morning Terry was writing in her memory book. I expected it to bring a smile to Terry’s cute little face, having just enjoyed a rare visit with her family. But it was just the opposite. She was sad, crying even, all morning. She told me she was dreading the day she did not remember her mother.

This was the first time in a long while that Terry has been physically upset over having EOAD.

So that’s where I come in, the husband, the Caregiver. I’ve got to keep Terry smiling, for both of our sakes. I’ve got to keep her talking. I’ve got to keep her whole. For as long as I can.

“Good Morning, Bud. Your mission, should you decide to accept it…”

I accept it without hesitation. It is not an impossible mission. Sometimes I just hope I don’t self-destruct.

Until next time, give and take care.

Bud

 

Back to Reality

by Bud Focht

Hi, my name is Bud and after spending a week where they filmed Fantasy Island my wife Terry and I now have to return to reality.

In the 1990s, the R&B divas En Vogue sang:

Back to Life, Back to Reality

Back to the here and now

Show me how, decide what you want from me

Tell me maybe I could be there for you

However do you want me

However do you need me

Back to life, back to the present time

Back from a fantasy

We just enjoyed a true fantasy come true in Kauai. Beautiful surroundings, relaxed atmosphere, and no worries. It has been a long time since we had no worries.

Terry and I went to high school and college in the 1970s, so we spent our worry-free innocent years in the turbulent 1960s.

Terry might be the only person diagnosed with Early Onset Alzheimer’s Disease who is still in her innocent years. “I’m a good girl I am” has always been one of her favorite sayings, quoting Audrey Hepburn with a Cockney accent from the movie My Fair Lady.

Life in general was anything but innocent in the 1960s, with the assassinations of JFK, RFK and MLK, the war in Viet Nam, the race riots in Mississippi, Watts and Detroit.

That is why all of the television shows in the 60s were pure fantasy. The evening news had nothing but bad news, so the rest of the television schedule dealt with everything but reality.

Fantasy shows like the Twilight Zone, Star Trek, Time Tunnel, Adams Family/Munsters, Mr. Ed (“Willlllburrrr”), Batman, I Dream of Jeannie (the first belly button I ever saw on TV), the Flying Nun, (she looks like Terry) and Bewitched.  Not exactly reality TV. And of course my favorite 60s shows were the ones that made fun of the sad state of affairs, Laugh In and the Smothers Brothers.

Reality in the 1960s sucked, even before you could say “sucked” on TV.

So now Terry and I are back in reality, hoping it is a while before it really starts to suck. As comedian Ben Stiller said in the movie he directed, “Reality Bites.”

People always ask me how Terry’s medicines are working, if they are helping. I used to say that it is really hard to tell. Usually when someone takes medicine it makes them better and you can see an improvement.

Unfortunately, that is not the way it works with Alzheimer’s. There is no getting better, no improvement. You just have to hope the meds slow the progress down. (progress doesn’t seem like the right word. The disease is progressing, but Terry certainly is not).

But now I think the meds are working, because Terry can still do things. She is still able to work, and she can still drive to a few local places, as long as it is day time.

But her independence is shrinking. She is beginning to have trouble writing in her memory book (a combination diary and daily planner I have her write in and read every day to help her remember things). Her decision making process is getting closer to that of a squirrel in traffic.

We came home the other night and she turned the light switch on in our bedroom, but only the ceiling fan came on, not the light. She didn’t know what to do, couldn’t figure out to pull on one of the little chains that hang from the light that control the fan and the light. We’ve had that fan for 20 years.

On our recent trip Terry never left my site. I’d walk her to and from the bathroom and wait right outside for her. (Funny word, bathroom. She wasn’t taking a bath in the airport or at the beach. She was using the restroom, the loo, the water closet, the lavatory, the latrine, the head (Navy term) and of course my favorite term for the toilet, the crapper). And speaking of crapper, Thomas Crapper did not invent the toilet as some people think but he was a plumber around the turn of the 20^th century who made his fortunes selling toilets. His product was known as ‘The Crapper.’   It was just a coincidence, however, that a slang word for feces is “crap”. That comes from the French word “crappe” which means waste or rejected matter, not from ‘The Crapper’. (I know a lot of shit about the shitter.)

We’re hoping that it is still a ways off before our lives go into the crapper, when this horrible disease worsens.

In October we go back to the neurologist. It will then be one year since he first saw Terry and realized something was wrong. He will give her similar tests to what he gave her last October, and we’ll then know how progressive the disease is (there’s that word again). Then we will know how the meds are working.

And then we may also know how soon it is going to be before things get crappier. That might get a little too real for me.

But we are very thankful we had our fantasy last week. We have plenty of pictures and souvenirs to help Terry remember for as long as she can the great time she had in paradise.

As we try to make the transition from paradise back to reality, I am reminded of a band that is on Terry’s iPod, Coldplay, and the song they sing, Paradise.

Life goes on, it gets so heavy

The wheel breaks the butterfly

Every tear a waterfall

In the night the storm night she’ll close her eyes

In the night the storm night away she’d fly

And dream of Paradise

We can only dream of Paradise now, as we return to reality.

Until next time, don’t let reality bite. Find your paradise and fulfill your fantasy.

Bud