Memorial Days

By Bud Focht

Hi my name is Bud and Memorial Day has always been by favorite federal holiday.

There are many federal holidays I like; Fourth of July, Thanksgiving, Christmas. But Columbus Day? Washington’s Birthday? Inauguration Day? Just an excuse for some people other than me to have a day off from work.

Yes, Memorial Day is my favorite, but probably not for the right reasons.

Memorial Day was intended to be a day for remembering the people who have died while serving their country in the armed forces. It used to be called Decoration Day back in the Civil War days, when the grave sites of buried soldiers would be decorated with flowers and ribbons.

But that was a little before my time.

I realize that these heroes, who have fallen in all of our wars, deserve everyone’s respect and gratitude for their service. But we already have another federal holiday to serve that purpose, Veteran’s Day. Should we discriminate between veterans who lived and those who died? I mean no disrespect when I say soldiers are not supposed to die for their country, they are supposed to make the enemy die for his country.

Sometimes the ones who come home from war suffer more than the ones who do not.

But that is fodder for a totally different blog.

On a lighter note, to me, Memorial Day has always meant the start of summer, just like Labor Day marks the end of summer. (I just got a bad feeling by simply thinking of the END of summer. We are still a month away from the summer solstice, for Pete’s sake)

Of course, the official start of summer is when the Summer Solstice takes place. That is when the Earth’s tilt is most inclined toward the sun, on June 21. I am afraid I can’t wait that long to begin enjoying summer. I usually try to start on Memorial Day.

My 70-hour work weeks usually end around Memorial Day, as does my working nights and weekends.

And memorial doesn’t always have to mean something associated with death. A memorial can be any object that serves as a focus for memory of something.

Since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease her short term memory has gradually gotten worse and worse.  Eventually it will affect her long-term memory as well, and unfortunately we are starting to get into that area.

When Terry was first diagnosed I began making her write in a “memory book” as often as possible. It was intended to help her remember what she did that day, and when she goes back and reads it sometime in the future hopefully it would help trigger certain memories that her ‘out of service’ hippocampus can no longer help her find.

Before I had spell-checker I had Terry. I was always the worst speller I knew, and when the kids were growing up and we were helping them with their homework, it was always Terry who would act as the dictionary. I was such a bad speller I had trouble even finding the word in the dictionary. Even now, I sometimes butcher a word so bad that even the spell-checker can’t help.

But lately I have noticed that Terry can no longer spell simple words. We were making a shopping list the other day and she couldn’t spell ‘garlic’.

Terry and I recently had one last work-related road trip (last of this academic school year, anyway) and for the most part it went great. Even though I was working Terry and I were together 24 hours a day for the four days so in that respect it was tremendous.

The first day we traveled and I had to work that evening. The second day in the hotel we showered to begin the day. The third day we had an early start so while I showered Terry just washed up at the sink. The fourth day, before we began our trip home, Terry went to shower and didn’t know how to work it. I showed her, even though I didn’t have to show her just two days before. After a while when I heard the water turn off I went in to make sure everything was okay. When she opened the shower curtain, her face was covered with soap suds and her hair was dry. She forgot to rinse her face off and to wash her hair.

That was a first.

When I made a crude remark of what she looked like she got a kick out of it and laughed it off, as she often does. Thank God she has such a good sense of humor.

But it scared me.

It seems no matter how much we are enjoying life every once in a while there is a sudden reminder of the shit we are in.

Not being able to spell a word that even I can do without spell-checker. Forgetting to rinse the soap off your face or wash your hair.

These occurrences are happening more and more frequently now. I am afraid the ‘end of days’ is coming. The great tribulation. Armageddon.

And it is scary.  

Terry’s beliefs in God (she calls him by his ‘old school’ name, Jehovah), Heaven and the afterlife, along with her Bible Studies, tell her that the end is near. That Satan has taken over this world and it is only a matter of time before God pulls the plug. Remember from your Sunday School teachings Sodom and Gomorrah? How about Noah and his Ark. Things got so bad God had to step in and say ‘enough is enough’ or something like that.

Well, to be honest, I would not mind that. Not that I am suicidal or anything. But many years ago one of my kids asked me how I would like to die, if I could choose. I said I hope I am surrounded by my family and I got hit in the head with a nuclear bomb.

And I was serious. That way there would be no loved ones left behind to mourn, which in my opinion is the worst part of death. We would all go together, and, hopefully to a better place.

I would not mind if we ALL went, before Terry’s condition gets to the point where there would be great suffering all around.

Until next time, have a great Memorial Day. Remember those that left you behind, and begin to enjoy summer. Who knows, it could be your last.

Bud

Post Script

Speaking of the Summer Solstice, that is often called the ‘longest day’ due to the amount of time that day between sun up and sun down. The Alzheimer’s Association celebrates the ‘Longest Day’ by holding a fund-raiser on June 21. It is a sunrise-to-sunset event to honor the strength, passion and endurance of those living with Alzheimer’s and their caregivers. More on that later (as long as I don’t get hit in the head with a nuclear bomb before then, that is).

Mother’s Day

By Bud Focht

Hi, my name is Bud and I hope you and your family had a happy Mother’s Day.

Despite the fact that I had to work nine hours on Saturday and seven hours on Sunday, my Mother’s Day was pretty good.

Fortunately, I have great kids.

Even before my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, our three children have always gone out of their way to make sure their mother knew how much she means to them.

In our family it was never about buying a nice card or candy, but to do something to show your love for your Mother.

Anna Jarvas would have been proud.

Anna Jarvas is believed to be the person responsible for starting, and almost stopping, Mother’s Day.

Jarvas held a memorial for her mother in West Virginia back in 1908 in a church that to this day holds the International Mother’s Day Shrine.  She campaigned to make Mother’s Day a recognized holiday and within three years all US states, with West Virginia being the first, observed the holiday. In 1911 President Wilson signed the proclamation creating Mother’s Day, the second Sunday in May, a national holiday to honor mothers.

But that wasn’t good enough for Jarvas. She even tried to rescind the holiday once companies like Hallmark began selling Mother’s Day cards and candies. Jarvas was embittered by what she saw as misinterpretation and exploitation. The holiday she wanted was supposed to be about sentiment, not profit. She felt people should write their own personal letters to their mothers or visit them, express love and gratitude, instead of buying gifts and pre-made greeting cards.

She fought the commercialization of Mother’s Day by organizing boycotts and threatening lawsuits. She once crashed a candy makers’ convention in Philadelphia and another time was arrested for disturbing the peace.

When our kids were little they never got arrested or boycotted anything (except maybe some of my cooking) but they did make their own Mother’s Day cards. And I always told them that the best present they could give their mother was to be good and don’t make me or their mother yell at them that day.

Over the years I have almost always had to work on Mother’s Day, so it was always up to the kids to show their mother a good day. This year was no exception.

All three came home on Saturday to make Terry a nice brunch and later a fine dinner. They spent time with her and had a great day. On Sunday my son and his dog picked Terry up and they enjoyed a nice walk in the woods and around the ball field where I was working.

Spending time with her children is the best way Terry can enjoy her day.

Since the kids graduated from high school Terry hasn’t really seen them that much. Certainly not as much as I have been lucky enough to do.  When the kids were growing up I was always the one away from home at work, while Terry either had the kids with her at work or she was home with them.

All three of our kids went to college where I work and while there all three worked for either me or for my secretary. I saw more of my kids when they were in college than I did when they were in high school and living at home, which was great.

But it was also tough on Terry. I would see the kids so much that I often forgot that Terry was not seeing them, and she missed them.  When the two oldest were at college the youngest was still at home so it wasn’t too bad, but when the youngest went to college and the oldest were living on their own, the empty nest was sometimes lonely for Terry.

That is even truer today, now that Terry doesn’t really work much anymore. She is home alone more now than she has ever been in her life, and the worst part is now that she has the time for leisure, she can’t really appreciate it.

It is tough for Terry to amuse herself, to take advantage of the leisure time. She can’t go anywhere, she no longer finds enjoyment in reading or even watching television, except for sports.

Terry used to read books, but now she can’t. By the time she finishes a chapter, she cannot remember what happened in the previous chapter. Even watching movies or television shows, it is hard for her to follow the plot.

But sports are the saving grace. When you watch sports the score is almost always on the screen, so she doesn’t have to try to remember who is winning. The game clock or the inning is also on the screen, so that helps her to follow the flow of the game.

It was a blessing that Terry grew up a sports fan.

My kids and I have always been a fan of Terry’s. She was a great Mom when the kids were younger, instilling in them good morals along with a fun-loving nature. She took great care of them when I was away from home with work.

Now the tables have turned. Now they come home and take care of her when I am away from home.

I have always been a big believer in karma. Good intent and good deeds contribute to good karma and future happiness. Bad intent and bad deeds contribute to bad karma and future suffering.

Because Terry was such a great mother to her kids, they were brought up right and have continued to do the right thing. And now, the right thing is to help take care of their mother.

Whether it is Mother’s Day or not.

Until next time, I hope you and your family had a great Mother’s Day. At our house now, every day is Mother’s Day.

Bud

May Day

By Bud Focht

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

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 this date. 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 year, since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, that I wanted to call out Mayday-Mayday-Mayday. In the last 12 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 130 years ago, a peaceful rally in support of workers striking for an eight hour day that turned violent.

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

My wife Terry has 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 job 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 two oldest 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 summer Day Camp. Basically she got paid to play with kids outside all summer. Again, it was great for her and our kids.

But all good things have to come to an end sooner or later. 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.

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 has worked in a doctor’s office where they help people lose weight and keep the weight off. The running joke in the office is that Terry is 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 are coming to an end. She can no longer perform the duties she once was hired to do. She is now limited to working one day a week, about five hours each Friday. Most of the responsibilities she once had are tasks she can no longer perform.  Her cognitive impairment prevents her from performing them.

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 is so good for her. The brain is a muscle and it needs to be exercised. Working was very good for Terry.

On the plus side, not working will give Terry more time with me during the summer.

From the end of August until the end of May I cannot take any vacation (except for emergencies) due to my heavy work schedule and since I’ve been at this present job for 34 years, I have compiled quite a few vacation days. So during the summer, to make up for my lack of weekends during the year, I take Fridays and Mondays off.  

For the past few summers Monday has been our beach day. The Jersey Shore (not the one with Snooki and the Situation or any of the other low-lifes in that MTV reality show but the Atlantic Ocean) is only an hour’s drive from our front door to the beach, so we make that commute every Monday that we can.  We don’t ever go to the Shore on weekends, though. What was it that the great orator Yogi Berra once said about a restaurant he used to frequent? “Nobody ever goes there anymore, it is always too crowded.”

So on this May Day, while others are honoring the working class and celebrating the arrival of spring, Terry is slowly bringing her working career to a close.  It is just another thing on the list of things that Terry can no longer do. It is sad, but something we saw coming.

Hopefully, with her lack of working we will be able to enjoy the upcoming spring and summer months more. We always have in the past, and we don’t know how many more we will have in the future.

Until next time, hope you had a great May Day, and have no reason to cry out mayday, mayday, mayday.

Bud

With a Little Help from My Friends

By Bud Focht

Hi, my name is Bud and like Billy Shears, I get by with a little help from my friends.

Billy Shears, a member of Sgt. Pepper’s Lonely Hearts Club Band and the alter ego of Beatle drummer Ringo Starr, is asked questions about the meaning of friendship and true love in the second song on one of the most famous rock albums of all time (the first rock album to ever win a Grammy for Album of the Year in 1968). 

Shears answers the questions put to him by saying that he “gets by with a little help from his friends.”

That is something that I have finally learned how to do.

It has been a year now since I have become a caregiver, after my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, and I am finally allowing others to help me with this labor of love.

At first I felt that, since Terry is my wife, my partner, that this responsibility rests on my shoulders and my shoulders alone. I was not about to out-source this job, this responsibility.

In my early research of this disease, along with the advice I was given by the neurologists and neuropsychologists, I was informed how much of a burden it could be for a caregiver.  But most of the reading I was doing was talking about people caring for a parent or a grandparent.  And I can see how that could become somewhat of a burden.

But the love between spouses, between partners, between soulmates, is so different, so unconditional, that I felt it would never be a burden to me. And I still feel that way. I never wanted to push any of my responsibilities onto my children, certainly not onto my friends.

But as Terry’s condition has worsened, and with my busy work schedule, it became more and more difficult for me to do it all. I needed help. Even though I wanted to more than anything, I just couldn’t be there for Terry 24 hours a day. 

In the beginning I tried, but in the beginning it was not a 24 hour job. Terry could still perform certain tasks, even though they were a bit tougher for her. She could still drive to local places. She could still prepare her own meals. She could still work. She could still do housework. She could still find ways to keep herself busy while I was at work or on a road trip.

That is no longer the case.

Every day I thank the Good Lord for my three terrific children and for the best friend that anyone could possibly have.

My kids are all grown, out of the house and have their own lives to lead. Asking them to travel 30 to 60 minutes to come home and help me was something I have fought all along. I wanted them to come home when they wanted to come home, not when I asked them to come home.

And they’ve been great. They come home many weekends to spend time with their mother, regardless if I am there or not. They don’t come home because I need them to come home, they come home because they truly enjoy being with their mother.

But with Terry having more and more difficulty performing the tasks that used to be so easy for her, I need the kids to help give her rides to places when I am not around. To fix her supper when I am working. To give Terry her medicine when I am out of town.

The other night Terry had a 7pm appointment. I could not get home from work until 7:30 that night, and without me asking, my oldest and dearest friend Jack volunteered to pick Terry up and take her. Terry was extremely grateful, as was I.

Up until that point Jack’s main role in this drama has been to try to keep me sane, to give me advice and to give me his undying support.

You can’t make old friends.

Other old friends, from my youth, my college days in Miami and from my years living in Rhode Island, have reached out to me with such great support. Old friends who had relatives, parents or parents-in-law, who have had this terrible disease. They have seen it and they have an appreciation for what we are going through.

Terry also has friends who are also helping us. Since Terry only works one day and about five hours a week, she is often home alone while I am working. Terry’s friends from her Bible Study have begun picking her up a few times a week and taking her out on Bible Studies.

When I come home from work I can honestly tell the difference in Terry on days that she has been out. The interaction is so good for her.

A lot of people feel sorry for me, feel sorry for Terry, for the shitty hand that we’ve been dealt.  But, honestly, I feel lucky.   Of course, not because of Terry’s EOAD, but because of the friends and family that I have supporting us during this chapter of our lives.

Obviously, it sucks. But the outpouring of love and help we have received has been nothing less than overwhelming.

In my early research it was the caregiving that was supposed to be overwhelming.

As Terry’s condition continues to deteriorate, I am sure I will be needing more and more help. Especially next fall when, after a relaxing and enjoyable summer, my work schedule again picks up.

I will try to keep the words of Billy Shears in mind. And three years before anyone ever heard of Sgt. Pepper, the Lads from Liverpool made a movie, a cross between the Marx Brothers “Duck Soup” and a James Bond movie, entitled Help!

In the title song, John Lennon wrote:

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone I’m not so self-assured

Now I find I’ve changed my mind and opened up the doors.

I have opened up the doors, to my family and friends, for their help in my caregiving. At first I was reluctant, but those days are gone. Now, whatever I can do to help Terry, to help make her life easier and more pleasant, I am doing. If that means relying on others, so be it.

Until next time, remember that in The End, the love you take is equal to the love you make. Create love and you will get love in return.

Bud

Helicopter Husband

By Bud Focht

Hi, my name is Bud and I think I may be a Helicopter Husband.

You have probably heard the expression Helicopter Parent, describing a parent who pays extremely way too close attention to their kids’ experiences and problems, especially when the kids are older, old enough to handle things themselves.

Helicopter, as in they hover overhead.

Ever since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, I have done more and more for her, including making 90 percent of her decisions. I am always hovering overhead.

Part of that is because she can no longer do many things that she used to. Terry has not driven a car since fall and I doubt will ever again. She could probably operate a vehicle if she had to, but she no longer knows how to get anywhere, and she is no longer capable of figuring out how to get somewhere.

Terry can no longer cook. Following directions from a cookbook has become a major struggle and she doesn’t remember her own old recipes. The ability to use the stove, oven and microwave unsupervised no longer exists as well.

She is able to do the laundry but sometimes not without a few hiccups. Terry can still iron, thank the Good Lord, because that is the only chore I have not done. I changed as many diapers and washed as many dishes over the years as Terry, but ironing for some reason was never something I could master, or try to master, or even try to do. I might have ironed twice in my life.

Speaking of dishes, Terry can still wash them, but sometimes after she dries them she doesn’t know or remember where to put away certain pans or glasses.

Terry has never taken her own Alzheimer’s medicines in the year she has been on them. I decided on Day One that she was not going to have to try to remember if she took them or not. I give them to her every morning. The few times I was out of town my daughter gave them to Terry and because of my hovering my daughter would sarcastically text me a picture of Terry taking her meds.

When Terry sets up meetings or appointments with her friends and her Bible Study partners, I have to be involved, so I can write them down for Terry, put them on the calendar for her. Remember them for her.

Members of Terry’s Bible Study group have been great. A few of them pick Terry up on different mornings and take her to a Bible Study. The interaction and just getting out of the house is great for her.

What was it that Johnny 5 said back in the 1980s in Short Circuit?  “Input!”

When I am away from Terry I fear that she cannot be left alone for any length of time. I know she doesn’t like to be alone. I always give her lists of things to do, to keep her busy. And she always has music playing. Input.

I began wondering if maybe I was aiding her decline by doing so much for her.  Maybe if I made her try to do more things herself then she would be able to do more things on her own, when I am not home, for a longer period of time.

What is that expression; Give a man a fish, he eats for a day. Teach a man to fish; he’s off every weekend with his buddies drunk on a boat. 

Or something like that.

The big difference is, with Terry, I’m not really teaching her anything, nothing that she doesn’t already know, or used to know. At the very most I would be trying to help her muscle memory kick in.  Things that she has done a thousand times, but is now forgetting how to do. Maybe if I make her do them, or guide her through doing it, rather than me doing it for her, it might help?

For a while, anyway.

That’s the worst part. Things are only going to get worse. Last year the doctors told us it was important to get on the meds as soon as possible because it would give us an extra year or two. A ‘year or two’ of what, I didn’t ask. I was afraid to. But I got the idea.

So I think that is why I want to do so much for Terry. Sure, some things she can’t do. But there are some things she could do if she had to, but she would probably struggle.

Well, I don’t want her to struggle. Not now. Not yet. There is going to be a shit load of struggle in the years to come, so if I can prolong that as much as possible, I will. Even if that means I am a Helicopter Husband.

I remember about a year ago when Terry was crying. I tried to console her and she said “It is just so hard.” Talking about life in general.

I don’t think I’ve seen Terry cry since then. I would hope that my hovering has helped prevent it.

Terry said it was just so hard.

Well, I don’t want it to be so hard for Terry. So the least little things I can do for her, fix her lunch, pour her a glass of green tea, anything, I’m doing it.

Except ironing. As Meatloaf said: “I will do anything for love, but I won’t do that.”

When we were told it was Bucket List time last summer Terry and I went to Kauai, Hawaii. While there we took a helicopter ride over the beautiful island and it was one of the coolest things we ever did. Brad was the name of our pilot and was extremely entertaining and knowledgeable of the island.

The rest of the week every time we saw one of those tourist helicopters hovering overhead we would always say “Hi Brad” to it.

In the months to follow there was a running joke every time we saw a helicopter, no matter what state we were in, I would ask Terry “do you think that was Brad?” and she would remember the great time we had last summer.

Showing Terry a great time and helping her remember great times. That is my priority. I admit, I pay extremely way too close attention to Terry’s experiences and problems. If that makes me a Helicopter Husband, I think I am okay with that.

Until next time, Brad and I will probably still be hovering,

Bud

Don’t Stop the Music

By Bud Focht

Hi, my name is Bud and like Kiki Dee, I’ve got the music in me.

Like most kids growing up in the 1960s and ‘70s, I have always been heavily into music.  Listening to it, not playing it.  Hearing the Sgt. Pepper album on head phones for the first time was a profound moment in my life.

I grew up on the three B’s; the Beatles, Bob Dylan, and the Bee Gees (BEFORE they went disco, songs like Massachusetts, To Love Somebody). And I am a big enough man to admit that yes, when I was 10 years old I was into the made-for-television band, the Monkees. But in my defense, that group of actors pretending to be a band had two excellent song writers (Tommy Boyce and Bobby Hart) who came up with some very good tunes.

But the closest I ever got to listening to Country Western music when I was younger was listening to John Denver. But I considered that closer to folk music.

Country Western, to me, was Roy Rogers singing “Happy Trails” or Dolly Parton, although I did like the Man in Black, Johnny Cash.

But Country Western had too much Twang to it. To me it was Hee Haw.

My son had the most diverse iPod in the world, with songs from the 60’s and 70’s, along with current songs from country, rap, pop, rock and reggae. A few years ago he turned my wife Terry on to country music, taking her to a George Strait concert.

Ever since then we’ve listened to a lot of country music in our house and I have to admit it has grown on me. The last concert I went to was the Zac Brown band.

But the biggest impact music eventually has had on me is the fact that it became a common denominator for me and Terry.

One of us will yell out “Kenny Chesney” every time one of his songs comes on the radio and it has become a running joke.

Seeing Terry respond like she is on a game show, trying to shout out the answer as quickly as possible, is funny to both of us.

Henry David Thoreau once said “Music does bring people together. It allows us to experience the same emotions. People everywhere are the same in heart and spirit.”

In my modest studies of the human brain and memory, ever since Terry was diagnosed with Early Onset Alzheimer’s Disease, I have read about people who can no longer speak in full sentences but can sing an entire song. People with advanced memory loss who don’t know what town they are in but can sit down and play a song on the piano.

It turns out that music stimulates the mind, and that the brain processes music in multiple areas, some areas that are not damaged by Alzheimer’s.

Music can be a great medium for reminiscing with people with memory loss. Many memories can come from melodies. Many times Terry cannot recall details from certain events in the past but certain songs and types of music can stimulate her brain to recall some of the emotions and memories of days past.

So now Terry’s day always has a soundtrack to it when she is home. The radio or CD player is always on when she is home alone, and often when I am there as well. It can bring her moments of enjoyment, familiarity and well-being.  It can affect her mood, although she is almost always upbeat.

Albert Camus, a French Nobel Prize winning author once said “A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”

That goes for caregivers as well. At least for me.

Although Terry is quiet, even more quiet than she used to be, she can still communicate. There will be a time in the not so distant future where that will no longer be the case. But my reading tells me that music can be a powerful bridge helping caregivers like myself to reach their loved ones when Terry is no longer able to communicate with words.

I’ve read how Alzheimer’s can create strangers out of loved ones. I refuse to ever let that happen.  I have read that studies have been made where Alzheimer’s patients who listened to music three hours a week over a 10-month period actually had improved cognitive test scores.

I’m not asking for miracles. I just want Terry to be happy and to have as many good memories as possible. And to be able to retrieve those memories, even without the help of her hindered hippocampus.

Nostalgic memories involve the hippocampus, but listening to music involves the auditory pathways, auditory cortex and sensory association cortex.

Slowly, inevitably, Alzheimer’s robs people of profound memories, like the names and faces of loved ones. There are those who believe that using music we can mitigate the effects of Alzheimer’s.

Somebody once said “Words make you think a thought. Music makes you feel a feeling. A song makes you feel a thought.”

I’m not sure what I feel when I listen to music, but I know I feel great when Terry hears a familiar song and has a positive memory associated with it.

These days I am trying to create more positive memories associated with music, like playing the Kenny Chesney game at home or in the car with Terry.

It turns out that, like Kiki Dee, Terry has the music in her too. 

Like Bob Marley said, “One good thing about music, when it hits you, you feel no pain.”

Until next time, keep the music playing and feel no pain.

Bud

Cross to Bear

By Bud Focht

Hi, my name is Bud and like most people I have a cross to bear.

I have a heavy burden, heavy responsibility, a problem that I must cope with. A cross to bear.

Ever since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, people have come up to me, written me or called me with their condolences. I have often responded to them by saying “We all have our crosses to bear.” 

And that’s true. We all have our problems.

The term “a cross to bear” obviously comes from the fact that Jesus had to carry the very cross he would eventually die on all the way up to the hill at Calvary which was miles away. The Stations of the Cross are based on it.

When I was little and I saw the INRI on the top of the crucifix I thought Jesus might have died IN Rhode Island, not knowing INRI meant Iesus Nazarenus Rex Iudaeorum. (Jesus of Nazareth, King of the Jews for those of you who didn’t take Latin).

I am reminded of that this Holy Week as Good Friday and Easter Sunday are approaching.

Everyone has a burden that they must cope with in their lives. Some burdens seem harsher than others. Dragging a tree for miles up a hill so people can nail you to it and then crucify you on it makes most problems we have seem not so bad, don’t you think?

There is a common belief, one that I used to support, that goes something like this:  If you formed a circle of people, and everyone making up the circle could take their worst problem and put it in the middle, and then go around the circle and everyone had to pick one problem to have, most people, seeing what others have to deal with, would take their own problem back.

I used to believe that. I’m not so sure anymore. If I put into the middle of the circle the fact that my wife, my best friend, my partner, has Alzheimer’s, I can’t imagine selecting that from the list of other problems when it was my turn to pick.

To do that I’d have to be put in a circle with a pretty down-on-their-luck crowd. With my luck Jesus Himself would be in that circle. 

No, I couldn’t take His problem.

And speaking of Good Friday and Easter approaching, so is Passover. That is someone else who would probably end up in my circle, someone who did not put blood on their door and lost their first born male to the Angel of Death.

No, I couldn’t take his problem.

There would probably even be a dog in that circle, a flea-bitten mutt that was blind in one eye, missing half an ear, had just three legs, was accidently neutered and had a torn-off tail. Goes by the name Lucky.

We’re getting closer to problems I would take over mine.

There would have to be someone in that circle I could switch with. I can’t imagine too many problems I would pass up for taking my own back. It is a burden I would not place on anyone.

Seeing your partner, your best friend, slowly lose more and more of her independence in front of your eyes is such a helpless feeling. It is scary, it is sad, it is frustrating.

The only thing that has gotten me through this first year is the fact that Terry is so upbeat. She does not get scared, she does not get sad, and she does not get frustrated. She even has a sense of humor about it, saying with a laugh to people when she has a problem doing something “I’m demented.”

Which brings me back to that damned circle.

What if Terry was in my circle? What if she threw being “demented”  into the middle?  Which problem would I take, mine of being a caregiver and seeing my best friend go through this, or go through it myself as an Alzheimer’s victim?

My first instinct was the same as if I was thinking of my kids. When they were little I’d wish I could suffer their pain for them when they needed stitches or broke a wrist or needed surgery. I would switch places with them in a second if I could have.

But if I switched places with Terry, switched our problems in that circle, she would have to be my caregiver. (She would also have to be the breadwinner, something she has never been. She has always worked, but mostly less than 40 hours a week so she could be there for the kids.)

Now she would have to be there for me. I don’t know if I would want her to be in that situation.

Because right now Terry is handling her Alzheimer’s better than I am. It doesn’t seem to get to her the way it sometimes gets to me. She seems happier to me than I am.

There were no truer words ever spoken than : “Happy wife, happy life.”

As this horrible disease progresses, I might feel differently about what problem I would take out of that circle. My circle that probably would also have Job in it as well. (that’s pronounced jobe for you pagans out there, as in ‘patience of Job’ because of all of the troubles beset upon him in the Bible).

So as Good Friday, Passover and Eastern Sunday arrive, I will try to put my problems and those of my best friend Terry in perspective with others, and see how others handle their problems.

Terry is handling them better than I am. Maybe, probably, others are too. What would Jesus do? What would my Terry do?

What am I going to do?

Until next time, Happy Easter

Bud