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