Don’t Tell the Worry Wart

By Bud Focht

Hi, my name is Bud and for the first time in my life I find myself keeping secrets from my wife.

It is not that I am being deceitful, just a little secretive. Eventually I come clean, but not until I have to.

I realize that does not sound very good, sounds like a lot of cheating husbands. But trust me; it is for her own good. (That sounds worse). 

Let me explain.

My wife Terry has become worrisome. This is a trait she never had before. Her faith has always helped her stay calm. She has always been able to put things she cannot control in God’s hands. These days she gets nervous about what lies ahead.

We are all nervous about what lies ahead for Terry, who has Early Onset Alzheimer’s Disease, a disease that only gets worse with time.

But Terry is nervous about the immediate future, if I happen to tell her about it. I have discovered that, if I don’t tell her, she is fine.

Terry has long been my shotgun rider, accompanying me on road trips. She has always enjoyed them and so have I. This time of year I make a lot of road trips and it gives me peace of mind having her with me.

Lately, however, if I tell her we are making a road trip, she gets nervous about it and works herself up into a fret and is scared to go. She gets so nervous that it affects her stomach (and lower). I think that is what worries her the most, the fear of having an accident (not with the car, either).

It is a vicious cycle. She gets nervous and it bothers her stomach, and then she gets nervous about her stomach being upset on a road trip.

But if I don’t tell her in advance, and then right before we go tell her, she is fine and she wants to go.

I believe her fears stem from the fear of the unknown. Because of her hippocampus no longer working, Terry has difficulty picturing what will happen next. That is why I had to take the car keys away from her a little over a year ago. She could no longer picture in her head how to get places, places she had been hundreds of times.

Now if I tell her we are going to make a trip, she has trouble picturing it and she gets scared, nervous. So, I no longer tell her. That is, until the last minute.

It started a few weeks ago when I had to travel to Maryland, a three-hour drive. We planned and talked about the trip for weeks, but the day we were scheduled to go Terry backed out. She was scared. She wanted to stay home, one of the only places where she feels secure without me.

Fortunately, our youngest was able to come home that night and stay a few hours with her and make her supper.

It happened again the following week; Terry just wanted to stay home.

So last week when we had a three-hour trip to Connecticut, I didn’t tell her. I just came home from work and said let’s go, and she was fine. She wanted to go. And she had a good time. No accidents.

So that is what I have to do from now on, just not tell her.

I am afraid that is easier said than done. I have always been one to plan everything out, and I need to say my plans out loud, using Terry as a sounding board. It is tough not having that partner anymore, someone to discuss things with. Someone to give me a different opinion on things.  Someone to give me advice.

I miss that.

I miss being honest with my wife. I miss planning things with her.

But if being a bit secretive is the only way to have her come with me and enjoy the trips, so be it.  It is a small sacrifice for me to pay to have her company on the trips. To know she is safe and happy.

It turns out that honestly is not always the best policy when it comes to dealing with my Terry.

Until next time, I’ll be keeping my plans to myself.

Bud

Oh yea, I have a blog

By Bud Focht

Hi, my name is Bud and it was recently brought to my attention by a few different people that I haven’t written a post for my blog in a while. What started out a year and a half ago as a weekly therapeutic vent about caring for a wife with Early Onset Alzheimer’s Disease seems to have dwindled into a bi-monthly effort. 

(Now does bi-monthly mean twice a month or does it mean once every two months or does it mean that you like both boy and girl months? I’m not sure.)

I am sure the decrease of my writing output is due to a number of things.

First of all I am entering the busy (I should say busiest) portion of my work year, so time is not what it used to be. (And speaking of time not being what it used to be, how much does it stink that it gets dark at 5pm? Is that depressing or what?)

My caregiving has also become a bit more time consuming, as my wife Terry now needs more assistance in her day-to-day activities.

Another big reason why I haven’t written much lately is because of something our mothers taught us at a young age. “If you don’t have anything nice to say, don’t say anything.”

The last few months have not been that nice. They’ve been tough. I got spoiled during the summer months, seeing so much of Terry, being able to spend so much time with her. Being able to help her with everything. That is getting harder to do these days.

Fortunately Terry has been able to go to a lot of the sporting events with me at work, mostly soccer games, a field hockey game now and then, a couple of swimming & diving meets and a couple of cross country meets. Terry likes going to all of these events, especially the cross country meets. She ran track in college, coached youth track on the CYO level (even took some athletes to the prestigious Penn Relays) and enjoys going to our son’s triathlons. These races are a nice, comfortable environment for her.

It’s funny, though, that when we are at these outdoor events, Terry is fascinated by flying objects in the sky. (I know, where else would they be?) She loves watching airplanes or helicopters pass overhead. And she likes pointing them out to me. Sometimes IN THE MIDDLE OF THE GAME. God forbid a hawk, a crane or a heron would fly by. 

I wonder why that is? She was never like that before. But now whenever we are outside Terry loves to point out anything moving in the sky. 

The soccer games that Terry went to with me this fall were played on a field surrounded by woods, and the trees the past few weeks have been unbelievably beautiful. Just on the other side of those woods is an airport. I think she saw more of the airplanes coming and going than she did of the games or the foliage. But she was happy. And I was happy too, having her nearby.

I hate being apart from her, worried if she is okay. It is becoming more and more difficult for her to entertain herself when she is alone. Not only entertain herself but simply handle things by herself.

But even though I always want to be with her to care for her, every once in a while it gets tough being a caregiver. It reminds me of when I was a young father, sometimes I would get frustrated with the kids.

Usually because I didn’t have enough time, didn’t have enough rest, or didn’t have enough to eat.

Regrettably, I was never the most patient father.

I started out being a very patient caregiver. (That is, once we knew why Terry was forgetting everything or could no longer figure things out the way she used to.)  But lately I can sometimes feel myself getting frustrated.

Usually because I didn’t have enough time, didn’t have enough rest, or didn’t have enough to drink.

That is when I need to take a step back and try to put things in perspective.  In a situation like this an old urban friend of mine would always say “Fool, you better check yourself before you wreck yourself.”

So I did check myself. I took a “Caregiver Stress Test” on line at alz.org. I didn’t do so well. So what else is new? Taking tests was never one of my strong suits. Until I got to college, my teachers were never that impressed with my answers.

Well, I wasn’t too impressed with the answers I got from my stress test, either. Like;

“Sadness, grief, loneliness and anger are all normal feelings as Alzheimer's slowly takes away the person you care about and your life is forever changed. Expect to feel loss and grief. But don't be afraid to acknowledge your feelings and to seek the comfort of others who understand.”

No shit! Not exactly an eye-opening answer. Not exactly the answer I needed to wind down.

The fall outdoor sports season is now winding down.  Soon the basketball season will begin and Terry will be making most of the road trips with me. I am lucky that we can do that.

I have to keep reminding myself that I am lucky. I mean, it totally sucks that my Terry has this disease and is slowly becoming less and less independent. But I have to remember to appreciate every day that we get to laugh with each other. And that happens every day.

I was reminded of this today when I heard an old favorite song of mine on the radio. Twenty-some years ago I was an R.E.M. fan and they wrote an anti-suicide song geared toward teenagers called “Everybody Hurts.”

That song states that everybody hurts, everybody cries, so hold on. You are not alone.

One of Terry’s favorite songs these days is called “I Hold On” and is sort of her motto with this disease. In that song it says “I hold on, to the things I believe in, my faith, my love, our freedom, to the things I can count on to keep me going strong. I hold on.”

So Terry and I will continue to try to hold on. And I will try to be more patient. And maybe even write a little more.

Until next time, did you see that airplane?

Bud

Apple, Penny, Table

By Bud Focht

Hi, my name is Bud and if I was a still life painter, I would draw a nice, sturdy wooden table, with a bright red apple on it next to a shiny cooper penny.

My wife Terry had her annual visit with the neurologist this week.  He is the doctor who first told us in the fall of 2013 that something was wrong.  We went back to him last October, a year after Terry was diagnosed with Early Onset Alzheimer’s Disease, and he ran the exact same tests again, which included an EEG (like an EKG except it is for the brain, not for the heart) and an MRI of the brain, as well as different tasks he gave her to do in the office.

Terry did just as well, or just as bad, on almost all of the tests the first and second times, and the MRI and EEG showed no difference from the first and second visit.

This time he again asked Terry to remember three things, an apple, a penny, and a table.  Funny how he never changes it up. It is always apple, penny, table.  When I was talking to my kids last week, before the visit, I told them and Terry he is going to ask you to remember an apple, a penny and a table. Then he is going to ask you a bunch of questions, and then he’ll ask you what the three things were.

I didn’t tell Terry the questions he was going to ask. This is not the test that I really want her to study for. I want a true reading coming from the doctor’s exams. The only reason I told her and the kids the part about the apple, penny table was because I knew Terry would not remember it. She hasn’t yet.

The neurologist asked Terry to spell the word WORLD, which she could do. But he asked her to spell it backwards and she had no clue. She gave it a couple of tries, usually starting with W, but could not do it. For the third year in a row.

But it was how she handled the inability to spell the word backwards is what the doctor took notice of.  She admitted, “Oh, this is not my strong suit.” And “This is a tough one” but half laughing while saying it.

Finally when she gave up she said “I’m a mess,” and started laughing again. He was happy to see and hear that she still has a sense of humor, that she is a happy person. And healthy.

The doctor asked her to show him her left, little finger and she did that, and to put her right thumb in her left ear, and she could follow those instructions.  But then he asked her what the three things she was supposed to remember and again, for the third year in a row Terry had no shot.

Could not remember apple, penny, or table.

I had to tell the doctor all of the things Terry can no longer do since our last visit in October. Last visit I had just taken the car keys away from Terry.

Since last October Terry can no longer use the oven, stove or microwave. She can’t text on her phone. She can turn the TV on and off but can’t change the channels. Same with the radio. She can turn it on and off but can’t change the station.

One day I was listening to the football game on the radio and forgot to put Terry’s country station back on. The next day I came home from work and Terry told me, “for some reason they were talking a lot about the Eagles today.”

She can turn the treadmill on and off but doesn’t know how to change the speeds. So she can do it when she is home alone, she just can’t go too fast.

Lately she’s been putting the dishes away where they don’t belong, but she gets a kick out of it. We call it my daily Easter Egg hunt and Terry laughs every time I pretend to give her a hard time when I am looking for things.

Because Terry is still healthy and still has a sense of humor, and because she knows what is going on, she just can’t remember things, the neurologist didn’t order the EEG or the MRI this time. He doesn’t think the brain has begun to shrink yet.  The decline has continued but it has been gradual, which means the majority of her brain is still okay, it is just the hippocampus not working. She just can’t remember things.

Once the brain begins to shrink, there will be more drastic changes. But for now, she is healthy.

So for the first time, Terry and I left the neurologist’s office in a good mood.

After the doctor’s appointment we took a nice, two hour walk on the tow path next to the Delaware River and Delaware Canal. We were walking along and all of a sudden Terry turns to me and her eyes are real big and she says “APPLE, PENNY, TABLE. APPLE, PENNY, TABLE.”

We both almost fell in the canal laughing. I told her I was going to quickly call the doctor back and see if he’ll change her grade.

The rest of the walk she was like ET when he first started to talk “ET Phone Home, ET Phone Home.”  Terry kept on saying the rest of the walk “APPLE, PENNY, TABLE. APPLE, PENNY, TABLE”

Unless some of those “drastic” changes occur, we again will not see the neurologist until next October. She will continue to be on her two medicines, Aricept and Namenda, for another year. Between now and then I am sure I will have compiled a new list of things that Terry can no longer do. I just pray that laughing isn’t on that list.

Along with Aricept and Namenda, laughter truly is the best medicine. I know it has been for me.  It is the only thing that has gotten me through this, being able to see Terry laugh.

Until next time, maybe I will draw that table with the penny and apple on it. I’m sure that would make Terry laugh.

Bud

Coming Out No Party

By Bud Focht

Hi, my name is Bud and I have been having trouble ‘coming out.’

No, I am not gay. And as Jerry Seinfeld famously said on one of his television shows 20-some years ago that then became a catch-phrase, “not that there is anything wrong with that.”

No, I have been having trouble telling people that my wife Terry has Alzheimer’s Disease.

It is not that I am ashamed of it. I’m not trying to hide it. As a matter of fact, it is just the opposite. I want people to know. I would much rather people know what her problem is rather than wonder why she can’t perform so many simple tasks.

I guess I would rather people know she has an incurable disease than think she is simple-minded. I would prefer that she was just not that smart.

Most people I work with know. All of my friends know.

The problem is, when I try to tell people, I get emotional. I’m not sure why that is.

Obviously, it is an emotional subject, but it is something I’ve been dealing with for two years now. Even before she was positively diagnosed in the spring of 2014, it was the fall of 2013 when I knew something was seriously wrong, more wrong than just “menopause” which her primary physician had suggested. It was two years ago when I first took her to a neurologist to have her checked out.

Turns out it was more “mental-pause” than “menopause” that she was suffering from.

Terry’s condition sometimes gets to me, but for the most part I am able to handle it. Except when I try to tell someone.

I remember telling my neighbor this past summer. I was a mess. I was fine, making small talk. Then she saw the Walk for Alzheimer’s tee shirts on the clothes line and asked about it. When I tried to tell her it was Terry who we were walking for, her and I both started balling.

And it happened again the other day, with a total stranger.

I took Terry shopping for some new clothes, but she was having trouble in the fitting room. Even though I only gave her one item at a time to try on so she would not get confused, once she went in there she wasn’t sure what she was supposed to do.  (I’m just so glad that she didn’t yell out “Hey, there is no toilet paper in here!”)

So I went up to a sales person to ask if I could go in the fitting room with Terry. I didn’t want her to think I was a perv or anything so I tried to explain Terry’s situation, and I started getting emotional again.

I guess knowing it and actually hearing me saying it are two different things.

Fortunately, the sales person was very understanding and said there was no problem with me going in there, and she even offered her help if it was needed, which was nice.

What was not nice was the fact that I almost lost it, in public, in the middle of a store.  And I hate Terry seeing me upset. I need to be strong for her. She gets a lot of her information these days by reading my reaction to things. If I am calm, she is calm. If I am laughing, she is laughing. I don’t want her all bummed out because she saw me crying.

I remember the day I wrote my first blog. I e-mailed the link to many friends and some co-workers, telling them what had happened. After I hit send I had to leave work for the rest of the day. I totally lost my shit. I was even having a tough time driving home that day.

That seems like a long time ago, June of 2014. Fifty-two blogs ago. A lot has happened since then, and most of it has not been good. But some of it has been.

The relationship that Terry and I have is great. We have never been closer. We are almost always together now, and enjoying each other’s company.

Unfortunately, the amount of time we are together is as much a necessity as it is a choice. Terry’s decline in cognitive skills has not stopped.

For the most part it has happened gradually, so it never really hit me that hard. That is, until I try to tell someone about it.

When my friends and co-workers ask about Terry, how she is doing, it isn’t really THAT tough for me to talk about, for the most part.  But it does get to me.

The everyday dealing with it, however, is something that I have been able to handle. I guess I have Terry to thank for that.  She still has a great disposition. She still laughs every day. She still smiles most of the time.

Lately she has been getting a kick out of my daily “Easter Egg hunts.”  One of the few household chores that Terry can still preform is doing the dishes. But after she dries them and when she puts the dishes away, there is no longer any rhyme or reason as to where she puts them.  She puts the pots and pans where we keep the tupper wear, and she puts baking dishes away in various places around the kitchen. She doesn’t even try to put my travel coffee cup away. She just leaves that out for me to put it away.

Terry is beginning to worry more about things. But she has faith in me, she knows I will take good care of her, and she constantly thanks me for doing so. As if she needs to do that.

I never mind taking care of Terry. I think I am good at it. What I am not very good at is telling people about our situation.  Not in person, anyway.

Until next time, I guess I just won’t be that good at ‘coming out.’ Not that there is anything wrong with that.

Bud

Take Your Spouse to Work Day

By Bud Focht

Hi, my name is Bud and lately I have been taking my wife Terry to work with me.

Not every day, and not for all day, just when I have to work weekends and weekday evenings. On long days I go home at lunch time and bring Terry back with me.

Back in 1993 the Ms. Foundation for Women came up with Take Your Daughter to Work Day.  The foundation was acting on research that showed adolescent girls received less attention than boys, so this day was to give girls additional direct attention and an insight into work world opportunities available to them. It was to serve the multiple purpose of increased self-esteem for young girls as well as give them some ideas of the wealth of careers in the world. It also allowed them more one-on-one time with mom or dad.

When I was young my father took me to work with him a few times. He was an electrician who would wire newly built houses.  He worked with my grandfather, his father, so it was a real family affair.

I even got paid, sort of.

My father would pay me five cents an hour, but anytime I would lose my tools, which consisted of a hammer and two screw drivers (regular and Philips head), I would owe him a nickel.  At the end of the day I always owed him more money than I made.

Maybe that’s why I never went into the construction business.

With the end of summer and the beginning of the academic school year, my hours at work double.  There are many evenings that I have to attend a sporting contest and a weekend does not go by that I don’t have to work either Saturday or Sunday, many times both.

The good news is that I only travel to away games during the winter, so in the fall and spring I just cover the home games in person. With modern technology I can cover the away games using the internet and me cell phone.

So now when we have home games that I have to cover, Terry attends them with me.

Like Take Your Daughter to Work Day, bringing Terry to these games serves multiple purposes.

First of all, she enjoys it. She has always been interested in sports. She grew up in New England a big fan of Providence College basketball, Boston Red Sox baseball and New England Patriots football. And in college she played varsity tennis and ran on the track & field team.

Growing up in a large family full of brainiacs, she was the jock.

I used to buy my father a subscription to Sports Illustrated every year, and when the next issue would arrive, he would give me last week’s edition (my mother didn’t raise no fool).  When I got the magazine I would read about one-third to one-half of the stories, just the ones that interested me, but Terry would read that thing from cover to cover.

She really likes sports.

Secondly, it is much easier for Terry to follow athletic contests than it is for her to read a book or watch television or a movie.

Terry’s Early Onset Alzheimer’s Disease prevents her from enjoying books and movies as much as she used to. When she reads a book, by the time she finishes a chapter, she cannot remember what happened in the previous chapter. Same with watching movies, it is hard for her to follow the plot.

But in sports, there is always a scoreboard that tells you who is winning, what the score is and how much time is left or what inning it is.  Although there have been a couple of times when, at half time, Terry had to ask me how we were doing.

I’m afraid things like that are happening more and more frequently.

Which brings me to the third reason, similar to Bring Your Daughter to Work Day, more one-on-one time. We don’t have as much of that in our future as we should.

The fourth and most important reason I have been bringing my wife to work with me is for peace of mind.

When I work late I used to rush my job, probably not do as good of a job as I should, because I was thinking of her, worried about her, and not concentrating on my job. Not putting the amount of time in needed to do the job right, or at least to do the job to the best of my abilities.

But with Terry at the game with me, I am in no rush. I am not in any hurry to rush home because she is with me.

So if people think she might be a distraction to me with her being at the game, in reality it is just the opposite. Having her at the game allows me to concentrate MORE on my job.

Terry began making road trips with me a few winters ago, when the kids were grown and on their own, no longer needing a parent to be home with them.

Over the last two years, since Terry’s diagnosis, she has been making almost all of the road trips with me, at least the ones that I could drive to.

This winter she is even flying to Cancun with me for a basketball tournament I have to attend.

Having Terry with me at these games is great for both of us.

I realize there will come a time in the not-to-distant future when, for an assortment of reasons, I will no longer be able to do this. But for now, every week has a few Take Your Spouse to Work Days in it.

Until next time, I will be taking Terry to work with me, and we both will be enjoying it.

Bud

Shotgun Rider

By Bud Focht

Hi, my name is Bud and my wife Terry is my shotgun rider.

For as long as I can remember, the first person to yell “shotgun” prior to a car ride was awarded the choice seat, the front seat passenger.

When my kids were little and because enquiring minds want to know, I had to explain how that seat got its name, from the old stagecoach days when an armed employee, usually with a shotgun, would sit next to the driver and protect the passengers and their valuables from would-be robbers.

Country singer Tim McGraw had a song this year called Shotgun Rider and his summer tour was named the Shotgun Rider Tour.  That was Terry’s favorite song this past year. Anytime it is on the radio it always makes her dance around, even if she is in the car actually sitting in the shotgun seat. She really likes the beat (sounds like she is rating a song on the old American Bandstand show) where as I like the words.

I don’t ever want to wake up,

Lookin’ into someone else’s eyes

Another voice calling me baby

On the other end of the phone

A new girl puttin’ on her makeup

Before dinner on Friday night

No I don’t ever wanna know

No other shotgun rider, beside me, singin’ to the radio

Terry never wears makeup, before dinner on Friday or any other time, nor does she need to. She never calls me ‘baby’ either, on the phone or any other time, just ‘Buddy.’

Other than that, I can truly relate to these lyrics. I spend a lot of time in the car and it is always so much better when Terry is beside me, listening to the radio.

Ever since our kids have grown up (or ‘growed’ up as they say in country songs) Terry has made a lot of road trips with me.  She has made even more trips with me over the last year, since she began her rapid decline due to Early Onset Alzheimer’s Disease.  Any time I just run to the store to pick up milk or bread, Terry goes with me.

During those car rides we listen to music, something that is good for Terry. Something she can really enjoy. It is usually country music, since that is what she prefers, and Tim McGraw is one of her favorites.

Tim McGaw’s father was one of my favorites.

Tim’s father was Tug McGraw, a professional baseball pitcher with the Mets and the Phillies, who had a happy-go-lucky personality and an off center way of looking at things. He was one of the first persons to put things in perspective by saying “Ten million years from now when the sun burns out and the Earth is a frozen ice ball, nobody is going to care if I got this guy out.”

He had a very unique outlook on life, a life that was cut short at age 60 due to a brain tumor.

In my 35 years on the job, one of the best days I ever had was when I got to sit alone with Tug McGraw for over an hour, just “shootin’ the shit” as they say in country music.

It was 1990 and Tug was retired from baseball and working for a Philadelphia TV station. He would do “fluff” pieces or interview local amateur athletes that would be spotlighted on Action News.  We had a wrestler from South Jersey, a suburb of Philly, who was ranked #2 in the nation and was going to compete in a national all-star match in Philadelphia.

After a month’s worth of me pushing the story (begging) Channel 6 sent Tug out to interview the wrestler. The problem was Tug came from home that day and the camera crew came from the station and they were waiting for each other at different spots on campus. Remember, this was 1990, cell phones only excited in Rolls Royce’s. They were the size of a brick and they were called “Mobiles” and since neither Tug or the camera crew were driving a Rolls that day, they couldn’t contact each other.

But the unsuccessful rendezvous between Tug and the camera crew made for the perfect day for me. I met Tug when he arrived on campus and while we waited for the camera crew to show up I got to spend a good portion of the morning talking with the guy who helped the Phillies win the World Series 10 years earlier.

We talked about the 1980 National League Championship series with Houston, which is said by many to be one of the greatest series of all time. Almost every game went extra innings and Tug pitched in all five games.

I asked Tug about a perennial all-star pitcher who only spent one year with the Phillies in the middle of his career.  “He always had a cold, sniff, sniff, if you know what I mean,” I remember Tug saying, telling me the guy had a drug problem.

Tug told me that he was a marine, something I never knew, a marine that was not in favor of the Viet Nam war.  And how he invented the green baseball jersey he first wore in spring training on St. Patrick’s Day.  He told me he’d do anything, but was a little embarrassed after reading “Casey at the Bat” with the Philadelphia Philharmonic Orchestra.

He even showed me how he threw his famous screwball.

That truly was a great day at work.

Now, my best days working are when I am traveling for work and Terry is with me, my shotgun rider.  Sitting next to me listening to the radio.

In Tim McGraw’s song, he states how he doesn’t want any other shotgun rider, sitting next to him, singing to the radio.  I know how he feels.

Until next time, Terry will be with me on my road trips, listening to the radio, as my shotgun rider.

Bud

Can’t Stress Enough My Joy of Caregiving

By Bud Focht

Hi, my name is Bud and contrary to popular belief, I do not need a break from caregiving. I don’t want a break from caregiving. I love caregiving.

Don’t get me wrong, I don’t like the fact that I NEED to be a caregiver, in fact I hate it, but I accept it as my calling.

I have now been a caregiver for 16 months, since my 53-year old wife Terry was diagnosed with Early Onset Alzheimer’s Disease.

I have read where like me, caregivers devote a significant amount of time and energy to the person with Alzheimer’s disease. Too often, caregivers do not recognize their own needs, fail to do anything about them or do not know where to turn for help.

Not me.

I also read that caregivers are more likely to experience high levels of emotional stress, depression, anxiety, impaired immune system response, health impairments, lost wages and depleted finances than non-caregivers.

Okay, maybe me on some of those.

I read that some warning signs of caregiver stress include:

-denial about the disease and the effect on the person who is diagnosed.

Nope.

-anger about lack of treatment options for Alzheimer’s.

Some.

-social withdrawal from friends or activities that once brought pleasure.

Definitely!

I used to go to a lot major league baseball games with my friends, about 20 a year. I saw a no-hitter in a playoff game, I saw a World Series victory. Last year I think I went to just four games. This year, zero.

I used to frequent the local taverns with my friends a couple of times a week. Now, maybe two or three times a month, and only on nights when Terry is out with her Bible Study group.

My friends recently made their annual trip to New York, to walk around the city that never sleeps and to take in a Yankee game. For the second year in a row, I had to decline. I could not justify spending a great day with my friends instead of spending the day with my wife Terry.  Terry needs me. She always tells me how much she likes being with me, and she thanks me for keeping her safe.

She used to just say that (thanks for keeping me safe) after a day at the beach, when I hold her hands when we go into the rough surf. But she is saying it more often now. She realizes she cannot survive on her own anymore.

My friends and family members tell me I need some time away from my caregiving duties for my own sanity, for my own well-being. They tell me I need a break. They have even volunteered to stay with Terry so I can go out or have their wives stay with Terry so I can go out with them.

I appreciate that very much, I really do, but I always decline. For now. I realize in the future I may have to take them up on their offers, but not now. Not yet.

There are too many times when I HAVE to be away from Terry due to work. I can’t be away from her just to have a good time. She needs me. Terry can no longer function on her own.

The truth is, if I am not with Terry, I am worrying about her, if she is okay, if she is happy. It is more stressful for me to be away from her than it ever is for me taking care of her.

Now, when I go to work, I make the 30 minute drive home at lunch time to be with her, to make sure she is okay, content.  Simply calling her on the phone to make sure she is okay doesn’t quite cut it.  I am like ‘Doubting Thomas.’ I need to see it.

I read that some warning signs of caregiver stress include anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and health problems.

It is true, I am anxious. I am full of mental distress, uneasiness, because of fear of what the future holds. I am depressed. Wouldn’t you be if you were told your best friend, your partner, your soul mate, the mother of your kids, has a disease that has no cure and is only going to get worse, now on almost a daily basis? I am exhausted. I have been taking care of myself for a long time now, but taking care of two people is exhausting. At least when I was taking care of the kids I had my partner to help.

I have been a light sleeper ever since the kids were born. They could sneeze or fart in the middle of the night and I would hear it. These days I wake up five to 10 times a night, and not just because my prostate is the size of a softball. I just want to look at Terry, see her pretty face, relaxed and carefree, as she sleeps.

I don’t think I am irritable, and if you say that I am I’ll punch you in the face.

I don’t think I suffer from a lack of concentration. My concentration level is about the same as it always has been.

Now, where was I? I seem to have lost by train of thought. Oh yea, Health problems. So far, so good. Healthy as a horse. A fat horse, anyway.

No, I don’t think I need a break from caregiving. Not yet, anyway.

I can’t get enough of being with my best friend, my wife. I realize our time together is short. It won’t be long before her awareness gets to the point where she no longer…

Well, let’s just say there will be a day in the not-to-distant future where we might not recognize each other.  When that day arrives, I will let others help take care of her.

But until then, I am spending as much time with my wife as I can.

I miss the ballgames and the tailgating; I miss the nights out with the guys. I miss spending time with my lifelong friend, my ‘brother from a different mother’.  But that can’t compare to how much I am going to miss my wife Terry.

So if I have to be a caregiver to spend time with my wife, so be it. I can handle it. It is a little stressful, yes. But that is a small price to pay to be with the greatest person I have ever known.

So thanks for everyone who wants to help in my caregiving efforts. I really do appreciate it. But I am not ready to share those responsibilities. Not yet.

Until next time, I will not be taking a break from caregiving. It’s what I do. It is my calling.

Bud

I Need More Sand

By Bud Focht

Hi, my name is Bud and I need more sand.

When I was in college in Miami and would go to the beach a major no-no was getting sand on someone’s blanket.  When you are covered with baby oil or wearing Bain de Soleil “for the San Tropez tan” the last thing you wanted was sand sticking to you as you were trying to catch rays.  (My major in college was ‘Solar Epidermal Radiation’ which translates to ‘getting a sun tan’)

While staying at a summer house on the Jersey Shore a cardinal sin was tracking sand into the house. You had to use the outdoor shower before entering the house after a day on the beach.

When I was a kid reading comic books, it seemed the bully would always kick sand into the face of the meek and mild character.

Sand used to be something you didn’t want stuck to your skin, in your house or in your face. But now I can’t get enough of it. I need more of it.

Sand is a granular material composed of finely divided rock and mineral particles. It is smaller and finer that gravel and coarser than silt. The sand at the beach was created over the last half billion years by various forms of life, like coral and shellfish. The whiter the sand the more limestone.

Mathletes will tell you that the amount of grains of sand on a beach is a finite number, meaning it can be calculated. Although it is a pretty large number, it is not an infinite one.

I realize that now and I need more sand.

Going back as far as ancient Egypt, people used sand in hourglasses to measure the passage of time. Hourglasses can be reused indefinitely by turning them over once the sand runs out.

If only.

Christopher Walken’s character Bruce Dickinson in the famous Saturday Night Live “cowbell” skit, when he is Blue Oyster Cult’s music producer for the song Don’t Fear the Reaper, says “Guess what? I got a fever, and the only prescription is more cowbell.”

Well, the only prescription that I need is for more sand.

I need more sand for my wife Terry’s hourglass. I am afraid it cannot be turned over. When I picture Terry’s hourglass it has wings on it, depicting that her existence is fleeting, and that the “sands of time” are running out.

Sixteen months ago when Terry was diagnosed with Early Onset Alzheimer’s Disease, the sand began running through her hourglass faster and faster. I can’t seem to slow it down. No one can. So I need more sand.

During the summer Terry and I enjoy going to the Jersey Shore as often as we can. We take long walks, catch some rays, and take a dip in the cool, refreshing ocean. And we put our toes in the sand.

We often see parents at the beach with their kids collecting sea shells.  I think I might start collecting sand. Not to make a castle, but to try to put back into Terry’s hourglass.

This Thanksgiving I again have to travel for work. As in the past the travel is usually to a very nice place. Last year it was San Francisco, the year before it was Puerto Vallarta, Mexico, a common port-of-call in the 1970s and ‘80s for TV’s Love Boat. Trips to these beautiful places are wasted on me, since all I really want to do is be with Terry.

This year the destination is Cancun, to an “all-inclusive” resort. I dreaded going, leaving Terry behind. Terry can no longer manage on her own so my kids would have to take care of her while I am gone. They have to take time off from work and from their busy lives to be with her, and that bothers me.

So this year I bit the bullet and pulled the trigger (a mix of metaphors the NRA would approve of) and I bought Terry a plane ticket to Cancun and a very expensive admission to the resort. Normally I would never spend thousands of dollars for such a vacation (since it isn’t really a vacation, I have to work while there), but I had no choice. I may go in debt for a while but it will be worth it. Taking Terry with me will give me peace of mind, being able to take care of her and knowing she is safe. It will also give Terry a great week, hobnobbing with the rich and famous at this luxurious resort.

And most importantly, it will give us more sand. Maybe not for the hourglass, but at least for our toes.

Until next time, hope the sand runs slow through your hourglass, and your toes.

Bud 

Don’t Blink

By Bud Focht

Hi, my name is Bud and I can no longer afford to blink.

No, it is not because of the recent increase in the price of contact lens solution.

Blinking is one of those unconscious processes our bodies do that often go unnoticed.  It keeps the eye moist and blinking protects the eye from foreign bodies (as long as they are smaller than a stick or a finger).

A blink takes about a tenth of a second, but when you blink you miss so much. Things happen so fast these days.

I blinked, and July was gone. I blinked, and summer was gone.  I blinked, and so much of my wife Terry was gone.

Since Terry was diagnosed with Early Onset Alzheimer’s Disease, so many things that she not only could do, but could do well, are gone.

The most recent one, which may seem trivial in the larger scope of things, hit me hard. Terry forgot how to play tennis.

When I met Terry in the late 1970s she was this spunky little tennis player in her sophomore year of college. She was the number one singles player on the college varsity team all four of her years, and was a ‘local legend’ at the city park tennis courts, where she won numerous city titles.

In basketball, they are called ‘gym rats.’  The kid who is always dribbling a basketball, hanging around the gym. I’m not sure what they call tennis bums…oh, wait a minute. I guess they call them ‘tennis bums.’

Terry was never a bum (still has a nice one though) but she was a dedicated tennis player, even though she was never professionally trained. I guess you could say she was a self-taught tennis bum.

Thanks to the eternal generosity of my brother-in-law and sister-in-law I was able to take Terry and our youngest daughter and her boyfriend and their dog to the Blue Ridge Mountains in Virginia for a week in our own private chalet in the Shenandoah Valley.

Terry and I were celebrating our 33^rd anniversary while the kids were celebrating their fourth. Not sure how old the dog is but he seemed to have a good time.  All five of us did.

Part of the package was access to a swimming pool and a tennis court, so we brought our rackets and bathing suits, and used them.

I used to play in a tennis league back when I had knees, but have not played since I became more and more immobile. Terry hit the tennis ball around with our daughter a year or two ago, and it was like riding a bike.

Last week when the four of us were hitting the tennis ball around, Terry’s bike needed training wheels.  Terry forgot how to play tennis. 

When it was her turn to hit the ball that she had in her pocket she purposely hit the ball down on her side of the net, like she was serving in ping pong. Seeing that was probably what it was like for Glen Campbell’s family when he recently forgot how to play the guitar.

As we hit the ball around more and more it all came back to Terry and she began to look more and more like someone who was once a great player. But that little reminder of her cognitive impairment jabbed a sharp dagger of reality into my vacation mode.

I try to help Terry write in her memory book each day, to help her think about what happened that day and also for something for her to read periodically to help her remember current events. It has gotten to the point where she cannot write in the book without help. I have to ask her about her day, and when she answers I need to tell her to write that down, almost like I am dictating it to her.

Lately, Terry’s spelling, something that was always a strong suit of hers, is declining rapidly. Today she had trouble spelling the name John and Rhode Island (her home state).

A year ago Terry was still driving. Now, Terry cannot be left alone unless she is home, and even there for less than a day.

Where did that last year go?  Where did my best friend and partner go? I must have blinked.

Of course I’ve known all along that Terry’s condition was going to continue to decline. Knowing it and dealing with it are two different things.

That is one of the reasons I wanted to share our recent vacation with our daughter and her boyfriend. It has been 16 months since the doctors told us it was ‘Bucket List’ time.  I want Terry to be checking off things on that list with as many members of the family as possible, as often as possible. As soon as possible.

Before I blink again.

Until next time, do as Kenny Chesney sings:

“Best start putting first things first. 'Cause when your hourglass runs out of sand you can’t flip it over and start again. Take every breathe God gives you for what it’s worth. Don’t Blink.”

Bud