May Day

By Bud Focht

Hi, my name is Bud and yesterday, Sunday, was May 1, and in many parts of the world was celebrated as May Day.

I celebrated May Day yesterday because, due to rain, I had the day off.

May Day is an ancient spring festival, involving dancing around the maypole, singing and eating cake.

I’m thinking it must be a big deal if it involves cake.

In olden times towns and villages would celebrate the coming of spring on May 1. Most farmers had already planted their crops by May 1 so it was a day the laborers could have off from work to celebrate the end of a long, cold winter, and the promise of more pleasant days to follow.

May has always been my favorite month. My work load begins to ease in May and my hours worked per week begin to decline.  Most importantly, May brings with it the anticipation of the arrival of summer.

I have always been a boy of summer.

That is reason enough to celebrate May 1. May Day.

There is also another Mayday. One that, unfortunately, I am becoming more and more aware of.

Mayday is an emergency procedure word used internationally as a distress signal. It is used primarily by sailors and pilots, and always said three times for emphasis (Mayday, Mayday, Mayday). It comes from the French word m’aidez which means “help me.”

There have been plenty of times in the last two years, since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, that I wanted to call out Mayday-Mayday-Mayday. In the last 25 months there has been plenty of distress. Plenty of times when I didn’t think I was going to make it. Plenty of times when I asked the Good Lord to “help me.”

May Day has also become the International Workers’ Day, a day to celebrate not only the hard work performed all year long but the eight hour work day. The balance of eight hours of working, eight hours of sleeping and eight hours of leisure. It commemorates the Haymarket Affair, which occurred in Chicago about 130 years ago, a peaceful rally in support of workers striking for an eight hour day that unfortunately turned violent.

My wife Terry worked for over 30 years in a variety of jobs. When we first got married she taught a 6am aerobics class at the local YMCA. For the life of me I could not figure out why people would pay to take a fitness class at that ungodly hour. I was happy that Terry got paid to lead that class, however.

That aerobics class grew into a full time job at the “Y” working with youngsters, teaching gymnastics to toddlers. “Gym-Jam” it was called.

That was the greatest job for us. The “Y” was right down the street and with the free day care they had, our kids practically grew up at the “Y”. It was a great atmosphere for them and the day care room was literally right across the hall from the gym that Terry called her office.

During the summer Terry ran the YMCA Sports Day Camp. Basically she got paid to play with kids outside all summer. Again, it was great for her and our kids.

But, as I have learned with too many things over the last two years, all good things have to come to an end sooner or later. Too many sooner. Terry was so well liked at the “Y” and did such a good job that they promoted her, to a different “Y” and to a different job, one that involved more money but also more responsibilities. It was also a job that she did not enjoy. It was more administrative and management duties and less hands on with the kids.

After the “Y” Terry, at different times, taught physical education and a computers course at a grade school, she was a postal carrier (what we used to call a Mailman before the age of political correctness), a grade school athletics director and a track & field coach, and later worked at the shopping mall at a Sears. (She never could find out for me what the people at Sears ever did with Roebuck)

For the past several years she worked in a doctor’s office where they help people lose weight and keep the weight off. The running joke in the office was that Terry was the “after” picture in the “before and after”, since she weighs in at a whopping 102 pounds.

But I am afraid Terry’s working days came to an end last year. She could no longer perform the duties she once was hired to do. Her cognitive impairment continues to worsen.

The worst part about Terry not working is not the lack of income, but the lack of input. Getting out of the house and interacting with others was so good for her. The brain is a muscle and it needs to be exercised. Working was very good for Terry.

This May Day, yesterday, was very good for Terry.

On this May Day, while others were honoring the working class and celebrating the arrival of spring, we were honored with guests and celebrated their company.

I had the day off due to bad weather and Terry and I were enjoying the company of one of her brothers and his wife, who were visiting, along with our son and his dog.

It sure beat working!  What a Great May Day it was!

May 1 is also the feast day of St. Joseph the Worker, a carpenter, and the Catholic patron saint of all workers.

Terry’s brother is somewhat of a carpenter. He is a university chemistry professor by trade, but is very handy with his large assortment of tools. He has done numerous construction jobs on our house and on this May 1 visit brought us a “project” he had been working on.

A kitchen pantry that he made for us is now the most expensive thing we have in our house. A solid oak kitchen cabinet that will truly become a family heirloom.

Many people were complaining about the rain on May 1 this year, but that is something we never do around our house. When our kids were little they always liked it when it rained in the spring because they knew that meant the games would be rained out and I wouldn’t have to work. I would be home.

This May Day I was home, enjoying guests. It was truly a great day to celebrate.

Until next time, hope you had a great May Day, with or without rain, and hopefully will have no reason to cry out mayday, mayday, mayday.

Bud

P.S. parts of this blog were taken from a blog I wrote last May, in case some of you with good memories thought you were experiencing déjà vu all over again.

Work Ethic

By Bud Focht

Hi, my name is Bud and I just spent eight hours on a Saturday working. That is like saying water is wet. The sky is blue.

The problem is my son was visiting my wife Terry and me today, a week before he moves away for his job promotion. I was too busy to visit with him as much as I wanted because I was working, but at least he got to spend some quality time with his mother.

My oldest came home today as well. She also came home to spend time with her mother, as she always does on weekends. She took her mother shopping for clothes while I worked.

My wife Terry had a great day today with her two oldest children. I know because she has told me about a dozen times in the last two hours.

She tends to repeat herself these days, two years after being diagnosed with Early Onset Alzheimer’s Disease.

Back to my work day today. I have always prided myself on my strong work ethic. It is a trait I learned from my father and grandfather and I am happy to say I see a lot of in my three kids.

Today I was able to work while the kids were with my Terry. Today I was able to concentrate on my job.

But lately I am afraid I have not been able to concentrate on my job as much as I should. Lately I have not had the best of work ethics.

For the last 38 years, since I graduated from college, during the months from September to June I have worked six or seven days a week.  

A lot of my friends are big college football fans. I never got into it as much as they did because I worked every Saturday when the majority of the college games were being played.

Over the last 35 years I have worked an average of  70 hours a week during those nine plus non-summer months.

And I wore that as a badge. Something to be proud of. Something to hang your hat on.

The coaches and athletes seem to admire it when they see you coming out of the gym late at night on coming in early on the weekends. They put in a lot of hours and they feel a bond when they see you doing the same thing.

I enjoyed my career and didn’t mind working the extra hours needed to do my job.

That is, until the kids started growing up. Missing softball and Little League games, soccer games, school plays and track meets, that was tough. But I had a work ethic. It was important to provide for my family the best way I knew how. 

It just so happened that my chosen profession required a lot of nights and weekends during the academic school year. And working games that I could not get out of, not even to attend out of town weddings and even some funerals. (The only home basketball game I ever missed in all my years was to attend my father-in-law’s funeral. I worked a home baseball game the day after my own father passed away.)

So many family functions I had to miss because of my job. My career. But that stops now.

Now I find myself taking long lunches when my schedule allows. Leaving work early when my schedule allows. Working from home instead of the office when the schedule allows.

But this lack of work ethic is not about ‘me’ time.

It is not to go play golf. It is not to go to the bar. It is not to try to enjoy my life a little more. My reasoning is somewhat eternal.

I believe that when we die we will be judged on what we did and did not do with our lives. And that judgment will determine where we spend eternity.

I don’t think I am alone in this belief.

Personally, I think I will be judged more for how I did as a caregiver for my wife, than I will on how well I did my job, or how many hours I put in at the office.

I think what I do for my wife will out-weigh what I do in my career.

Obviously, I still have to work. A priority is certainly to keep a roof over my wife’s head and food on her plate. So I can’t just retire.

Although, I’m getting to the age now where many of my friends are getting close to or are actually retiring. I am so jealous.

But with me, there is still a mortgage to pay off. There is insurance we need and a prescription plan I need through work.  (I only pay $20 a month at the drug store for two prescriptions. One of the drugs does not have a generic brand, so if I did not have insurance I would be paying over $400 a month for it).

Although that argument about the prescriptions doesn’t hold as much weight as it used to. I am afraid the meds Terry takes just aren’t cutting it anymore. I will keep giving them to her but I can tell the “additional two years” the doctors said they would give us are about up.

My wife Terry’s Alzheimer’s is in the middle stages now and she can no longer do so many things. One of them is entertain herself.

Left alone while I am at work is tough on Terry. She can only watch so many music videos. The chores she can no longer do far out-weight the ones she can still do.

That is the reason for my work ethic decline. I need to be home more. I need to be with her more.

But Thank God for nice weather again.

Terry has been outside the last several days while I am at work and she is beginning to enjoy herself again. She is fascinated by seeing airplanes and helicopters in the sky. It amuses her. The fresh air is great for her, and our backyard is full of birds, squirrels and rabbits for her to watch.

The great outdoors have been entertaining her. Winter ended just in time.

When I am home we are outside more now, taking walks, having a catch out back and going to the park to shoot hoops.  Terry loves this and is enjoying her life again.

And that makes me happy. A wise old man once said (or was it on a coffee mug, I’m not sure) “A happy wife, a happy life.”

No truer words were ever spoken (or written on a coffee mug). When Terry is happy, I am very happy. My life is happy.

So I am afraid my work ethic reputation might take a hit, but I don’t mind.  I will still do my job to the best of my ability. I just won’t spend as many hours away from home.  I can’t.

Being a caregiver is the most important job I ever had.

I have worked at my present job for 35 years, and my career pays the bills, but being a caregiver to my Terry I believe will be my legacy.

It is also what I will be judged on. Having a strong work ethic is important, and I am glad our children all have one. It is essential to survive in this world.

But now I have to help my wife survive. And that may be essential to my afterlife.

Don’t get me wrong, I am not trying to get into Heaven by being a good caregiver.

I am trying to give Terry a heaven on earth as long as I can, until her Alzheimer’s makes it a hell on earth for both of us.

Until next time, hope you can enjoy doing what you will be judged on.

Bud

Sports, Stupid

By Bud Focht

Hi, my name is Bud and my shoulder is sore from throwing and my legs are sore from chasing down rebounds.

And I feel great about that.

Since my wife Terry has moved into the middle or moderate stage of her Early Onset Alzheimer’s Disease, her reasoning has become unusual, to say the least, and she’s had changes in mood and behavior that she has never had before.  

I don’t feel too great about that.

But almost as bad as that is the fact that her communication skills continue to diminish.

It is almost impossible for anyone to have a conversation with Terry on the phone without me being there, and lately it is becoming harder for her to communicate with even me on the phone. 

When Terry was first diagnosed two years ago the team of doctors and graduate students at the clinic all gathered in a room with us to give us the news. When we walked in and I saw a box of tissues next to our seats I knew that was never a good sign. 

While explaining everything to us, the Doctor said that when communication skills break down, it is important that I find leisurely physical activities that Terry can still enjoy.  Playing a musical instrument, painting, gardening, dancing. Physical things that we have enjoyed in the past.

To try to lighten the mood in this somber meeting room, I turned to Terry but said loud enough for everyone to hear “He said we have to have more sex!”

When emotions are running high it is easy to get a laugh.

And now that it is happening I remember that talk we had about the physical activities. Unlike many of her siblings, Terry never played a musical instrument. Terry and I were never much of a dancing couple. She was never a knitter. One of Terry’s sisters bought her these colored pencils and adult coloring books (when I heard ‘adult’ I mistakenly thought they would be risqué pictures) but Terry wasn’t into it, risqué or not.

I had to find things that Terry and I can enjoy doing. We still take long walks when my schedule and the weather allow. But that wasn’t enough. I had to get her off the couch and away from the TV.  I try to give her chores to do, folding laundry and washing dishes, but she really can’t do much more than that anymore on her own.

And then one day it hit me.  Sports, stupid!

Now that the weather is turning nicer, I brought out the old basketball and took Terry to the park to shoot hoops.

She was smiling from ear to ear.

Terry grew up in a house with a backboard and rim nailed up to the garage and she loved to shoot hoops when she was a school kid. Being five foot nothing, weighting a hundred and nothing, she never played organized basketball but with the neighborhood kids and the many siblings, she has many fond memories of playing basketball growing up.

Besides, she can really shoot. She can make more foul shots than I can. Sports are always more fun when you are good at them.

We also have this softball sized ball that is much softer than a softball, and we have been having a catch with that in our back yard.

More ear to ear smiling.

And I have to admit I was smiling pretty wide myself. Seeing Terry smile is something I no longer take for granted. With the advancement of the disease she is not as happy-go-lucky as she used to be. She worries. She gets nervous.  She gets scared. Most of the time over things that are not real. Sometimes it is having to watch me go to work.

But having a catch with Terry was great. It got her out of the house, moving around. And for me, it was like old times. I threw a ball every day for years in my teens and 20s, playing high school, American Legion and college baseball. Especially in college, when the South Florida weather allowed us to play all year. The month of December was the only time we did not play.

And now that spring weather has arrived Terry and I are going to play. We’ll have a catch in the back yard. We’ll shoot hoops at the park or nearby school yard. And we’ll continue to take our long walks.   It won’t be long before we will be taking our walks at the Jersey Shore.

But I try not to look to far forward. I love the summer but with Terry’s new symptoms I hate to see what she will and will not be able to do in the months to come.

My friends tell me I have to look forward, to figure out a plan on how I am going to continue to care for Terry and continue to work. I won’t be retiring any time soon, so decisions are going to have to be made.

But for now, I have decided that we need to play more sports.

Next I have to come up with a physical activity that Terry can do without me. We had a basketball hoop in our back yard when the kids were small but that is long gone.  I never thought I’d put another one up but I might have to look into that.  Or maybe she can work on her ball handling, her dribbling.

We’ll come up with something. All I know is that it will have something to do with sports.

Until next time, hope you have a sporting time.

Bud

The Next Stage

By Bud Focht

Hi, my name is Bud and I am not quite sure if I am ready to take my caregiver career to the next level, but it appears I have no choice.  I got the call. I’m going to The Show, as they say in minor league baseball. I’m going to be on the Big Stage, as they say in acting.

The Big Stage because I am afraid my wife Terry’s condition has progressed to the next stage.

‘Progressed’ is a curious word to use there. Progress usually means something good, something positive.  This is anything but.

I am sorry to say that Terry has advanced from the mild to the moderate stage of her Early Onset Alzheimer’s Disease.  I always knew this day would come, although I prayed that it wouldn’t.  It was inevitable. The meds she has been taking could only slow it down for so long.

In everything I have read, Alzheimer’s Disease is classified into stages. Some break it down to seven stages, some to three stages. They all have one thing in common. Each stage gets a hell of a lot worse. And each stage requires a hell of a lot more from the caregiver.

According to the medical journals that classify in seven stages, Terry has moved from stage three to stage four.

Other materials I have seen keep it to a basic three stages; mild/early is stage one, moderate/middle is stage two and severe/late is stage three.

If we are going by the three stage approach, Terry has moved from stage one to stage two.

This is the longest of the three stages. This is when Terry’s happy-go-lucky personality begins to change. She begins to get scared, frustrated.  Or angry.

The other day I came home from work at lunch time, as I always do for the last year or so, and Terry was crying and she started yelling at me that she hates me because I leave her alone all the time.

All the time?

I leave for work around 8 or 8:30 in the morning and am back home at 12 noon to spend lunch with her. I stay as long as I can, usually until 1 or 1:30 and I am home from work at the end of the day by 5pm. I often work at night and on weekends but fortunately this time of year I can do a lot of that from home.

When I am not home I have lists of things for her to do, to keep her busy, entertained. Do the dishes, wash up, brush your teeth, dress for the day, watch TV, listen to the radio, read the paper, call Bud.

Later that day and the next day Terry was very apologetic about what she said and told me over and over the way she really feels about me. She just really does not like being alone. More specifically, she does not like being without me. She trusts me, and needs me, to make more and more of her decisions.

I realized that it was not Terry yelling at me but the disease. I think the last time Terry yelled at me was in the 1980s. I think the last time she told me she hated me was when she was in her 32^nd hour of labor with our first child’s natural childbirth. (She didn’t really say it but I could see it in her tired eyes).

Thirty-some years later, she has begun acting in unusual ways, textbook behavior according to the journals. I realize this is due to damage to the nerve cells in her brain and it makes it difficult for her to express her thoughts, to perform routine tasks.

Some tasks about as routine as they get.

Thirty-some years ago I lived in New England for a while and there was a local plumbing business that had a controversial slogan. On the side of their trucks and on a billboard in town it said “Need Help in the Bathroom?”  Being in my early 20s I thought it was funny but after countless letters to the editor and talk radio show complaints, the company changed the slogan. Basically, they just erased the “in the Bathroom” part.

That is the part that I wish I could erase. The fact that Terry now does need help in the bathroom.

Not all the time, mainly first thing in the morning, but enough times to make me worry about our road trips. Fortunately the road trips are done for this year, and who knows what next winter will bring. I don’t even want to think about that.

For now we will try to make the most of the spring and look forward to summer when I am home even more.

The next stage. The ultimate for caregivers like me. Of the three stages this is the longest and probably the last one that I can handle on my own. I am afraid the final stage is out of my league.

Until next time, hope you can enjoy the next stage of your life.

Bud

Sun Upping

By Bud Focht

Hi, my name is Bud and one of the best days of the year for me is coming up this Sunday. Day Light Savings. The day we turn the clocks forward. There is nothing better than delaying sundown.

I have been doing a little reading on Sundowning lately, but I can’t find any information about Sun Upping.

Sundowning is a symptom of Alzheimer’s Disease and other forms of dementia. It is a psychological phenomenon associated with increased confusion and restlessness. It is common with Alzheimer’s patients for confusion and agitation to worsen in the late afternoon and evening, or as the sun goes down, hence the term Sundowning.

It has been two years now since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, and I am afraid she is creeping toward the mid-stage part of the disease. I need to help Terry with just about everything these days.  The mid-stage and advanced stages are when Sundowning is more common.

But I have noticed that is not the case with Terry. It seems as the day goes on Terry is more alert. It is in the morning when she sometimes has ‘accidents’ and does not make it to the bathroom in time. It is in the morning when she washes the dishes but doesn’t know where to put them after she dries them. It is in the morning when she is the foggiest.  

But in the afternoon when I come home for lunch she is alert and in the evening after dinner she can still enjoy and even solve some puzzles on the Wheel of Fortune.

She doesn’t suffer from Sundowning. She suffers from Sun Upping.

I am thinking that Sundowning is common with Alzheimer’s patients because most of them are in their 70s and 80s. Terry was just 54 years old when she was diagnosed with Alzheimer’s.

There are quite a few things I have learned to do as a caregiver to help Terry through her day.

I give her a list of things to do and it is almost always the same. Keeping a regular schedule helps Terry a lot. I have found things that she can still do, things she enjoys doing, and that is what we do.

Terry loves to go for walks and we do that as often as we can. They say Sundowning has to do with sleeping problems but Terry sleeps well at night. A change in the body’s circadian rhythms, or the sleep-wake cycle, can cause Sundowning, so they say to keep your home brightly lit in the afternoon and evening to help reduce the symptoms.

In Terry’s case, she loves to close the blinds when the sun goes down. I kid her that it is her favorite part of the day because she always asks me around 5 of 5:30 if she can close the blinds.   According to studies published in Clinical Geriatrics people who were exposed to more light late in the day showed less agitation. Light exposure helps your body recognize the difference between day and night.

I know I get agitated in November when it gets dark at 5pm!

Next week it will not be until 6:30, 7pm when Terry will ask about closing the blinds. I look forward to when it is 8:30 when the sun goes down.

Stress, frustration and fear play large roles in Sundowning. Now that our road trips are over there is nothing for Terry to stress about.  There was nothing really to stress about, but the trips were out of her routine and that worried her sometimes. But once we made the trips she always enjoyed herself.

She is comfortable in our home and if she is not at home she is with me, and she is always comfortable with me. Soft music playing in the house is suggested to create a calm environment.

Terry has music on all day. Either the radio if she is reading her Bible or the television watching Country music videos. The other day when I came home at lunch time she had both on.

I had the television muted before we went to bed the night before and forgot to unmute it. So when Terry put the TV on it was silent and of course she had no idea how to unmute it. So she kept the TV on for something to look at and she listened to the radio.

As Terry’s condition worsens, there will be more and more problems we will have to overcome. But so far, Sundowning is not one of them.  Not yet, anyway.

And now that the sun will be going down a lot later in the day, it marks the time of year when my hours at work ease up a bit. I will still be working every weekend until June, but half of those weekends I can work from home. I still work some evenings, but will be getting home at 8pm instead of midnight.

Terry and I survived the winter and are looking forward to the spring. We are looking forward to the sun not going down as early.

Until next time, hope the sun doesn’t go down on you.

Bud

Time

By Bud Focht

Hi, my name is Bud and contrary to what Mick Jagger said, time is certainly NOT on my side, no its not.

I’ve heard for years people use the old expression “there just isn’t enough time in the day” and it’s true. It is also true that there just isn’t enough time in the week, or the month.

Not enough time to write my blog. At work I have no time to spare to write these days. I used to write it on my lunch hour. Now my lunch hour is spent driving home to be a caregiver.

When I am home with my wife Terry I can’t find time to write. I am usually tending to her. Entertaining her, helping feed, bath and clothe her. Hanging out with her. I don’t want to take time away from that to write. Sometimes I want to, I just can’t.

This time of year I work about 70 hours a week, which includes every weekend and many nights.  A large part of that time is spent on the road and the good news is that when I do travel by car I can take Terry with me.

We just made our annual trip to Niagara Falls and it was great. The warmest and sunniest it has been in Western New York since we began going there five or six years ago.  Every year I work in Buffalo on Friday and 20 minutes away in Niagara on Sunday so on Saturday we go to Canada and visit the Falls.  This year it was about 35 degrees warmer than what it was last year when we were there. Very sunny. We got to see a rainbow in the Falls.

The best part about the trip was that for four straight days Terry was never out of my site.

The bad part of working so many hours this time of year is that most of the time I am working is time spent apart from Terry. That bothers me. Terry’s independence is dwindling. When I am not with her, her quality of life is declining. It is hard for her to entertain herself.

When Terry is home alone she enjoys watching country music videos on TV. They are short, three minute stories she can follow and they are set to music. Music has been so important for Terry since she was diagnosed with Early Onset Alzheimer’s Disease.

It is input her brain needs. And the songs can bring back memories.

Terry has been sleeping in lately, not getting up until 10 am or later. On cold or dreary days she sometimes sleeps till noon, staying warm and comfortable under the blankets.

And I love that!

First, because I am jealous. I would love to sleep in every once in a while.  I have not been an early riser since college days. (in college I was always the first one up in the morning and the last one to bed at night. I was having too much fun to sleep.)

Second, I love her sleeping in because I am more at ease at work knowing Terry is sleeping. I know she is safe and not bored or confused about anything. It is less time she has to entertain herself until I get home at lunch time and again at the end of the day.

If I am not there Terry can dress herself in the morning and fix herself cereal. She can make herself a sandwich for lunch if I am not there but I almost always am, making her soup or hot tea, two things she cannot make herself.

Terry can still wash and dry the dishes but each day the list of dishes that she no longer knows where they go continues to grow. We laugh about it when we find things in strange places.  I’m thankful that Terry’s personality allows her to laugh it off.   Her cognitive decline never gets to her the way it sometimes gets to me.

She can no longer wash or dry the clothes but she can sort them when they come off the line or out of the dryer.  But like the dishes, she sometimes has trouble remembering what clothes go in what drawers.

When I am at work I try to leave for her a list of things to do, obviously things she still can do, to keep her busy while I am not home.

In the song Time Is on My Side, Jagger sang about a woman leaving a guy, with the guy saying she’ll come running back, that time is on his side. Yes it is.

Terry’s independence is leaving her, and it is not coming back. Time is not on our side. No it isn’t.

I’ve read about how stressful being a caregiver to a spouse can be. The stress I can handle, for now. The time Terry and I share these days is great. We have grown so close and we laugh a lot.

I think the amount of time it takes is what makes being a caregiver so difficult. It is a lot like being a working single parent, time-wise, that is.  

(You can’t compare nurturing your child’s growth to trying to slow your spouse’s decline. But time-wise, being a caregiver is a lot like caring for one of your children.)

And like raising children, it is something that you wouldn’t trade for anything. Sure, I wish Terry did not have Alzheimer’s. But she does. So how can we make the best of this time?

By sleeping in, shortening the days. Shortening the time she is alone. On days that I do not have to work at night I come home at lunch time. Then I come home at the end of the day so Terry is only alone for a few hours in the morning and a few hours in the afternoon. If I do have to work in the evening, I come home early, pick Terry up and she is with me. And sometimes Terry hangs with our son or one of our daughters while I work nights or weekends.

That happened recently. I had a long day in the gym, two different teams competing, too long a day for Terry to be there, so she stayed at home, where she feels comfortable, safe. Our oldest daughter and our son both came home that day, took Terry for a walk around the park, fed her her meals and basically just hung out with her.

That night and the next day all I heard from Terry was “We have great kids.” And we do.

We have that on our side. We just don’t have time on our side. No we don’t.

When Terry was first diagnosed in the spring of 2014 the doctors said it was good to start the medication ASAP because it can give us an extra year or two.  Well, it is coming up on two years since Terry began taking memantine and donepezil.

This time of year I used to soo much look forward to spring, as most people do I guess. Now I look forward to lunch time to see Terry. I look forward to the end of the work day to see Terry. I look forward to our road trips together. I no longer look to far forward.

Sometimes I wish I could call “Time!”  Stop the clock. Take a time out.

Time is flying by and the future is not a pleasant one. If only time could stand still for a while. But it can’t.

There are two theories about what time is. One is that time is part of the structure of the universe, a dimension in which events occur in sequence. The other is that time is not an actual existing dimension that events and objects “move through”; it is just an intellectual concept that enables us to sequence and compare events.  That’s why you can’t travel through time.

Time travel has always been a part of people’s imaginations, from H. G. Wells to Marty McFly.

If I could control time I think I would just hit the pause button. I realize Terry is not going to get better, we can’t go back in time. But I pray that she doesn’t get worse.

Not to be confused with Mick Jagger, back in the 80s Boy George sang “time won’t give me time, and time makes lovers feel like they’ve got something real.”

Terry and I feel we have something real, alright. Dementia. We’re running out of time.

A band closer to my liking, Green Day, sang “So make the best of this test, and don’t ask why. It’s not a question but a lesson learned in time. It’s something unpredictable but in the end is right, I hope you had the time of your life.”

Terry and I, believe it or not, are having the time of our lives, at least what is left of them, because it is only going to get worse. We are certainly going to be tested.  We live in the present. We don’t look forward to the future. We don’t have enough time to do that.

Until next time, hope time is on your side.

Bud

Happy New Year

By Bud Focht

Hi, my name is Bud and like a lot of people this time of year I did some reflecting back on the last 12 months.

When a lot of people look back on 2015 they think of things like the debate over the  legalization of gay marijuana (that might have been two different debates I’m thinking of), the Pope’s visit, and the former ‘greatest athlete in the world’ going from the man on the Wheaties box to the woman on the Vanity Fair magazine cover.

Most of the reflecting I did was concentrated on how much the cognitive skills of my 56 year old wife Terry have declined due to her Early Onset Alzheimer’s Disease.

I am not going to go down the list of all the things Terry can no longer do, a list that includes many things she could still do this time last year.  Instead I am thinking of, and am grateful for, all of the things Terry still CAN do.

She can still enjoy watching her favorite television shows, even though she no longer knows how to use the remote control.  She watches reruns and still laughs at all the same parts. (It’s like when our kids were little; they would watch the same movies over and over. I think we actually wore out a tape of the Bambi movie)

Terry can still enjoy listening to her favorite country music station on the radio.  She can identify most of the singers, especially her favorites, or the name of many of the songs she hears.  It is a good thing she only listens to one station, since she no longer knows how to change them on the radio.

She still loves to go for long walks. Before the polar vortex made an appearance this month we got to take a few one-hour and two-hour walks during the Christmas break when I actually had a couple of days off. The unseasonably warm weather made it perfect for the long hikes.

Terry can still enjoy putting jigsaw puzzles together. She just needs a little help getting started.

One of the most important things she can still do is laugh. There is not a day that goes by that I do not hear her laugh. It is the greatest sound in the world.

THE most important thing she can still do is she can still enjoy life. She is happy, and she feels safe, as long as I am around.

Terry and I are spending more and more time together now. I see her in the morning before I go to work, giving Terry her medicine. I see her at lunch time, make her soup or hot tea, and I see her in the evening. If I have to travel for work, Terry goes with me. I am very grateful that I have a job that allows that.

The one positive thing that has come from Terry’s EOAD is that we have grown soooo much closer. I am very grateful for that.

Okay, maybe a little bit tooo close, like having to help her shower and get dressed. And by help her shower I don’t just mean physically helping her, but reminding her that she should shower.

But that is just part of being a caregiver.

A lot of my reflecting has been on how I have handled being a caregiver. It has had its positive and negative effects on me.

The positive is that I get to spend so much time with my partner, my soulmate. I don’t think there is a couple out there that spends as much time together as Terry and I do.

One of the negatives is that because of all the time I do spend with Terry, my social life is zero. I recently went out for about an hour to see some old friends who got together just two miles from my house to celebrate a 60^th birthday. That made it pretty easy to get out, and Terry was happy that I was seeing them. Twenty, thirty years ago we saw them all the time.

But the other night was the first time I had been out with friends in months. I just can’t feel comfortable leaving Terry by herself.  She tells me she feels safe with me, but how does she feel when I am not there?

Another negative effect is since I come home every day for lunch, I can no longer use that time to work out. Believe me, I am no body builder or cross fitter. But I used to walk every day at lunchtime and occasionally pick up a weight or two. Just things to keep the blood pumping and keep the weight off. I didn’t lose any weight but I didn’t gain either. That is, when I was working out. Since I’ve stopped working out my weight has reached an all-time high.

With the cold weather Terry has begun sleeping in lately. She goes back to sleep when I leave for work and sleeps until 10am or sometimes even later. Even though she comes from New England Terry does NOT like the cold, and she is so comfortable under the warm blankets in the morning she just stays there. It is not like she has to get up to accomplish anything.  She no longer goes to work.  She doesn’t even go to her Bible studies anymore. The few chores she still does around the house aren’t going anywhere. There is no rush to do them.

I am happy Terry sleeps in late because it is less time of the day she has to be bored. That is what I worry about when I am away from her, Terry not being able to entertain herself. Not being able to keep busy.  When I leave for work in the morning I leave a note, a list of things for Terry to do, and she does them.  But if there is no list, nothing telling her what to do, no ONE telling her what to do, she doesn’t know what to do.

Terry is back doing jigsaw puzzles again, which I am grateful for. She was doing them last winter but once spring came around she was puzzled out.  But she received a few for Christmas and with the cold weather keeping us inside she has put two together since Thanksgiving and is working on a third one now.

Over the last 12 months Terry and I have been able to travel. We spent a summer week in the Shenandoah Valley in Virginia, we spent four November days in Cancun, we visited her family in New England three times, and we visited friends at the Jersey Shore.

Reflecting back on the last year, I would have to say we did a lot. We made the most of it. And that’s really all you can ask of a year, to get the most out of it. Especially when you know, and dread, what the next years will bring.

What will come in 2016 is anyone’s guess. If this time last year you would have told me Donald Trump was seriously being considered a candidate for president, I would have thought you meant president of the Hair Club for Men.

I hope this time next year I am just as grateful as I am now for the things Terry can still do. Still enjoy.

Until next time, hope you are grateful for your 2015.

Bud