Bucket List

by Bud Focht

Hi, my name is Bud and since my wife Terry and I were told it was “Bucket List” time we have begun checking off the top items on our “Bucket List”.

Rob Reiner, the former “Meathead” on the All in the Family television show of the 1970s who went on to be an award winning movie director, coined the phrase “Bucket List” with his movie of that title almost 10 years ago, about doing all the things you ever wanted to do before you “kicked the bucket”.

Terry and I just spent a glorious week on the oldest of the “sandwich islands.”

Kauai (rhymes with Hawaii for those of you that don’t speak the language of King Kamehameha), is known as the Garden Island because it is the most beautiful of the Hawaiian Islands.  

That is not just my opinion, but that of Hollywood.

On our trip Terry and I saw the waterfall that can be seen in the beginning of all of the Fantasy Island TV shows (near us on East Coast) of the 1970s.  We walked on the beach where Mitzi Gaynor tied to “wash that man right out of her hair” in the movie South Pacific (North Shore) and where they filmed the first season of Gilligan’s Island. We saw where Elvis filmed Blue Hawaii (West Coast) and speaking of the King, we saw where the natives of fictitious Skull Island tied up the women that they were offering to King Kong.  We walked under the archway and cave that is in Pirates of the Caribbean as well as Avatar (I saw this big blue guy on the beach but I just thought he was part of the Blue Man Group, or just cold).  We walked on the beach that is in Six Days and Seven Nights and speaking of Harrison Ford, we were on the beach where Indiana Jones was during the beginning of the movie The Raiders of the Lost Ark. We saw and I heard Bali Hai (North Shore) calling me, from the car and we flew over it in a helicopter, as well as fly into the canyon with the waterfall that is in the Jurassic Park movies.

British explorer James Cook was the first visitor to the Hawaiian Islands right around the time the United States were declaring their independence and he called them the Sandwich Islands. Not sure why. While we were there we had some fresh sushi that was caught that very day, a coconut fresh off the tree, fish tacos, a pineapple (we stole from the field, don’t tell), macadamia nuts and poi, but no sandwiches. (if you like poi you were probably that kid in kindergarten who ate paste).  

I received a few e-mails while we were away inquiring as to why I hadn’t updated this blog recently. Some feared the worst. (sorry to worry you, Terry is fine). Some people who knew me figured I just got lazy. And some said they missed my “weird sense of humor.”

As I said, when my Terry was diagnosed with Early Onset Alzheimer’s Disease in the spring, we were told it is ‘Bucket List” time.

Well, as Samuel Clemens (did he pitch for the Red Sox and Yankees?) once said, “The secret source of humor is not joy, but sorrow.”

There has been a lot of sorrow since that spring day, but the reason I have not written is because the last week was pure joy.

Samuel Clemens (Mark Twain for those of you who don’t know your American authors and humorists) also called the Hawaiian Island the Sandwich Islands when he visited here and wrote about the inhabitants. Among other great things Mark Twain did, he said something that was very similar to what one of my childhood heroes, Groucho Marx, said.  Groucho was famous for, among many other things, saying “I wouldn’t join any club that would have someone like me as a member.”

Long before Groucho and his famous brothers, Twain said: “I wouldn’t have a girl I was worthy of. She wouldn’t do.”

That is very close to the way I feel about my Terry. As Mike Myers said in the movie Wayne’s World (not filmed in Kauai), “I’m not worthy”.

In our 32 years of marriage, as well and as the three plus years we dated, she has made me happier than I know I deserve to be. I am truly not worthy of the happiness she has brought me.

But I digress. Back to the “Bucket List”.

I have read that the essence of any good “Bucket List” consists of overcoming fears, achieving goals and realizing dreams. Whether it is an exotic adventure half-way around the world or simply spending more time with family and friends, as long as you experience all the good things life offers.

Life dealt us a pretty shitty hand recently. I guess it is payback time for all of the great things we have experienced. We have three great kids, we come from great families who help and support us and we have great friends.

I’m afraid we’re going to have to skip the ‘overcoming fears’ part. For the life of me I could not get Terry to do the Zip Line in Kauai. (although she was a real trooper during the breath-taking helicopter ride and the scenic boat ride around the island when we got soaked)

I have been achieving goals, however. Since we got the news about Terry’s condition my main goal has been to provide her with the highest quality of life I could, as long as I could. One of her dreams since we honeymooned in Hawaii was to someday get back there, and with the help of family and friends we have realized that dream. We had an exotic adventure half-way around the world (don’t get me started on our 19-hour travel days) and we’ve been spending much more time with our family and friends.

We are experiencing all the good things that life has to offer. Before the really bad things come.

So my advice to you is to get started on your own “Bucket List.” Don’t wait until you are told that time is running out, because it is running out on all of us.

Start making a list, check it twice (wait, that’s Santa), and start checking things off.  Don’t wait.

As Mark Twain said, “Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do.”

Until next time,

Bud

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

The Glass is Half Full

by Bud Focht

Hi, my name is Bud and I am not a doctor, “I just play one on TV.” Remember that soap opera doctor from General Hospital (or was it All My Children) who said that in a commercial for Vicks cough syrup 30-some years ago?

As I said, I am not a doctor “but I did stay at a Holiday Inn Express last night.” (Another commercial from more recent times for those of you who are not so old).

No, I am not a doctor, but I have been reading a lot of medical books lately, since my 55-year old wife, Terry, was diagnosed with Early Onset Alzheimer’s Disease.

And I have a plan.

I read that the human brain weighs in at around three pounds and has about 100 billion cells (I say about because I lost count around 99,999,714,420).

The doctors who see the glass half empty say that Alzheimer’s patients can lose up to 40 percent of their brain’s weight and 40 percent of those hundred billion cells, after the tangles and the plaques that are currently forming in Terry’s brain do their evil stuff. Hell, I thought for sure I destroyed almost that many brain cells when I was in college, and my head did get a lot lighter when I finally trimmed my college afro.

I try to be a person who sees the glass half full (hopefully of beer), and I say that Terry will still have almost 70 billion cells still working in that little ‘bean head’ of hers, which is still a shit load of cells. She may not be able to be a ‘rocket scientist’ but that was never one of her goals.

Back to Terry’s ‘bean head’. I have a normal size head (despite having an Abby Normal brain). Our baseball caps in college were fitted hats and I wore a size seven and five-eighths. There was one guy on the team who wore a size eight and three-eighths. I think he was related to Shrek. Most humans wear a size seven and something eighths. I think Terry wears a size five and no-eighths.

I swear she has a pink baseball hat that she wears and the tag says TODDLER. I call it her cradle cap. No way that brain ever weighted three pounds.

So I’m thinking, maybe her problem might be that there just isn’t enough room in her little ‘bean head’ to hold those 100,000,000,000 cells. Maybe she’s having a garage sale to get rid of some unwanted used goods. Maybe her brain is just doing some spring cleaning?

Back to me not being a doctor, as if that last paragraph did not confirm that. And back to seeing the glass half full.

Granted, I have read and witnessed firsthand that parts of Terry’s cute little brain are beginning to not work as well as they should. But there are many other parts of her brain that are still working just fine.  I read that different parts of the Alzheimer’s brain decline at different rates.

So the parts of the brain that are still firing on all cylinders are the ones we are going to concentrate on over the next few weeks, month and years, not the ones that shit the bed. Those cells can kiss my ass and go straight to hell for giving up on my Terry.

Getting back to the ‘glass half full’ mode, some people live with Alzheimer’s for as many as 15 years.  Terry and I always looked forward to growing old together, and since one definition of old is “ten years more than whatever age you currently are” I’ll take a 70-year old Terry. The goal was always 100 but with recent events, I’ll take 70.

Switching back to half empty. There is this organ in your brain called a hippocampus. If you had asked me a year ago what a hippocampus was I would have told you it is the part of the university that houses the 3,000 pound ‘river horses’ from Africa, the ones with the enormous mouths and teeth. Like a big pig on steroids hanging out in the shallow water.

The hippocampus is really a little sea horse shaped organ in the brain that indexes experiences for later recall and helps us access memories.

Well, that little piece of shit sea horse has retired on the job, went and rolled on Terry, and is no longer doing its job. Sea Biscuit (the puppet sea horse in the Diver Dan children’s show my sister and I used to watch around 1960) would have never done that.

The hippocampus has stopped helping Terry remember things, but that doesn’t mean that the data is not in there somewhere, it is just tougher to get at it, to find it. I wonder if we can teach Terry’s brain the Dewey Decimal System.

It is not that Terry forgot what she had for breakfast today; she just needs help retrieving the info. The damn sea horse hippocampus is on the fritz and no longer helps her retrieve data, so that is where I come in. I can help her.

I read that the last things that Terry learned are the first things that get lost. That is why she can no longer work computers, even though she taught a basic computer class to grade school kids. And this is why she has trouble navigating her cell phone functions.

But I also read that the first things that humans learn are the last things that she will lose, so that is where we need to concentrate now.

We all have innate knowledge. Some people call it natural feelings. I call them instincts. Basically it is information that you are born with. Like birds flying south for the winter or salmon swimming upstream. Since that information was present before Terry was even born, that should be the last thing she loses.

And Terry has always had good instincts. Even when it came to dating me. The first time I asked her out I made her an offer that she could not refuse. And she refused.

Terry was (and still is) a big-time New England Patriots fan when I met her, and the Patriots of the late ‘70s, with Steve Gorgan and Randall Cunningham’s big brother Sam, were not that good, but she still loved them.

A very good friend of mine in college graduated a year ahead of me and got a nice job with the NY Jets (he now has a job with the NFL that involves getting yelled at on national TV by a psycho coach when the lights go out during the Super Bowl). My senior year in college he sent me a Jets jersey (this was before you could buy real jerseys in sporting goods stores) with my number on it. My first year out of college when I was working in New England he got me 50 yard line seats for the Patriots-Jets game in Foxboro Stadium, sitting with all of the Jets’ players’ wives. This was a sure-bet, grand slam, slam dunk of a first date. Not only was she going to say yes, I figured I was probably going to get lucky.

She said no.  Some family thing she had to attend. Like I said, good instincts.

Music touches parts of the brain that link what we sense, know and feel. Many times a melody does sound like a memory. So we are always playing music these days. There is no ‘dead air’ in Terry’s world as long as I can help it. Terry’s life from now on will have a soundtrack.

Art is also an area that is hardwired to the brain, and she can still, more than ever, appreciate and respond to it. We have always been Norman Rockwell fans so this summer we are going to visit the traveling Rockwell Museum while it is in Philadelphia (the real one is in Massachusetts and the one that used to be in Philadelphia closed). Philadelphia also has a pretty good Art Museum that we plan to visit, and we may even run up its 72 front steps like Rocky did.

Staying active physically is also very important for Terry. That has never been a problem. The Phys. Ed. major has always been very active and still takes walks with me, with or without our ‘grand-dog’ Harry.

I used to run five miles a day but after a week I had to call Terry and tell her “Hey, I’m 35 miles away from home!”

So we are looking at things differently now (like I haven’t been doing that for a long time now with my Abby Normal brain), as well as looking at different things. We are living for the moment, and we are starting to use the parts of Terry’s cute little brain that still work well.

I will continue to read as many medical books as I can about this horrible disease, and we will use our instincts to determine what is best for Terry’s quality of life.

Still not a doctor, but trying to keep the glass half full, until next time,

Bud

Support Groups

by Bud Focht

As a noun, Support can be something that bears the weight, something or someone who furnishes aid, or something worn to ease the strain on an injury.

As a verb, Support can be to carry the weight, to provide the necessities of life, and to give strength.

The word Group can be defined as “a type of hug!”

Hi, my name is Bud and since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease I have discovered that I am blessed with a tremendous support group, made up of family and friends who more than help me carry the weight. They ease my strain and provide me with the necessities I need.  They truly give me strength with their hugs.

Alzheimer’s disease is life-changing for both those who are diagnosed and those close to them. There are no two people closer than me and Terry. We are joined at the hip, always have been.

I read where there are Support Groups in many communities where caregivers can go to exchange practical information on caregiving problems and possible solutions. They share feelings, needs and concerns and they meet to exchange information on resources available in the community. They talk about ways of coping.

Me, I cope by drinking a lot of cheap beer, sometimes crying in it.

It truly is great that these support groups are out there, but I don’t think they are for me.

My support group is composed of my immediate family, my extended family and my friends. No meetings, just people being there for us, with us, down this road that has more pot holes than my neighborhood street at the end of winter.

Terry and I have three amazing kids, ranging from 25 to 30 years old. I know, all parents think their kids are amazing. Well let me tell you, I was a summer camp counselor for kids for three summers and a baseball clinician at a college baseball camp for kids for three other summers. I’ve been spending the majority of my time over the last 40 years on college campuses, the last 36 as an administrator, and I have seen many amazing and many not-so-amazing kids. Believe me, I know the difference.

Our oldest had a great job as an au pair (that’s what rich people call a live-in nanny for those of you who don’t parle francais) in Augusta, Georgia, taking care of a beautiful little boy, the son of a pair of doctors. The daddy doctor is a second cousin who we’ve known since he was a kid and is now a highly respected emergency room surgeon. She had a great gig, living where the peaches grow in a mansion with a pool, down the street from the Augusta National Golf Club (home of The Master’s), but she gave it all up in October, once it became apparent that Terry was suffering from more than just CRS (that stands for Can’t Remember Shit for those of you who can’t remember shit.)

Having her come back to live with us after all these years has been great, although I hate the fact that I no longer win all of the Jeopardy contests we have most nights in front of the television. (Speaking of TV game shows, Terry still does great when playing along with Wheel of Fortune. I always thought she had a thing for Pat Sajak). Our oldest has always been more on the quiet side in public but she more than makes up for that when she is around the family. (I keep telling myself the input is good for Terry’s brain.)  There is a special spot in your heart for your first born; they have it so tough because as brand new parents we didn’t know what the hell we were doing.

When she was a baby, when she dropped her pacifier we would boil water and sterilize it before giving it back to her.

Our son is very successful and busy with his work, his training (running, biking, swimming) and his dog, Harry. Harry is a Rhodesian Ridgeback with a bit of a hound dog in him and a larger bit of a devil dog in him.  Harry could very well be the subject of his own blog with all of his (mis)adventures.

Harry’s best friend and owner is very outgoing and confident, and amazes one of his oldest friends anytime they go out because it seems he cannot travel anywhere on the east coast without running into someone who knows (and likes) him. He had a great advantage in life as being just 18 months younger than his sister, able to copy and learn from her when they were ‘yoots’.  He now lives 45 minutes away but comes home as often as he can, to help me with chores around the house, to let us enjoy our ‘granddog’ and to visit his mother.

When he was a baby if he dropped his pacifier we would run it under the water faucet before giving it back to him.

Our youngest is working toward her master’s degree in nutrition and enjoying being in her mid-20s living with her boyfriend of three years. (that is how long they’ve been dating, not his age).  I kid them that they are hippies, (probably because we were more laid back raising her since we were finally comfortable with this parenting thing) but in reality I am jealous of them. I was a little young to fully appreciate the original youth movement of the mid-60s (although I did have a groovy Nehru jacket). The baby of our family lives 30 minutes away but comes home every Sunday and uses her biochemistry degree to make us a healthy meal.

When she was a baby and she dropped her pacifier we would have the dog lick it off before giving it back to her.

Most of Terry’s large family lives five hours away from us in the New England area, although two siblings live as far away as New Mexico and Rita the world traveler lives in the Great White North (Canada for those of you who didn’t enjoy Bob and Doug McKenzie (Rick Moranis and Dave Thomas as a couple of Canuck ‘hosers’ wearing tuques) on Second City TV)

Terry does not get to see her family nearly as much as she would like (twice a year on good years), but they are the ones who convinced me to write this blog and they would do anything for the sixth of the 10 siblings. They have supported us over the years with actions (several projects on the house that included, at different times, replacing the roof, replacing windows and walls, replacing the heating and electrical system, replacing floors), with financial support (for the trip to Hawaii), with spiritual support (there are more people praying for Terry than there are people praying for Argentina to win the World Cup) and with the support of cards, letters, phone calls and e-mails. I may have to learn to Skype like they all do.

Along with a great family, as Bette Midler sang, You’ve gotta have friends.

I ran into two guys the other night, Bob and Bob, who I was close to in the 1980s, back when we were young parents who were still able to play sports where you actually needed to wear a jock strap.  The closest I come to contact sports now is scrabble. I was amazed to find out that they are reading my blog. Hell, I was amazed that one of them could read. Like too many people, they had parents or in-laws who suffered from dementia and know all too well how it turns out.

A friend from my Miami days cared for her mother with dementia and sends me all sorts of great reading and research materials, as well as experienced advice. You can’t make old friends.

My oldest and closest friend has been like a brother from a different mother (and a different father for that matter) since 1974.  He is the one who has to see me sometimes cry in my beer when we discuss what is happening to my Terry. He cares too much, for everyone, and my quality of life would not have been as good the last 40 years without him.

Those Support Groups in the community run by the Alzheimer’s Association are great and are there for the many people who need them.

Me, I’m lucky. I’ve got a great family and I’ve got great friends. And, as George Gershwin wrote, “Ol’ Man Trouble, I don’t mind him. You won’t find him ‘round my door. I got starlight, I got sweet dreams. I got My Girl. Who could ask for anything more?”

Until next time, thanks for your support.

Bud

                                                George Gershwin