Head in the Sand

by Bud Focht

Hi, my name is Bud and the first joke I ever told in public was to my classmates on the second day of kindergarten.

Bob the Ostrich and Joe the Ostrich were walking along when they saw Fred the Ostrich.  As Bob and Joe approached Fred, who was a very nervous and timid ostrich, Fred got scared and he buried his head in the sand.  Bob and Joe then looked at each other and said, “Where did Fred go?”

The response? You could hear crickets.

Until my kindergarten teacher, Miss Krowder, laughed so hard I think I saw a snot bubble come out of her pretty little button nose. Then the entire class laughed. I was never sure if they laughed because the joke was funny (probably not) or they laughed because the teacher laughed (maybe) or they laughed because they saw the same snot bubble that I saw (most likely).

In reality ostriches don’t really hide their heads in the sand. They aren’t the brightest of birds (heck, they don’t even know how to fly) but they aren’t really that stupid as to think if they hide their heads they can’t be seen.

It is said that some people ‘bury their heads in the sand’ to avoid seeing obvious signs of danger or they refuse to think about an unpleasant situation.

I feel like I have been hiding my head in the sand when it comes to my wife Terry’s diagnosis of EOAD (Early Onset Alzheimer’s Disease for those of you who don’t Acronym).

Ever since we knew something was wrong back in October when we first visited a neurologist and when our worst fears were realized and confirmed in the spring, we’ve been trying to live life in the moment, enjoying each day as it comes, and not look too far down the road.  That is because a lot of snot bubbles appear when I do look down that dark road and it is by no means from laughing.

And so far so good. We are enjoying life; we are enjoying our family and friends. We are vacationing. We go the Jersey Shore almost every Monday (during the school year I work seven days a week so during the summers I take off every Monday). We just had a great trip to Canada for a large (32 people) family reunion and next we are heading to Hawaii.

Terry and I honeymooned in Hawaii in 1982 and Terry has always said that she’d like to get back there someday, even though we knew we could never afford that. “In the new system” she always said, meaning in the afterlife, when we are living in a perfect world, we’d go there then.

I’m afraid I’m not that patient.

So, because of several very generous gifts from members of Terry’s family and from my oldest and dearest friend, we decided to spend the money they gave us, along with the kids’ inheritance, and check off another item on the ‘bucket list’ and travel to Kauai for our 32^nd wedding anniversary.

I read that they have great sand there, where Terry can bury her toes and I can bury my head.

Another old friend of mine from my college days had to care for her mother a few years ago who had dementia.  When learning of Terry’s fate she ‘felt my pain’ and sent me two great books to read, ‘Still Alice’ and ‘While I Still Can’.

I have read the first half of both of these books, and they are great. The two characters, who have EOAD, Alice Howland in the one book and Rick Phelps in the other, share many of the same characteristics and problems as my wife Terry.

All three were in there 50s when they were diagnosed with this horrible disease; all three had problems drawing a clock in their meetings with the neurologist, and many more common symptoms. So I could relate to what they, and Terry, are going through.

The problem is, I cannot bring myself to read the second half of these books.

It is not that I am in denial. (no, not da river in northeast Africa). I realize that someone denying that they are in denial does not have the greatest of credibility, but it is true. Unfortunately I do realize what is eventually going to happen.

I also know the second half of these books are going to be pulling at my heart strings and I don’t know if I want that. As a matter of fact I KN OW I don’t want that. Those strings have been stretched to the max lately. Besides, I was never one to go see sad movies or read sad books. If it doesn’t make me fall out of my seat laughing, I usually pass.

I have a feeling there might not be too much to laugh about in the later parts of these books.

When Terry and I first got the news back in April, as you can imagine it was pretty tough. The great doctors gave us literature about what to expect and I could barely get through it. When I go to the Alzheimer’s web site and they start to talk about the latter stages, I have to log off. Too many snot bubbles.

I’m sure that I need to know what to expect and maybe how to handle it, but it is really a tough thing to do. Probably the toughest thing I will ever have to do.

I used to love to watch my kids compete in sports, especially youth soccer and little league baseball and softball. Everybody was having a good time, win or lose. At the young age where the ‘trophies for everyone” philosophy existed.  The emphasis was on participation, not the competiveness of winning or losing.

My son played soccer and ran track in high school, where competition is everything, and I enjoyed that as well, but now he is a triathlete, where he does Ironman races that take him almost 12 hours to complete the 140 miles of swimming, biking and running. I am proud of him for all of the training he does to be able to compete at this level and for accomplishing such daunting tasks, but I can’t bring myself to watch. It seems like such a struggle.

Ever since your kids are babies your instinct is to keep them safe and happy and protect them from anything and everything. Seeing them struggle is extremely tough.

And now I am dreading that is how it is going to be with Terry. Right now when she can’t remember things she can laugh it off most of the time. She still has that great personality I fell in love with 35 years ago.

I am dreading the day when it isn’t the least bit funny.

So eventually I will pull my head out of the sand and read the rest of these books. I have finished a few books about Alzheimer’s already, but they were mainly about what you should eat or different foods (coconut oil) that can help the meds work. Books like that I am all about. Tell me how I can postpone the inevitable as long as I can and I am all in. I’ll read War and Peace if it will help Terry remain the same Terry that we all know and love.

But books telling me how shitty it is going to get?  I am afraid I am not able to bring my head out of the sand just yet to read them.

Too many snot bubbles involved.

Until next time,

Bud

Family, the Tie That Binds. (No, not like cheese)

by Bud Focht

Hi, my name is Bud and I am taking my family on a road trip on the Fourth of July weekend.

I know, join the club.

AAA (‘Triple A’ for those of you who don’t drive) estimates 41 million people will be traveling this weekend, two percent more than last year and the highest number since the pre-recession Independence Day weekend of 2007.

With my luck, 40 million of them will be driving slowly in front of me in the left lane, not realizing that they should be in the right lane if they are not passing anyone. But that’s a complaint for another blog altogether.

I have never been mistaken for Job, the prophet in the Bible with all of the patience, but I have learned in recent months to ‘not sweat the small stuff.’  Unfortunately, there is too much ‘big stuff’ to sweat about these days. And I have always been a big sweater.

The Fourth of July holiday, as we all know, is when the United States celebrates its independence from the British Crown.  My biggest fear this Fourth of July is how soon my wife Terry will no longer be so independent.

So that is why my three kids and I are taking Terry on a road trip to visit her entire family.  This will be the first time many of them have seen her since she was diagnosed with Alzheimer’s disease.

We’re heading to Lachine, Quebec, just outside of Montreal, where Terry’s sister has a very large building where we can all stay.

Like in the Will Smith movie Independence Day, I call this building ‘the Mothership.’

It is a hundred year old building that has offices, conference rooms, a health facility, an indoor swimming pool and living quarters for over 300 people.  Up there they call it the Mother House and believe me, it is one mother of a house.

We had a family reunion at the Mother House two summers ago, walking distance from the St.  Lawrence River, and it was tremendous.  Terry’s large family has had quite a few reunions over the years and this will be the second one in Quebec. This one was not supposed to be for a few more years but they moved it up once they got the medical news about Terry.

Terry is the sixth of 10 kids. Number four is Rita, who lives in Montreal and is again serving as the ‘hostess with the mostest’.  Rita is a former college president and former publisher of a national newspaper, who now has a job where she reports directly to Pope Francis.   Rita is one of the most amazing people I have ever met. Very down to earth, wears sneakers and plays the guitar, was a mathematics major honor student in college and now has her Ph. D, and she even laughs at most of my jokes (okay, some of my jokes). She travels to Haiti every few months, where she has a hospital and recently opened up another school. She used to travel to the Congo, where she needed an armed escort while there, but fortunately she no longer has to make that trip.

Along with Terry’s mother, a saint if I ever met one, all nine of Terry’s siblings are expected to be in Lachine this week, along with several spouses and nieces and nephews. It should be a great time, especially for Terry.

Some people I know have a hard time relating to the fact that I actually enjoy spending time with my in-laws. What’s that old joke, ‘What is the difference between in-laws and outlaws? Outlaws are wanted.’

I am blessed with having married into a great family, full of extremely interesting and caring people.

But even if I wasn’t so lucky, it wouldn’t matter. I’m not going to Lachine for me. We are taking Terry there to spend precious time with her family, and for them to get to spend precious time with her, before things progress.

If anyone should be compared to Job, who was beset with horrendous disasters in his life, it should be Terry, with all the shit that has been dumped on her.

Although Terry is not able to do many of the things she once could (when we first got married she was allowed to take courses for free at the university where I work and she took Organic Chemistry, one of the toughest courses they have, just for the fun of it, and she aced it) she is still very much the happy-go-lucky, fun-loving Phys. Ed. major I met in 1978 when I was working at the college she was attending.

Terry realizes she can no longer do certain things, like drive at night, no matter how short a distance.  Making decisions is no longer an easy thing for her to do. (most of the time I don’t even ask her what she wants to eat anymore, I just make something I know she likes that I can put coconut oil in) Or read a map. (Terry is no longer my navigator when we go on road trips) Or remember what she did earlier that day. (I physically watch her take her meds every morning because at lunch time she could not remember if she took them or not, so I make it so she doesn’t have to even try to remember that) But it doesn’t frustrate her the way it would you or me.

One thing that has gotten Terry through these last few months, and hopefully the months and years to come, is her extraordinary faith. She knows, not thinks, but knows, that when we are done with this world, there will be a new system, and that we will live in a perfect world. And she is content with that.  Has been for a while now, even before the shit hit the fan.  (Maybe, like Job, she IS a prophet)

And she gets that from her family. They are all people of faith who live their lives the right way. They are all successful in their fields and highly respected, yet are down to earth and sweet.

The great Desmond Tutu once said “You don’t choose your family. They are God’s gift to you, as you are to them.”  I don’t know about the second part, but Terry’s family certainly has been a gift to me.  But unlike the Nobel Prize winning social rights activist who vehemently opposed apartheid, I prefer to think that family is like fudge; mostly sweet with a few nuts. That’s where I come in.

So over this Fourth of July weekend, if you are like me and are having an adult beverage, raise your glass and give a toast to continued independence. For the U.S. and for Terry.

Have a happy Fourth of July, and stay out of the left lane.

Until next time,

Bud

                                                        Desmond Tutu

                                          Job

A Caregiver, a Yankee and a Rastafarian walk into a country western bar…

by Bud Focht

Hi, my name is Bud, and today I feel like I am the luckiest man in the world.

Not to be confused with the immortal Lou Gehrig, the Iron Horse who 75 years ago, despite suffering from amyotrophic lateral sclerosis (now called ALS or Lou Gehrig’s disease), proclaimed to a sold out Yankee Stadium crowd that he considered himself “the luckiest man on the face of this earth,” when he was forced to retire from baseball due to health reasons after playing 2,130 consecutive games.

No, I am the luckiest man in the world because Terry and I just had a great week.

The responses I received from the first blog that I posted last week could not have been more positive and touching.

I was against going public with my thoughts about this, content to just sending group e-mails to Terry’s large family spread out all over the country, trying to keep them abreast of what was going on in her life, hopefully with a little levity. It was their insistence that made be start the blog, “A Demented Look at Dementia,” and they once again proved how much smarter they are than I am.

Someone asked me about the title. Dating back to my college days I was often told that I was a bit demented, and that was just by my professors, guidance counselors and coaches.

Back in April Terry and I were driving home from Baltimore after our final visit to the Loyola Clinical Center. That was the day we were given the results of all of their testing and it was that day that our darkest fears were realized. That was the day that they told us Terry does, in fact, have Alzheimer’s disease, and that her condition was only going to get worse, and soon. 

The doctors, who could not have been any nicer or more professional, actually used the term ‘bucket list time.’ Unfortunately, they weren’t telling us it was time to go see a Jack Nicholson/Morgan Freeman movie.

On the long drive home that day we were listening to the radio and the Zac Brown band was playing. They are one of our favorite bands and Terry looked at me and said ‘We should go see them in concert someday.”

This was coming from someone who had seen just two concerts in her entire life. Back in the early 1970s Terry’s high school won a contest and received a free concert from a local New England band named Aerosmith. (Yes, that Aerosmith. Steven Tyler and the other Bad Boys from Boston).

Terry was not impressed.  About seven years ago my son took his mother to a George Strait concert and Terry was very much impressed and has been a country music fan ever since.

Well, last Thursday night Terry and I, along with our two dearest and oldest friends, Jack & Cathy, checked off the first of many to-do items on that bucket list.

We saw the Zac Brown Band in concert and had a tremendous time, despite probably being the oldest people in the very large crowd.

For one night, in that crowd, Jack and I were finally ‘One Percenters.’ As far as age group, anyway.

There was no opening band, but Terry and I were treated to something even better. For the last 45 minutes just prior to the band taking the stage, the speakers blasted out nothing but Bob Marley songs.

We were Jammin! 

I saw Marley in one of his last concerts in the fall of 1980 at Brown University and became a major fan.

Over the years Terry and I have owned three different versions of Babylon by Bus, a live double album Marley the Wailers put out in 1978. We wore out the vinyl albums and an eight-track tape before finally joining the 20^th century and purchasing a CD, and those Marley songs have been played more often in our house than any other music.  Coincidently, I was wearing a Bob Marley tee shirt at the concert Thursday.

On Friday morning Terry’s face actually hurt from all the smiling she had done at the concert. (At least that’s the story I am telling everyone and that it was not from my attempt at reggae dancing when I accidently clocked her in the kisser).

Zac Brown has so many great songs that we love: Chicken Fried, Toes, Knee Deep, just to name a few, but one song he sang Thursday night really hit home.  And I swear he was looking right at me and Terry when he sang these words from his great song Quiet Your Mind. 

“They say that it’s gone before you know it. So soak it all in, it’s a game you can’t win, Enjoy the ride.”

That was the first thing Terry and I had to try to learn after that long ride home from Baltimore back in the spring. We’ve got to find a way to enjoy the ride, because this is, indeed, a game we can’t win, and it very well could be gone before we know it.

But like I said, today I feel like I’m the luckiest guy in the world.  

To paraphrase the Iron Horse’s speech to the Yankee Stadium crowd that day, “Sure, I’m lucky. Who wouldn’t consider it an honor to have known someone like (Terry)?..When you have a wife who has been a tower of strength and shown more courage than you dreamed existed-that’s the finest I know. So I close in saying that we may have had a tough break, but we have an awful lot to live for.”

Bob Marley and the Zac Brown Band, along with Jack & Cathy, gave Terry quite a night last Thursday, one I will never forget. I just wish I could say the same for Terry never forgetting that wonderful night.

So be sure to soak it all in. It indeed is gone before you know it and if you are as lucky as I am, you’ll have someone as great as I have to share and Enjoy the ride.

Until next time,

Bud

A Demented Look at Dementia

By Bud Focht

Hi. My name is Bud.

Sounds like I’m at an AA meeting. No, I’m not an alcoholic, although the biggest difference between me and an alcoholic is that alcoholics go to meetings.

Bud is not a nom de plume (pen name for those of you who don’t parle francais), just a nickname, and I am a 57 year old caregiver for a loved one with Alzheimer’s.

I know, life is tough, wear a helmet.

I realize I am among many who have had to make adjustments in their life to care for someone they love that has been inflicted with this horrible disease (is that redundant? Are there any diseases that are not horrible? I mean the ‘clap’ is horrible, but at least, hopefully, there was some enjoyment somewhere along the line), but unlike many people my age who are in this position, I am not caring for a parent.

I wish! 

My Mother died of lung cancer when I was just 43 and she was in her late 60s. She was a 40-year smoker so I guess you reap what you sow, but it was still hard on me and my kids, my sister and her daughter and of course my Dad. She was a great Mom and a terrific Grandmother.

My Father died  10 years later, also of cancer (esophagus). My Dad and I were very close, especially over his last 25 years when we were more friends than Father-Son, but that is fodder for a different blog.

My beautiful wife (really more cute than beautiful. Five foot two, eyes of blue, very happy, honest, spunky and athletic, weighing in at about 100 pounds if she eats a good breakfast) is just 55 years old and was recently diagnosed with Alzheimer’s Disease.

The worst part isn’t having to make the adjustments to care for Terry (Therese, French Canadian from New England). That is one of the easier parts. It is like when you have your first child. You have to make major adjustments to your life but you don’t mind, because that new child is the most important thing in your life and your paternal instincts take over and nothing else matters as much anymore. Not the partying, not the social life. Not the peace and quiet. Nothing.

No, the worst part is seeing your best friend, the person who you planned on, and looked forward to, growing old with, begin to decline at such an early age. Seeing her inability to do simple things that she used to do so easily.

At first we just thought Terry was suffering from a more common ailment, CRS (Can’t Remember Shit). Even her doctor at first felt her problems were simply ‘menopausal’. We (Terry and my three great kids, ages 25 to 30) were able to laugh it off at first, even tease her about it, and Terry found humor in it.  But as time went on and the forgetfulness, as well as the inability to concentrate, became worse, I was afraid I knew better.

Of all the times in my life to be right.

Terry was a two-sport varsity athlete in college, the number one singles player on the tennis team in the fall all four years and a member of the track & field team in the spring (something to keep her in shape for tennis).

When we got married Terry worked for years at the local YMCA, teaching gymnastics to toddlers. Over the years she played for an adult women’s soccer team, she officiated high school field hockey. She taught physical education and computers at a grade school. Now, she has no idea how to even turn a computer on. When I log on to a story on the internet so she can read about her beloved Red Sox or Patriots, she doesn’t even know how to scroll down to read more of the story.

I could use Tom Brady’s helmet about now.

Terry is one of 10 kids. Her family is freakishly intelligent and all very successful. They are mostly teachers, nurses, computer wiz’s (is wiz’s a word? I mean plural for Wiz, not multiple urinations). They include a college chemistry professor, a high-ranking nun who reports directly to Pope Francis, an MIT grad who owns houses on both coasts, a highly respected ‘Mr. Chips’ type of teacher at a prestigious private boarding school who is considered a god in Nicaragua for building libraries down there during his summers, several high school and grade school teachers, an ICU nurse and a cancer surviving engineer.

Terry was an outstanding tennis player who never had a lesson, except from her oldest brother who used to win doubles championships with her at the local township park courts. Terry was the ‘jock’ of the strict, Catholic family that said the rosary together EVERY night.

Having gone to college in fun-in-the-sun Miami as a baseball player, majoring in solar epidermal radiation (getting a sun tan for those of you who don’t habla), and living 1200 miles from home, I was used to dating girls with a little more freedom. Dating Terry was pure culture shock, but Devine Intervention played a major role in our meeting. And I am eternally grateful. Especially now. I am so happy and thankful that I am here for her.

Now that you know the background, I plan on taking my in-laws’ advice and write a weekly blog about my experiences with my best friend, my soul mate.

I plan on writing more about Terry and how we deal with this situation in the days, weeks, months and hopefully years to come. How she reacts to the meds (Namanda and Donepezil) and how we react to her condition, as things inevitably worsen.

To all of you who are going through what I am going through, please keep in mind the advice my great cancer-surviving sister-in-law gave me. Every day is a gift. Live today like it is your last, enjoy it, and make the most of it. If you wake up tomorrow, be thankful and enjoy that day as well. Don’t look too far down the road, because it can be overwhelming and it will take away from the joy you should be having today.

So if you know of anyone who is going through this, let them know about this blog.

Have a joyful day today, and hopefully tomorrow as well. We will be trying to do the same.

Until next time.

Bud